living a good life with arthritis
TRANSCRIPT
LIVING A GOOD LIFE WITH ARTHRITISMANAGING PERSONAL GOALS TO IMPROVE PSYCHOLOGICAL HEALTH
Roos Y. Arends
LIVIN
G A
GO
OD
LIFE W
ITH A
RTH
RITIS M
AN
AG
ING
PER
SON
AL G
OA
LS TO IM
PRO
VE
PSYC
HO
LOG
ICAL H
EA
LTH R
oos Y. A
rend
s
Rosa (Roos) Ymkje Arends holds a Master of Science in Psychology and com-
pleted her Ph.D. at the Department of Psychology, Health and Technology at the
University of Twente, The Netherlands. Her Ph.D. thesis focuses on the role of
goal management for the psychological health of people with arthritis.
The thesis describes the relationship between goal management and psycholo-
gical adaptation to arthritis and the development and evaluation of a goal ma-
nagement programme for people with arthritis and mild depressive symptoms.
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LIVING A GOOD LIFE WITH ARTHRITIS
Managing personal goals to improve
psychological health
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Thesis, University of Twente, 2016
ISBN: 978-94-91602-69-6
© R.Y. Arends, 2016
Cover design: Sinds 1961 Grafisch Ontwerp, Ede (www.sinds1961.nl )
Printed by: Printservice Ede, Ede, The Netherlands
The studies presented in this thesis were financially supported by Stichting Reumaonderzoek
Twente and the Institute of Behavioural Research of the University of Twente.
The printing of this thesis was financially supported by Sanofi Genzyme, NHL Hogeschool,
and Essenburgh Training & Consultancy.
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LIVING A GOOD LIFE WITH ARTHRITIS
Managing personal goals to improve psychological health
PROEFSCHRIFT
ter verkrijging van
de graad van doctor aan de Universiteit Twente,
op gezag van de rector magnificus,
prof. dr. H. Brinksma,
volgens besluit van het College voor Promoties
in het openbaar te verdedigen
op donderdag 6 oktober 2016 om 16.45 uur
door
Rosa Ymkje Arends
geboren 24 oktober 1984
te Kollumerland en Nieuwkruisland
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Dit proefschrift is goedgekeurd door:
Prof.dr. M.A.F.J. van de Laar, promotor
en
Dr. C. Bode en Dr. E. Taal, copromotoren
Samenstelling promotiecommissie
Promotor Prof. dr. M.A.F.J. van de Laar Universiteit Twente,
Medisch Spectrum Twente
Copromotoren Dr. C. Bode Universiteit Twente
Dr. E. Taal Universiteit Twente
Commissie Prof. dr. R. Geenen Universiteit Utrecht
Dr. M.S.E. van Hout Medisch Spectrum Twente
Prof. dr. A.V. Ranchor Rijksuniversiteit Groningen
Prof. dr. P.L.C.M. van Riel Radboud Universitair Medisch Centrum
Prof. dr. R. Sanderman Universiteit Twente,
Rijksuniversiteit Groningen
Prof. dr. G.J. Westerhof Universiteit Twente
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Contents
1 General introduction 7
PART I 27
The relationship between goal management and psychological adaptation
to arthritis
2 The role of goal management for successful adaptation to arthritis 29
3 The longitudinal relationship between patterns of goal management and 53
psychological health in people with arthritis: The need for adaptive flexibility
4 Exploring preferences for domain-specific goal management in patients with 79
polyarthritis: What to do when an important goal becomes threatened?
PART II 103
The effect of a goal management programme on the psychological health of
people with arthritis and mild depressive symptoms
5 A goal management intervention for polyarthritis patients: Rationale and 105
design of a randomized controlled trial
6 A goal management intervention for patients with polyarthritis and mild 135
depressive symptoms: A quasi-experimental study
7 A mixed-methods process evaluation of a goal management intervention 157
for patients with polyarthritis
8 Summary and discussion 187
Dutch summary (Nederlandse samenvatting) 213
Acknowledgements (Dankwoord) 219
About the Author 225
List of publications 227
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1
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1General introduction
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GENERAL INTRODUCTION
Introduction
A few years ago, Jeannette was diagnosed with rheumatoid arthritis. After some difficult
years, the inflammation finally went into remission due to proper medical treatment.
During this rough period, she abandoned her job as a secretary at an estate agency. Once
the arthritis went into medical remission, Jeannette’s energy finally returned, but not to her
former level. Since the beginning of her illness, Jeanette has worried about her husband
Jan and their two adolescent daughters. When the oldest daughter moved out to live with
her boyfriend, Jeannette could not resist calling her several times a day, checking to ensure
that she was all right or in need of help or advice. Jeannette’s controlling behaviour was
increasingly causing tension in the family.
For years, Jeannette and Jan had been playing tennis with friends every week and enjoying
coffee afterwards. Unfortunately, they had to more often cancel this engagement due to
Jeannette’s rheumatic disease. Jeannette became more unhappy after leaving her job, and
with the loss of this social activity and contact, she felt as if she were losing a grip on her life
and didn’t know how to stop it.
One day while running errands, Jeannette accidentally met her old tennis friends. During
the conversation that followed, she realised that they could plan less intensive activities
together such as taking a walk or visiting a museum. The friends responded with enthusiasm
to her suggestion and they immediately set a date for the following week. Back home,
Jeannette browsed the internet searching for suitable activities and by accident visited the
website of the town’s historical windmill. Seeing a call for new volunteers for their adjacent
shop, she at first hesitated – It might be too hard with her arthritis? – but then contacted
them and made an appointment.
A few weeks later, she now feels completely at home in the friendly group of volunteers at
the mill’s shop. Although being the youngest volunteer, she enjoys the new social contacts
and the chance she has to contribute. The atmosphere at home has significantly improved as
Jeannette’s need to control her family members has diminished. She has less time to spend
worrying and feels less need to track her husband and daughters all day. In addition, she has
her own stories to tell after a day at the shop. Her eldest daughter sometimes even calls her
to chat when she has not heard from Jeannette for some days.1
1 Adapted from: Arends, Bode, Taal & van de Laar, 2012. Doelbewust! Trainershandleiding & Deelnemers
materiaal [Right on Target. Trainer’s Guide and Participants’ Material]. Universiteit Twente & Reumacentrum
Twente.
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CHAPTER 1
The World Health Organization [1] defines health as “a state of complete physical, mental
and social wellbeing, and not merely the absence of disease or infirmity.” This definition,
however, has received criticism for being too static, strengthening the medicalization of
society, neglecting the human capacity to cope, and hampering operationalisation and
hence health measurements [2-5]. Alternative definitions of health have been suggested,
including the one by Huber and colleagues [2] who view health as the ability to adapt and
to self-manage in the face of social, physical and emotional challenges. This description
explicitly emphasizes a more dynamic view, as it embraces resilience and the ability to cope
and maintain one’s integrity, equilibrium and sense of wellbeing [6]. The focus on resilience
and affiliated factors as supporting mechanisms to improve wellbeing originates from the
field of positive psychology. This scientific field stimulates research on two approaches, that
is, health as the ability to be resilient and the search for what makes a person flourish and
resilient [7-9]. These two approaches to wellbeing are becoming particularly necessary as
the number of persons with a chronic disease such as arthritis rapidly increases due to a
rise in aging populations and also because people with one or more chronic diseases are
living longer [10,11]. In turn, health care systems are facing different, long-term demands
as compared to the acute life-threatening diseases for which these systems were originally
designed and are still organized around [10]. For the most part, the patients themselves,
their family or their caregiver spend the majority of time and effort caring for the main
part of their illness [12]. While patients spend approximately 5,800 waking hours per year
caring for themselves and their condition, they will only spend few hours with health care
professionals. This implies that patients need the skills to care for themselves; they need the
confidence to deal with day-to-day decisions about their health; and above all, they need
the ability to live a healthy and satisfying life despite any chronic condition(s) they might
have.
Polyarthritis
Polyarthritis is collective term for a variety of chronic rheumatic disorders which typically
involve inflammation in five or more joints and an association with an auto-immune
pathology. Characteristic of many rheumatic diseases are periods of worsening disease
activity, unpredictable and sudden flares consisting of inflammation and swelling in the
joints, and unpredictable disease prognosis [13,14]. The predominant diagnoses are
rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis. Rheumatoid arthritis
(RA) has received the most research attention as it is a common form of polyarthritis, with
a prevalence of 0.5 - 1% in the adult population in industrialized countries [15]. In general,
patients experience sustained daily stressors, such as pain, fatigue, impaired physical
functioning, disability, deformity, distress and a reduced quality of life [16,17]. The efficacy
of pharmacological treatment has improved significantly in this century, moving the primary
focus of health care from care to cure. However, some patients never reach remission, and
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GENERAL INTRODUCTION
the development of new pharmacological treatment is needed to help all patients.
Among other struggles, a chronic disease such as polyarthritis poses the challenge upon
an individual to achieve and maintain psychological health. Psychological health can be
described as the presence of wellbeing and the absence of distress [18,19]. Throughout this
thesis, a set of outcomes is used to provide a multicomponent view of psychological health.
These indicators of wellbeing are: the experience of a purpose in life, positive emotions,
and satisfaction with social participation. Furthermore, symptoms of depression and anxiety
are used to indicate distress. Earlier studies on the psychological health of persons with
polyarthritis have mostly focused on depression. Interest in the symptom anxiety in this
patient group has augmented in recent years while the presence of wellbeing has received
little research attention.
Research on distress has shown that persons with polyarthritis, when compared with
healthy controls, experience elevated levels of depressive mood and anxiety [20,21]. Studies
in RA populations indicate that 20 - 40% suffer from heightened depression and anxiety
levels [20,22-26]. Alongside treatment of physical symptoms, it is necessary to concentrate
on these symptoms of distress to improve overall wellbeing [27].
Based on the ‘classic’ biomedical framework, for decades research has focused on
identifying pathways between disease symptoms and resulting functional limitations, and
decreased psychological and social functioning. This focus has led to the understanding that
symptoms, uncertainties and consequences of the disease, together with pro-inflammatory
cytokines, are risk factors for the development and maintenance of mood disorders and
lower wellbeing [28,29]. A relatively recent improvement in treatment approach can be
found in personalized medicine, where individual profiles of genes, biomarkers or other
phenotype information inform pharmacological tailored treatment for an individual patient
[30,31].
In contrast to the biomedical approach, the biopsychosocial approach is holistic and
comprehensive, emphasizing and including social and psychological dimensions of the
illness [32]. Taking these dimensions into account enables a more complex but also more
comprehensive view of health and disease and their impact on the individual [33]. Studies
adopting the biopsychosocial approach show that suboptimal psychological and social
wellbeing is related to an increased impact of the disease. For example, in a large population
survey, psychological distress among arthritis patients was related to poorer physical health
[34]. Furthermore, psychological distress is known to increase health care utilization and
medical costs [35] and to negatively influence medication adherence and response to
treatment [36].
Person-centred care
The cautious shift from a biomedical to a biopsychosocial model of health has stimulated the
emergence of patient-centred care [37-39]. Patient-centred care is based on a deep respect
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CHAPTER 1
for patients as unique living beings and the obligation to care for them on their conditions
[40]. As Epstein and Street (p. 100) [40] state: “Patients are known as persons in the context
of their own social worlds, listened to, informed, respected, and involved in their care – and
their wishes are honoured (but not mindlessly enacted) during their health care journey.”
Patient-centred care is an increasingly applied concept in the care for patients with chronic
diseases over the last decades. Although established as a whole-system approach in research
and theory, patient-centeredness is often limited to patient-professional interactions during
consultations [41,42]. This implies that components of the patient-centred approach that are
considered ‘useful’ are viewed as complementary to the biomedical model. Although health
professionals support person-focused values, care processes largely remain routinized and
ritualistic and lack opportunities for the formation of meaningful relationships between
patients and health professionals [43,30]. As a consequence, patient-centred care too often
becomes stripped down to a disease-oriented and visit-oriented approach [41]. Often,
the terms patient-centred care and person-centred care (or person-focused care) are used
interchangeably [37]. Throughout this thesis, the term person-centred care (as well as
person-focused care) refers to the whole package of principles and activities that forms
around the life of a person and functions in the biopsychosocial framework [44]. Thus,
person-centeredness does not refer to a biomedical disease-oriented framework, but to a
framework that includes prevention and management of the patient’s problems in multiple
domains over time [41,45,44,31,30].
The principles of person-focused care are highly applicable to the care of arthritis patients
(as well as for all patients with chronic diseases). Supporting self-management and shared
decision making are at the heart of person-centred care [46]. Patients should be equal
partners in the planning, development and evaluation of care in order to assure it is most
suitable for their needs [46]. By making the person more responsible for his or her own care,
self-efficacy and self-management can be enhanced and supported [47]. Care should be
focused on the problems or health concerns as they are experienced by a person in his or her
context (for example, pain, fatigue or disabilities in the workplace caused by the disease),
and treatment should be targeted accordingly [41]. Health services should promote control,
independence and autonomy for the patient, their caregivers and families [46].
Existing selfmanagement programmes
Self-management programmes are central in a person-focused approach to care and
indispensable to accomplishing effectiveness and efficiency by empowering patients.
However, benefits of self-management interventions for patients with arthritis in disease-
related terms and psychological outcomes are disappointing, especially in the long-term
[48-51]. Systematic reviews concerning self-management interventions for patients with
arthritis show small to moderate results on outcomes, that are, nevertheless, short-lived
[i.e. 52,53,49,48]. The necessary identification of effective ingredients is complicated by
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GENERAL INTRODUCTION
the use of various and numerous outcomes and a lack of clarity about the contents of an
intervention [48,49]. One systematic review and meta-analysis has indicated that differing
results of self-management programmes can be traced back to theoretical underpinnings
or the lack thereof [54]. The most successful interventions in terms of a prolonged
increase of psychosocial and disease outcomes are based on social cognitive theory [55]
and systematically include more self-regulation techniques [54,56]. It follows that self-
management interventions should be built on a solid theoretical base in order to generate
prolonged differences in the lives of people.
Shifting from diseasecentred to personcentred selfmanagement
Self-management interventions need to be taken one step further, and this can be
accomplished by incorporating a person-centred view. Many existing self-management
interventions focus above all on the management of the disease and bodily symptoms of
the disease, while from a person-focused approach, the whole life of a person is the centre
of attention. Two common characteristics of self-management programmes - the focus on
disease management and the predetermination of content and goals in interventions - are
described below. This discussion is followed by an alternative approach that derives from
the person-centred view.
Concerning the focus on disease management, traditional self-management interventions
primarily focus on illness-related aspects. However, being diagnosed with arthritis implicates
changes in many, if not all, domains of life, as Jeannette’s story at the start of this Chapter
illustrates. Major pre-determined aims might be reducing pain and fatigue, but for most
patients, other aspects of life may be more important. For example, qualitative research
revealed arthritis patients as having difficulties with maintaining or attaining goals in several
other life domains, including work, leisure activities, social relationships and domestic tasks
[57,58]. Programmes aimed at self-managing arthritis should, therefore, broaden their
scope of life domains and recognize the interplay of all domains. In addition, programmes
should not only focus on optimization of (physical) functioning but also on aspects such
as motivation and meaning. To stimulate effective self-management, the current focus of
providing information on symptom management and lifestyle choices needs to shift to a
more collaborative model, in which patients are proactive in identifying areas that could be
improved for their own self-management [47,37].
Concerning the second common characteristic of traditional self-management programmes,
their aims are typically predefined according to treatment guidelines and, as such, do not
necessarily relate to the goals of the participants or their domains of personal importance.
It has repeatedly been demonstrated that only internalized goals produce considerable
effects in terms of life style changes, medication adherence and disease management
outcomes [59-61]. Despite this, traditional self-management programmes focus on goal
attainment and goal maintenance, for example, in the Arthritis Self-Management Program
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CHAPTER 1
people are encouraged to perform physical exercises regularly [62]. Pursuing an unrealistic
or unattainable goal may result in reduced mental and physical health and wellbeing
[63-65]. While such advice might be logical and useful for most arthritis patients, it is not
person-focused when it is offered indiscriminately to all participants, as it is not based on
personal goals or needs, but instead on a clinical point of view. One of the four principles
of person-centred care is: “supporting people to recognize and develop their own strengths
and abilities to enable them to live an independent and fulfilling life” (p. 6) [37], from
which it follows that a self-management programme should be built on the principles of
resilience and empowerment. This implicates that a self-management course should provide
individuals with the methods to best influence their own lives, leaving the decision of what
to influence or change to the patients themselves.
Goal-based coping
In summary, the basic principles upon which self-management interventions should be built
are: a solid theoretical base in order to cause long-term effects, a focus on a collaborative
model to enhance resilience and empowerment, and methods to cope with personal goals.
Useful insights for designing interventions around personal goals stem from developmental
psychology and psychogerontology. Scientists have observed that people are able to
maintain a stable level of wellbeing and a sense of personal efficacy in old age, despite
the accumulation of aversive changes and deteriorating health [66]. This phenomenon
is referred to as the disability paradox [67], and it shows similarities with the process of
successful adaptation to a chronic disease, described as an ongoing process of finding
equilibrium in a situation that constantly changes [68]. Note also the similarities of these
findings to the new definition of ‘health’ as previously quoted [2]. Successful adaptation is
closely linked to resilience, a concept that is described in various ways [69], for example, as
achieving a positive outcome in the face of adversity [70], as an outcome or a process [71],
or as the ability to recover from stress or adversities [72]. In the case of chronically ill people,
the latter conceptualisation might be most appropriate. Coping processes and mechanisms
related to resilience can lead to a variety of developmental trajectories, i.e. more or less
successful outcomes of adaptation and health [73].
The perspective of self-regulation provides a useful framework for studying the mecha-
nisms underlying resilience and adaptation in the context of chronic disease and disability
[74,75]. Self-regulation models assume most human behaviour to be goal-directed, and
progress or failure in goal attainment has affective consequences [76,77,59]. Several theories
describe adaptive self-regulatory processes [78-80]. These processes commonly share the
human capacity to shape one’s development within the context of one’s own strengths and
limitations by means of balancing between the striving towards attainable goals and the
adjustment of goals that are no longer feasible [75].
Goals play a fundamental role in wellbeing as they imbue life with meaning and provide a
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GENERAL INTRODUCTION
structure within which one can define life [76,80-83]. Maintaining and attaining achievable
goals can offer satisfaction, at least as long as goal attainment remains feasible. For various
reasons, goals may become increasingly difficult to pursue or an important goal may
become no longer feasible. In some instances people are able to resolve this incongruity by
exerting more effort towards reaching a goal or by increasing their commitment to the goal
[84]. But when a major goal is no longer feasible or when an unrealistic goal is pursued, a
negative influence on a person’s wellbeing can occur, ultimately leading to a reduction of
one’s wellbeing and mental and physical health [63-65].
Goal management strategies intend to minimize discrepancies between the actual
situation and a person’s goals. Therefore, such strategies can be seen as possible ways to
react to difficulties encountered along the path towards a goal. Two existing models of goal
management focus on several goal management strategies (see Table 1). The first is the dual-
process framework that incorporates both assimilative and accommodative modes of coping
[85,65,86]. In the assimilative coping mode (strategy of goal maintenance) active attempts to
alter unsatisfactory life circumstances and situational limitations are carried out to maintain
goals. A shift from the assimilative to accommodative process is thought to occur when
goals exceed available resources or become unattainable [75,87,88]. Accommodative coping
(strategy of goal adjustment), on the other hand, occurs when goals are adjusted to match
the personal boundaries of what remains possible. Self-evaluative standards and personal
goals are revised in accordance with perceived deficits and losses. The accommodative
coping mode helps to reduce feelings of helplessness and to preserve a sense of efficacy [75].
The second model focuses on goals that are experienced as no longer attainable; this
Table 1 The Dual Process Framework and Goal Adjustment Model: Authors, strategies and descriptions
Theory and description Authors Strategy Description
Dual-process framework: Brandtstädter & Goal maintenance Conscious actions aimed at adjusting
Two modes or self-regulation Rothermund, 2002; (assimilative coping undesirable situations so that
processes that are intended to Brandtstädter, 2009. mode) important goals can be retained.
decrease discrepancies between Goal adjustment Modifying or abandoning an
the actual situation and the (accommodative unattainable goal. This is achieved by
desired situation coping mode) adjusting expectations and
preferences.
Goal Adjustment Model: Wrosch, Scheier, Goal disengagement The ability of a person to let go of an
Two separate self-regulation Carver & Schulz, unattainable goal and decrease the
processes that play a role when 2003; perceived importance of that goal.
the maintenance of a goal is no Wrosch, Scheier, Reengagement in The identification of new, alternative
longer possible, i.e. a goal is Miller, Schulz, & new goal(s) goals and the initiation of activities
perceived as unattainable. Carver, 2003. aimed at these new goals.
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CHAPTER 1
goal adjustment model involves two strategies [78,83]. The goal disengagement strategy is
defined as the withdrawing of effort and commitment from an unattainable goal. This may
help a person avoid accumulated experiences of failure [89]. In addition, it may help a person
redefine the goal as not necessary for life satisfaction, and thereby allow him or her to accept
the inability of reaching the goal [80,78]. Another more long-term benefit of the use of this
strategy is the release of personal resources that can be deployed for beneficial effects in
other areas of life, alternative actions and new goals [78]. The strategy of reengagement
in new goals consists of the identification of alternative goals, the assignment of value
to these goals, and the initiation of activities directed toward goal attainment [83]. Goal
reengagement can improve subjective wellbeing by engaging in personally meaningful
activities [82]. Also, new personal goals that assume the place of abandoned goals seem
appositively connected to a person’s sense of identity [83].
Goalbased coping in patients with chronic diseases
Chronic disease can cause various degrees of severe goal interference for patients and
their close friends and families. The strategies from both coping models shown in Table 1
have been found to play an important role in adjustment to chronic disease and disability.
Numerous observational studies have indicated the roles the various goal management
strategies play when used by persons adapting to a chronic disease [74,90-96]. Studies with
diverse patient groups showed that goal-based coping tends to relate more positively to the
patients’ quality of life, lessens symptoms of depression, and provides more positive affect
and general adjustment to the disability [97-99]. A study among patients with multiple
sclerosis showed that low goal disengagement in combination with low goal reengagement
was beneficial for preventing symptoms of depression, whereas a combination of high goal
disengagement and low goal reengagement related to heightened symptoms of depression
[95]. A study with patients of peripheral arterial disease revealed that the pursuit of new
goals was of great importance for psychological wellbeing [93]. Maintenance of unattainable
goals and disengaging from goals without reengaging in new realistic goals is seen as risky
with regard to mental health [65,100,78].
Thus, research supports the assumption that goal management strategies are essential
for the adaptation to a chronic disease. Goal-based coping can facilitate adaptation to the
circumstances of the chronic disease by recognizing threatened personal goals, finding
optimal ways to deal with threatened goals in different life domains, and ultimately re-
engaging in new goals to ensure a positive future perspective. The flexibility of persons
to adjust their behaviour to an ever-changing environment is called ‘coping flexibility.’
Coping flexibility has primarily been investigated in populations with mental health
problems or work stress [101-103]. This ability to flexibly respond and cope with changing
situations and fluctuating levels of functioning might be especially beneficial for people
with a chronic disease to maintain their psychological health. However, most of the current
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GENERAL INTRODUCTION
knowledge regarding the applicability and usefulness of goal management strategies in
chronic disease populations, including those with polyarthritis, stems from cross-sectional
studies. Consequently, longitudinal studies are needed to gain more insight into the causal
relationships between goal interference, applied goal management strategies and their
effect on psychological health in persons with polyarthritis.
Adopting a self-regulation perspective that consists of multiple strategies that enable an
individual to cope with goal interference may be especially valuable in the context of a chronic
progressive disease like polyarthritis. It is likely that patients attribute a higher importance to
goals in one domain than in others (for example, Jeannette valued social activities as being
more important than tennis). Goals in some domains, i.e. prosocial goals and goals that
transcend the person, relate stronger to wellbeing than goals in other domains [104,105].
Authors have underlined the value of the assimilative and accommodative coping modes,
as they recognize the influence of contextual factors while also capturing their dynamic,
interactive quality [106,107]. As this complexity is difficult to assess with the standardized
self-reporting questionnaires commonly used in coping research, little knowledge of domain-
specific goal management actually exists [108]. In addition, measurement methods capable
of measuring domain-specific goal management are lacking. More insight into preferences
for goal management in specific domains may increase the knowledge base on effective
goal-based coping and interventions that aim to improve psychological health.
Aim and outline of this thesis
To conclude, the precise relationships between a range of goal management strategies and
adaptation to polyarthritis are unknown. Knowledge of effective goal-based coping can
help health care providers identify those patients with polyarthritis who are at risk of poor
psychological outcomes as well as guide the providers in how to best stimulate patients’
resilience. Person-centred interventions are needed to help persons with polyarthritis achieve
and maintain psychological health. Such a self-management intervention can be developed
based on goal-based coping. This thesis is organized around two research questions: The
first question focused on the relationship between goal management and psychological
adaptation to arthritis. The second question resulted in the design of a goal management
programme to stimulate adaptation to polyarthritis for people with depressive symptoms
and then studied the effects of this newly designed programme.
Question I: What is the relationship between goal management and psychological
adaptation to arthritis?
Part I of this thesis describes three studies that were conducted in order to answer this
first question. In Chapter 2, goal management was cross-sectionally related to adaptation
in a sample of persons with polyarthritis. An integrated model of goal management
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CHAPTER 1
was presented that combines four goal management strategies: goal maintenance, goal
adjustment, goal disengagement, and goal reengagement. The objective of this study was to
examine how these goal management strategies related to psychological distress (symptoms
of depression and anxiety) and wellbeing (purpose in life, positive affect, and satisfaction
with social participation) in this patient group in an observational setting.
Chapter 3 describes the objective of the next study that aimed to identify patterns
consisting of various strategies of goal management among persons with polyarthritis. To
date, no studies have been performed on the relationship between goal-based coping and
outcomes in terms of psychological health over time. This gap in the scientific literature
was addressed with the researched conducted on the cross-sectional and longitudinal
relationships between the patterns of goal management and psychological health were
studied. Subsequently, the development of a method to measure preferences for goal
management in several domains of life is described. As previously discussed, generally goal
management has been studied as a personal characteristic or general tendency. Previous
studies have indicated that the relationship between wellbeing and the pursuit of a goal
might depend on the domain from which the goal originates [104,105]. Therefore, a domain-
specific measurement method can enable research on this topic. Furthermore, it is unknown
whether preferences for goal management of persons with polyarthritis depend on the
domain from which a goal originates. Preferences for specific strategies might differ across
domains and situations in which goal interference is experienced. To research these areas,
a questionnaire to study domain-specific goal management was developed and applied in
a sample of persons with polyarthritis. Described in Chapter 4, the questionnaire consisted
of arthritis-related vignettes – hypothetical stories – wherein arthritis interferes with a
valued goal, and respondents were asked to provide possible solutions for the goal-related
problem. The objective of this study was to gain insight into how patients preferred to cope
with a threatened goal in a specific domain. This questionnaire enabled a comparison with
other measurement methods that focus on general tendencies of goal-based coping, and it
provided more insight into domain-specific coping preferences of persons with polyarthritis.
Question II: What is the effect of a goal management programme on the psychological
health of people with arthritis and mild depressive symptoms?
In Part II, three studies are described that were conducted in order to answer the second
question of this thesis. Building on the studies described in Part I, a group programme
based on goal-based coping was developed from a person-centred perspective. In Chapter
5 the rationale behind this programme is described, as well as the design of a trial into the
effect of the programme. A multi-centre study was executed to examine the effect of the
goal management programme in increasing adaptation. Both outcomes in terms of distress
(symptoms of depression and anxiety) and wellbeing (purpose in life, positive affect and
social participation) were examined. In Chapter 6 the results of this quasi-experimental trial
are discussed. For this study, the goal management programme was offered in four clinics to
PROEFSCHRIFT_ROOS_ARENDS_def.indd 18 30-08-16 10:05
19
GENERAL INTRODUCTION
persons with polyarthritis with mild depressive symptoms. Participants were compared to a
reference group on indicators of distress and wellbeing, and strategies of goal management
were studied as assumed mediators. To complement the effect study, a thorough process-
evaluation into the newly developed programme was executed using triangulation of data
from different methods, as described in Chapter 7. This chapter recounts the key components
of the goal management programme from the perspective of the participants and the
fidelity of the programme. Implications for person-centred interventions are also discussed.
Finally, Chapter 8 summarises and provides a general discussion of the results of the previous
chapters, followed by recommendations for practice and future research.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 19 30-08-16 10:05
20
CHAPTER 1
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The relationship between
goal management and
psychological adaptation
to arthritis
Part I
PROEFSCHRIFT_ROOS_ARENDS_def.indd 27 30-08-16 10:05
2
PROEFSCHRIFT_ROOS_ARENDS_def.indd 28 30-08-16 10:05
2The role of goal
management for
successful adaptation
to arthritis
R.Y. Arends
C. Bode
E. Taal
M.A.F.J. van de Laar
Patient Education and Counseling 2013, 93: 130138
DOI:10.1016/j.pec.2013.04.022
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30
Abstract
Objectives
Persons with polyarthritis often experience difficulties in attaining personal goals due
to disease symptoms such as pain, fatigue and reduced mobility. This study examines the
relationship of goal management strategies - goal maintenance, goal adjustment, goal
disengagement, goal reengagement - with indicators of adaptation to polyarthritis, namely,
depression, anxiety, purpose in life, positive affect, participation, and work participation.
Methods
305 patients diagnosed with polyarthritis participated in a questionnaire study (62%
female, 29% employed, mean age: 62 years). Hierarchical multiple-regression-analyses
were conducted to examine the relative importance of the goal management strategies for
adaptation. Self-efficacy in relation to goal management was also studied.
Results
For all adaptation indicators, the goal management strategies added substantial explained
variance to the models (R2: .07 - .27). Goal maintenance and goal adjustment were significant
predictors of adaptation to polyarthritis. Self-efficacy partly mediated the influence of goal
management strategies.
Conclusions
Goal management strategies were found to be important predictors of successful adaptation
to polyarthritis. Overall, adjusting goals to personal ability and circumstances and striving
for goals proved to be the most beneficial strategies.
Practice implications
Designing interventions that focus on the effective management of goals may help people
to adapt to polyarthritis.
CHAPTER 2
PROEFSCHRIFT_ROOS_ARENDS_def.indd 30 30-08-16 10:05
31
Introduction
The current study focused on the adaptation of people with polyarthritis to their disease.
Polyarthritis encompasses a variety of disorders, including rheumatoid arthritis (RA),
ankylosing spondylitis and psoriatic arthritis. Disorders classified as polyarthritis are typically
involved with inflammation in five or more joints and associated with auto-immune
pathology. Inflammation generally causes pain, fatigue and swelling in multiple joints. In
spite of medical treatment that may alleviate polyarthritis, for many patients, pain, fatigue,
disability, deformity, and reduced quality of life persist [1,2]. Patients often face difficulties
with attaining or maintaining goals in several domains of life, including work, social
relationships, leisure activities and domestic tasks [3,4].
Five key elements of successful adaptation to a chronic disease have been identified [5]:
(1) the successful realization of adaptive tasks; (2) the absence of psychological disorders; (3)
the presence of low negative affect and high positive affect; (4) adequate work/functional
status; (5) and satisfaction and wellbeing in various life domains. It follows that both the
absence of psychological distress and the presence of well-being are important for successful
adaptation to arthritis. In the present study two negative (depression, anxiety) and three
positive (purpose in life, positive affect, participation) indicators of adaptation are used, as
these are thought to be important issues for polyarthritis patients.
As a result of its high prevalence compared to healthy controls [6], depressive mood in
RA patients has gained much attention in the scientific literature. Moreover, research has
shown that RA patients tend to have increased levels of anxiety [7]. Previous findings also
revealed lower levels of purpose in life in patients with RA in comparison with healthy
populations [8]. Purpose in life - a central aspect of wellbeing - means: “the feeling that
there is a purpose and meaning in life, (…) a clear comprehensibility of life’s purpose, a
sense of directedness, and intentionality” (p. 1071) [9]. Positive affect, another indicator
of wellbeing, lowered the increase in negative affect when levels of pain were elevated
in patients with arthritis [10,11]. The experienced level of participation in society is also
an essential indicator of adaptation to arthritis, referring to a person’s involvement in life
experiences, such as socializing and performing one’s role in the context of the family.
Polyarthritis has been shown to negatively affect participation and work ability [12-14].
Lowered work ability or work loss can imply financial costs for society. For the individual
patient, it can mean loss of status, family income and social support [12].
Polyarthritis demands specific competencies by patients for successful adaptation. Due to
the absence of a cure, lifelong self-management is essential for coping with polyarthritis.
The fluctuating course of polyarthritis and uncertain disease progression threaten patients’
feelings of autonomy. Therefore, a sense of regulatory efficacy is of major importance
for wellbeing [15]. Higher self-efficacy for coping with disease symptoms in RA patients is
correlated with less fatigue, increased physical ability, decreased pain, improved mood, and
THE ROLE OF GOAL MANAGEMENT FOR SUCCESSFUL ADAPTATION TO ARTHRITIS
PROEFSCHRIFT_ROOS_ARENDS_def.indd 31 30-08-16 10:05
32
CHAPTER 2
improved adherence to health recommendations [16-20].
However, maintaining life as it was before disease onset is often impossible for patients
with a progressive chronic disease [21]. Research should therefore not only focus on the
management of the disease, but also on how the patient adjusts to abandoning activities
and life goals that are no longer feasible. Research has shown that adjusting personal
standards and life goals is as important for wellbeing as pursuing personal goals [22].
Goal management strategies are intended to minimize discrepancies between the actual
situation and the goals a person has. These strategies can be seen as possible ways to react
to difficulties along the path towards a goal. The dual-process model [23-25] incorporates
both assimilative and accommodative modes of coping. The assimilative mode is directed
at maintaining goals by actively attempting to alter unsatisfactory life circumstances and
situational constraints in accordance with personal preferences. Maintaining goals that are
achievable gives people a purpose in life and can offer satisfaction. Accommodative coping
is directed towards a revision of self-evaluative standards and personal goals in accordance
with perceived deficits and losses—an approach that adjusts goals to the personal bounds
of what remains possible. In contrast, the goal adjustment model [26] focuses on goals that
are experienced as no longer attainable. This model combines goal disengagement with
goal reengagement. Goal disengagement consists of withdrawing effort and commitment
from an unattainable goal, with the benefit of releasing limited resources that can then be
deployed for alternative actions and new goals. Goal reengagement consists of identifying,
committing to and starting to pursue alternative goals. New personal goals seem important
for promoting a person’s sense of identity [27] and subjective wellbeing, which should be
improved by engaging in personally meaningful activities [28].
The models are partly complementary, and neither is comprehensive with regard to the
possible goal management strategies a polyarthritis sufferer – or indeed anyone – can adopt.
To be comprehensive but still straightforward, we hypothesized a model that integrates
the four strategies (see Fig. 1). This integrated model of goal management focuses on
goal maintenance, goal adjustment, and goal reengagement. The maintenance of goals is
considered to be the preferred strategy when a person still perceives opportunities to attain
a goal. Goal adjustment is more suitable for situations in which goals are under threat. Goal
reengagement seems an appropriate strategy at all times, to complement existing goals or
replace unattainable goals. We hypothesized that the strategy of disengaging from goals is
one facet of the broader strategy goal adjustment.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 32 30-08-16 10:05
33
THE ROLE OF GOAL MANAGEMENT FOR SUCCESSFUL ADAPTATION TO ARTHRITIS
Figure 1 Integrated Model of Goal Management
To the best of our knowledge, there have been no previous studies that have combined
both models of goal management. However, several studies have explored the relationship
between goal management strategies and distress for various chronic diseases. Adjustment
of goals was found to have beneficial effects on depression and social dysfunction in vision-
impaired adults [29]. Among patients with chronic pain, the ability to adjust goals buffered
against the deteriorating effect of the pain experience on depression [25]. A study with
patients diagnosed with peripheral arterial disease suggested that, when patients applied the
strategy of engaging in new goals, this resulted in fewer depressive symptoms [30]. Another
study among patients with multiple sclerosis found that combining low disengagement and
low reengagement resulted in fewer depressive feelings [31]. To summarize, the relation
between the use of the goal management strategies and distress for patients with a chronic
disease is not completely clear yet. For facets of wellbeing in chronic disease, research has
shown positive associations with the use of various goal management strategies [29,31,32].
In the present research, both distress (anxiety and depression) and wellbeing (purpose in
life, positive affect and participation) as indicators of adaptation to a chronic disease were
studied.
The main research question was as follows: What is the role of various goal management
strategies (goal maintenance, goal adjustment, goal disengagement, and goal reengagement)
for adaptation to polyarthritis, as operationalized by the following indicators: anxiety,
depression, purpose in life, positive affect, and participation? Hypothesized was that the
use of goal management strategies relates positively to successful adaptation. Within
the integrated model of goal management, we hypothesized goal disengagement to be
a subcategory of goal adjustment, which would imply a strong relationship between the
two strategies. As said before, arthritis related self-efficacy is known to be an important
mechanism in adaptation to a rheumatic disease, therefore we studied main effects of self-
Goal threathened Goal unreachableSevere difficulties withattaining goal
• Instrumentalactivities• Self-correctiveactions• Compensatorymeasures
• Downgradingofaspirations• Disengagementfrombarren
goals• Positivereappraisalof
situation• Self-enhancingcomparisons
• Identifyingnew/alternative
goal
• Commitingtonewgoal
• Startingtopursuenewgoal
Maintain goal Adjust goal Reengage in new goal
PROEFSCHRIFT_ROOS_ARENDS_def.indd 33 30-08-16 10:05
34
CHAPTER 2
efficacy on adaptation. The self-efficacy a person perceives in managing disease symptoms
like pain and fatigue may also play a role in the effectiveness of different ways of goal
management a person can utilize. Therefore, we also examined the role of self-efficacy in
relation to goal management strategies and adaptation.
Methods
Sample
For this questionnaire study, participants were selected from an outpatient clinic for
rheumatology. Based on the following inclusion criteria, 803 patients were at random
selected from the electronic diagnosis registration system: (1) patient is diagnosed
with polyarthritis; (2) patient is receiving treatment for polyarthritis. Subsequently, the
rheumatologists checked the chart of every patient for the additional inclusion criteria: (3)
patient is 18 years or older; (4) patient is able to complete the questionnaire in Dutch, either
autonomously or with help. Out of 803 patients, 164 were not approached because they
did not meet the inclusion criteria. The internal review board of the Faculty of Behavioural
Sciences at the University of Twente approved the study.
Procedure
A total of 639 patients received an invitation letter, together with the questionnaire and
an informed consent form. In time, 305 questionnaires and signed informed consents (48%)
were received. Table 1 shows the demographic and clinical characteristics of the participants.
Measures
Questions were asked about sex, age, marital status, education and employment. Disease
duration was asked with the following question: ‘In which year did the complaints associated
with your arthritis start?’ All other questionnaires - including the measures for the goal
management strategies and the five indicators of adaptation - are described in Table 2.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 34 30-08-16 10:05
35
THE ROLE OF GOAL MANAGEMENT FOR SUCCESSFUL ADAPTATION TO ARTHRITIS
Demographic characteristics
Sex, n (%)
Male 116 (38.0)
Female 189 (62.0)
Age (years), mean (SD), range 62.25 (13.3), 18-91
Marital status, n (%)
Not living with partner 76 (24.9)
Living with partner 223 (73.1)
Missing 6 (2)
Educational level, n (%)a
No/Lower 125(41.0)
Secondary 109 (35.7)
Higher 64 (21)
Missing 7 (2.3)
Work status, n (%)
No paid job 212 (69.5)
Full-time and part-time employment 88 (28.9)
Missing 5 (1.6)
Disease characteristics
Diagnosis, n (%)
Rheumatoid arthritis 168 (55.1)
Gout and other crystal diseases 32 (10.5)
Polymyalgia & Temporal Arteriitis 29 (9.5)
Spondylarthropathy 24 (7.9)
SLE and other systemic diseases 20 (6.6)
Other/non-classifiable 32(10.5)
Disease duration (years), mean (SD), range 14.78 (12.2), 1-71
Comorbidities, n (%)
Disease of the cardiac or circulatory system 52 (17)
Sensory disorder 47 (15)
Disorder of the skin 47 (15)
Disorder of the digestive system 43 (14)
Disorder of the respiratory tract 37 (12)
Disorder of urinary of genital 35 (11)
Metabolic disorder 31 (10)
Other (e.g. blood disease, malignancy, mental illness, allergy) 145 (48)
a Low: No education, primary school or lower vocational education; Middle: high school and middle vocational
education; High: high vocational education and university.
Table 1 Demographic and Clinical Characteristics of the Participants (n=305)
PROEFSCHRIFT_ROOS_ARENDS_def.indd 35 30-08-16 10:05
36
CHAPTER 2Ta
ble
2 Ch
arac
teris
tics
of th
e Q
uest
ionn
aire
s us
ed in
this
Stu
dy
Vari
able
Sc
ale
Aut
hor
Exam
ple
Item
s Re
spon
se o
ptio
ns
N
α Sc
ale
M
SD
ra
nge
Co m
orbi
dity
Ch
eckl
ist w
ith 1
5
Base
d on
the
Inte
r-
16
29
2
0-16
1.
43
1.5
ca
tego
ries
of
natio
nal C
lass
ifica
-
cond
ition
s a
tion o
f Dis
ease
s
(IC
D-10
: WHO
, 199
2)Fu
nctio
nal
HAQ
-DI
Frie
s, Sp
itz, K
rain
es,
Are
you
able
to d
ress
you
r- 20
w
ithou
t any
diffi
culty
30
3 .9
2 0-
3 .9
8 .7
6lim
itatio
ns
&
Hol
man
, 198
0 [3
3] s
elf,
incl
udin
g ty
ing
shoe
-
(0) -
unab
le to
do
(3)
la
ces
and
doin
g bu
ttons
?Pa
in
1 ite
m n
umer
ical
Amou
nt o
f pai
n in
the
1 no
pai
n at
all
(0) -
29
7 -
0-10
4.
05
2.46
ra
ting
scal
e
past
7 d
ays,
caus
ed b
y
un
bear
able
pai
n (1
0)
poly
arth
ritis.
Fatig
ue
100
mm
vis
ual
M
ean
amou
nt o
f fat
igue
1
no fa
tigue
(0) -
com
p-
296
- 0-
100
42.0
0 26
.47
an
alog
ue s
cale
in th
e pa
st 7
day
s.
lete
ly e
xhau
sted
(100
) G
oal
Tena
ciou
s G
oal
Bran
dtst
ädte
r &
Whe
n fa
ced
with
diffi
culti
es,
15
stro
ngly
dis
agre
e (1
) -
298
.73
15-7
5 46
.94
6.18
mai
nten
ance
Pu
rsui
t (TG
P)
Renn
er, 1
990
[34]
I u
sual
ly d
oubl
e m
y ef
fort
s.
stro
ngly
agr
ee (5
)
Goa
l Fl
exib
le G
oal
Bran
dtst
ädte
r &
I ada
pt q
uite
eas
ily to
15
st
rong
ly d
isag
ree
(1) -
29
9 .7
9 15
-75
51.9
0 6.
52ad
just
men
t Ad
just
men
t Sca
le
Renn
er, 1
990
chan
ges
in p
lans
or
st
rong
ly a
gree
(5)
(F
GA)
circ
umst
ance
s.
G
oal
Goa
l Adj
ustm
ent
Wro
sch,
Sch
eier
, If
I hav
e to
sto
p pu
rsui
ng a
n 4
stro
ngly
dis
agre
e (1
) -
297
.53
4-20
11
.68
2.31
dise
ngag
emen
t Sc
ale
Mill
er, e
t al.,
200
3
impo
rtan
t goa
l in
my
life,
stro
ngly
agr
ee (5
)
[2
6]
it’s
easy
for m
e to
redu
ce
my
effo
rt to
war
ds a
goa
l.
G
oal
Goa
l Adj
ustm
ent
Wro
sch,
Sch
eier
, If
I hav
e to
sto
p pu
rsui
ng
6 st
rong
ly d
isag
ree
(1) -
29
8 .8
8 6-
30
21.2
0 b
3.57
b
reen
gage
men
t Sc
ale
Mill
er, e
t al.,
200
3 an
impo
rtan
t goa
l in
my
life,
stro
ngly
agr
ee (5
)
I see
k ot
her m
eani
ngfu
l
goal
s.
Se
lf-ef
ficac
y
Arth
ritis
Lo
rig, e
t al.,
198
9 I a
m c
erta
in th
at I
can
keep
5
stro
ngly
dis
agre
e (1
) -
300
.83
1-5
3.24
.8
0pa
in
Self-
Effic
acy
Scal
e c
[18]
ar
thrit
is p
ain
from
stro
ngly
agr
ee (5
)
inte
rferin
g w
ith m
y sl
eep.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 36 30-08-16 10:05
37
THE ROLE OF GOAL MANAGEMENT FOR SUCCESSFUL ADAPTATION TO ARTHRITIS
Self-
effic
acy
for
Arth
ritis
Lo
rig, e
t al.,
198
9 I a
m c
erta
in th
at I
can
6 st
rong
ly d
isag
ree
(1) -
29
5 .8
2 1-
5 3.
50
.65
othe
r sym
ptom
s
Self-
Effic
acy
Scal
e
cont
rol m
y fa
tigue
.
stro
ngly
agr
ee (5
) An
xiet
y
Hosp
ital A
nxie
ty
Zigm
ond
& S
naith
, I f
eel t
ense
or w
ound
up.
7
vario
us re
spon
se
302
.83
0-21
5.
24
3.69
an
d De
pres
sion
19
83 [3
5]
form
at (0
-3)
Sc
ale
(HAD
S)
Depr
essi
on
HADS
Zi
gmon
d &
Sna
ith,
I hav
e lo
st in
tere
st in
my
7 va
rious
resp
onse
30
2 .8
1 0-
21
4.73
3.
59
19
83
appe
aran
ce.
fo
rmat
(0-3
) Pu
rpos
e in
life
Pu
rpos
e In
Life
Ry
ff, 1
989
[9];
Ryff
My
daily
act
iviti
es o
ften
6 st
rong
ly d
isag
ree
(1) -
29
8 .8
2 6-
30
21.8
4 3.
85
scal
e (P
IL) d
& K
eyes
, 199
5 [3
6]
seem
triv
ial a
nd
st
rong
ly a
gree
(5)
un
impo
rtan
t to
me.
Po
sitiv
e af
fect
Po
sitiv
e sc
ale
of
Wat
son,
Cla
rk, &
Ra
te h
ow y
ou fe
lt du
ring
10
very
slig
htly
or n
ot a
t 30
2 .9
2 10
-50
34.2
9 6.
96
the
Posi
tive
and
Telle
gen,
198
8 [3
7]
the
past
wee
k: e
.g.
al
l (1)
- ve
ry m
uch
(5)
N
egat
ive
Affe
ct
at
tent
ive,
inte
rest
ed.
Sc
hedu
le (P
ANAS
)
Pa
rtic
ipat
ion
The
fam
ily ro
le,
Card
ol, D
e Ha
an,
Dom
ain
auto
nom
y 19
ve
ry g
ood
(0) -
30
0 .7
6 0-
4 1.
33
.65
au
tono
my
outd
oors
, De
Jong
, Van
den
ou
tdoo
rs: T
he p
ossi
bilit
y to
very
poo
r (4
)
soci
al re
latio
ns
Bos,
& D
e G
root
, sp
end
my
(spa
re) t
ime
like
su
bsca
les
of th
e
2001
[38]
I w
ant i
t, is
…
Impa
ct o
n
Part
icip
atio
n an
d
Auto
nom
y (IP
A)
qu
estio
nnai
re e
Wor
k
The
wor
k an
d Ca
rdol
, et a
l., 2
001
The
poss
ibili
ty to
do
the
6 ve
ry g
ood
(0) -
11
4 .8
8 0-
4 1.
35
.78
part
icip
atio
n ed
ucat
ion
subs
cale
job
or v
olun
tary
wor
k th
at
ve
ry p
oor
(4)
of
the
(IPA)
f
I wan
t is
…
a Re
spon
dent
s co
uld
also
indi
cate
‘oth
er c
ondi
tions
not
list
ed ’;
b O
rigin
al v
aria
ble
show
n fo
r com
preh
ensi
vene
ss re
ason
s; c
Dutc
h tr
ansl
atio
n [3
9]; d
One
que
stio
n ab
out
ever
yday
pur
pose
in li
fe w
as a
dded
to th
e PI
L: ‘D
oing
the
thin
gs I
do e
very
-day
is a
sour
ce o
f dee
p pl
easu
re a
nd sa
tisfa
ctio
n.’;
e Th
e th
ree
part
icip
atio
n su
bsca
les
wer
e ad
d up
and
div
ided
by
thre
e, to
mak
e up
one
indi
cato
r of p
erce
ived
par
ticip
atio
n. W
ith th
ese
19 it
ems
a re
stric
ted-
to-o
ne-fa
ctor
prin
cipa
l com
pone
nts
anal
ysis
was
car
ried
out
to c
heck
the
one
fact
or s
truc
ture
of t
he IP
A. In
vest
igat
ion
of th
e sc
ree
plot
and
eig
enva
lues
val
idat
ed a
one
fact
or s
olut
ion
(eig
enva
lue
9.13
, 48.
03%
of t
he to
tal v
aria
nce
expl
aine
d); f
The
subs
cale
wor
k an
d ed
ucat
ion
was
onl
y ap
plic
able
to 3
7% o
f the
par
ticip
ants
and
is, t
here
fore
, not
sum
med
up
with
the
othe
r par
ticip
atio
n sc
ales
.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 37 30-08-16 10:05
38
CHAPTER 2
Analyses
For the goal management, self-efficacy and adaptation scales, we tolerated a maximum of
25% of missing answers per scale. Missing values for these scales were replaced by the mean
score of the person for the completed items of the scale. For the statistical analyses, version
18 of the Statistical Package for the Social Sciences was used. Means, standard deviations
and ranges of scores were calculated for all studied variables. The normal distribution was
checked by inspection of the histograms and skewness and kurtosis values. A square root
transformation [40] was carried out for goal reengagement, as a result of non-normal
distribution. The resulting transformed variable was used in all analyses. The variables living
situation, education and disease duration were left out of the following analyses because
no significant correlations were found with the indicators of adaptation. The IPA subscale
entitled work and education was only completed by 37% of the participants and was,
therefore, not summed up with the other participation scales.
To test against the main research question regarding the relation of the goal management
strategies with the indicators of adaptation, separate hierarchical multiple regression
analyses that predicted each of the outcomes were conducted. Data met the requirements
of normality, linearity, multicollinearity and homoscedasticity. In the individual regression
analyses, outliers were studied [40]. For the variable purpose in life, one outlier was removed
(standardized residual: -4.0, Cook’s distance: .43).
In the first model, the demographic variables of sex, age and work situation were entered
to control for their predictive value on the indicators of adaptation. The disease related
variables—functional limitations, pain, fatigue and co-morbidity—were entered in the
second model, followed by the goal management strategies in the third model. The self-
efficacy variables were entered in the fourth model. The results of this analysis indicated
possible mediation effects, as some of the beta values of goal management strategies
decreased after entering the self-efficacy variables into the analysis. Therefore, additional
analyses to test possible mediation were performed. The significance of any mediation was
tested by use of the conservative Sobel test [41].
Additional analyses were carried out to investigate possible interactions using centred
scores, calculated by subtracting the mean score from respondents’ raw scores [42]. The
interactions of goal maintenance with goal adjustment and goal disengagement with goal
reengagement, as well as the interactions of functional limitations with goal maintenance
and with goal disengagement, were entered in the model as a fifth step.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 38 30-08-16 10:05
39
THE ROLE OF GOAL MANAGEMENT FOR SUCCESSFUL ADAPTATION TO ARTHRITIS
Results
Preliminary analyses
Means, minimum and maximum scores, standard deviations and the Cronbach’s alpha of the
scales can be found in Table 2.
Correlations
For goal maintenance, we found weak but significant relations with depression, participation
and work participation; moderate relations with purpose in life and positive affect; and no
significant relation with anxiety (all correlations are shown in Table 3). Both goal adjustment
and goal reengagement showed significant negative correlations with anxiety, depression,
participation and work participation with weak to moderate associations, and weak to
moderate positive correlations with purpose in life and positive affect. Goal disengagement
only had significant but weak negative relations with anxiety and depression. Goal
adjustment had significant moderate relations with self-efficacy pain and self-efficacy
for other symptoms. Goal maintenance and goal reengagement had significant but weak
relations with both self-efficacy variables, and goal disengagement showed no significant
relations with self-efficacy. Both self-efficacy variables correlated moderate to strong with
all six indicators of adaptation. Finally, the disease variables functional limitations, pain
as well as fatigue, had significant moderate to strong relations with anxiety, depression,
participation and work participation, and low to moderate but still significant relations with
purpose in life and positive affect.
Multivariate relationships between goal management and adaptation
Six separate hierarchical multiple regression analyses were conducted to examine the
relative importance of the four goal management strategies and self-efficacy for the six
indicators of adaptation (see Table 4).
Anxiety
The goal management strategies together explained 13% of the variance in anxiety, and goal
adjustment was found to be the greatest predictor of anxiety. The disease-related variables
added 28% to the explanation of anxiety, of which fatigue was the greatest predictor.
Depression
Goal maintenance, goal adjustment and goal reengagement were meaningful predictors for
the variance in depression. The goal management strategies added 19% to the explanation
of variance in depression. None of the demographic variables had predictive value for
depression in the final model. Functional limitations, pain, fatigue and co-morbidity
explained 24% of the variance.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 39 30-08-16 10:05
40
CHAPTER 2
Vari
able
1.
2.
3.
4.
5.
6.
7.
8.
9.
10
. 11
. 12
. 13
. 14
. 15
. 16
. 17
. 18
. 19
. 20
. 21
.1.
Sex
a -
2. A
ge
-.05
-
3. L
ivin
g si
tuat
ion
b -.2
0**
-.16*
* -
4. E
duca
tion
c .0
2 -.2
9**
-.02
-
5. W
ork
situ
atio
n d
-.18*
* -.5
0**
.11
.30*
* -
6.Di
seas
e du
ratio
n .0
2 .1
8**
-.04
.01
.15*
-
7. H
AQ-S
DI
.30*
* .2
4**
-.17*
* -.2
2**
-.35*
* .2
7**
-
8. P
ain
.20*
* .0
8 -.1
0 -.1
4*
-.22*
* .1
2*
.64*
* -
9. F
atig
ue
.15*
* -.0
6 -.0
5 -.0
1 -.0
8 .1
1 .5
6**
.66*
* -
10. C
o m
orbi
dity
.0
9 .1
7**
-.10
.06
-.16*
* .1
0 .4
0**
.30*
* .3
8**
-
11. G
oal m
aint
enan
ce
.00
-.31*
* .0
5 .2
0**
.25*
* -.0
1 -.1
5**
-.09
-.05
-.07
-
12. G
oal a
djus
tmen
t -.0
1 -.0
2 .0
1 .1
2*
.15*
.1
2*
-.13*
-.1
9**
-.25*
* -.1
4*
.16*
* -
13. G
oal d
iseng
agem
ent
.03
.16*
* -.0
0 -.1
3*
-.05
.10*
.0
3 .0
1 -.1
0 -.0
1 -.3
2**
.29*
* -
14. G
oal r
eeng
agem
ent
.08
-.14*
-.0
0 .1
4*
.18*
* .0
9 -.0
4 -.0
4 -.0
2 -.0
4 .0
3 .4
1**
.29*
* -
15. S
elf-e
ffica
cy p
ain
-.13*
-.0
2 .0
9 .0
8 .1
7**
-.05
-.52*
* -.5
5**
-.49*
* -.2
3**
.12*
.3
3**
.05
.13*
-
16. S
elf-e
ffica
cy o
ther
-.1
5**
.01
.09
.02
.09
.04
-.42*
* -.4
8**
-.52*
* -.2
8**
.16*
* .4
1**
.11
.25*
* .7
6**
-
17. A
nxie
ty
.03
.02
-.05
-.06
-.12*
-.0
4 .3
8**
.42*
* .5
1**
.33*
* -.0
9 -.4
3**
-.23*
* -.2
5**
-.36*
* -.7
8**
-
18. D
epre
ssio
n .0
2 .1
7**
-.08
-.19*
* -.2
8**
.07
.46*
* .3
7**
.46*
* .3
4**
-.27*
* -.5
0**
-.12*
-.3
2**
-.36*
* -.4
9**
.68*
* -
19. P
urpo
se in
life
-.0
8 -.1
0 .0
3 .1
1 .2
5**
.09
-.27*
* -.1
9**
-.29*
* -.1
5**
.33*
* .4
7**
.02
.32*
* .3
2**
.51*
* -.4
5**
-.60*
* -
20. P
ositi
ve a
ffect
-.1
0 -.0
4 .0
7 .1
0 .2
0**
.01
-.29*
* -.2
5**
-.37*
* -.1
8**
.33*
* .4
7**
-.03
.22*
* .3
4**
.48*
* -.4
4**
-.65*
* .6
2**
-
21. P
artic
ipat
ion
.08
.15*
-.0
9 -.1
6**
-.33*
* .0
4 .6
4**
.51*
* .5
6**
.37*
* -.2
0**
-.37*
* -.0
9 -.2
5**
-.52*
* -.5
5**
.52*
* .6
2**
-.51*
-.5
4**
-
22. W
ork
Part
icip
atio
n -.0
2 .1
3 .0
2 .0
3 -.1
3 -.1
0 .5
1**
.50*
* .5
1**
.34*
-.2
3*
-.43*
* -.0
9 -.1
7 -.5
4**
-.52*
* .5
3**
.56*
* -.4
8**
-.57*
* .7
4**
Not
e.
n= 1
84-3
05 fo
r all
varia
bles
, exc
ept W
ork
part
icip
atio
n, n
= 1
12-1
14. a 1
= m
ale,
2=
fem
ale;
b 0=
not
livi
ng w
ith p
artn
er, 1
= li
ving
with
par
tner
; c 1=
no/
low
er
educ
atio
n, 2
=se
cond
ary
educ
atio
n, 3
= h
ighe
r edu
catio
n; d 0
=no
pai
d jo
b, 1
= fu
ll-tim
e an
d pa
rt-t
ime
empl
oym
ent.
* C
orre
latio
n is
sig
nific
ant a
t the
.05
leve
l (2-
taile
d). *
* Co
rrel
atio
n is
sig
nific
ant a
t the
.01
leve
l (2-
taile
d).
Tabl
e 3
Pear
son
Corr
elat
ions
for a
ll St
udy
Varia
bles
PROEFSCHRIFT_ROOS_ARENDS_def.indd 40 30-08-16 10:05
41
THE ROLE OF GOAL MANAGEMENT FOR SUCCESSFUL ADAPTATION TO ARTHRITIS
Vari
able
A
nxie
ty (n
=27
2)
Dep
ress
ion
(n=
272)
Pu
rpos
e in
life
Po
siti
ve a
ffec
t Pa
rtic
ipat
ion
Wor
k pa
rtic
ipat
ion
ß
ß (n
=26
9)a
(n=
272)
(n
=27
1)
(n=
110)
ß
ß ß
ßDe
mog
raph
ic v
aria
bles
ΔR2
.0
2
.08*
**
.07*
**
.05*
*
.13*
**
.0
2
Sex
b
-.09
-.1
2*
.0
2
.01
-.1
1**
-.1
5
Age
-.0
4
-.04
.1
2*
.1
1
-.10*
.11
W
ork
situ
atio
n c
-.0
1
-.11*
.15*
.11
-.1
8***
.08
Dise
ase
rela
ted
ΔR
2
.28*
**
.24*
**
.07*
**
.13*
**
.3
9***
.39*
**
Func
tiona
l lim
itatio
ns
.1
5*
.2
8***
-.10
-.1
1
.43*
**
.2
6*
Pain
.06
-.0
4
.04
.0
9
-.04
.1
1
Fatig
ue
.2
0**
.1
6*
-.0
3
-.18*
.16*
*
.16
Co
mor
bidi
ty
.1
4**
.0
9
.02
.0
1
.08
.0
7G
oal m
anag
emen
t
ΔR2
.1
3***
.1
9***
.2
7***
.2
0***
.07*
**
.1
4***
G
oal m
aint
enan
ce
-.0
0
-.13*
.22*
**
.2
3***
-.05
.2
1**
G
oal a
djus
tmen
t
-.21*
**
-.2
9***
.28*
**
.2
8***
-.11*
-.24*
G
oal d
isen
gage
men
t
-.11*
-.04
.0
1
-.04
-.0
2
-.14
G
oal r
eeng
agem
ent
-.0
7
-.11*
.13*
.05
-.1
1*
.0
6Se
lf-ef
ficac
y m
edia
tion
ΔR
2
.03*
*
.03*
*
.05*
**
.03*
*
.02*
*
.03
Se
lf-ef
ficac
y pa
in
.1
7*
.2
1**
-.1
4
-.12
-.0
0
-.16
Se
lf-ef
ficac
y ot
her
-.2
9***
-.29*
**
.3
7***
.30*
**
-.2
0**
-.0
7To
tal m
odel
= R
2
.45*
**
.5
3***
.46*
**
.4
1***
.61*
**
.5
7***
a O
ne o
utlie
r was
rem
oved
; b 1=
mal
e, 2
= w
omen
; c 0=
no p
aid
job,
1=
full-
time
and
part
-tim
e em
ploy
men
t. *p
<.0
5. *
*p<
.01.
***
p<.0
01.
Tabl
e 4
Resu
lts H
iera
rchi
cal R
egre
ssio
n An
alys
is fo
r Ada
ptat
ion
Out
com
es
PROEFSCHRIFT_ROOS_ARENDS_def.indd 41 30-08-16 10:05
42
CHAPTER 2
Ada
ptat
ion
G
oal a
djus
tmen
t
G
oal m
aint
enan
ce
Goa
l ree
ngag
emen
t
ß
wit
hout
SE
ß w
ith
SE
Sobe
l (p)
ß
wit
hout
SE
ß w
ith
SE
Sobe
l (p)
ß
wit
hout
SE
ß w
ith
SE
Sobe
l (p)
Anxi
ety
-.24*
**
-.21*
**
-2.7
2 (.0
07)
De
pres
sion
-.3
1***
-.2
9***
-2
.87
(.004
) -.1
6**
-.13*
-2
.47
(.013
) -.1
4**
-.11*
-3
.23
(.001
)Pu
rpos
e in
life
.26*
**
.22*
**
2.62
(.00
9)
.18*
* .1
3*
3.95
(.00
0)Po
sitiv
e af
fect
.3
2***
.2
8***
3.
38 (.
000)
.2
6***
.2
3***
2.
50 (.
012)
Pa
rtic
ipat
ion
-.16*
* -.1
1*
-3.5
6 (.0
00)
-.1
3**
-.11*
-3
.40
(.000
)
Not
e. Δ
R2 =
.02
- .05
. *p
<.0
5. *
*p<
.01.
***
p<.0
01.
Tabl
e 5
Sign
ifica
nt M
edia
tion
of S
elf-e
ffica
cy fo
r oth
er s
ympt
oms
(SE)
on
Adap
tatio
n O
utco
mes
PROEFSCHRIFT_ROOS_ARENDS_def.indd 42 30-08-16 10:05
43
THE ROLE OF GOAL MANAGEMENT FOR SUCCESSFUL ADAPTATION TO ARTHRITIS
Purpose in life
Goal maintenance, goal adjustment and goal reengagement were found to be important
predictors of purpose in life, the four goal management strategies together explained 27%
of the variance. The disease related variables explained 7% of the variance.
Positive affect
In the regression model for positive affect, goal adjustment and goal maintenance were the
main predictors, and the four goal management variables explained 20% of the variance.
Of the disease-related variables (added explained variance was 13%), fatigue was the only
predictor that showed a significant contribution.
Participation
Of the goal management strategies, both goal adjustment and goal reengagement were
found to predict participation. Goal management added 7% to the explanation of variance
of participation. Functional limitations was the main predictor of the satisfaction with
participation. The disease variables together explained 39%. Work situation, sex and age
together explained 13%; all three were significant predictors of participation.
Work participation
For the satisfaction with work participation, goal adjustment was the main predictor
together with goal maintenance. The four goal management variables explained 14% of
the variance. The disease-related variables together explained 39%, but only functional
limitations was a significant predictor.
Arthritis related self-efficacy
Self-efficacy pain is a significant predictor for anxiety and depression, and self-efficacy for
other symptoms predicted all indicators of adaptation except work participation. The self-
efficacy variables added between 2 and 5% of explained variance to the model. Beta-values
of some of the goal management strategies decreased after entering self-efficacy for other
symptoms in the analyses (Table 5). Sobel tests showed significant partial mediation effects
of self-efficacy for other symptoms on these goal management strategies.
Analysis of interactions between combinations of predictor variables
The extension of the model with parameters for interactions of goal maintenance with goal
adjustment and goal disengagement with goal reengagement, as well as the interactions
of functional limitations with goal maintenance and with goal disengagement, explained
0-3% (n.s.) of the variance of the indicators of adaptation. The ß values for the interaction
parameters were between .00 and .15, and so are non-significant.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 43 30-08-16 10:05
44
CHAPTER 2
Discussion and Conclusion
This study has shown that the tendency to adjust goals to personal abilities and circumstances
had the strongest relationship with all indicators of adaptation. People who reported a lower
tendency to adjust their goals scored higher on anxiety and depression. In line with this result,
people who reported a higher tendency to adjust their goals to changed circumstances,
experienced more purpose in life, more positive affect, and were more satisfied with their
participation in daily life and their participation in work and education. Without jumping to
causal assumptions, to be inclined to adjust threatened goals seemed to be associated with
successful adaptation. Besides adjusting personal goals, the tendency to maintain to strive
for goals also seemed to benefit adaptation to a chronic disease. Patients who have a higher
tendency to keep fighting for their goals experienced fewer depressive symptoms and
experienced more purpose in life, positive affect, and satisfaction with their participation
in the world of work. This finding highlighted the importance of pursuing personal goals
for wellbeing and adaptation. A higher tendency to disengage from goals was related to
lower levels of anxiety. Furthermore, a higher tendency to engage in new goals correlated
negatively with depression, but positively with satisfaction with participation and purpose
in life. This latter finding is in line with earlier research that indicated that patients who
actively search and pursue new goals experienced a more meaningful life, more satisfaction
with their participation and lower levels of depression [26].
The wide spectrum of adaptation that this study focused on is a differentiating feature,
especially because goal management has not been previously studied specifically in relation
to adaptation to polyarthritis. For patients, the absence of psychological distress and the
presence of positive affect, as well as the experience of a purpose in life and satisfaction
with participation are assumed to be important for their quality of life. Higher tendencies
to adjust goals when they become threatened due to chronic disease, maintain goals that
are within reach, and search for new goals clearly have positive relations with adaptation
to polyarthritis. Although these findings should not be interpreted causally due to the
nature of the study design, the results pointed to important processes in the process of
adaptation to arthritis. In the Introduction of this paper, we argued for an integrated model
of goal management, in which disengagement is hypothesized to be one of the facets of
the adjustment of goals. The data revealed a moderate positive correlation between goal
adjustment and goal disengagement and showed that the strategy of goal disengagement
explained almost no variance of adaptation, which could point to a high level of shared
variance with the strategy of goal adjustment. This finding supports the idea that goal
disengagement is an element of goal adjustment and not an independent goal management
strategy, thus supporting the integrated model of goal management described earlier in this
paper. As discussed in the next paragraph, the reliability of the subscale disengagement
is low and therefore caution is appropriate in interpreting the results. Furthermore,
PROEFSCHRIFT_ROOS_ARENDS_def.indd 44 30-08-16 10:05
45
THE ROLE OF GOAL MANAGEMENT FOR SUCCESSFUL ADAPTATION TO ARTHRITIS
longitudinal studies are needed to clarify the relations between the strategies adjustment
and disengagement of goals and to validate the integrated model of goal management.
The strategy disengagement of goals could explain little of the variance of the adaptation
outcomes in this study, which is in common with earlier findings [31]. However, the low
reliability of the disengagement subscale in the present study, despite careful forward/
backward translation of the items, might have partly influenced the results. Although the
scale consists of only four items, in earlier research sufficient alphas of .76 - .84 were found
[31,26]. Inspection of the items of the scale revealed some inconsistency about the meaning
of disengagement. Two items reflected the reduction of effort towards a goal (behaviour)
and two other items the relinquishment of commitment towards a goal (mental acceptance)
[26]. We believe the acceptance of surrendering a goal to be necessary for wellbeing and
adaptation. However, when the reduction of goal-directed behaviour is not accompanied by
acceptance, there can be a negative influence on both wellbeing and adaptation. Additional
analyses including the omission of one or more items could not increase the reliability.
Also, the regression analyses showed no other results with the use of a subset of the items.
However, the interpretation of the items could have caused the low reliability of the scale,
the results should therefore be interpreted carefully.
The tendency to engage in new goals showed less association with adaptation than
expected; in the final model, reengagement only had small relations with the indicators
of adaptation. A possible explanation for the small role of reengagement might be the
relatively high age of the participants. Reengagement may be of decreasing importance for
wellbeing when people grow older, due to fewer opportunities, failing physical health and
a shorter future perspective in comparison with younger or middle-aged adults [43]. More
research is needed to clarify the relation between age, reengagement and wellbeing.
Since adaptation and the use of goal management strategies may be related to the
seriousness of disease symptoms, co-morbidities, and demographic characteristics, we
included these variables in the regression analyses. The mean scores on functional limitations
and levels of pain and fatigue showed that patients did experience limitations and adverse
symptoms caused by their polyarthritis. The disease-related features contributed to the
explanation of the adaptation of arthritis. But still, the goal management strategies that we
studied revealed a meaningful independent contribution to the outcome measures.
Self-efficacy added 2 - 5% to the explained variance of the outcome measures. Furthermore,
self-efficacy only partly mediated some relationships between goal management strategies
and adaptation, showing that both concepts are to a large degree distinct. Earlier research
pointed to the essential role of arthritis related self-efficacy for study outcomes of arthritis
[44,17,45]. However, the results of the current study revealed that, at least for the outcomes
examined here, goal management strategies accounted for a high proportion of the
explained variance (7-27%).
There were no associations between adaptation outcomes and the combination of
PROEFSCHRIFT_ROOS_ARENDS_def.indd 45 30-08-16 10:05
46
CHAPTER 2
functional limitations with specific goal management strategies, indicating that for people
with various disease impact the tendency to use goal management has similar outcomes
for adaptation. Nor were specific combinations of goal management strategies related
to adaptation. As there were no meaningful interaction effects for the combinations of
goal management strategies nor for the combinations of functional limitations with goal
management strategies, we decided to not discuss the interactions at length.
Some remarks have to be made regarding the measurement of constructs. As a result of
the use of generic measures for the goal management strategies, there is no knowledge
about specific goals participants had in mind. Further research could complement the
present research by the use of other methods such as interviews, to clarify the complex goal
management constructs.
Pain and fatigue were each measured with one item in VAS or NRS format. Although
not multidimensional assessment methods, those were chosen to limit the length of the
questionnaire and for their frequent use in rheumatology research [46]. Moreover, pain and
fatigue are not key outcomes in this study and use of the questions satisfactory serves the
purpose for our examination.
The indicators of adaptation differ in their association with the disease-related variables,
thereby indicating the necessity of focusing on both distress and wellbeing, as mentioned
in Section 1. Fatigue and functional limitations showed relations with anxiety, depression
and participation in the regression analysis, thus displaying the negative influence that
rheumatic symptoms can have on successful adaptation to polyarthritis. The four disease
variables together explained a great deal of the variance in anxiety and depression, and could
almost explain 40% of the variance in participation and work participation. Participation
thus seemed to have the same pattern of relations with the disease related variables as the
key indicators of distress: anxiety and depression. As positive affect and purpose in life are
weaker related to the severity of pain, fatigue and functional limitations, those indicators
can probably have a buffering effect against adverse disease symptoms. This hypothesis for
positive affect is already supported by earlier research [47,11].
In the current study, pain could not explain any of the variance of the adaptation
indicators. This was in line with earlier research that showed that pain was not the most
important stressor for patients with arthritis [48,20]. By contrast, fatigue had a strongly
negative relation with adaptation. The relations between fatigue, severity of polyarthritis
and wellbeing seem both intertwined and complex [49,50]. The findings in the present
study highlight fatigue once more as an important symptom and stressor for patients with
polyarthritis, and therefore one that should receive sufficient attention and monitoring in
treatment [51,52].
PROEFSCHRIFT_ROOS_ARENDS_def.indd 46 30-08-16 10:05
47
THE ROLE OF GOAL MANAGEMENT FOR SUCCESSFUL ADAPTATION TO ARTHRITIS
Conclusions
The tendency to adjust threatened personal goals came out as especially important, followed
by the tendency to maintain striving for goals that are perceived as attainable. Subsequently,
if a goal should demand too much precious energy, searching and striving for an alternative
goal can alleviate the sense of loss. We conclude that flexibility in the management of goals
came out as especially important, by which we mean the competencies to adjust threatened
goals downward and to substitute goals that are clearly unattainable with those personally
vital goals that one wishes to continue pursuing. Future longitudinal studies will further
clarify the causal connection between goal management and adaptation, and give input to
psychosocial intervention programs.
Practice implications
This study highlighted the importance of effective goal management for people who
experience difficulties attaining their goals as a result of polyarthritis. Most intervention
programs aimed at improving the adaptation of patients to polyarthritis have focused
on increasing self-efficacy. In contrast, this study demonstrated the importance of goal
management for successful adaptation. Therefore, designing interventions that focus on
the effective management of goals may help people to adapt successfully to polyarthritis.
Acknowledgements
We highly appreciate the patients for their time and energy spent in voluntarily participation
of this study. We thank Dr. K.W. Drossaers-Bakker, Dr. M.N. Hettema, Dr. H.H. Kuper and Dr.
H.E. Vonkeman, who carefully checked all charts of participants. Moreover, we thank our
two patient partners, Lynn Packwood and Klaas Sikkel, who added the patient perspective
to this project.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 47 30-08-16 10:05
48
CHAPTER 2
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rheumatology/ken399
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3The longitudinal relation
between patterns of
goal management and
psychological health in
people with arthritis:
The need for adaptive
fl exibility
R.Y. Arends
C. Bode
E. Taal
M.A.F.J. van de Laar
British Journal of Health Psychology 2016, 21: 469489
DOI:10.1111/bjhp.12182
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CHAPTER 3
Abstract
Objectives
Due to their disease, patients with polyarthritis face the task of reconciling their threatened
personal goals with their capabilities. Previous cross-sectional research on patients with
chronic disease related higher levels of goal management strategies to lower levels of
distress and higher levels of well-being. This study was the first to focus longitudinally
on goal management patterns that combined strategies originating from different goal
management theories. Our first study objective was to identify patterns that consisted of
various strategies of goal management among patients with polyarthritis. Subsequently, the
cross-sectional and longitudinal relationships between these patterns and the psychological
health of the patients were studied.
Methods
A longitudinal questionnaire study with three measurements of goal management and
psychological health was conducted among 331 patients with polyarthritis. Stability of goal
management over time was analysed with ANOVAs. Patterns were identified using cluster
analysis at baseline, based on the following strategies: Goal maintenance, goal adjustment,
goal disengagement, and goal reengagement. Longitudinal relationships between the
patterns and psychological health (specifically: Depression, anxiety, purpose in life, positive
affect, and social participation) were analysed using a generalized estimating equations
analysis.
Results
Three goal management patterns were found: ‘Moderate Engagement,’ ‘Broad goal
management repertoire,’ and ‘Holding on.’ Patients with the ‘Broad goal management
repertoire’ pattern had the highest level of psychological health. The ‘Holding on’ pattern
was identified as the most unfavourable in terms of psychological health. Over time, stable
differences in levels of psychological health between the patterns were found.
Conclusions
This study was the first to reveal patterns of several goal management strategies and their
longitudinal relationship to psychological health. Psychosocial support for arthritis patients
with lower psychological health should focus on helping patients to become familiar with a
broad range of goal management strategies when dealing with threatened goals.
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THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTH
Introduction
Polyarthritis is a collective term for a variety of disorders associated with autoimmune
pathologies including rheumatoid arthritis (RA), ankylosing spondylitis and psoriatic arthritis.
The chronic conditions are characterized by systemic inflammation, swelling, disability,
chronic pain and fatigue that affect an individual’s life on all fronts. Individual prognosis is
unpredictable [1], and characteristics of many rheumatic diseases are unpredictable flares
and/or periods of worsening disease activity [2]. These diseases may affect all aspects of a
patient’s physical, psychological and social functioning [3]. In addition, patients often face
difficulties with attaining and maintaining goals in several domains of life [4,5].
The everyday management of chronic diseases occurs mostly outside the health care system
and becomes an extensive responsibility when people have to balance conflicting roles
and tasks [6,7]. The psychological component of this adjustment process to the disease is
described by De Ridder, Geenen, Kuijer, and van Middendorp [8] as ‘the healthy rebalancing
[of patients’ lives] to their new circumstances’ (p. 246). Often people with chronic illness
need to find a balance between their desires and constraints [9,10].
Pursuing goals is important for identity, purpose in life, satisfaction, and well-being
and can give structure to one’s life [11-13]. However, the positive influence of striving for
goals to achieve well-being can become negative when goals become unattainable or
no progress is made towards the desired goal [14,15]. When the attainment of cherished
goals is threatened, the focus shifts from striving towards goals to trying to sustain what
is achievable. This focus can continue to shift towards the scaling down of unachievable
goals and even to the disengagement of goals that are perceived as unattainable [16,17].
Goal management strategies refer to the ways patients minimize the disparity they perceive
between their actual and preferred situation with regard to their personal goals.
Circumstances and the experienced level of hindrance towards a goal determine how
applicable a goal management strategy is. The Integrated Model of Goal Management
is a comprehensive model of goal management which combines two established models
[18]. This working model, which proposes four goal management strategies, was based
on the understanding that the derived strategies were from two models that appeared to
be partly complementary. The two models combined in this previous study were the dual
process model of assimilative and accommodative coping [19,11] and the Goal adjustment
model [20]. While the dual process model is comprehensive in itself, its operationalization
in two continua makes it impossible to distinguish between lower level goal competencies
or strategies. The Goal adjustment model on the other hand, contains two defined lower
level strategies applicable when a goal is no longer available, but neglects the preceding
processes. By combining the strategies from the two models, an effort was made to assemble
a heuristic model that included the following four goal management strategies. Firstly,
assimilation is operationalized by the maintenance of goals, which implies active attempts
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to alter unsatisfactory life circumstances and situational constraints in accordance with
personal preferences. Secondly, accommodation is operationalized by the adjustment of
goals, which implies a revision of self-evaluative standards and personal goals in accordance
with perceived deficits and losses, thereby adjusting goals to the personal bounds of what
remains possible. The third strategy of goal disengagement is theorized to be one facet of
the broader strategy towards goal adjustment, as well as the ultimate form of adjusting
goals [18]. Goal disengagement implies the withdrawing of effort and commitment from a
goal that is perceived as no longer attainable. Finally, goal reengagement implies identifying
and then committing to and starting the pursuit of alternative goals.
In this study, possessing multiple goal management competencies was hypothesized to be
beneficial for psychological health (PH). Therefore, our first aim was to identify patterns of
goal management among patients with polyarthritis. We also hypothesized that patients
with several goal management competencies at their disposal might react in a flexible
way to difficulties they encountered in goal attainment [21]. Past research has shown that
higher levels of competence in individual goal management strategies relate to higher
levels of psychological health in patients with polyarthritis [18] and in other patient groups,
such as those with vision loss, limb amputation, myocardial infarction, chronic pain and
cancer as well [22-27]. However, no studies are known to have examined patterns of goal
management in patients with a chronic disease. Also, there are only cross-sectional studies
on the relationship between goal management and psychological health in patients with
polyarthritis, and very little research exists on the relationship between goal management
and psychological health over a longer time period in patients living with a chronic disease.
Four longitudinal studies among diverse patient groups have found higher levels of various
goal management strategies to be related to a higher quality of life and less depressive
symptoms [28-31]. These findings suggest that longitudinally a higher competence in
multiple goal management strategies can promote psychological health.
Psychological health, also described as adaptation to a chronic disease, includes various
concepts, such as low levels of depression and anxiety and high levels of purpose in life,
positive affect and satisfaction with participation [10]. These five concepts have been studied
before in relation to patients with arthritis and were chosen to give a multidimensional
display of psychological health in the present study. Of particular importance to this study
is that research exploring these concepts has shown that heterogeneity exists between
individuals and across the course of the disease [32]. Depression and anxiety are well-studied
components of psychological distress and affect a significant number of patients with
arthritis [33,34]. Findings indicate individual variability in levels of depressive symptoms over
time in patients with polyarthritis [35,36,34]. Anxiety has received increasing attention in
research during the last decade [37,38], and this focus seems appropriate given that research
indicates 20-30% of RA patients suffer from increased levels of anxiety [35]. In addition to
the absence of psychological distress, the presence of well-being is part of psychological
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THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTH
health of patients with arthritis [8,18]. Along these line, purpose in life – the endeavour
to find meaning in efforts and challenges – was found to add to the quality of life in
patients with arthritis [39]. Positive emotions can reduce the negative influence of pain on
well-being and even help to prevent clinical depression [40-42]. In addition, the level of a
patient’s participation in society is often negatively affected by polyarthritis, whereas social
limitations are related to psychological distress [43-45].
The second aim of this study was to relate the patterns of goal management to
psychological health in patients with polyarthritis, both cross-sectional and longitudinal.
Based on an earlier study [18], it was hypothesized that a pattern that includes high levels of
goal adjustment, but also high or moderate levels of goal maintenance, goal disengagement
and goal reengagement is beneficial for psychological health. Consequently, less effective
patterns of goal management could put individuals at risk of poor psychological health. We
assumed that less effective patterns of goal management would involve the absence of high
levels of multiple strategies or consist of a predominant use of only one strategy.
Method
A questionnaire study with three measurement points for goal management strategies and
psychological health (PH) was employed 6 months apart. A study describing the data and
analysis of the first measurement point has been published elsewhere [18]. Ethical approval for
the study was obtained from the internal review board of the Faculty of Behavioural Sciences
at the University of Twente, The Netherlands. All participants gave written informed consent.
Sample
Participants were randomly selected from the electronic diagnosis registration system from
a rheumatology outpatient clinic. The following inclusion criteria were applied to select
eligible patients: (1) diagnosis of polyarthritis and (2) receiving treatment for polyarthritis.
Next, a rheumatologist checked the individual charts for the additional inclusion criteria: (3)
18 years or older and (4) sufficient proficiency in Dutch to fill in the questionnaire, either
autonomously or with the help of a relative. Of the 803 initial patients, 639 met all inclusion
criteria and received an invitation letter, informed consent form, and the first questionnaire.
Informed consent was returned by 331 patients (52%), who were then included in the study.
Instruments
A Dutch validated version of the Hospital Anxiety and Depression Scale [46,47] was used to
measure depressive and anxiety symptoms. Higher scores indicate more depressive/anxiety
symptoms (range of both subscales 0-21). Internal consistency at baseline for depression was
α = .80 and for anxiety α = .83. The Purpose In Life Scale [PIL; 48,49] was used to measure
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the extent to which participants experience a meaningful life. One question about everyday
purpose in life was added to the PIL: ‘Doing the things I do every day is a source of deep
pleasure and satisfaction’. Higher scores indicate more purpose in life (range 6-30). Internal
consistency at baseline was α = .82. The positive subscale of the Positive and Negative Affect
Schedule [50,51] was used for the measurement of positive affect. Higher scores indicate
more positive affect in the past week (range 10-50). Internal consistency at baseline was
α = .92. The subscales family role, autonomy outdoors, and social relations of the Impact
on Participation and Autonomy [52] were used to assess participants’ social participation.
Higher scores indicate more satisfaction with social participation (range 0-4). Internal
consistency in this study was at baseline α = .94.
Maintenance of goals and adjustment of goals were measured using two scales: Tenacious
Goal Pursuit and Flexible Goal Adjustment [53]. High scores on these two scales indicate
a tendency to maintain goals (Tenacious Goal Pursuit example item: ‘When faced with
difficulties, I usually double my efforts’), and a tendency to adjust goals (Flexible Goal
Adjustment example item: ‘I adapt quite easily to changes in plans or circumstances’).
Internal consistency at baseline was α = .73 for goal maintenance (range 15-75) and α = .81
for goal adjustment (range 15-75). Cronbach’s α over time was .86 for goal maintenance
and .88 for goal adjustment. For this study, an original Dutch translation was derived
using both the original German scales and existing English translations. Back-and-forward
translations were made by native speakers. This procedure was also used to translate the
Goal Adjustment Scale discussed below.
Goal disengagement and goal reengagement were measured with the Goal Adjustment
Scale [20]. The two subscales measure how respondents usually react if they have to stop
pursuing an important goal (e.g., ‘If I have to stop pursuing an important goal in my life… it’s
easy for me to reduce my effort towards a goal. / … I seek other meaningful goals’). Higher
scores indicate a tendency to disengage from unattainable goals (goal disengagement,
range 4-20) and a tendency to reengage with new goals (goal reengagement, range 6-30).
Internal consistency at baseline was α = .51 and α = .88, respectively. Over time, Cronbach’s
alpha was .76 for goal disengagement and .74 for goal reengagement.
Respondents were asked to indicate the amount of pain (1-item numerical scale: No
pain at all [0] – unbearable pain [10]) and the severity of fatigue (100 mm visual analogue
scale: No fatigue [0] – completely exhausted [100]) in the past week. For comorbidity, a
checklist with 15 categories of conditions was used and the number of comorbidities was
summed up (range 0-15). Functional limitations were measured with the Health Assessment
Questionnaire-Disability Index [HAQ-DI; 54,55], which was developed to measure basic
physical function among persons with arthritis, such as mobility and self-care. Higher scores
indicate the worse basic physical functioning (range 0-3). Internal consistency at baseline
was α = .92.
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THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTH
Data analysis
Data were analysed using version 18 of the Statistical Package for the Social Sciences.
Descriptive statistics were calculated for all study variables. Univariate repeated-measures
ANOVAs were used to analyse the stability of the four goal management strategies (goal
maintenance, goal adjustment, goal disengagement and goal reengagement) over time. In
the case of significant sphericity, the Greenhouse-Geisser statistic was reported. Repeated
contrasts were used to test the significance of changes between measurement points.
Pearson correlations were given for relations between goal-management variables.
Cluster analysis
Cluster analysis was used to identify distinct subgroups based on the similarity of their
pattern of goal management variables at baseline. Goal management variables were
standardized prior to their cluster analyses [56]. Firstly, Ward’s hierarchical cluster analysis
was used to identify cluster centroids and identify the best possible number of clusters, then
the squared Euclidean distance was used as a similarity measure. To identify the number of
clusters for the K-means analysis, the dendrogram was then searched for an inconsistent
jump in the similarity measure. A 3-cluster solution was selected based on theoretical
relevance, interpretability, cluster size and an assessment of cluster differences with respect
to concurrently measured variables [57]. Subsequently, a K-means analysis was conducted.
To validate the obtained cluster solution through replication, the study sample was
randomly split into two groups, and each group was analysed using identical clustering
procedures. To assess the stability of the 3-cluster solution over time, cluster analyses were
repeated on the second and third measurement points. Then to determine whether the
cluster solutions in the three waves matched, clustering factors and outcome variables were
compared. The intra class coefficient (ICC) was used to evaluate the stability of individual
cluster membership over time. Subsequently, descriptive statistics were computed for the
three clusters on the first measurement point. Using the clusters formed with baseline data,
descriptive statistics were also computed for the three clusters on the second and third
measurement points. Multivariate and univariate ANOVAs with Bonferroni-adjusted post-
hoc comparisons were used to test group differences in clustering factors. Furthermore,
analyses of cluster differences in concurrently measured demographic variables, disease-
related variables and PH outcome variables were conducted, using ANOVAs and chi-square
test. In case of non-normality of variances, Welch’s F was used for the univariate approach.
Generalized estimating equations
To analyse the longitudinal relationship between patterns (clusters) of goal management,
on the one hand, and PH outcomes on the other, generalized estimating equations (GEE)
analyses were used. To adjust for the repeated measurements within a person, a working
correlation structure was specified a priori [58]. The exchangeable working correlation
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structure was deemed most appropriate. First, to assess their independent contribution
to depression, anxiety, purpose in life, positive affect, and participation in separate GEE
analyses, patterns of goal management were treated as categorical levels of a fixed variable
(with one pattern as the reference group). Baseline demographic variables (sex and age) and
disease-related variables (functional limitations, pain, fatigue, and comorbidity) were added
into the analyses to control for the variables’ contribution. Secondly, to assess a possible
linear course over time, time was added as a continuous variable. In addition, interaction
terms between time and patterns of goal management were added to assess differences
in course over time between the patterns of goal management for PH outcomes [58]. Two
patterns were used alternately as the reference group to study differences in course over
time between all three patterns (referred to as the interaction effect).
Results
Sample characteristics
Table 1 shows the demographic and clinical characteristics of the participants at the
respective measurement points. The majority of participants lived with a partner (72.8 %),
had either no education or up to a secondary education (75.9 %) and had no paid job (69.2
%). A slight majority of the participants was female (61 %). The mean age at baseline was
62.5 years and mean disease duration was 14.7 years. The most common diagnosis (58 % of
the sample) was RA.
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61
THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTH
a No/Lower:Noeducation,primaryschoolorlowervocationaleducation;Secondary:highschoolandmiddlevocationaleducation; Higher: high vocational education and university.Notes: T1= first measurement, T2= second measurement, T3= third measurement.
Sample attrition
At the first measurement point, 331 participants were included in the study (see Fig. 1 for
a flow chart that displays participant attrition over the year). At the second measurement
point, 290 questionnaires were returned (88 %) and at the third measurement point, 262
questionnaires (79 %). A total of 255 participants returned questionnaires for all three
measurement points. Three participants deceased during the term of the study. Other
reasons for dropout were comorbid disease (n = 4, e.g., cerebrovascular accident, dementia)
and personal circumstances (n = 2). However, the reasons for the remaining participants
dropping out are unknown (n = 60). Analyses of baseline measures comparing participants
Table 1 Characteristics of the participants on T1, T2 & T3 measured at baseline.
Demographic characteristics T1 T2 T3Number of participants (%) 331 (100) 290 (87.6) 262 (79.2) Sex, n (%) Male 129 (39.0) 114 (39.3) 105 (40.1) Female 202 (61.0) 176 (60.7) 157 (59.9) Age (years), mean (SD), range 62.49 (12.7), 24-91 61.7 (12.1), 28-89 62.07 (11.7), 32-89 Marital status, n (%) Not living with partner 83 (25.1) 64 (22.1) 61 (23.3) Living with partner 241 (72.8) 219 (75.5) 196 (74.8) Missing 7 (2.1) 7 (2.4) 5 (1.9) Educational level, n (%)a No/Lower 128(38.7) 105(36.2) 96(36.6) Secondary 123 (37.2) 108 (37.2) 96 (36.6) Higher 72 (21.8) 69 (23.8) 64 (24.4) Missing 8 (2.4) 8 (2.8) 6 (2.3) Work status, n (%) No paid job 229 (69.2) 198 (68.3) 179 (68.3) Full-time and part-time employment 96 (29) 86 (29.7) 79 (30.2) Missing 6 (1.8) 6 (2.1) 4 (1.5)Disease characteristics Diagnosis, n (%) Rheumatoid arthritis 192 (58.0) 170 (58.6) 159 (60.7) Gout and other crystal diseases 34 (10.3) 27 (9.3) 24 (9.2) Polymyalgia & Temporal Arteriitis 33 (10.0) 27 (9.3) 24 (9.2) Spondylarthropathy 25 (7.6) 24 (8.3) 20 (7.6) SLE and other systemic diseases 20 (6.0) 17 (5.9) 14 (5.3) Other/non-classifiable 27(8.2) 25(8.6) 21(8.0) Disease duration (years), mean (SD), range 14.67 (12.3), 1-71 14.72 (12.3), 1-71 14.90 (12.2), 1-71
PROEFSCHRIFT_ROOS_ARENDS_def.indd 61 30-08-16 10:05
62
CHAPTER 3
who dropped out of the study with those who remained revealed no statistically significant
differences with respect to demographic characteristics, disease-related variables, and most
of the goal management or PH variables. However, participants who dropped out had
significantly higher goal disengagement, lower purpose in life and less satisfaction with
participation in society than participants who remained in the study. No differences were
found in dropout rate between the clusters, χ2 (2) = 4.27, ns.
Randomly selected sample: 803
Information letter, informed consent and first questionnaire sent to: 639
Questionnaires returned with informed consent: 331
Excluded based on the application of inclusion and exclusion criteria: 164
Questionnaires returned:Time 2: 290Time 3: 262
Reasons for dropout:60 unknown
4 comorbid disease3 deceased
2 personal circumstances
Figure 1 Flow chart of participants’ attrition during one year.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 62 30-08-16 10:05
63
THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTH
Patterns of goal management at baseline
Descriptive statistics for all study variables at the three measurement points are shown in
Table 2. The mean levels of goal management mainly remained stable throughout the study.
An exception was the strategy of goal maintenance; its mean levels changed significantly over
time, F(2, 486) = 5.07, p = .007. Contrasts showed a significant decrease in goal maintenance
between the first and second measurement point, T1 mean: 46.93, T2 mean: 46.05, F(1, 243)
= 8.11, p = .005. Levels of goal adjustment did not change over time, F(2, 486) = 0.06, ns, nor
did levels of goal disengagement, F(1.89, 454.06) = 0.67, ns, or levels of goal reengagement,
F(2, 480) = 0.28, ns. Given the relative stability of the goal management variables over time,
the baseline values were used for the identification of patterns. The correlation of goal
maintenance with goal adjustment was r = .14, with goal disengagement r = .32, and with
goal reengagement r = -.00. The following correlations were found: goal adjustment with
goal disengagement was r = .32, goal adjustment with goal reengagement r = .43, and goal
disengagement related with goal reengagement r = .30.
First Second Third measurement measurement measurement N T1 N T2 N T3 M (SD) M (SD) M (SD)Goal management Goal maintenance 324 284 254 46.95 (6.23) 46.05 (6.21) 46.10 (6.27) Goal adjustment 325 285 253 51.81 (6.67) 51.67 (6.13) 51.60 (6.44) Goal disengagement 323 284 255 11.63 (2.28) 11.63 (2.32) 11.67 (2.37) Goal reengagement 324 283 255 21.26 (3.62) 21.72 ( 3.30) 21.56 (3.38)Psychological health Depression 328 286 253 4.75 (3.55) 4.74 (3.59) 4.49 (3.52) Anxiety 328 287 253 5.31 (3.73) 5.32 (3.59) 5.05 (3.61) Purpose in life 324 286 257 21.81 (3.81) 21.78 (3.57) 21.69 (3.44) Positive affect 328 286 254 34.17 (7.04) 34.63 (6.70) 34.56 (6.79) Participation 326 284 259 2.67 (.66) 2.64 (.64) 2.68 (.63)Disease related Functional limitations 329 290 262 0.98 (.76) 0.94 (.74) 0.97 (.73) Pain 322 286 255 4.12 (2.47) 4.01 (2.38) 4.11 (2.38) Fatigue 322 274 249 42.17 (26.28) 43.06 (27.14) 43.25 (25.91) Comorbidity 331 na 262 1.49 (1.52) na na 1.24 (1.50)
Notes: N = number of respondents, T1 = first measurement, T2 = second measurement, T3 = third measurement, M = mean, SD = standard deviation, na = not applicable.
Table 2 Means and standard deviations of all study variables and number of respondents on the three
measurements.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 63 30-08-16 10:05
64
CHAPTER 3Ta
ble
3 Ch
arac
teris
tics
of a
ll pa
rtic
ipan
ts o
n ba
selin
e an
d de
fined
by
clus
ter a
nd te
sts
of c
lust
er d
iffer
ence
s.
To
tal
Clus
ter
1
Clus
ter
2 Cl
uste
r 3
Clus
ter
diff
eren
ces
‘Mod
erat
e
‘Bro
ad g
oal
‘Hol
ding
on’
enga
gem
ent’
m
anag
emen
t
repe
rtoi
re’
n (%
) 33
1 14
1 (4
4.20
) 11
0 (3
4.48
) 68
(21.
32)
F-te
sts
Goa
l man
agem
ent -
mea
n (S
D)
Mul
tivar
iate
F (8
, 628
) = 9
6.25
***
Goa
l mai
nten
ance
46
.95
(6.2
3)
42.1
1a (3.
45)
51.5
5b (4.
76)
49.2
3c (5.
18)
F (2
, 316
) = 1
59.3
7***
G
oal a
djus
tmen
t 51
.81
(6.6
7)
51.5
1a (3.
76)
57.4
5b (4.
22)
43.2
2c (5.
26)
F (2
, 316
) = 2
33.5
5***
G
oal d
isen
gage
men
t 11
.63
(2.2
8)
12.4
3a (1.
78)
11.6
5b (2.
56)
9.95
c (1.
80)
F (2
, 316
) = 3
2.38
***
Goa
l ree
ngag
emen
t 21
.26
(3.6
2)
21.3
5a (3.
08)
22.8
8b (3.
35)
18.5
c (3.
60)
F (2
, 316
) = 3
6.49
***
Dem
ogra
phic
and
dis
ease
-rel
ated
fact
ors
Mul
tivar
iate
F (1
6, 5
64) =
5.1
1***
Fem
ale,
% (n
) 61
(202
) 58
.9 (8
3)
60.9
(67)
63
.2 (4
3)
NS
Age
in y
ears
, mea
n (S
D)
62.4
9 (1
2.7)
65
.41a (
11.7
1)
59.1
1b (11
.60)
60
.88b (
14.1
1)
F (2
, 316
) = 8
.76*
**Li
ving
with
par
tner
, % (n
) 72
.8 (2
41)
75.2
(106
) 71
.8 (7
9)
73.5
(50)
N
SFu
ll-tim
e/pa
rt-t
ime
empl
oym
ent,
%(n
) 29
(96)
19
.1 (2
7)
40.9
(45)
32
.8 (2
2)
χ2 (2
) = 1
4.67
**Di
agno
sis
rheu
mat
oid
arth
ritis,
% (n
) 58
(192
) 61
.7 (8
7)
56.4
(62)
57
.4 (3
9)
NS
Dise
ase
dura
tion
in y
ears
, mea
n (S
D)
14.6
7 (1
2.3)
16
.26a (
12.8
9)
14.8
1 (1
2.32
) 10
.92b (
12.9
2)
F (2
, 302
) = 4
.31*
Func
tiona
l lim
itatio
ns, m
ean
(SD)
0.
98 (.
76)
1.06
(.71
) .8
4 (.7
3)
1.02
(.87
) N
SPa
in ra
ting,
mea
n (S
D)
4.12
(2.4
7)
4.21
(2.3
7)
3.92
(2.5
1)
4.39
(2.5
2)
NS
Fatig
ue ra
ting,
mea
n (S
D)
42.1
7 (2
6.28
) 39
.96
(24.
12)
39.9
0a (26
.45)
51
.24b (
27.2
1)
F (2
, 308
) = 5
.39*
*Co
mor
bidi
ties,
mea
n (S
D)
1.49
(1.5
2)
1.40
a (1.
44)
1.35
a (1.
57)
1.96
b (1.
54)
F (2
, 316
) = 3
.96*
Psyc
holo
gica
l hea
lth
– m
ean
(SD)
M
ultiv
aria
te F
(10,
608
) = 9
.10*
**De
pres
sion
4.
75 (3
.55)
5.
30a (
3.32
) 2.
90b (
2.42
) 6.
58c (
4.10
) F
(2, 3
14) =
30.
73**
*An
xiet
y 5.
31 (3
.73)
5.
33a (
3.31
) 4.
05b (
2.79
) 7.
57c (
4.80
) F
(2, 3
14) =
20.
99**
*Pu
rpos
e in
life
21
.81
(3.8
1)
21.2
3a (2.
82)
23.8
3b (3.
80)
19.8
8c (4.
21)
F (2
, 316
) = 1
59.3
7***
Posi
tive
affe
ct
34.1
7 (7
.04)
32
.67a (
6.27
) 37
.96b (
5.79
) 31
.09a (
7.63
) F
(2, 2
14) =
30.
47**
*Pa
rtic
ipat
ion
2.
67 (.
66)
2.59
a (.6
0)
2.90
b (.6
1)
2.45
a (.7
5)
F (2
, 313
) = 1
1.7*
**
Not
es: *
** =
p <
.001
, **
= p
<.0
1, *
= p
< .0
5. M
eans
that
do
not s
hare
the
sam
e su
bscr
ipt d
iffer
p <
.05
in th
e Bo
nfer
roni
-adj
uste
d po
st-h
oc c
ompa
rison
.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 64 30-08-16 10:05
65
THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTH
Results of the cluster analysis are presented in Table 3. At baseline, 319 participants had the
required data for the cluster analysis. Three distinctive patterns of goal management were
identified. Individuals in Cluster 1 (‘Moderate engagement’) comprised 44.20% of the sample.
In this cluster, a low level of goal maintenance coincided with the average reengagement of
goals, slightly lower than average goal adjustment and high goal disengagement. Cluster
2 participants (‘Broad goal management repertoire’) represented 34.48% of the sample.
In this cluster, high scores on goal maintenance, goal adjustment, and goal reengagement
were accompanied with an average level of goal disengagement. Cluster 3 (‘Holding on’)
constituted 21.32% of the sample. In the third cluster, high goal maintenance was accompanied
by low scores on the other three strategies: Goal adjustment, goal disengagement and goal
reengagement. The split half replication led to an identical number of clusters with essentially
identical configurations, thus confirming the 3-cluster solution (cluster 1: n = 79 and n = 70;
cluster 2: n = 64 and n = 49; and cluster 3: n = 25 and n = 32).
As indicated at Time 1, analyses suggested that three clusters were also a good solution for
Time 2 and Time 3. Similarly, these three clusters differed in the level of goal management
strategies. Noteworthy was the fact that identical patterns to those found at Time 1 were
not reproduced, especially not at Time 3. The ICC between the repeated cluster analysis on
the first, second, and third measurement points was .54 (95% CI 0.43 – 0.63; df = 232, 464;
p < .001). Additional analyses using 3 x 3 contingency tables (not shown) revealed that from
Time 1 to Time 2, 60-70% maintained cluster membership to the same cluster. From Time
2 to Time 3, 55-65% stayed in the same cluster. However, the clusters at Time 2 and Time 3
were not identical in content (i.e., levels of goal management and outcome variables) to the
clusters at Time 1, so little can be said about the stability of individuals in clusters over time.
Demographic and disease-related variables differed significantly between the three
clusters (Table 3). The ‘Moderate engagement’ pattern of goal management was more
prevalent among older, unemployed, and/or retired participants compared to both other
clusters, and mean disease duration in this cluster was longer than for participants in the
‘Holding on’ cluster. At baseline, the ‘Holding on’ cluster was significantly associated with
higher average fatigue compared to the ‘Broad goal management repertoire’ cluster. In
addition, participants in the ‘Holding on’ cluster had, on average, more comorbidities
compared to both other clusters.
There were significant differences between clusters with respect to the PH outcomes
at baseline (Table 3). Participants with a ‘Broad goal management repertoire’ scored
significantly lower on depression and anxiety and higher on purpose in life, positive affect
and participation compared to participants in the ‘Moderate engagement’ and the ‘Holding
on’ clusters. Participants in the ‘Moderate engagement’ cluster also scored significantly
lower on depression and anxiety and had more purpose in life compared to the ‘Holding
on’ cluster.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 65 30-08-16 10:05
66
CHAPTER 3Ta
ble
4 M
ean
leve
ls o
f psy
chol
ogic
al h
ealth
out
com
es o
ver t
ime
per c
lust
er.
Cl
uste
r 1
‘Mod
erat
e en
gage
men
t’
Clus
ter
2 ‘B
road
goa
l man
agem
ent
repe
rtoi
re’
Clus
ter
3 ‘H
oldi
ng o
n’M
easu
rem
ent p
oint
(n)
T1 (
141)
T2
(125
) T3
(111
) T1
(110
) T2
(95)
T3
(89)
T1
(68)
T2
(60)
T3
(56)
Depr
essi
on –
mea
n (S
D)
5.30
(3.3
2)
5.09
(3.4
8)
4.93
(3.3
6)
2.90
(2.4
2)
3.12
(2.5
0)
3.07
(2.7
4)
6.58
(4.1
0)
6.57
(4.0
8)
6.08
(4.0
7)An
xiet
y
5.33
(3.3
1)
5.40
(3.0
1)
5.30
(3.0
1)
4.05
(2.7
9)
4.34
(3.2
6)
4.15
(3.2
0)
7.57
(4.8
0)
6.98
(4.5
2)
6.27
(4.7
5)Pu
rpos
e in
life
21
.23
(2.8
2)
21.2
8 (3
.07)
21
.05
(3.0
8)
23.8
3 (3
.80)
23
.29
(3.3
4)
23.2
6 (3
.26)
19
.88
(4.2
1)
20.4
2 (4
.09)
20
.47
(3.6
7)Po
sitiv
e af
fect
32
.67
(6.2
7)
32.9
9 (6
.13)
33
.22
(5.9
8)
37.9
6 (5
.79)
37
.91
(6.1
2)
37.5
6 (6
.41)
31
.09
(7.6
3)
32.3
7 (6
.38)
32
.45
(7.6
0)Pa
rtic
ipat
ion
2.
59 (.
60)
2.60
(.57
) 2.
68 (.
60)
2.90
(.61
) 2.
83 (.
60)
2.83
(.56
) 2.
45 (.
75)
2.46
(.77
) 2.
46 (.
74)
PROEFSCHRIFT_ROOS_ARENDS_def.indd 66 30-08-16 10:05
67
THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTHTa
ble
5 Re
latio
ns b
etw
een
patt
erns
of g
oal m
anag
emen
t and
PH
(dep
ress
ion,
anx
iety
, pur
pose
in li
fe, p
ositi
ve a
ffect
, and
par
ticip
atio
n) o
ver a
one
-yea
r per
iod.
D
epre
ssio
n
Anx
iety
Purp
ose
in li
fe
Po
siti
ve a
ffec
t
Part
icip
atio
n
B (9
5% C
I) p
B (9
5% C
I) p
B (9
5% C
I) p
B (9
5% C
I) p
B (9
5% C
I) p
Dem
ogra
phic
fact
ors
Sex
(fem
ale)
a -.5
9 (-1
.17,
-.01
) .0
5 -.3
5 (-.
96, .
26)
.26
.16
(-.48
, .80
) .6
3 -.2
5 (-1
.43,
.93)
.6
8 .0
8 (-.
02, .
18)
.13
Age
.02
(-.01
, .05
) .1
7 .0
0 (-.
03, .
03)
.85
-.02
(-.05
, .01
) .1
5 -.0
2 (-.
08, .
03)
.39
.00
(-.00
, .01
) .3
7D
isea
se-r
elat
ed fa
ctor
sFu
nctio
nal l
imita
tions
1.
12 (.
52, 1
.72)
<
.001
.5
6 (-.
10, 1
.22)
.1
0 -.6
8 (-1
.37,
.02)
.0
6 -.8
2 (-2
.06,
.43)
.2
0 -.3
6 (-.
46, -
.26)
<
.001
Pain
.0
5 (-.
23, .
13)
.58
.10
(-.09
, .28
) .3
0 .1
0 (-.
16, .
37)
.44
.18
(-.20
, .56
) .3
6 .0
0 (-.
03, .
03)
.95
Fatig
ue
.04
(.02,
.05)
<
.001
.0
4 (.0
3, .0
6)
< .0
01
-.04
(-.06
, -.0
1)
< .0
1 -.0
8 (-.
11, -
.04)
<
.001
-.0
1 (-.
01, -
.00)
<
.001
Com
orbi
dity
.1
1 (-.
13, .
35)
.36
.23
(.01,
.46)
.0
6 .0
7 (-.
17, .
31)
.57
-.07
(-.51
, .37
) .7
5 -.0
5, (-
.09,
-.01
) .0
1G
oal m
anag
emen
t pa
tter
n (v
s cl
uste
r 1:
Mod
erat
e en
gage
men
t)
Cl
uste
r 2: B
road
goa
l -1
.93
(-2.5
4, -1
.32)
< .0
01
-1.1
9 (-1
.82,
-.56
) <
.001
2.
08 (1
.33,
2.8
3)
< .0
01
4.78
(3.4
, 6.1
5)
< .0
01
.19
(.08,
.30)
<
.01
man
agem
ent r
eper
toire
Clus
ter 3
: Hol
ding
on
.96
(.06,
1.8
7)
.04
1.17
(.21
, 2.1
2)
.02
-.86
(-1.8
1, .1
0)
.08
-.41
(-2.0
3, 1
.21)
.6
2 -.0
6 (-.
20, .
09)
.43
Inte
ract
ion
(vs
clus
ter 1
)Ti
me
-.07
(-.31
, .16
) .5
5 .1
1 (-.
14, .
35)
.40
-.10
(-.33
, .14
) .4
3 .2
0 (-.
29, .
69)
.42
.01
(-.03
, .05
) .5
4Cl
uste
r 2 *
tim
e .2
1 (-.
10, .
52)
.18
-.05
(-.41
, .31
) .7
7 -.2
8 (-.
65, 1
0)
.15
-.55
(-1.3
0, 2
.08)
.1
5 -.0
5 (-.
11, -
.00)
.0
4Cl
uste
r 3 *
tim
e -.1
7 (-.
68, .
33)
.50
-.58
(-.11
, -.0
4)
.03
.29
(-.28
, .87
) .3
2 .4
5 (-.
73, 1
.64)
.4
5 -.0
1 (-.
09, .
07)
.84
Inte
ract
ion
(vs
clus
ter 3
)Ti
me
-.25
(-.69
, .20
) .2
8 -.4
8 (-.
96, .
00)
.05
.20
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PROEFSCHRIFT_ROOS_ARENDS_def.indd 67 30-08-16 10:05
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The longitudinal relation between goal management patterns and PH
The results of the longitudinal GEE analyses showed relative stability over time in outcomes
of PH in the three clusters (mean levels over time are presented in Table 4 and the GEE
analyses in Table 5). To assess differences in the course of PH between patients with different
patterns of goal management over time, the interactions between time and cluster of goal
management were studied. Anxiety in the ‘Holding on’ cluster significantly decreased
compared to the ‘Moderate engagement’ cluster (‘Holding on’: β = -0.58, CI = -0.11, -0.04,
p = .03). For patients with a ‘Broad goal management repertoire’, their satisfaction with
participation in society decreased significantly as compared to patients in the ‘Moderate
engagement’ cluster; however, this was a very weak relationship (‘Broad goal management
repertoire’: β = -0.05, CI = -0.11, -0.00, p = .04). All other relationships between cluster and
PH outcomes were stable over time.
There were significant differences between the clusters of goal management concerning
mean levels of PH over time (Table 5). Patients in the ‘Broad goal management repertoire’
cluster had significantly more preferable levels of PH on all five outcomes as compared
to both other clusters. Levels of depressive and anxiety symptoms in this cluster remained
significantly lower over time compared to the ‘Holding on’ and the ‘Moderate engagement’
clusters (compared to the reference group ‘Moderate engagement’: Depression β = -1.93,
p < .001, and anxiety β = -1.19, p < .001). Levels of purpose in life, positive affect, and
participation stayed significantly higher over time in the ‘Broad goal management repertoire’
cluster compared to both other clusters of goal management (PH levels respectively: β = 2.08,
p < .001; β = 4.78, p < .001; and β = 0.19, p < .01, as compared to the ‘Moderate engagement’
cluster). Patients in the ‘Holding on’ cluster had significantly higher levels of depression and
anxiety over time than patients in both other clusters (compared to ‘Moderate engagement’:
Depression β = 0.96, p = .04, and anxiety β = 1.17, p = .02). The ‘Moderate engagement’ and
the ‘Holding on’ clusters did not differ significantly in levels of purpose in life, positive affect
and participation over time.
Discussion
The current study was the first to focus on the relationship between specific patterns of goal
management and psychological health in chronically ill patients. Three distinctive patterns
of goal management were identified among 331 patients with polyarthritis. Most striking
were the differences in levels of psychological health between the three goal management
patterns. At baseline, a broad repertoire of goal management strategies was linked to
higher levels of various indicators of psychological health while the inability to use several
strategies was linked to lower levels of psychological health. The three patterns of goal
management were associated with differing and stable levels of psychological health over
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THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTH
time after controlling for demographic and disease-related factors. Patients characterized by
the ‘Broad goal management repertoire’ pattern at baseline had significantly higher levels
of psychological health over time when compared to patients with the other two patterns of
goal management. This finding corresponds to the cross-sectional analyses on the baseline
data that highlighted the strong relationship between the strategy of goal adjustment and
psychological health [18]. In addition to earlier results, these findings also underline the
necessity to possess a combination of goal management strategies for a healthy level of
psychological health.
In contrast, patients characterized by the ‘Holding on’ pattern at baseline were found to
have stable lower levels of psychological health over time. Earlier studies have indicated that
striving for meaningful goals is related to better psychological health [18,30,23]. The present
study, however, revealed the added value of combinations of goal management capabilities.
When an individual lacks the adaptive flexibility to switch between strategies as needed,
holding onto unattainable goals may be a great source of stress and frustration. Levels of
fatigue and the average number of comorbidities of people with the ‘Holding on’ pattern
were substantially higher when compared to the other two groups. In contrast, mean pain
levels and limitations in functioning due to arthritis for the ‘Holding on’ pattern did not differ
when compared to the other groups. It seems people with the ‘Holding on’ pattern struggled
with limited resources and a high disease burden. An explanation for these observations
might be that people with merely a high preference for goal maintenance might not be able
to respond appropriately to varying circumstances. Repeatedly experiencing the resultant
failure to achieve goals might enlarge the negative impact of polyarthritis on one’s quality of
life. Personality traits of individuals characterized by the ‘Holding on’ pattern might propel
the focus on unattainable goals, eventually provoking frustration and distress [14,15]. This
hypothesis, however, needs further investigation. Nevertheless, people with a ‘Holding on’
pattern of goal management might benefit from additional support and guidance that
would help them to become more flexible when dealing with their threatened goals.
This study showed that a portion of the patients had elevated levels of anxiety over time,
in accordance with the literature [37], as well as elevated levels of depressive symptoms
over time. There were only minimal changes over one year in levels of psychological health,
indicating that arthritis might be experienced by people as an enduring stressor [31]. This
suggests that successful adaptation to a chronic disease does not come naturally with time
for everyone. Therefore, despite having a greater variety of goal management strategies
when compared to patients with the ‘Holding on’ pattern, patients with the ‘Moderate
engagement’ pattern might also profit from additional guidance to strengthen and deploy
various strategies and react in more flexible ways to threatened goal attainment.
The possible negative consequence of clinging to threatened goals does not completely
correspond to the ideas underlying many current interventions for chronic diseases. For
example, self-management interventions are primarily focused on achieving goals by
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increasing self-efficacy [59], and these interventions are motivated by the desire to control
and manage illness and its consequences [60-62]. Designed to only control disease, such self-
management interventions might overlook the goals of maximizing psychological health
and social functioning [63]. The (implicit) focus on holding onto goals might not fit many
patients’ reality nor their capabilities.
Through the use of the Integrated Model of Goal Management in the present study,
the interplay between various goal management strategies has become somewhat
clearer. However, many questions remain unanswered with regard to the relationships
between the strategies. Currently, the research literature lacks empirical evidence as to
whether it is necessary or preferable to step through a range of strategies in a specific
sequence. Nevertheless, an optimal order of application of strategies is assumed in the
literature [64,53,16]. The order of strategies ranges from striving to maintain a threatened
goal, through adjusting the goal, and finally ending by disengaging from the goal and
simultaneously or subsequently reengaging in a new goal. Empirically, endorsement of both
the maintenance of goals and adjustment of goals at the same time was found to relate
negatively to psychological health outcomes, possibly reflecting a regulatory dilemma [65,9].
Boerner et al. [9] assumed the dynamic interplay between those strategies might depend on
the nature of the coping challenge, in other words, the goal(s) at stake. The disengagement
of goals and the reengagement in new goals are considered distinct processes that can
occur simultaneously or in sequence, and have positive implications in both situations [20].
People dealing with chronic health conditions may especially require the simultaneous use
of different strategies, rather than a shift from one to another [11].
Also, individual differences in personal and social support resources might influence a
person’s psychological health and the adaptive value of a pattern of goal management.
Other approaches on internal processes may bring more insight into the simultaneous use of
different strategies. For example, appropriate designs, such as single-case research designs
studies that follow individuals over an extended period of time [66,21] with a focus on the
interplay between personal circumstances, goal management and its effects on psychological
health are needed. Also, future studies that focus on examining goal management in
response to a discrete stressor might prove particularly valuable, as such studies would
allow for the observation of how patients’ modify their strategies when managing current
threatened goals [31].
Some limitations must be noted in the present study. Firstly, the scales on goal management
have applied different kinds of operationalization. The Tenacious Goal Pursuit and Flexible
Goal Adjustment scales are considered to measure dimensions of coping tendencies in
relation to goals in general [53]. These measurements are different from the subscales of the
Goal Adjustment Scale, which measure general tendencies of managing unattainable goals
and particularly focus on the situation in which a goal is perceived as unattainable [20].
Furthermore, due to the low internal consistency of the subscale measuring disengagement,
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related results should be interpreted with caution. However, it was demonstrated that the
four strategies differentiated clearly between groups of patients and related to psychological
health, supporting the inclusion of this range of strategies.
Secondly, in the Integrated Model of Goal Management, disengagement from goals that
are perceived as no longer attainable is considered to be a facet of the broader strategy
of the adjustment of goals and consistent with previous theoretical work [64]. A possible
indication of the accuracy of this hypothesis is the agreement in the direction of both
strategies in the current study. However, the current analyses are not suited for extended
theory testing, and the complex relations between the strategies were not the focus of this
article.
The third limitation of this study lies in the observational character and the lack of clinical
lab data on disease activity. Furthermore, clinical assessment of anxiety or depressive
symptoms was not available in our sample. Moreover, one-fifth of the participants could
not be retained during this longitudinal study, which hampered replication of the cluster
solution over the three measurement points. Due to participants’ attrition, changes in cluster
membership have not been captured in the analysis. Thus, limitations generically associated
with the methods used must be taken into account when considering the findings. These
limitations include biases that are inherent in self-reported data, such as differences in recall
and motivational biases.
Fourthly, being part of the labour force is important for many patients with arthritis as it
relates to family income, status, the availability of social support, and quality of life [67,68].
Unfortunately, it was not possible to include satisfaction with participation in the work
domain in the analyses since the employment status among the population greatly differed
(almost 70% had no paid job or were retired).
Despite these limitations, identifying patterns of goal management strategies has
proved to be an excellent way to study goal management in relationship to psychological
health. The resulting three patterns of goal management are straightforward and well
interpretable, and our study results provide a valuable indication for the development of
interventions promoting psychological health. Furthermore, studying patterns enabled us
to identify common combinations of the four goal management strategies and how these
combinations relate to psychological health. This is a unique finding, and other methods,
for example, using 4-way interactions in regression analysis, would not have revealed
such clear information. Studying patterns of behaviour is also more nuanced and holds
more external validity than examining isolated strategies as conducted in earlier studies.
Clearly future research should replicate these patterns in other populations with different
characteristics and resources that might influence the patterns and their relationship to
patients’ psychological health. Future research should also focus on the effects that support
for using several goal management strategies has on patients’ levels of psychological health.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 71 30-08-16 10:05
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Conclusions
People with arthritis who possessed a broad repertoire of goal management strategies at
the start of the study maintained better mental health over the course of a year. Meanwhile,
patients who lacked multiple goal management strategies at their disposal appeared to have
difficulties with adapting to their chronic disease over time. The three goal management
patterns identified in this study are a clear starting point for intervention and support of
patients, as people who exhibit a pattern related to lower levels of psychological health
can be identified and possibly profit from support that helps them to stimulate new or
other ways to manage their goals. Psychosocial support for such patients could then
focus on helping them to become familiar and practiced in using a broader range of goal
management strategies when dealing with their threatened goals, and thereby increase
their quality of life and psychological well-being.
Acknowledgements
The authors are very grateful to all who participated in this research. In addition, we wish
to thank the participating psychology students for their practical help during this study. We
also thank our two patient partners, Lynn Packwood and Klaas Sikkel, for their additional
perspectives. Furthermore, we are grateful to Peter ten Klooster for his advice on the
statistical analyses and Pim Valentijn for his helpful comments on earlier versions of this
work.
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THE LONGITUDINAL RELATION BETWEEN GOAL MANAGEMENT AND PSYCHOLOGICAL HEALTH
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66 Barlow DH, Nock MK, Hersen M (2009) Single Case Experimental Designs: Strategies for Studying
Behavior Change. 3rd edn. Pearson Allyn & Bacon, Boston
67 Uhlig T (2010) Which patients with rheumatoid arthritis are still working? Arthritis Research and
Therapy 12 (2):114. doi:10.1186/ar2979
68 De Croon EM, Sluiter JK, Nijssen TF, Dijkmans BAC, Lankhorst GJ, Frings-Dresen MHW (2004)
Predictive factors of work disability in rheumatoid arthritis: A systematic literature review. Ann
Rheum Dis 63 (11):1362-1367. doi:10.1136/ard.2003.020115
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4Exploring preferences
for domain-specifi c
goal management in
patients with polyarthritis:
What to do when an
important goal becomes
threatened?
R.Y. Arends
C. Bode
E. Taal
M.A.F.J. van de Laar
Rheumatology International 2015, 35: 18951907
DOI 10.1007/s0029601533368
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Abstract
Usually priorities in goal management – intended to minimize discrepancies between
a given and desired situation – are studied as person characteristics, neglecting possible
domain-specific aspects. However, people may make different decisions in different
situations depending on the importance of the personal issues at stake. Aim of the present
study therefore was to develop arthritis-related vignettes to examine domain-specific goal
management and to explore patients’ preferences.
Based on interviews and literature situation-specific hypothetical stories were developed
in which the main character encounters a problem with a valued goal due to arthritis.
Thirty-one patients (61 % female, mean age 60 years) evaluated the face-validity of the
newly developed vignettes. Secondly, 262 patients (60 % female, mean age: 63 years) were
asked to come up with possible solutions for the problems with attaining a goal described
in a subset of the vignettes. Goal management strategies within the responses and the
preference for the various strategies were identified.
The 11 developed vignettes in three domains were found to be face-valid. In 90 % of the
responses, goal management strategies were identified (31 % goal maintenance, 29 % goal
adjustment, 21 % goal disengagement, and 10 % goal re-engagement). Strategy preference
was related to domains. Solutions containing goal disengagement were the least preferred.
Using vignettes for measuring domain-specific goal management appears as valuable
addition to the existing questionnaires. The vignettes can be used to study how patients
with arthritis cope with threatened goals in specific domains from a patient’s perspective.
Domain-specific strategy preference emphasizes the importance of a situation-specific
instrument.
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Introduction
Chronic conditions present a set of challenges to patients and their families who must
endure behavioral and psychological changes. Patients have to deal with disease symptoms,
increasing disability, emotional impact, complex medical regimens, lifestyle adjustments,
and securing helpful medical care [1]. As a result of the changes that the disease entails,
important personal goals may be threatened or even unachievable [2-4]. In addition to the
emotional impact of the disease and associated challenges, unreachable or threatened goals
may have a negative influence on well-being. Although lower levels of well-being are found
in patients, not all patients experience lower well-being, and, in fact, a substantial number
of patients evaluate their life as meaningful [5-7]. As coping can improve adaptation to
the above mentioned challenges and, consequently, increase well-being, knowledge of
appropriate coping strategies facilitates well-being for those who struggle with finding a
(new) balance in living with a chronic condition.
A way to cope with threatened personal goals is by using goal management which
attempts to minimize discrepancies between the goals of a person and the actual situation
[8,9]. However, the distinction between coping from a dispositional perspective as
opposed to a contextual perspective is a dichotomy among coping theorists [10,11]. These
perspectives contain contrasting underlying determinants of the coping process. Applying
the dispositional and contextual perspectives to goal management, the difference is
whether the applied mode of goal management is determined by stable trait characteristics
of a person or by situation-specific factors. A useful integration of both perspectives can be
found in the model of Moos and Holahan [10], which emphasizes that individuals are active
agents who can shape the outcomes of stressful life circumstances and, in turn, be shaped
by them.
Existing questionnaires about goal management are designed to measure general
tendencies. A series of statements is presented to participants, who are asked to indicate
to what degree a statement describes their typical reaction pattern. As the questionnaires
measure dispositional goal management, they gather information on how a person judges
his or her own behavior in general. However, reflecting the contextual perspective on
coping, people may make different decisions in different situations depending on the
importance of the personal issues at stake. Little is known about the choices that people
make when confronted with limitations and declining ability to perform valued activities in
specific domains. A domain-specific measurement method can be applied for this purpose.
Additionally, the use of questionnaires can raise ambiguity as respondents are asked to
make decisions and judgments from abstract and limited information [12]. It remains, for
example, unclear if a respondent was thinking of a particular goal, occurrence, or time
period when responding to the statements.
Hypothetical scenarios or vignettes that describe arthritis-specific situations might be a
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promising method to collect information on goal management in polyarthritis patients.
Vignettes are valued as a method to measure attitudes, beliefs, and values, especially
about abstract concepts related to health and illness [13,14]. The use of vignettes helps to
standardize stimuli across respondents [12], making it a convenient and expedient method
for collecting extensive amounts of data from large samples [13]. Vignettes should contain
valid and typical situations that are recognizable by the majority of respondents. In that
way, the reaction to the vignette is more comparable with natural daily situations.
Almost two million adults in the Netherlands are diagnosed with a rheumatic disease. In
this group, 420,000 people have a form of inflammatory arthritis [15]. Medical management
may alleviate inflammation and part of the pain, but for many patients fluctuating pain,
fatigue, disability, deformity, and reduced quality of life persists [16,17]. Disease symptoms
like pain, fatigue and functional limitations can make it difficult and even impossible to
attain goals in important life domains [18].
Studies from two different but complementary approaches offer insights into the life
domains that are influenced by arthritis. One approach includes studies that researched
domains from a professional/caregiver, decision-maker, and/or epidemiological perspective
(e.g. [19-24]. Limitations in physical and mental functioning, activities, and participation were
reported [23], and domains influenced by arthritis were specified as: work and remunerative
employment; recreation and leisure, family and social or intimate relationships [23,19,21,25-
27]. Limitations in one domain can have significant impact in other domains of life. For
example, polyarthritis has been demonstrated to negatively influence participation and
work ability [28,21,25], possibly resulting in loss of family income, status and social support
[28].
The second approach is reflected in studies that researched the patient perspective of the
impact of the disease on daily life. Research methodologies are diverse, ranging from: clinical
case reports [29], interview studies using (life) stories of patients [30-32], the use of focus
groups [33], cohort studies using structured interviews [34,35,18], and literature reviews [36].
Some of these patient perspective studies, revealed problems with attaining or maintaining
goals in both private and public domains of life, including work, social relationships, leisure
activities and domestic tasks [2,37]. Most of the previous mentioned studies, however,
focused on what patients reported as important concepts, general outcomes of treatment,
or adjustments made to life. Examples of such reports are: “feeling well in myself,” “being
normal again,” “fatigue,” and “emotional consequences” [33,36]. From studies based on
both the approaches of professional perspective and the patient perspective studies, one
can conclude that arthritis has an influence on a wide variety of life domains of patients
which, therefore, might be useful to distinguish.
Changes in life domains caused by a chronic disease can have psychological and social
consequences for patients and can affect their identity [38]. To have and strive for personal
goals is important for well-being [39,40], while the inability to achieve goals can cause
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frustration and depression. The loss of activities in some domains appears to be more closely
linked to an increase in depressive symptoms than the loss of activities in other domains
[41]. For example, declines in the ability to perform recreational activities and engage in
social interactions were found in the longitudinal study of Katz et al. [41] to be linked to
the onset of depressive symptoms. In particular, when the goals are closely linked to the
identity of a person, unattainable goals can have a negative influence on well-being. Several
studies showed that among rheumatoid arthritis (RA) patients, there is a higher prevalence
of anxiety and depressive symptoms and lower levels of purpose in life than in healthy
controls [42-44]. Psychosocial problems, in turn, can have an adverse influence on disease
burden. Patients experiencing psychosocial problems report higher disease scores and more
pain, even though they do not have higher disease activity or lower functional ability than
other patients [45].
To find an equilibrium between which goals to maintain and which to disengage from may
be a beneficial process to sustain well-being. This implies being flexible and able to react to
obstacles to personal goals in various ways [4,46,47]. People can use several strategies when
they encounter an obstacle on their path to a goal. These goal management strategies are
intended to minimize discrepancies between the given situation and the desired situation.
Ideally, patients would weigh possible strategies against their own potential and constraints
from the environment. Individuals require a repertoire of strategies and skills to successfully
choose and apply the strategies in every particular case of a threat to a goal.
Several goal management strategies are described in the literature. The integrated
model of goal management [4] combines four strategies from the dual process model of
assimilative and accommodative coping [9,8,48] and the goal adjustment model [49]. The
strategies in this model are as follows: (1) Goal maintenance, implying active attempts to
alter unsatisfactory life circumstances and situational constraints in a way that fits personal
preferences. (2) Goal adjustment, the revision of self-evaluative standards and personal goals
in accordance with perceived deficits and losses to make the situation appear less negative
or more acceptable. (3) Goal disengagement, the withdrawing of effort and commitment
from a goal that is perceived as unattainable. (4) Goal re-engagement, the identification,
commitment to and pursuing of new goals, in addition to or instead of other goals.
The overall objective of our study was to examine domain-specific goal management in
arthritis patients. To reach this objective we conducted two studies. The first was to develop
vignettes that reflect a realistic situation in which a valued goal of an arthritis patient is
threatened. The vignette instrument – consisting of situation-specific hypothetical stories
– examines contextual or domain-specific goal management in polyarthritis patients and
expands existing questionnaires. Use of both measures in future research may facilitate the
understanding of how adaptive coping moderates the influence of stressors on well-being.
Our second objective was to use the vignettes to study the goal management strategies that
patients create and prefer when presented the arthritis-specific situations in the vignettes.
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To study the applicability of the integrated model of goal management in practice, the
strategies from this model were used to categorize the answers provided by respondents
and to investigate whether these strategies capture the provided reactions.
Methods
Our objective was to develop a pool of vignettes that could be applied to several situations
and populations (Part 1). The vignettes should contain threatened goals of arthritis
patients specific to domains that may be affected by arthritis. Arthritis patients should
assess the vignettes as recognizable and realistic. After the vignettes were composed and
evaluated, a subset of vignettes was chosen to study patients’ reactions to the vignettes
(Part 2). Our interest in this second part was mainly the applicability of the vignettes to
study goal management strategies of arthritis patients. For this purpose, we chose the most
generic vignettes for our subset, as not all vignettes were relevant and applicable for this
sample of arthritis patients. In Part 2, we had the following questions: (1) Are the four goal
management strategies; goal maintenance, goal adjustment, goal disengagement, and goal
re-engagement, recognizable in the answers? (2) Are the four strategies exhaustive? (3) Do
the strategies that the respondents mention and prefer differ between the domains? In
addition, we added an “open vignette”, in which respondents were asked to describe one of
their own situations in which a goal was threatened due to arthritis. This additional vignette
was used to study, in an explorative way, the themes and domains people mentioned. The
study was approved by the internal review board of the Faculty of Behavioural Sciences at
the University of Twente.
Part 1: development of vignettes
To identify the vignette topics, interviews with patients with rheumatoid arthritis (RA) about
coping with arthritis and with threatened personal goals [50] and literature on limitations
and threatened domains experienced by arthritis patients were used. Eleven hypothetical
stories in which the main character encounters a problem with a valued goal due to arthritis
were formulated. The wording and use of language of the vignettes was initially tested
in a small pilot study. There were no difficulties regarding the wording, language and
understanding of the vignettes. Only small adjustments were made in sentence structure.
Sample
Participants of the “Arthritis Research Partners” forum of the Arthritis Centre Twente
were invited to participate in testing the feasibility of the vignettes. This forum consists of
voluntary participants who have a rheumatic condition for at least two years and are willing
to cooperate in research. Invitation letters were sent to 40 forum participants, and after a
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week, people were contacted by telephone. Thirty-two persons were willing to participate
(response rate 80 %).
Participants
Thirty-one persons with RA participated in a questionnaire study (61% female, mean age:
59.5 years). Demographics of the participants are shown in Table 1 (Part 1). One person was
excluded due to too much missing data.
Table 1 Demographic characteristics of the participants
Demographic characteristics Part 1: Development Part 2: Goal management strategiesSex, n (%) 31 262 Male 12 (38.7) 105 (40.1) Female 19 (61.3) 157 (59.9)Age (years), mean (SD), range 59.5 (13.2), 33-83 62.8 (11.7), 33-90Marital status, n (%) Notlivingwithpartner/nopartner 7(22.6) 61(23.3) Living with partner 24 (77.4) 196 (74.8) Missing data 0 5 (1.9)Educational level, n (%) a No/Lower 4(12.9) 96(36.7) Secondary 19 (61.3) 109 (41.6) Higher 8 (25.8) 51 (19.4) Missing data 0 6 (2.3)Work status, n (%) No paid job 18 (58.1) 179 (68.3) Full-time and part-time employment 13 (41.9) 79 (30.1) Missing data 4 (1.5)Disease duration (years), mean (SD) 13.3 (11.1) 15.9 (12.2)Comorbidities, n(%)/mean (SD) b 17 (54.8) 1.6 (1.5)Pain, mean (SD) c N/A 4.11(2.4)HAQ-DI d , mean (SD) N/A 0.97(0.7)
a Low: No education, primary school or lower vocational education; Middle: high school and middle vocational education; High: high vocational education and university. b Comorbidities were measured in different ways in the two studies. c Amount of pain in the past week: 1=not at all – 10= unbearable. d HAQ-DI: measures functional limitations in arthritis patients [51]
Procedure and questionnaire
Participants could participate in the study either at home or at the university, in the
presence of a student-assistant. Participants were asked to read and answer the vignettes
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and subsequently answer seven written questions regarding the vignettes regarding the
face validity and understandability of the vignettes. Examples include whether participants
had understood the vignettes, whether they found the vignettes realistic, and whether
the impact of RA on their life as portrayed in the vignettes was personally recognizable
(questions appear in Table 4). A five-point Likert-scale was used, with 1 = totally disagree
and 5 = totally agree. Also the spontaneous reactions of participants after reading the
vignettes were collected and content-analyzed.
Part 2: goal management strategies in response to a subset of vignettes
Sample and recruitment
For the second study, the vignettes were included in a larger questionnaire study. For
more details on design and methods, see Arends et al. [4]. The study consisted of three
measurement waves. Participants were randomly selected from the electronic diagnosis
registration system of an outpatient clinic for rheumatology. The following inclusion criteria
were applied to select participants: (1) patient is diagnosed with polyarthritis and (2) patient
is receiving treatment for polyarthritis. After initial selection, the rheumatologists checked
the charts for the additional inclusion criteria: (3) patient is 18 years or older and (4) patient
is able to complete the questionnaire in Dutch, either autonomously or with help from
a relative. Out of 803 patients, 636 patients met the inclusion criteria and received an
invitation letter, questionnaire and informed consent form. Information on demographics,
goal management, indicators of adaptation to a chronic disease, and disease characteristics
was collected. In the third measurement wave that contained the vignettes, 262 patients
participated (59.9 % female, mean age 62.8 years). Demographic and clinical characteristics
of respondents are shown in Table 1 (Part 2).
Vignettes
The vignettes were included at the end of the questionnaire. The exact (translated) wording
of the introduction for the vignettes appears in Fig. 1. First an example vignette was given
along with possible answer options for that particular vignette. The example vignette was
specifically written for this purpose and does not stem from the earlier described study on
the development of the vignettes. Subsequently, three vignettes from different life domains
are presented (Fig. 2). The first vignette is from the social domain - the main character
experiences problems with participating in the annual Family Day games and sports due
to physical pain. (In the Netherlands, a Family Day is usually a day where activities are
organized for the extended family to strengthen their relationships). The second vignette
deals with problems in the leisure activities domain. Due to the unavailability of adjustments
and facilities, the main character experiences problems during vacation with the caravan.
The third vignette deals with the domain of independent functioning. Due to physical pain,
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the main character has difficulties working in the garden. In addition, we asked people to
describe one of their own (current or past) situations in which they experienced problems
in attaining a personal goal. For every vignette, participants were asked to answer the
following two questions: (1) What possible solutions can you come up with for the problem
described above? (to a maximum of six solutions) and (2) How likely is it that you would try
this solution? Participants were then asked to rate their own described solutions on a scale
from 1 (I would absolutely try this) to 5 (I would never try this).
Figure 1 Introduction and example vignette
Analysis of responses
A detailed codebook was developed in discussion rounds between two authors (ET and
RYA). The codebook contained a description of the strategies and examples of answers per
vignette (see Table 2 for examples). The same two authors separately coded 10 % of the
answers for every vignette. For two vignettes, a sufficient degree of agreement was reached
after the first coding round. Based on the consensus of the authors, the encodings of the
Explanation: Here you find three stories of problems that people with arthritis may encounter. Imagine that due to your arthritis, you experience the following situations. How would you react? What possible solutions can you think of? Describe a number of possible solutions below every story. Please indicate next to your solutions how likely it is that you would opt for that solution. Write down the solutions that spontaneously come to mind. You do not have to be exhaustive and there are no wrong answers!The stories may not match your life or the things that you deem valuable. Or it may be that, in contrast to the character in the story, you experience few limitations from your arthritis. In any case, would you try to empathize with the situation and respond as if it could happen to you?Here is an example of a story like those on the following page.
Example vignette: Nienke is a 17-year-old girl, who has been diagnosed with juvenile arthritis at 10 years of age. For a few years now she is grooming a horse that she loves to pamper, care and ride. Lately, however, she has problems with mounting the horse and holding the reins, due to problems with her hands. Also, the horseback riding lessons have become more and more tiring, and Nienke finds it difficult to keep up with the other girls in class.
Examples of solutions:A. Stop riding and find another hobby in which my arthritis is not a limitation.B. Use aids, such as a stool for mounting and just keep on enjoying horseback riding. C. Continue to care for the horse but quit the horseback riding lessons. D. Continue the horseback riding lessons until it has become impossible. Horseback riding is very important
for me; I will not give it up!
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remaining vignette (Family Day) were discussed again and the codebook was clarified.
Another 10 % of the responses on this vignette were coded by the same two authors and
then a sufficient degree of agreement was reached for this vignette as well (see Table 2).
The open vignette was content-analyzed to study, in an explorative way, the themes and
domains people mentioned.
Figure 2 The subset of vignettes about Family Day, Caravan holiday and Gardening.
Family Day You have a large family. Once a year, all gather for a Family Day. Every one engages in games and sporting activities all day and, towards the evening, gathers to enjoy a cozy meal together. You have always very much enjoyed the family day because of its coziness and warm atmosphere. Moreover, you were always keen on the games and tried hard to be the winner. Since you have arthritis, your passion for the day’s activities has decreased. The games and sporting activities are often physical and you are less able to participate because of your arthritis.
Caravan Holiday Each year you go on a two-week caravan holiday. Since you have arthritis, you notice that these holidays are becoming a strain. Life in a caravan levies a heavy toll on you, since it does not provide you with the adjustments and conveniences available to you at home.
Gardening You live in a house with a large garden. You have always enjoyed working in the garden. You always did things yourself, from mowing the lawn and planting the flower bulbs to pruning the trees and clipping the hedges. Since a while, you can no longer work in the garden as you used to. You can’t, for example, bend as easily as you used to in order to remove weeds. It certainly is no longer possible to work in the garden for hours and hours. Especially on cold days, you suffer more than usual after having worked in the garden.
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Table 2 Definitions of strategies, examples of answers and degree of similarity per vignette.
a Cohen’s kappa.
Results
Part 1: results of vignette development
Content of the vignettes
The 11 vignettes all have a main character that is diagnosed with RA. In each situation, the
impact of the disease on daily life is described as the main character always encounters a
limitation or difficulty. The stories are set in three different domains: the social domain,
the leisure activities domain, and the independent functioning domain (Table 3). Topics of
the vignettes in the social domain are activities with partner, children, family, and friends.
In the leisure activities domain, the topics are sports, holidays, hobby, and volunteering.
In the independent functioning domain, the topics are gardening, household tasks, and
running errands. Seven vignettes are formulated in the same way for men and women,
except the name of the main character is entered to match the gender of the respondent.
Four vignettes contain various activities focused on more typical female or male activities.
Vignette 1: Vignette 2: Vignette 3: Family Day Caravan Holiday Gardening Description Example of Kappa a Example of Kappa Example of Kappa solution solution solutionMaintenance Active attempts Try to join all .59 Raise the bed .72 Spread the work .91of goals to adjust the day and accept by using a over several environment so the setback I higher mattress. days. that your goal get later. is attainable.Adjustment of Adjust the goal Participate in .79 Sell the caravan .79 Ask someone .71goals to what is everything but and spend the else to do the feasible, given less fanatically. holidays in a heavy work. the situation. hotel.Disengagement Withdrawing Be present, but .70 Going on 1.00 Consider moving .76of goals of effort and no longer vacation is too to an apartment. commitment participate in strenuous, from a goal. the activities. efforts outweigh the pleasure.Re-engagement Identification, Start taking .79 Make day trips. 1.00 Eventually let the 1.00of goals committing to pictures instead. garden run wild and starting to and make a pursue new photo diary of it goal(s). until I die.
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Table 3 Overview vignettes
Face validity
Seven questions were used in order to assess whether people understood the vignettes
and whether they were face-valid (Table 4). The median scores were four or five, which
means that on average the participants agreed or totally agreed with the statements. All
participants understood the stories and 97 % agreed or totally agreed with the statement
that the stories were easy to understand. Another 83 % could empathize with the main
character, while 13 % responded neutrally to that question. Over 90 % agreed or totally
agreed with the statement, “I found the stories realistic / recognizable.” The impact of RA
was recognizable to 94 % of the participants and another 87 % found the impact of RA
realistic.
Domain Vignette Short description Limitation because of RASocial Partner Day walking with partner. Fatigue Children (men) Mountain biking every Sunday Physical pain morning with sons. Children (woman) Day of shopping with daughters. Fatigue and problems with fine motor skills Family Day# Family Day with games and sports. Physical pain Friends Weekend away with friends. Fatigue Cycling one day during the weekend. Leisure activities Sports Twice weekly tennis. Physical pain Caravan holiday# Two weeks a year on vacation Unavailability of adjustments with a caravan. Hobby (men) Model trains Problems with fine motor skills Hobby (woman) Create your own gift cards. Problems with fine motor skills Volunteering Assist two mornings in a nursing Physical pain, fatigue home. Independent Gardening# Working in the garden. Always do Physical painfunctioning everything yourself. Household tasks Major activities in the household, Physical pain, heavy work such as window cleaning. Running errands Twice weekly errands. Physical pain, fatigue
# Vignette used in Part 2
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Table 4 Vignette face validity and comprehensibility: median, SD and frequencies.
Median 1 2 3 4 5I have understood the stories. 5 5 26The stories were easy to understand. 5 1 6 24IwasabletoempathizewithPieter/Karin. 4 1 4 13 13I found the stories realistic. 4 3 16 12I found the stories recognizable. 5 2 13 16I found the impact of RA recognizable. 4 1 1 14 15I found the impact of RA realistic. 4 4 17 10
1 = totally disagree, 2= disagree, 3= neutral, 4= agree, 5= totally agree
The spontaneous reactions to the vignettes supported the general picture that respondents
found the vignettes clear and recognizable. Some stories were more in line with the patient’s
own life than others. Few participants (n = 5) disliked the stories because the main topic was
about the disease. For example, spontaneous reactions of participants were: “No, not fun
to read if you empathize with the main character, as she experiences increasing limitations
due to RA. It is recognizable though” and “I think it’s never fun to read because it is about
a disease. I’d rather not read it”. Some participants (n = 7) did not reflect on their own
situation as they read the stories, for example: “No, I am too down to earth for that” and
“No, as my own situation is already adjusted.” In general, respondents liked reading the
stories.
Part 2: goal management strategies in response to arthritis specific vignettes
Solutions given in response to the problems described in the vignettes
A total of 262 respondents completed the questionnaire, of which 194 provided one or more
solutions to the problems described in the vignettes (74 %). In total 1221 responses were
given to the three vignettes (Table 5). One third of the solutions submitted in response to
the vignettes could be coded as the strategy maintenance of goals (30 %), closely followed
by the strategy adjustment of goals (29 %). Another 21 % of the solutions were coded as
disengagement of goals, where only 10 % involved the strategy reengagement of goals.
Another 10 % of the answers were unclassifiable, mostly ranging from comments on the
applicability of the vignette (for example, “I am still able to do this,” and “I have no garden”)
to answers showing that the instructions were not well understood (for example: “I would
maybe try this,” and “Yes, a lot of pain”). In a minority of the unclassifiable responses, two
themes were recognizable, i.e., stigma and positive recommendations, that did not relate to
threatened goals, though they are related to arthritis.
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e re
spon
ses
tile
resp
onse
s
(%)
(%
)
(%)
(%
)M
aint
enan
ce
90 (1
9)
1 1.
25
1 - 2
.25
148
(36)
1
1 1
- 2
180
(38)
1
1 1
- 2
418
(31)
1
1Ad
just
men
t 13
0 (2
8)
1 1
1 - 2
14
7 (3
5)
2 1
1 - 2
11
3 (2
4)
2 1
1 - 2
39
0 (2
9)
1 1
Dise
ngag
emen
t 93
(20)
3
4 1
- 5
59 (1
4)
4 4
1 - 5
12
7 (2
7)
2 3
1 - 4
27
9 (2
1)
3 3
Re-e
ngag
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t 12
2 (2
6)
1 1
1 - 2
11
(3)
2 3
1 - 4
1
(0)
2 0
2 - 2
13
4 (1
0)
1 1
Uncl
assifi
able
33
(7)
51
(12)
47 (1
0)
13
1 (1
0)
To
tal n
umbe
r of
resp
onse
s pe
r 43
5
365
42
1
1221
vign
ette
b
a 1 =
I w
ould
abs
olut
ely
try
this,
2 =
I w
ould
pro
babl
y tr
y th
is, 3
= I
wou
ld m
aybe
try
this,
4=
I w
ould
pro
babl
y no
t try
this,
5 =
I w
ould
nev
er tr
y th
is. b R
espo
nden
ts c
ould
gi
ve a
max
imum
of 6
resp
onse
s. c I
Q ra
nge:
inte
rqua
rtile
rang
e.
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EXPLORING PREFERENCES FOR DOMAIN-SPECIFIC GOAL MANAGEMENT
Preference of the goal management strategies
In general, participants would absolutely or probably try the solutions that they named. Only
solutions that involved the disengagement of goals were less preferred, and, on average,
participants indicated that they would only maybe execute such disengagement solutions.
Strategies per domain
In the social domain (vignette 1), almost one-third of solutions suggested adjustment of
the goal by participating less fanatically in the games and activities during Family Day
(Table 5). Solutions coded as re-engagement were mentioned in 26 % of the answers;
most people thought of joining the Family Day organization or becoming game judges.
Maintenance of goals could be recognized in one-fifth of the answers, for example, when
people suggested devices and tools that would facilitate participation in the games or that
they would participate despite problems or pain later. Solutions coded as disengagement
of goals contained, for example, skipping the day activities and only going for dinner and
being there all day, but not taking part in the games. Solutions that involved the adjustment
of goals, the re-engagement of goals and the maintenance of goals were highly preferred.
Solutions that entailed the disengagement of goals were less preferred.
In the leisure activities domain (vignette 2), solutions coded as maintenance of goals were
mentioned most frequently. For example, most people mentioned the use of assistive devices
or other adaptations to the environment to facilitate their stay in the caravan. Maintenance
of goals was closely followed by the adjustment of goals, where people suggested arranging
their holiday in a different way, for example, by staying in a holiday house or hotel instead
of a caravan. Examples of solutions involving the disengagement of goals were: staying at
home and selling the caravan. A small portion of the solutions involved the re-engagement
of goals. For example, one solution was to take day trips instead of going on a two-week
holiday. In this leisure activity domain, the solutions that involved the maintenance of goals
were the highest preferred, followed by adjustment of goals and then re-engagement of
goals. Solutions coded as disengagement once again had the lowest preference score.
In the domain independent functioning (vignette 3), most solutions that people provided
were coded as maintenance of goals. Solutions were, for example, to use assistive devices or
to spread the gardening work over several days. The disengagement of goals was reflected
in almost one-third of the solutions, for example, when respondents suggested having the
garden completely maintained by a gardener or moving to an apartment. In one-fourth
of the solutions, adjustment of goals was recognized, for example, when respondents
suggested hiring a gardener or asking for help from family members for larger gardening
tasks. Only one solution could be coded as containing re-engagement of goals, namely to
“eventually let the garden run wild and make a photo diary of it until I die.” The solutions
coded as maintenance of goals were the highest preferred, followed by adjustment of goals
and disengagement of goals.
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Themes and domains mentioned in the open vignette
A number of themes could be identified in the open vignette. In the vast majority of
the answers, people reported about their own limitations (e.g., pain, fatigue, functional
limitations, or activities that they are no longer able to perform), personal goals that
are threatened (e.g., an abandoned or threatened hobby or the personal solution for a
threatened hobby), and their course of disease (adjustments already performed, thoughts
about the future, precise disease course). In addition, two minor themes were recognized
that not directly related to threatened goals. Firstly people described the stigma they
experienced (specific experiences or, in general, a lack of understanding from others).
Secondly respondents described positive recommendations (e.g., ways to stay positive,
advice for functioning or how to stay independent). In a none-of-the-above category,
descriptions of problems that were not directly related to arthritis or answers that expressed
no problems with arthritis were grouped together.
Discussion and conclusion
Our overall objective was to study domain-specific goal management in arthritis patients. In
the first part of the study, 11 vignettes – situation-specific hypothetical stories in which the
main character encounters a problem with a valued goal due to arthritis – were developed.
The vignettes were found to be face-valid, that is, respondents found the situations and the
impact of arthritis described in the vignettes understandable, realistic, and recognizable.
The second part of the study focused on the solutions given by patients with polyarthritis
to resolve situations described in a subset of the vignettes. The goal management strategies,
including goal maintenance, goal adjustment, goal disengagement, and goal re-engagement,
were recognized in a large majority of the solutions. Only 10 % of the solutions could not be
coded as one of the four pre-defined strategies. No new or other goal management strategy
could be recognized in these unclassifiable answers, however, two types of responses clearly
emerged. The first type consisted of comments on the applicability of the vignettes, and the
second type was composed of comments showing that respondents did not understand the
instructions. From these results, it can be concluded that the four strategies are exhaustive
in response to the vignettes. This outcome supports the use of the integrated model of goal
management in examining goal management in arthritis patients.
Overall, the strategies of goal maintenance, goal adjustment, and goal disengagement
were frequently mentioned in all three domains. However, some differences in mentioned
and preferred goal management strategies could be identified between the domains. While
goal reengagement was mentioned as a solution in a quarter of the responses to the social
vignette, this strategy was rarely mentioned in response to the other two vignettes. The
most popular strategies in the social domain were goal adjustment, i.e., still participating
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EXPLORING PREFERENCES FOR DOMAIN-SPECIFIC GOAL MANAGEMENT
but less fanatically, and reengagement, i.e., assuming another role in the event, for example
by joining the organizing committee. On the other hand, maintenance of goals was less
often mentioned in the social vignette in comparison with the other two vignettes, perhaps
because adjusting goals and reengaging in new goals were seen as acceptable alternatives
in this particular vignette. Limitations in the social domain can provoke an increase in
depressive symptoms [41] which may explain why people devise many different ways in
order to remain involved in a social activity like a Family Day, either by scaling down or
by searching for alternative social goals. In contrast, both in the leisure domain and the
independent functioning domain, maintaining goals by customizing the environment and
using assistive devices was most popular. Goal disengagement was mentioned in all three
vignettes, but overall less preferred than the other strategies. One possible explanation
for the unpopularity of disengagement is that the striving for personal goals is important
for well-being and identity [39,40]. It seems that people would rather try to adapt their
personal goals than disengage from them despite serious limitations or problems that they
might face when attempting to achieve the goal.
Earlier research revealed positive relations of adjusting threatened goals with the well-
being of patients with arthritis [4]. Also for maintaining goals and re-engagement in
goals, clear positive relations to successful adaptation were found [4, see also 49]. The
main conclusion of the study of Arends et al. [4] was the importance of flexibility in the
management of goals. The present study showed that people could come up with various
strategies in their solutions. Future studies should reveal how people who experience
threatened goals due to arthritis select and apply goal management strategies and how
effective those strategies are for them.
An additional open vignette was used to study in an explorative way the themes and
domains people might mention. An open vignette can also be seen as a way to receive
feedback on the completeness of the domains in the set of vignettes developed in Part 1
of this study. From the analysis of the topics mentioned in the open vignettes, it appeared
that people did not find any specific domain lacking from the developed vignettes. In
fact, the functional limitations and domains mentioned by the participants corresponded
to the content of the complete set of vignettes developed in the first part of this study.
Therefore we concluded that our set of vignettes is exhaustive. Two minor themes that were
mentioned were similar to themes found in other studies, that is, firstly some respondents
described experienced stigma by others [2,52,53], and secondly, respondents mentioned
keeping positive as a recommendation to other patients [54,30]. Those two themes also
appeared in the unclassifiable answers to the first three vignettes. Obviously, these themes
are important for a number of respondents.
Some critical comments can be given on the study. First is the absence of the work domain
in the present set of vignettes. Clearly the (in)ability to work can be an important factor for
arthritis patients, as problems with work due to arthritis can negatively influence quality
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CHAPTER 4
of life [55], family income, status, and the availability of social support [28]. However, since
employment status among polyarthritis patients greatly differs, it was difficult to develop a
work-related vignette that would be recognizable to the majority of intended respondents.
It would be worthwhile in future research to develop a vignette on full-time work for the
subgroup of respondents that are working fulltime.
During the development of the codebook, it became clear that precision of recognition
of goal management strategies was closely related to a clearly defined goal. For example,
in the Family Day vignette, the threatened goal was ambiguous, and therefore, some
answers were difficult to interpret and code. This shows that despite the use of vignettes,
some lack of clarity unfortunately still exists with regard to the goals people had in mind
when answering. Consequently, future studies should clearly define the threatened goal
in the vignette and ask respondents already in the development process – for example, via
cognitive interviewing techniques – for their interpretation of the threatened goal in the
story.
In addition, the content of the Family Day vignette may not be representative of all
social situations. The presented threatened goal in this vignette was not the quality of
social relations, but rather the participation in a social activity. This should be kept in mind
when interpreting the results of this study. Also, a selection of three vignettes was used to
study their applicability with a large sample of patients. It is possible, therefore, that some
respondents could not identify with the chosen selection. Future studies could use all the
vignettes, in order to study more domain-specific goal management in patient populations.
We chose not to analyze the given solutions per person, but to study the general patterns
of strategies named by all the respondents. The responses of people who provided the
maximum of six solutions thus counted more heavily than those who reported a smaller
set. However, we were interested in general patterns and not in preferences for goal
management strategies per individual.
Further research could offer more insight into the roles that both personal traits and
characteristics of the situation play in the deployment of goal management strategies. Also,
one can imagine that people in one life stage are rather more inclined to release goals in
certain domains than people in other life stages. Similarly, people with severe functional
limitations possibly make different choices than people who experience less limitations or
disease severity. The vignettes can be a useful method for future research into differences
in domain-specific goal management between groups of respondents. Further studies
should focus on the predictive value of the vignettes for successful adaptation. Likewise,
a comparison between dispositional questionnaires and domain-specific vignettes will give
insight into the construct validity.
The developed vignettes can be used to study how arthritis patients cope with threatened
goals in specific domains from a patient’s perspective. The vignettes were found to be
face-valid and the replies to the vignettes could be coded using a codebook. The use of a
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EXPLORING PREFERENCES FOR DOMAIN-SPECIFIC GOAL MANAGEMENT
detailed codebook made it possible to apply the vignettes to a large sample of respondents.
Responses to the developed vignettes provided valuable information about domain-specific
goal management. Results showed that the preferences for goal management strategies
differ per domain, emphasizing the importance of the addition of a situation-specific
instrument. Finally, this study showed that using vignettes for measuring domain-specific
goal management is a valuable addition to the existing questionnaires that measure
dispositional goal management.
Acknowledgements
The authors are very grateful to all the participants in the study. We also thank psychology
students Nikki Boerrigter and Irina Lehmann for their practical help in this study.
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The effect of a goal
management programme
on the psychological
health of people with
arthritis and mild
depressive symptoms
Part II
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5
PROEFSCHRIFT_ROOS_ARENDS_def.indd 104 30-08-16 10:05
5A goal management
intervention for
polyarthritis patients:
Rationale and design
of a randomized
controlled trial
R.Y. Arends
C. Bode
E. Taal
M.A.F.J. van de Laar
BMC Musculoskeletal Disorders 2013, 14:239
DOI: 10.1186/1471247414239.
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CHAPTER 5
Abstract
Background
A health promotion intervention was developed for inflammatory arthritis patients, based
on goal management. Elevated levels of depression and anxiety symptoms, which indicate
maladjustment, are found in such patients. Other indicators of adaptation to chronic disease
are positive affect, purpose in life and social participation. The new intervention focuses on
to improving adaptation by increasing psychological and social well-being and decreasing
symptoms of affective disorders. Content includes how patients can cope with activities
and life goals that are threatened or have become impossible to attain due to arthritis.
The four goal management strategies used are: goal maintenance, goal adjustment, goal
disengagement and reengagement. Ability to use various goal management strategies,
coping versatility and self-efficacy are hypothesized to mediate the intervention’s effect on
primary and secondary outcomes. The primary outcome is depressive symptoms. Secondary
outcomes are anxiety symptoms, positive affect, purpose in life, social participation, pain,
fatigue and physical functioning. A cost-effectiveness analysis and stakeholders’ analysis are
planned.
Methods / Design
The protocol-based psycho-educational program consists of six group-based meetings
and homework assignments, led by a trained nurse. Participants are introduced to goal
management strategies and learn to use these strategies to cope with threatened personal
goals. Four general hospitals participate in a randomized controlled trial with one
intervention group and a waiting list control condition.
Discussion
The purpose of this study is to evaluate the effectiveness of a goal management intervention.
The study has a holistic focus as both the absence of psychological distress and presence of
well-being are assessed. In the intervention, applicable goal management competencies are
learned that assist people in their choice of behaviors to sustain and enhance their quality
of life.
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RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION
Background
The World Health Organization’s definition of health was first stated in 1948 as: ‘a state of
complete physical, mental and social wellbeing and not merely the absence of disease or
infirmity’ [1]. Current health systems are still, to a large extent, organized around treatment
and cure of specific diseases, reflecting only the second part of the WHO’s definition of
health. This results in a focus on disease instead of on health and well-being. We believe
that, particularly in the case of chronic diseases, the focus needs to shift to stimulate
adaptation to disease and to achieve well-being. We introduce an intervention aimed
at people with a chronic condition, based on the capacities and needs of the individual
person. The new intervention is based on goal management and is designed to improve
peoples’ adaptation to their condition of polyarthritis. Therefore, the intervention focuses
on increasing psychological and social well-being and decreasing symptoms of affective
disorders. In this article, the theoretical background and the content of the intervention
are described. Furthermore, we describe the design of a randomized controlled trial on the
effectiveness of the intervention for increasing adaptation to polyarthritis.
Adaptation to chronic disease
Suffering a chronic disease increases the risk for the development of secondary conditions
and disabilities that often lead to further declines in health status, independence, functional
status, life satisfaction, and overall quality of life [2]. Aside from the physical effects and
requirements concerning lifestyle changes, a chronic disease often has major psychological
and social consequences for patients. Instead of being seen as a ‘distinct biological entity
existing alone and apart from the person’ [3], a chronic disease often becomes part of
the identity of a person. In essence, all chronic diseases present a similar set of challenges
to the patients and their families including dealing with symptoms, disability, emotional
impact, complex medical regimens, difficult lifestyle adjustments, and securing helpful
medical care [4]. According to the International Classification of Functioning, Disability and
Health (ICF), individuals with chronic and disabling conditions are fully capable of being
healthy and experiencing a satisfying subjective quality of life [5,2]. Notwithstanding this
perspective, psychological distress is common in persons with polyarthritis [6], indicating
that adaptation to the disease is not necessarily natural. For example, patients with
rheumatoid arthritis (RA), one of the most common forms of polyarthritis, experience
elevated levels of depressive mood and anxiety in comparison with healthy controls [7,8].
Research indicates 20 to 40% of RA patients suffer from heightened depression and
anxiety levels [7,9-12], and depressive and anxiety symptoms are seen as key indicators of
unsuccessful adaptation to polyarthritis. However, the absence of psychological distress is
not the only essential outcome of adaptation; well-being is similarly essential [12,5,13]. For
example, emotional well-being is found to predict long-term prognosis of physical illness;
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CHAPTER 5
higher levels of emotional well-being tend to benefit recovery and survival rates [14].
The inclusion of the following three constructs reflects a comprehensive view on
adaptation: positive affect, purpose in life and social participation. Studies have shown
that, when levels of pain are elevated in patients with arthritis, positive affect was able to
prevent an increase in negative affect [15,16]. Furthermore, the level of purpose in life of
people with RA was found to be lower in comparison with healthy persons [17] and other
studies showed that polyarthritis had a negative influence on the social participation and
the work ability of the people affected [18-20]. We hope to capture the full effect of the
goal management intervention by taking into account the influence the intervention has on
both negative and positive indicators of adaptation to polyarthritis.
Self-management versus health promotion
The management of most chronic diseases is an extensive responsibility that takes place
mostly outside the healthcare system, as people have to manage a chronic disease everyday
in combination with possibly conflicting roles and tasks [21]. In fact, the patient, family and
community have become active participants in managing chronic disease [22]. Therefore,
active self-management and interventions supporting patients in the acquisition of skills
and techniques to that help patients learn to live with their disease are seen as essential [23].
A wide variety of self-management interventions has been developed for several chronic
conditions. Self-management is ‘the individuals’ ability to manage the symptoms, treatment,
physical and psychosocial consequences and lifestyle changes inherent in living with a
chronic condition’ [24]. Reasonable evidence exists that self-management interventions are
beneficial for a wide population of people with chronic diseases, for example, persons with
diabetes, hypertension, heart disease and macular degeneration [25,26].
Despite receiving substantial attention in the literature, fewer benefits attained by persons
with inflammatory arthritis have been reported [25]. Usually the effects of self-management
interventions found for people with inflammatory arthritis are negligible to small [27,23].
Also, improvements are rarely sustained over a longer time (e.g., 9 to 14 months follow-up)
[27-29]. The aforementioned term ‘self-management’ is used in literature to describe both
health-oriented and disease management interventions [26], and this may cause confusion
regarding the content and focus of interventions. The most frequently offered and studied
self-management program for people with arthritis is the Arthritis Self-Management Course
[30,31], in which common problems with day-to-day care of arthritis patients are central.
Most self-management interventions deal with the medical and behavioral management
of a chronic disease, but changing roles and emotional distress due to the disease are not
systematically incorporated into intervention programs [26]. Health protection or disease
management interventions are motivated by the desire to control and manage illness and its
consequences [32] and accommodate the unilateral focus on disease and disability. Health
promotion, in contrast, is not disease or illness specific, but has illness or disability as context
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RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION
[33]. Moreover, health promotion interventions are intended to promote health and well-
being, reflecting the aforementioned perspective of the ICF [5] that individuals with chronic
and disabling conditions are fully capable of being healthy and experiencing a satisfying
quality of life. Although both health promotion interventions and disease management
interventions may focus on similar behaviors (e.g., exercise and medication adherence for
persons with arthritis), there is a critical difference in the key outcomes assessed. Studies on
disease management interventions usually do not include positive psychological and social
well-being measures as outcomes. As opposed to common outcome measures of disease-
specific self-management interventions (e.g., pain and disability), the outcomes of health
promotion interventions should reflect the broad perspective of the WHO on adaptation
to a chronic disease [5]: the experience of quality of life and being healthy in psychological
and social terms.
This article introduces a health promotion intervention based on goal management theory
developed for people with polyarthritis. Instead of a focus on the management of the
disease (as, for example, delivered by the Arthritis Self-management Course), attention is
given to how the patient can cope with activities and life goals that have become impossible
to attain or are threatened due to arthritis [12]. We will explain the theory upon which the
intervention is based in the next sections.
A health promotion intervention based on goal management: A different approach
The key features of the goal management intervention arise from the characteristics of a
health promotion intervention (Table 1). Although these key features are interrelated, we
briefly discuss them individually. Firstly, the aim of the intervention is to improve psychological
health as well as social and physical functioning. These concepts are intertwined and the
intervention is, therefore, aimed to all three concepts. Secondly, the aim of the intervention
follows the idea that a holistic approach comprises all aspects of the patient’s life. Thirdly,
the perspective is person-focused as opposed to an orientation towards a patient-centered
disease held by most self-management interventions. In a person-focused view, body systems
are seen as interrelated [34] and the illness as experienced by the patient becomes central.
This perspective is opposed to a disease or outsiders’ viewpoint. In a disease perspective, the
focus is placed on a set of symptoms that together form a disease, which implies a particular
treatment. Multimorbidity or psychosocial problems play no explicit role in this perspective.
The fourth point is that the content of the goal management intervention centers around
capabilities and personal potential, and, therefore, can be applied in different disease
populations.
Fifth, patients give substance to their own personal trajectory, in contrast to self-
management interventions with a predetermined course content [26]. The sixth distinctive
feature is that patients learn general applicable goal management competencies that are
not disease or problem specific, but can be used in daily life for various difficult situations.
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CHAPTER 5
Acquiring these goal management competencies aptly complements the health promotion
tradition as these competencies assist people in the choice of behaviors that sustain and
enhance quality of life within the context of living with a chronic disease [2]. Also, as the
focus is on using the existing possibilities and social network of a person and one’s own
abilities to solve problems, the goal management intervention will promote resilience.
Although the intervention described in this article is, in the first instance, developed for
people with polyarthritis, due to all the intervention’s key features, it can easily be adapted
for other chronic diseases or disabilities.
Table 1 Goal management intervention versus disease-specific self-management interventions
Difference in: Disease-specific self-management Goal management intervention intervention Aim of intervention Control and management of disease Maximizing psychological health, social and physical functioningFocus/approach Reductionist HolisticPerspective Patient-centered (disease-specific orienta- Person-focused (body systems are tion) | Outsiders’ perspective (disease) interrelated) | Insider’s perspective (illness)Content Disease-specific Multiple-related diseases | Not disease-specificSubject-matter Predetermination of course content Room for personal problems and difficulties Acquisition of Specific competencies for predetermined General multi-deployable competencies assumed problems
Based on: Starfield, 2011 [34]; Lorig & Holman, 2003 [26]; and Stuifbergen et al., 2010 [2].
Goal management
The intervention was developed based on theories of goal management. Having and striving
for personal goals can give structure and meaning to life and keep a person engaged
in meaningful activities [35,36]. Striving for personal goals may, however, also produce
negative psychological effects when people are unable to progress to a desired goal [37,38].
Goal management strategies (possible ways to react to difficulties along the path towards a
goal) are intended to minimize discrepancies between the actual situation and the goals a
person has [12]. The Integrated Model of Goal Management [12] combines strategies from
two different theories, namely the dual process model of assimilative and accommodative
coping [39-41] and the Goal adjustment model [42]. The resulting four goal management
strategies can be applied in different situations. Firstly, the strategy goal maintenance which
implies active attempts to alter unsatisfactory life circumstances and situational constraints
in accordance with personal preferences [40]. Secondly, the strategy goal adjustment is an
approach to adjust personal goals to the personal limit of what remains possible when facing
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RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION
difficulties on the path to a goal [40]. Goal adjustment is the revision of self-evaluative
standards and personal goals in accordance with perceived deficits and losses. Thirdly,
the strategy goal disengagement is theorized to be one of the poles of the continuum of
goal adjustment, as disengagement is an ultimate form of adjusting goals, namely, letting
go of goals. Goal disengagement is applied when goals are experienced as no longer
attainable [42,35]. This strategy implies the withdrawing of effort and commitment from an
unattainable goal, having the benefit of releasing limited resources that can be deployed
for engaging in new goals and alternative goals. Finally, the strategy goal reengagement
implies identifying, committing to and starting to pursue new goals [42]. New goals can fill
the space created by the release of unattainable goals.
Polyarthritis
For patients with polyarthritis, maintaining one’s life goals from before disease onset
is often impossible [43]. The term polyarthritis is used to indicate a variety of disorders,
including rheumatoid arthritis (RA), psoriatic arthritis and ankylosing spondylitis. People
with polyarthritis generally experience inflammation and swelling in joints, and despite
improved medical treatment in the last decades, persisting pain, fatigue, disability, deformity,
distress and reduced quality of life are daily stressors that patients have to cope with [44,45].
As a consequence, patients often face difficulties with attaining or maintaining goals in
several domains of life, including work, social relationships, leisure activities and domestic
tasks [46,47]. The loss of valued life activities, in particular declines in the ability to perform
recreational activities and engage in social interactions, is found to be a predictor of the
development of depressive symptoms [48].
Goal management and adaptation to polyarthritis
Both striving for goals (the strategies of goal maintenance and goal reengagement), as well
as accepting a given situation and the scaling down of goals (goal disengagement and goal
adjustment) are of great value for adaptation. A previous study indicates that the tendency
to use these strategies is associated with adaptation to arthritis [12]. Especially for people
with inflammatory arthritis, who must deal with the disease’s unpredictable and fluctuating
course, being able to use different approaches across situations can be beneficial [49]. An
intervention based on the flexible use of goal management strategies could be promising as
it can teach persons to respond to the demands of any situation in an appropriate way. The
ability to use a variety of strategies across different situations is denoted by coping flexibility
[50]. Despite its possible benefits for adjustment, coping flexibility is rarely studied in the
context of chronic disease [51]. One study showed that an increase in coping flexibility was
associated with a decreased depressed mood in patients with arthritis [52].
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CHAPTER 5
Aims of the current study
For methodological reasons we have chosen one primary outcome and several secondary
outcomes. Because of its comparability with other research, depressive symptoms are the
main focus in this study. Firstly, depression in patients with arthritis is a well-researched
and documented phenomenon [53,54,48,55]. The second reason is that most research
on goal management in other patient groups also focused on depression as (one of the)
main outcome measure(s) [56,41,57,58]. Our main hypothesis is that the goal management
intervention leads to a significant reduction of depressive symptoms in polyarthritis patients
compared to the control condition. In addition, we hypothesize a significant reduction in
anxiety symptoms, and a significant improvement in positive affect, purpose in life and
satisfaction with participation in patients receiving the intervention as compared to the
control condition. We further explore the effect of the intervention on the disease-related
outcomes of pain, fatigue and physical functioning.
Moreover, we hypothesize that the ability to use all four goal management strategies
and to choose between them depending on the situation mediates the intervention’s
effect on depression. Goal management competencies are also hypothesized to mediate
the intervention’s effect on the secondary outcomes of anxiety, positive affect, purpose in
life and satisfaction with participation. Traditionally, self-efficacy for coping with disease
symptoms is found to be correlated with the effect of disease-specific self-management
interventions for arthritis patients [30]. Although the goal management intervention is not
explicitly designed to increase self-efficacy, we plan to study self-efficacy as an additional
putative mediator on the primary and secondary outcomes. Finally, the cost-effectiveness
of the intervention is analyzed in terms of medical and non-medical costs. It is conceivable
that, in the long run, non-medical costs might decrease because of more realistic planning
behavior and decreased absenteeism from work. Additionally, a stakeholders’ analysis of
the goal management intervention is executed in order to support and promote future
implementation.
Methods and design
Participants
The study has been approved by the medical ethics committee Twente, number NL40257.044.12.
Participants are recruited via arthritis clinics in four general hospitals in The Netherlands,
located in the East and Southeast areas of the country. Moreover, people from existing
databases of research participants are invited to participate. Also local newspapers and
contacts with patient organizations are used to reach potential participants. The process
for obtaining participant informed consent is in accordance with all applicable regulatory
requirements.
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RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION
The research population consists of people with polyarthritis (as defined by the DBC
classification system) with a psychological risk profile. The specific inclusion criteria are: 1)
age of 18 years or over, 2) diagnosis of polyarthritis, and 3) score of four or higher on the
depression subscale of the Hospital Anxiety and Depression Scale (HADS). People with severe
distress are excluded and the treating rheumatologist is informed. Severe distress is measured
as a total score on the HADS (the total of both the depression and anxiety subscales) of 22
or higher. The cut-off score is based on literature [59,60]. In addition, insufficient Dutch
language skills and actual enrolment in psychotherapeutic treatment at the moment of
study are exclusion criteria.
Randomization
The participants are assigned in a 1:1 ratio to either the experimental group or the control
group. Patient allocation is be done by means of blocked stratified randomisation per site in
random block sizes of 2 and 4 to make sure that both conditions are equally distributed in
each participating hospital. The study is open label, as it is impossible, due to the nature of
the program, to blind the staff and participants involved to the condition which the patient
is allocated.
Experimental condition
The program consists of six group-based meetings with 8 to 10 participants and individual
homework assignments. “Doelbewust!” is a protocol-based psychosocial educational program.
Doelbewust is the Dutch word for “purposefully” and we have translated this program name
into English as “Right On Target”. The program is led by a trained nurse. Participants are
introduced to different goal management strategies and learn to use these strategies to
cope in a flexible way with threatened personal goals. The goal management strategies that
are covered in the program are: goal maintenance, goal adjustment, goal disengagement,
and goal reengagement [39-42].
Table 2 lists the topics, goals, and applied techniques for each meeting of the program.
The general structure of each meeting is as follows: a short review of the contents of the
previous meeting; introducing the topics of the current meeting; elaborating the topics by
group discussions and by practicing in individual, dual and group exercises; and explaining
homework assignments for the next meeting. A pilot was executed to test the feasibility of
the program protocol.
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CHAPTER 5
Tabl
e 2
Cont
ents
of t
he g
oal m
anag
emen
t pro
gram
Mee
ting
To
pic
Mai
n go
als
mee
ting
A
pplie
d te
chni
ques
# 1
Arth
ritis
in d
aily
life
Be
com
e aw
are
of th
e in
fluen
ce o
f In
form
atio
n (g
ener
al),
inst
ruct
ion,
pro
blem
iden
tifica
tion,
beh
avio
ral i
nfor
mat
ion
poly
arth
ritis
in th
e di
ffere
nt d
omai
ns o
f (n
arra
tives
), m
odel
ing
(by
narr
ativ
es),
vica
rious
rein
forc
emen
t (na
rrat
ives
),
lif
e.
com
paris
on (w
ith n
arra
tives
and
oth
er p
artic
ipan
ts),
emot
iona
l soc
ial s
uppo
rt (b
y
othe
r par
ticip
ants
), se
t hom
ewor
k ta
sks,
prom
pt (e
mai
l afte
r mee
ting
to d
o ho
mew
ork)
.2
Impo
rtan
t per
sona
l goa
ls L
ink
activ
ities
that
are
thre
aten
ed b
y
Info
rmat
ion
(goa
ls, p
yram
id a
nd h
iera
rchy
of g
oals
), re
fram
ing
(hie
rarc
hy o
f
po
lyar
thrit
isw
ithth
eas
soci
ated
hig
her
low
er/h
ighe
rord
erg
oals
),in
stru
ctio
n,p
robl
emid
entifi
catio
n(g
oalh
iera
rchy
and
goal
s. m
ain
goal
s), b
ehav
iora
l inf
orm
atio
n (g
oal m
anag
emen
t str
ateg
ies)
, rec
ord
Dist
ingu
ish
betw
een
low
er o
rder
and
an
tece
dent
s an
d co
nseq
uenc
es o
f beh
avio
r (di
scus
sion
of g
oal m
anag
emen
t
hi
gher
ord
er g
oals.
st
rate
gies
), m
odel
ing
(by
othe
r par
ticip
ants
), co
gniti
ve re
stru
ctur
ing
(dis
cuss
ion
of
Di
scus
s th
e fo
ur g
oal m
anag
emen
t go
al m
anag
emen
t str
ateg
ies)
, em
otio
nal s
ocia
l sup
port
, set
hom
ewor
k ta
sks,
prob
lem
stra
tegi
es a
nd th
eir p
ros
and
cons
and
id
entifi
catio
n (h
omew
ork:
defi
ne th
reat
ened
act
ivity
)
ac
com
pany
ing
emot
ions
.
3 De
alin
g w
ith g
oals
Fo
rmul
ate
the
first
thre
aten
ed a
ctiv
ity
Info
rmat
ion
(gen
eral
), fe
edba
ck (g
roup
dis
cuss
ion
on th
reat
ened
act
ivity
), so
cial
for t
he p
erso
nal t
raje
ctor
y. co
mpa
rison
(gro
up d
iscu
ssio
n), v
icar
ious
rein
forc
emen
t (gr
oup
disc
ussi
on),
gene
ral
Expl
ore
the
feas
ibili
ty o
f goa
l pr
oble
m s
olvi
ng, r
ecor
d an
tece
dent
s an
d co
nseq
uenc
es o
f beh
avio
r (m
enta
l
m
anag
emen
t str
ateg
ies
for r
esol
ving
si
mul
atio
n), i
mag
ery
(men
tal s
imul
atio
n), m
enta
l reh
ears
al (m
enta
l sim
ulat
ion)
,
th
reat
ened
act
ivity
. de
cisi
on m
akin
g (m
enta
l sim
ulat
ion)
refra
min
g (o
f goa
l man
agem
ent s
trat
egie
s by
m
enta
l sim
ulat
ion)
, set
hom
ewor
k ta
sks,
plan
ning
(hom
ewor
k: w
rite
actio
n pl
an)
4 Em
otio
ns &
Act
ion
plan
De
sign
act
ion
plan
for t
he p
erso
nal
Feed
back
(gro
up d
iscu
ssio
n on
act
ion
plan
), so
cial
com
paris
on (g
roup
dis
cuss
ion)
,
tr
ajec
tory
. vi
cario
us re
info
rcem
ent (
grou
p di
scus
sion
), pl
anni
ng (a
ctio
n pl
an),
copi
ng p
lann
ing
Antic
ipat
e re
sist
ance
for c
hang
e fro
m
(act
ion
plan
), in
form
atio
n (e
mot
ions
and
resi
stan
ce),
mod
elin
g (b
y pe
rson
al ro
le
se
lf an
d so
cial
env
ironm
ent.
mod
el),
vica
rious
rein
forc
emen
ts (r
ole
mod
el),
set h
omew
ork
task
s, pr
actic
e be
havi
or
(goa
l man
agem
ent s
trat
egy
by a
ctio
n pl
an),
prom
pt (e
mai
l afte
r mee
ting
to e
xecu
te
actio
n pl
an)
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115
RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION5
Alte
rnat
ive
goal
Ev
alua
te a
ctio
n pl
an a
nd th
e go
al
Goa
l rev
iew
(eva
luat
ion
exec
utio
n ac
tion
plan
), fe
edba
ck, s
ocia
l com
paris
on (g
roup
m
anag
emen
t str
ateg
y
man
agem
ent s
trat
egy
used
. di
scus
sion
), ge
nera
l pro
blem
sol
ving
, rec
ord
ante
cede
nts
and
cons
eque
nces
of
&
Eva
luat
ion
Choo
se n
ew a
ctiv
ity fo
r per
sona
l be
havi
or (m
enta
l sim
ulat
ion)
, im
ager
y (m
enta
l sim
ulat
ion)
, men
tal r
ehea
rsal
(men
tal
traj
ecto
ry a
nd p
ract
ice
alte
rnat
ive
goal
si
mul
atio
n), d
ecis
ion
mak
ing
(men
tal s
imul
atio
n) re
fram
ing
(of g
oal m
anag
emen
t
m
anag
emen
t str
ateg
y to
sol
ve p
robl
ems
stra
tegi
es b
y m
enta
l sim
ulat
ion)
, cog
nitiv
e re
stru
ctur
ing
(of g
oal m
anag
emen
t
w
ith th
e pa
rtic
ular
act
ivity
. st
rate
gies
), pl
anni
ng (a
ctio
n pl
an),
copi
ng p
lann
ing
(act
ion
plan
), se
t hom
ewor
k ta
sks,
pr
actic
e be
havi
or (e
xecu
tion
of a
ctio
n pl
an a
nd g
oal m
anag
emen
t str
ateg
y), r
elap
se
prev
entio
n (p
erso
nal w
arni
ng s
igns
)6
Look
ing
back
and
ahe
ad
Eval
uate
act
ion
plan
and
use
d go
al
Goa
l rev
iew
(eva
luat
ion
exec
utio
n ac
tion
plan
), fe
edba
ck, s
ocia
l com
paris
on (g
roup
man
agem
ent s
trat
egie
s. di
scus
sion
), re
laps
e pr
even
tion
(per
sona
l war
ning
sig
ns),
copi
ng p
lann
ing
(per
sona
l
Co
nsol
idat
e le
arne
d sk
ills
and
w
arni
ng s
igns
), co
gniti
ve re
stru
ctur
ing
(of g
oal m
anag
emen
t str
ateg
ies)
, pla
nnin
g
co
mpe
tenc
ies.
(pla
n ac
tions
for f
utur
e), c
opin
g pl
anni
ng (p
lan
actio
ns fo
r fut
ure)
Eval
uate
pro
gres
s du
ring
prog
ram
.
Not
es. #
Adap
ted
from
Mic
hie
et a
l., 2
008
[61]
; Abr
aham
& M
ichi
e, 2
008
[62]
; and
Vrie
zeko
lk e
t al.,
201
3 [5
2]. B
ehav
iora
l inf
orm
atio
n: p
rovi
de in
form
atio
n ab
out
ante
cede
nts
or c
onse
quen
ces
of th
e be
havi
or, o
r con
sequ
ence
s be
twee
n th
em, o
r beh
avio
r cha
nge
tech
niqu
es; C
ogni
tive
res
truc
turi
ng: c
hang
ing
cogn
ition
s ab
out
caus
es a
nd c
onse
quen
ces
of b
ehav
ior;
Com
pari
son:
pro
vide
com
para
tive
data
(cf.
stan
dard
, per
son’
s ow
n pa
st b
ehav
ior,
othe
rs’ b
ehav
ior);
Cop
ing
plan
ning
: ide
ntify
an
d pl
an w
ays
of o
verc
omin
g ba
rrie
rs; D
ecis
ion
mak
ing:
gen
erat
e al
tern
ativ
e co
urse
s of
act
ion,
and
pro
s an
d co
ns o
f eac
h, a
nd w
eigh
them
aga
inst
eac
h ot
her;
Emot
iona
l soc
ial s
uppo
rt: o
ther
par
ticip
ants
and
trai
ner l
iste
n, p
rovi
de e
mpa
thy
and
give
gen
eral
ized
pos
itive
feed
back
; Fee
dbac
k: o
f (se
lf-) m
onito
red
beha
vior
; G
oal r
evie
w: a
sses
s ex
tent
to w
hich
the
targ
et b
ehav
ior i
s ac
hiev
ed, i
dent
ify fa
ctor
s in
fluen
cing
this
ach
ieve
men
t and
am
end
targ
et if
app
ropr
iate
; Im
ager
y: u
se
plan
ned
imag
es to
impl
emen
t beh
avio
r cha
nge
tech
niqu
es; M
odel
ing:
obs
erve
the
beha
vior
of o
ther
s; Pl
anni
ng: i
dent
ify c
ompo
nent
par
ts o
f beh
avio
r and
mak
e a
plan
to
exe
cute
eac
hon
eor
con
side
rwhe
nan
d/or
whe
rea
beh
avio
rwill
be
perfo
rmed
,i.e
.sch
edul
ebe
havi
ors;
Prom
pt: s
timul
us th
at e
licits
beh
avio
r (in
cl. t
elep
hone
cal
ls o
r em
ail r
emin
ders
des
igne
d to
pro
mpt
the
beha
vior
); Re
cord
ant
eced
ents
and
con
sequ
ence
s of
beh
avio
r: so
cial
and
env
ironm
enta
l situ
atio
ns a
nd e
vent
s, em
otio
ns,
cogn
ition
s; Re
laps
e pr
even
tion
: ide
ntify
situ
atio
ns th
at in
crea
se th
e lik
elih
ood
of re
turn
ing
to a
risk
beh
avio
r or f
ailin
g to
per
form
a n
ew b
ehav
ior a
nd h
elp
to p
lan
how
to
avo
id o
r man
age
the
situ
atio
n, s
o th
at n
ew b
ehav
iora
l rou
tines
are
mai
ntai
ned;
Soc
ial c
ompa
riso
n: p
rovi
de o
ppor
tuni
ties
for s
ocia
l com
paris
on e
.g.,
grou
p le
arni
ng;
Vica
riou
s re
info
rcem
ent:
obse
rve
the
cons
eque
nces
of o
ther
’s be
havi
or. N
o de
finiti
on a
vaila
ble:
Gen
eral
pro
blem
sol
ving
; Inf
orm
atio
n; In
stru
ctio
n; M
enta
l re
hear
sal;
Prac
tice
beh
avio
r; Pr
oble
m id
enti
ficat
ion;
Ref
ram
ing;
Set
hom
ewor
k ta
sks.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 115 30-08-16 10:05
116
CHAPTER 5
Topics
In the first meeting participants are encouraged to think about the influence arthritis has
on their lives. Four narratives of fictive patients are introduced that are used throughout
the whole program to discuss adaptation and the use of goal management strategies.
Themes presented in the narratives are threatened personal goals, the goal management
strategies, the role of the social environment, and accompanying emotions. Central in the
first meeting is recognition, accomplished through comparison of the participant’s own
situation with the aforementioned narratives and through the exchange of experiences with
other participants. Topics in the second meeting are identifying threatened personal goals
and becoming acquainted with the various goal management strategies. Participants are
encouraged to explore attitudes, behaviors and emotions related to the goal management
strategies, using figures that depict the various strategies (Figure 1).
By formulating lower and higher order goals and discussing the goal management
strategies, participants gain insights into their own behavior and preferences for strategies
regarding vital threatened goals. In addition, by using the goal hierarchy pyramid (see
Figure 2) to differentiate between higher order and lower order goals, participants will be
helped to choose suitable goal management strategies for threatened goals at a later stage.
During the next meetings, participants choose a threatened activity and a suitable goal
management strategy, and formulate and execute a personal action plan for the activity
(meetings 3, 4 and 5). Every step in this process is evaluated individually by homework
exercises and discussed in a group setting. In the fourth meeting, resistance to change
and support from the social environment are also addressed. Central in the fifth and sixth
meetings is the execution of alternative goal management strategies. In the sixth meeting,
the consolidation of learned skills and competencies and the prevention of relapse in
unbeneficial behavior are also addressed. Personal warning signs are used to anticipate a
relapse into undesired behavior and also the use of support from the social environment is
stimulated to prevent relapse.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 116 30-08-16 10:05
117
RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION
A. Maintenance of goals
B. Adjustment of goals
C. Disengagement of goals
D. Reengagement in new goals
Figure 1 Figures representing the four goal management strategies (A-D)#
# Copyright: 2012 R.Y. Arends, C. Bode, E. Taal, M.A.F.J. van de Laar.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 117 30-08-16 10:05
118
CHAPTER 5
Figure 2 Example of the Goal hierarchy pyramid#
#Note. Instructions: Choose an activity that you care about and that is threatened by your rheumatic condition. Write the activity on the bottom layer of the pyramid. Consider whether there is a ‘higher’ goal you can put on the level above. It may help to ask yourself the following questions: Why is this important for me? What is it about the activity that appeals to me? Not all levels in the pyramid always need to be filled, just try to work your way up the pyramid as far as you can.
Behavior change techniques
Many health psychologists have argued for a more precise description of intervention
content, including specifying techniques used to accomplish behavior change [61]. The
explicit communication of intervention content is necessary to study effective ingredients
and to further improve the effectiveness of interventions in the future. In the context of
these developments, the techniques used in the program are listed for each meeting in
Table 2. A couple of techniques that originated from cognitive behavior therapy are used
to stimulate the flexible use of the goal management strategies. Those techniques are used
regularly in psychosocial interventions: group discussions, personal feedback, planning,
self-examination and mental simulation (see Table 2 for a complete list). In particular, the
technique of mental simulation is used to stimulate people to apply a new, and until now
not preferred, goal management strategy. Progress to achieve goals is reached through the
mental simulation of the initiation and maintenance of activities that help to reach a goal
[63]. This technique has shown its feasibility and effectiveness in other studies [64,65].
PROEFSCHRIFT_ROOS_ARENDS_def.indd 118 30-08-16 10:05
119
RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION
Trainers
Specialized nurses in rheumatology care train and support the groups. Participants have
the same trainer during the entire intervention period. Before the start of the program,
the nurses received a full day ‘train-the-trainer’ course. In this training, the nurses worked
through the entire program as a participant and completed the homework assignments
to experience the techniques used in the program. In a second phase, the nurses gave the
exercises themselves and received detailed feedback on their performance. At the end of
the train-the-trainer course, trainers’ knowledge and skills concerning goal management
and learned intervention techniques were evaluated. During the study period, trainers
receive monitoring and regular supervision by a psychologist.
Control condition
Participants in the waiting list condition do not receive the “Right On Target” program
immediately. Eight months after entry into the study, which is directly after the last follow-
up measurement, participants on the waiting list are invited to follow the program.
Measurements
Table 3 gives an overview of the properties of the measurement instruments used. Participants
are asked to complete six questionnaires including: intake, baseline (T0), directly after the
end of the program (T1), 2 months after the end of the program (T2), 4 months after the
end of the program (T3), and 6 months after the end of the program (T4). Nearly all the
instruments listed in Table 3 were applied in a previous study with polyarthritis patients
[12], and, when available, Cronbach’s alphas from that previous study also appear in Table 3.
PROEFSCHRIFT_ROOS_ARENDS_def.indd 119 30-08-16 10:05
120
CHAPTER 5Ta
ble
3 St
udy
para
met
ers,
prop
ertie
s of
the
corr
espo
ndin
g in
stru
men
ts a
nd th
eir m
easu
rem
ent p
oint
(s)
Cont
ent
Mea
sure
men
t Sc
ale
Refe
renc
e Ex
ampl
e ite
m
Scal
e Cr
onba
ch’s
Item
s Re
spon
se o
ptio
ns
po
int
ra
nge
alph
a a
Depr
essi
on
Inta
ke, T
0, T
1,
Hosp
ital A
nxie
ty a
nd
Zigm
ond
& S
naith
, I h
ave
lost
inte
rest
in
0-21
.8
1 7
vario
us re
spon
se fo
rmat
(0-3
)
T4
Depr
essi
on S
cale
(HAD
S)
1983
[60]
m
y ap
pear
ance
.
Anxi
ety
In
take
, T0,
T1,
HA
DS
Zigm
ond
& S
naith
, 198
3 I f
eel t
ense
or w
ound
up.
0-
21
.83
7 va
rious
resp
onse
form
at (0
-3)
T4
Po
sitiv
e T0
, T1,
T4
Posi
tive
subs
cale
of t
he
Wat
son,
Cla
rk, &
Ra
te h
ow y
ou fe
lt du
ring
10-5
0 .9
2 10
ve
ry s
light
ly o
r not
at a
ll (1
) -af
fect
Posi
tive
and
Neg
ativ
e
Telle
gen,
198
8 [6
6]
the
past
wee
k: e
.g.,
ve
ry m
uch
(5)
Affe
ct S
ched
ule
(PAN
AS)
at
tent
ive,
inte
rest
ed.
Pu
rpos
e
T0, T
1, T
4 Pu
rpos
e In
Life
sca
le (P
IL)
Ryff,
198
9 [6
7]; R
yff &
M
y da
ily a
ctiv
ities
ofte
n 6-
30
.82
6 st
rong
ly d
isag
ree
(1) -
in li
fe
Keye
s, 19
95 [6
8]
seem
triv
ial a
nd
st
rong
ly a
gree
(5)
unim
port
ant t
o m
e.So
cial
par
ti-
T0, T
1, T
4ci
patio
n
Fam
ily ro
le, a
uton
omy
Ca
rdol
, De
Haan
, Do
mai
n au
tono
my
0-4
.76
25
very
goo
d (0
) -
ou
tdoo
rs, s
ocia
l rel
atio
ns
De Jo
ng, V
an d
en B
os,
outd
oors
: The
very
poo
r (4
)
an
d w
ork
and
educ
atio
n
& D
e G
root
, 200
1 [6
9]
poss
ibili
ty to
spe
nd
su
bsca
les
of th
e Im
pact
my
(spa
re) t
ime
like
on P
artic
ipat
ion
and
I wan
t to
is…
Auto
nom
y (IP
A)
ques
tionn
aire
Pain
T0
, T1,
T4
1 ite
m w
ith 1
00 m
m
- Pl
ease
indi
cate
how
0-
100
- 1
no p
ain
at a
ll (0
) -
vi
sual
ana
logu
e sc
ale
m
uch
pain
you
had
in
un
bear
able
pai
n (1
00)
the
last
7 d
ays
due
to
your
con
ditio
n?
Fatig
ue
T0, T
1, T
4 1
item
with
100
mm
-
Plea
se in
dica
te y
our
0-10
0 -
1 no
fatig
ue (0
) -
vi
sual
ana
logu
e sc
ale
le
vel o
f fat
igue
com
plet
ely
exha
uste
d (1
00)
aver
aged
ove
r the
pa
st 7
day
s?
PROEFSCHRIFT_ROOS_ARENDS_def.indd 120 30-08-16 10:05
121
RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTIONPh
ysic
al
T0, T
1, T
4 RA
ND-
36 p
hysi
cal
War
e &
She
rbou
rne,
Do
es y
our h
ealth
lim
it
10-3
0 -
10
Yes,
limite
d a
lot (
1) –
func
tioni
ng
fu
nctio
n su
bsca
le
1992
[70]
; Van
der
Zee
yo
u in
thes
e ac
tiviti
es?
No,
not
lim
ited
at a
ll (3
)
& S
ande
rman
, 201
2 [7
1]
If so
, how
muc
h?
E.
g., W
alki
ng a
hal
f mile
.G
oal m
ain-
T0
, T1,
T4
Tena
ciou
s G
oal
Bran
dtst
ädte
r & R
enne
r, W
hen
face
d w
ith
15-7
5 .7
3 15
st
rong
ly d
isag
ree
(1) -
tena
nce
Pu
rsui
t (TG
P)
199
0 [7
2]
diffi
culti
es, I
usu
ally
stro
ngly
agr
ee (5
)
do
uble
my
effo
rts.
Goa
l T0
, T1,
T4
Flex
ible
Goa
l Br
andt
städ
ter &
Ren
ner,
I ada
pt q
uite
eas
ily
15-7
5 .7
9 15
st
rong
ly d
isag
ree
(1) -
adju
stm
ent
Ad
just
men
t Sca
le (F
GA)
19
90
to c
hang
es in
pla
ns
st
rong
ly a
gree
(5)
or c
ircum
stan
ces.
Goa
l dis
- T0
, T1,
T4
Goa
l Adj
ustm
ent S
cale
W
rosc
h, S
chei
er, M
iller
, If
I hav
e to
sto
p
4-20
.5
3 4
stro
ngly
dis
agre
e (1
) -en
gage
men
t
et
al.,
200
3 [4
2]
purs
uing
an
impo
rtan
t
stro
ngly
agr
ee (5
)
go
al in
my
life,
it’s
easy
fo
r me
to re
duce
my
effo
rt to
war
ds a
goa
l. G
oal r
e-
T0, T
1, T
4 G
oal A
djus
tmen
t Sca
le
Wro
sch,
Sch
eier
, If
I hav
e to
sto
p 6-
30
.88
6 st
rong
ly d
isag
ree
(1) -
enga
gem
ent
Mill
er, e
t al.,
200
3 pu
rsui
ng a
n im
port
ant
st
rong
ly a
gree
(5)
goal
in m
y lif
e, I
seek
othe
r mea
ning
ful g
oals.
Goa
l man
a-
T0, T
1, T
4 G
oal M
anag
emen
t
See
artic
le’s
text
-
- -
Ope
n en
ded
gem
ent
St
rate
gy V
igne
ttes
stra
tegi
es
(G
MSV
)Co
ping
T0
, T1,
T4
Copi
ng F
lexi
bilit
y Vr
ieze
kolk
, Van
I c
an e
asily
cha
nge
9-36
-
9 ra
rely
or n
ever
(1) –
ve
rsat
ility
Que
stio
nnai
re
Lank
veld
, Eijs
bout
s, m
y ap
proa
ch if
alm
ost a
lway
s (4
)
(C
OFL
EX)
Van
Helm
ond,
Gee
nen,
ne
cess
ary.
&
Van
den
End
e, 2
012
[5
1]Se
lf-ef
ficac
y T
0, T
1, T
4 Ar
thrit
is S
elf-E
ffica
cy
Lorig
, et a
l., 1
989
[30]
I a
m c
erta
in th
at I
can
1-5
.83
5 st
rong
ly d
isag
ree
(1) -
pain
Scal
e
keep
art
hriti
s pa
in fr
om
st
rong
ly a
gree
(5)
inte
rferin
g w
ith m
y sl
eep.
Se
lf-ef
ficac
y T
0, T
1, T
4 Ar
thrit
is S
elf-E
ffica
cy
Lorig
, et a
l., 1
989
I am
cer
tain
that
I ca
n 1-
5 .8
2 6
stro
ngly
dis
agre
e (1
) -fo
r oth
er
Sc
ale
co
ntro
l my
fatig
ue.
st
rong
ly a
gree
(5)
sym
ptom
s
PROEFSCHRIFT_ROOS_ARENDS_def.indd 121 30-08-16 10:05
122
CHAPTER 5
Cont
ent
Mea
sure
men
t Sc
ale
Refe
renc
e Ex
ampl
e ite
m
Scal
e Cr
onba
ch’s
Item
s Re
spon
se o
ptio
ns
po
int
ra
nge
alph
a a
Dem
o-
T0
Sex,
age
, mar
ital s
tatu
s,
- -
- N.
A.
6 va
rious
resp
onse
form
atgr
aphi
cs
ed
ucat
ion
and
curr
ent
stat
e of
em
ploy
men
tDi
seas
e ch
a- T
0 Di
agno
sis
and
dise
ase
-
- -
N.A.
2
Vario
us re
spon
se fo
rmat
ract
eris
tics
du
ratio
nCo
-mor
bidi
- T0
Ch
eckl
ist w
ith 1
5
Base
d on
the
Inte
rnat
iona
l -
0-16
N.
A.
16
-tie
s
cate
gorie
s of
con
ditio
ns b
Clas
sific
atio
n of
Dis
ease
s
(ICD-
10: W
HO, 1
992)
M
edic
atio
n T0
, T1,
T2,
T3,
-
- Se
e ar
ticle
’s te
xt
N.A.
N.
A.
2 Se
e te
xtus
e T4
U
tiliti
es
T0, T
1, T
4 EQ
-5D
Broo
ks, 1
996
[73]
; Lam
ers,
I ha
ve n
o pr
oble
ms
in
1-3
- 15
N
o pr
oble
m (1
) -
M
cDon
nell,
Sta
lmei
er,
wal
king
abo
ut.
ex
trem
e pr
oble
ms
(3)
Kr
abbe
, & B
ussc
hbac
h,
2006
[74]
Dire
ct m
edi-
T0, T
1, T
2, T
3,
- -
See
artic
le’s
text
N.
A.
N.A.
3
Ope
n en
ded
cal c
osts
T4
Indi
rect
non
- T0
, T1,
T2,
T3,
-
- Se
e ar
ticle
’s te
xt
N.A.
N.
A.
7 O
pen
ende
dm
edic
al c
osts
T4Pr
ice e
stim
ate T
1 -
- Se
e ar
ticle
’s te
xt
N.A.
N.
A.
1 In
eur
os fo
r de
com
plet
e co
urse
a Are
nds
et a
l., 2
013;
b Res
pond
ents
cou
ld a
lso
indi
cate
‘oth
er c
ondi
tions
not
list
ed’.
Tabl
e 3
cont
’d
PROEFSCHRIFT_ROOS_ARENDS_def.indd 122 30-08-16 10:05
123
RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION
Primary outcome measure
Depressive symptoms
The depression subscale of the Hospital Anxiety and Depression Scale (HADS) [60] is used.
The HADS was chosen because the scale is designed to measure the presence and severity of
depressive and anxiety symptoms whilst limiting any confounding effects of physical illness
symptoms by excluding somatic items. The HADS is used both in earlier studies with arthritis
patients [e.g., 54] and in studies on goal management [57]), which facilitates comparison of
study results. The HADS is also used in other interventions intended to influence depressive
symptoms [75]. Concurrent validity of the HADS is very satisfactory and the measure has
sufficient internal consistencies [60,59].
Secondary outcome measures
Anxiety
The anxiety subscale of the HADS [60] is used to measure anxiety symptoms.
Positive affect
The positive subscale of the Positive and Negative Affect Schedule (PANAS) [66] is used for
the measurement of positive affect.
Purpose in life
To assess the extent wherein participants experience a meaningful life, the Purpose In Life
Scale (PIL) [67,68] is used. This scale is comprised of 5 items about a person’s experience with
respect to the presence or absence of life goals. One question about everyday purpose in
life is added to the PIL: ‘Doing the things I do everyday is a source of deep pleasure and
satisfaction’.
Participation
The Impact on Participation and Autonomy (IPA) [69] questionnaire assesses the participants’
satisfaction with social participation. We use the subscales family role, autonomy outdoors,
social relations, and work and education to quantify impediments in participation and
autonomy.
Pain
The severity of pain in the past week is measured by a 1-item visual analogue scale.
Fatigue
The severity of fatigue in the past week is measured by a 1-item visual analogue scale.
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Physical functioning
The physical functioning subscale of the RAND-36 [70,76,71] is selected to measure physical
functioning.
Measures of mediation variables
To measure the use of goal management strategies, we use three generic disease
questionnaires, and one disease-specific instrument especially designed to measure goal
management in arthritis patients.
Maintenance of goals and adjustment of goals
The tendencies to use the strategies maintaining goals and adjusting goals are measured
by the Tenacious Goal Pursuit and Flexible Goal Adjustment scales (FLEXTEN: TGP & FGA
subscales) [72].
Goal disengagement and goal reengagement
The tendencies to use the strategies goal disengagement and goal reengagement are
measured with the Goal Adjustment Scale (GAS) [42].
Goal management strategy vignettes
We have developed vignettes for explorative purposes in this program called Goal
Management Strategy Vignettes (GMSV). Three vignettes are used to measure the extent in
which a person is flexible in thinking about goal management. The vignettes are short stories
of a person with arthritis who struggles with threatened personal goals in the domains of
social relationships, leisure time and autonomy. To respond, the participant writes down
possible ways in which the vignette character can react to the situation described. To analyze
the answers, deductive coding for similarity with pre-defined strategies is used. To measure
flexibility in thinking of goal management, the increase in the number of strategies that are
mentioned per time point is used.
Coping versatility
The versatility subscale of the Coping Flexibility Questionnaire (COFLEX) [51] is used to
measure coping versatility.
Selfefficacy
To measure self-efficacy for coping with disease symptoms, the Arthritis Self-efficacy Scale
(ASES) [30,77] pain and other symptoms subscales are used.
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Demographics and disease related measures
Demographics
Baseline measurement includes demographic variables, including sex, age, marital status,
education and current state of employment.
Disease characteristics
Diagnosis, disease duration (in years since diagnosis) and number of co-morbidities are
asked. The diagnosis is checked by a rheumatologist.
Medication use and change of medication
Use of medication is asked with an open-ended question: ‘What medications do you currently
use, as prescribed by your rheumatologist?’ Furthermore, changes in medication are asked
with the question: ‘Has anything changed in your medication in the past two months?’
Response options are: ‘No’ and ‘Yes, I started a new drug. / I stopped a drug. / The dose of a
drug is increased. / The dose of a drug has been reduced.’
Measures for the economic evaluation
Utilities
The EuroQol-5D (EQ-5D) [73,74] is used to assess utilities. The EQ-5D descriptive system
consists of five dimensions: mobility, self-care, usual activities, pain/discomfort and anxiety/
depression [74]. Furthermore, the ‘thermometer’ is asked; patients rate their health status
on a scale from 0 (worst possible health) to 100 (best possible health).
Direct medical costs
Medical costs are collected on a bimonthly basis. Patients are asked the number of telephone
consultations they have with their GP, as well as their number of visits to the GP, medical
specialist, other paramedical and alternative therapists, and hospital days.
Indirect nonmedical costs
Indirect non-medical costs are collected at the same frequency as the direct medical costs.
Patients are asked about their absenteeism from work, domestic care, domestic help, and
informal care.
Price estimate
Participants in the program group are asked at the post-intervention T1 measurement how
many euros they would spend for participation in this program if no health insurance would
pay the costs.
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Measures for the process evaluation
A brief questionnaire about the general evaluation of the session, the content, material,
exercises and the presentation of the trainer is completed by the participants after each
session. The trainers also fill in a short evaluation form at the end of each session and a
comprehensive evaluation sheet at the end of each program.
Measures for the competence of group trainers
During the first two courses, the trainers receive one-hour supervision after every session,
and afterwards supervision occurs less frequently, but on a regular basis. Random sessions
are recorded with a voice recorder and checked for correct delivery of the protocol.
Stakeholders’ analysis measures
At the end of a program, two participants per group are randomly chosen and interviewed
to evaluate the program with the use of a structured interview scheme. At the end of the
study, all the trainers and one person of the management team of the participating clinics
are asked during a structured interview to evaluate the program and give suggestions for
implementation.
Sample size
The sample size calculation is based on depressive symptoms as a primary objective. In order
to demonstrate a medium-sized effect (Cohen’s d = 0.40), 100 participants in each condition
are required, based on a statistical power (1-beta) of 0.80, a two-sided test and an alpha of
0.05 (power calculation with G-power).
Analysis
Preliminary analysis
A flow chart of participation during the total study will be drawn. Reasons for dropout will
be summarized. Percentages of missing values and dropout will be displayed. Background
variables and summarized scores on questionnaires will be given. One-way ANOVA’s and
χ2-tests will be performed to check for differences between the two conditions at baseline
for any of the demographic variables and/or outcome measures. Intention to treat-analyzes
will be conducted with use of baseline (T0) or post-intervention (T1) data depending on the
last present measurement data.
Effectiveness analysis on primary and secondary outcome measures
To examine differences between the two conditions on all outcome measures, analysis of
variance for repeated measures (group x time) will be used. If demographic or outcome
measures differ significantly between the groups at baseline, these measures will be
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RATIONALE AND DESIGN OF A GOAL MANAGEMENT INTERVENTION
incorporated into the analysis as covariate(s). Planned polynomial contrasts are used to
analyze differences in effect of the program post-intervention and after the follow-up in
the experimental group. Effect sizes of the experimental group in primary and secondary
outcomes at post-intervention and follow-up will be calculated with Cohen’s D using the
means and pooled standard deviations of the measurements of the conditions. Effect sizes
are considered according to Cohen [78] as follows: small d=0.2, medium d=0.5, and large
d=0.8. To see if subgroups (e.g., high/low age, gender, disease severity) respond better to the
program, subgroup analyzes will be calculated using independent t-tests or Mann-Whitney
tests.
Analysis of mediation
Multiple mediation analysis will be performed to analyze whether the tendencies to use
goal management strategies and coping versatility mediate the effects in the intervention.
Primary and secondary outcomes used are the measures of depression, anxiety, purpose in
life, positive affect and participation. Baseline and post-intervention measurements of both
intervention and waiting list group will be used. A change score for tendencies to use goal
management strategies and coping versatility will be computed with scores from baseline and
post-intervention measurement. Multiple mediation analysis with bootstrapping procedures
(n = 5000 bootstrap re-samples) will be used to assess the indirect effect of the mediation
pattern, as recommended by Preacher and Hayes [79]. An indirect effect will be considered
significant in the case when zero is not contained in the 95% bias-corrected confidence
interval. Self-efficacy pain and self-efficacy for other symptoms will be incorporated in the
multiple mediation analyzes as putative mediators. To analyze whether the GSMV mediate
the effects of the intervention on the primary and secondary outcome measures, dummy
variables will be used to indicate whether or not a strategy is named.
Economic evaluation
Results will be expressed as quality-adjusted life years (QALYs). The time-integrated summary
score, which is the area under the curve (AUC) of the utilities, will be calculated to define
the quality of life per time period (0-2 months and 0-8 months). Between-group differences
in QALYs will be analyzed per period using t-test for unpaired observations. The costs will
be presented as an arithmetic mean (+- SD) per patient per group. The between-group
differences in resource use will be analyzed per period using the Mann-Whitney U test.
For every patient and study period, the mean incremental costs will be calculated, and,
using double-sided bootstrapping, 95% confidence intervals (95%CI) will be estimated. The
incremental cost utility ratio (ICER) will be calculated by dividing the extra costs for the
goal management intervention by the extra QALYs derived from the goal management
intervention. The ICER will be expressed as costs per QALY gained. The 95% confidence
intervals of the ratios will be estimated with bootstrapping. Cost evaluations will be
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conducted from the societal perspective and with a time-horizon of less than one year. Due
to this short time-horizon, costs and effects will not be discounted.
Discussion
The purpose of the presented study protocol is to evaluate the effectiveness of the “Right
On Target” program, a newly developed goal management intervention. We predict that
the experimental condition will show positive effects compared with usual care in reducing
depressive and anxiety symptoms and in improving positive affect, purpose in life and social
participation, and will be cost effective. Both the program itself and its evaluation are likely
to add to the existing body of knowledge in several ways, as described below.
Strengths and limitations of the goal management intervention
To the best of our knowledge “Right On Target” is the first program that focuses on the four
goal management strategies of goal maintenance, goal adjustment, goal disengagement
and goal reengagement to support improvement of adaptation to a chronic disease. The
possibility to tailor the program to the personal needs of participants is expected to increase
its effectiveness and participants’ commitment to the program.
We provided a detailed description of the ingredients of the intervention, in accordance
with the argument of Michie et al. [61], in order to communicate applied techniques that
support the development of effective interventions and to improve knowledge regarding
effective behavior change techniques. We hope to be able to identify the active ingredients
in our intervention by clearly stating the underlying theory and assumed mechanisms of
behavioral change.
Furthermore, the present study incorporates a holistic focus on adaptation, as the
outcomes assessed are both the absence of psychological distress and the presence of well-
being. Hence, this research focuses not only on the difficulties that people may experience
due to a chronic disease, but also on personal sources of resilience.
As stated earlier in this paper, the goal management program focuses on dealing with
threatened personal goals, rather than a pre-defined focus on disease-related goals.
This program may ask for different competencies than health professionals are used to
deploying in their daily practice. The specialized nurses in rheumatology care who provide
the program have undergone extensive training. During the study period, the nurses receive
regular guidance and supervision. Nevertheless, it is possible that nurses find it difficult
to “sit on their hands” and not provide immediate solutions. This program might be less
suitable without the extensive training and guidance of the nurses.
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Strengths and limitations of the randomized controlled trial
Our study will hopefully answer questions regarding the effectiveness of the goal manage-
ment intervention for patients with a rheumatic disease. We try to understand the pathways
that are responsible for successful adaptation in persons dealing with a rheumatic disease
and investigate who benefits most. In addition, we have included an economic evaluation.
However, these additional analyzes cannot be conducted in absence of an effect of the goal
management intervention compared to the waiting list group.
As the “Right On Target” program is a newly developed intervention, we execute a stakeholders’
analysis. Experiences of participants, trainers and the management of the participating clinics
provides insight into the feasibility regarding the intervention. The information from the
stakeholders’ analysis supports future implementation of the intervention.
Conclusion
To test the effectiveness of the “Right On Target” program to increase adaptation to
polyarthritis, a randomized controlled trial is needed and a design for this study is presented.
Results from this trial will test the effectiveness of the “Right On Target” program in improving
the adaptation of patients to polyarthritis in terms of the absence of psychological distress
and the presence of well-being. The protocol for the randomized controlled trial reflects a
comprehensive view both on adaptation and on goal management. The presented study
will add to the existing body of knowledge of health promotion interventions.
Trial registration
Nederlands Trial Register = NTR3606, registration date 11-09-2012.
Acknowledgements
We thank our two patient partners, Lynn Packwood and Klaas Sikkel, who added the patient
perspective to this project. We thank Riëtte Leemreize-Mol for her valuable contribution to
the intervention from her nursing perspective. The project is financially supported by the
Stichting Reumaonderzoek Twente, a foundation for research in rheumatology.
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6
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6A goal management
intervention for patients
with polyarthritis and
mild depressive symptoms:
A quasi-experimental
study
R.Y. Arends
C. Bode
E. Taal
M.A.F.J. van de Laar
Submitted for publication
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Abstract
Objectives
Goal was to establish whether an intervention that aims to increase goal management
competencies is effective in decreasing symptoms of depression and increasing wellbeing in
patients with polyarthritis with elevated levels of depressive symptoms.
Methods
Eighty-five persons with polyarthritis and mild depressive symptoms participated in the goal
management intervention consisting of six group-based meetings. A quasi-experimental
design with baseline measurement, follow-up at 6 months and a reference group of
151 patients from an observational study was applied. Primary outcome was depression;
secondary outcomes were anxiety, purpose in life, positive affect, satisfaction with
participation, goal management strategies, and arthritis self-efficacy. A linear mixed model
procedure was applied to evaluate changes in outcomes.
Results
No improvement was found for depressive symptoms and no changes were found for the
secondary outcomes, except for positive affect that improved in the intervention group. This
increase was mediated by an increase in goal adjustment. Furthermore, goal maintenance
decreased and self-efficacy for other symptoms increased in the intervention group.
Conclusions
This study indicates that interventions designed to aid patients with arthritis with goal
management skills are potentially helpful for increasing wellbeing, although further studies
are needed.
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Introduction
Chronic diseases, such as polyarthritis, present a number of challenges to patients in several
life domains [1]. People with a chronic disease have to manage their disease in combination
with possibly conflicting roles and tasks, and this daily management takes place mostly
outside the healthcare system [2,1]. Interventions that help participants acquire skills and
techniques are seen as essential to supporting patients to achieve self-management [3].
Adaptation to chronic disease is an ongoing process of finding equilibrium in a situation
that can constantly change [4]. The psychological component of this process of adaptation
to a chronic disease has been described as healthy rebalancing to new circumstances [5].
In the present study, the effect of a health promotion intervention that focused on coping
with threatened activities and life goals due to arthritis was evaluated. The intervention,
called Right on Target, aimed at helping people with polyarthritis and elevated levels of
depressive symptoms to increase their goal management competencies and thereby increase
their adaptation. This intervention was designed based on theories of goal management [6].
Having personal goals and striving towards them gives individuals structure and meaning
to their lives and is essential for wellbeing, identity, purpose in life and satisfaction [7-9].
However, pursuing personal goals may also produce negative psychological effects when
they become unattainable or no progress is made [10,11]. Goal management strategies refer
to the various strategies that can be applied to minimize discrepancies between the actual
situation and the goals of an individual.
The intervention derives from the comprehensive Integrated Model of Goal Management,
which combines four strategies from two established models [12]: (1) the maintenance of
goals and adjustment of goals [13,9] and (2) the disengagement of goals and reengagement in
new goals [14]. The first strategy, goal maintenance, involves attempts to alter unsatisfactory
life circumstances and situational constraints in accordance with personal preferences. Goal
adjustment covers the adjustment of personal goals, which involves the revision of self-
evaluative standards and personal goals in accordance with perceived benefits and losses.
Thirdly, goal disengagement is theorized to be a facet of the broader strategy of goal
adjustment as it conceptualizes the ultimate form of adjusting goals [12]. Goal disengagement
occurs when a goal is perceived as no longer attainable, and the individual withdraws any
effort and commitment to that goal. Finally, the fourth strategy is goal reengagement, which
includes identifying, committing to and starting to pursue new goals. In an earlier study,
patients referred to and saw these four strategies as behavioural options [15].
Earlier studies linked the goal management strategies to levels of distress and wellbeing
in patients with polyarthritis [12,16]. The inability to use several strategies – low coping
flexibility [17] – was linked to lower levels of adaptation, while a broad repertoire of goal
management strategies was related to higher levels of adaptation. Being capable of using
different approaches in different situations can be especially beneficial for people with
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inflammatory arthritis, as they must deal with the disease’s unpredictable inflammatory and
fluctuating course [18]. To facilitate participants’ coping flexibility general applicable goal
management competencies that can be used in daily life for various situations are learned
during the intervention. Right on Target assumes a person-focused perspective in which all
aspects of a patient’s life are included [6].
The present study investigated whether the intervention was effective in improving
depressed mood (primary outcome) and anxiety, purpose in life, positive affect and satisfaction
with social participation (secondary outcomes) in people with polyarthritis. The outcomes
were chosen in order to formulate a multi-dimensional display of successful adaptation that
includes the absence of psychological distress, and the presence of wellbeing [4,12,5,16].
Symptoms of depression were chosen as a primary outcome since it is the most studied
outcome in relationship to goal management in chronic diseases [19-22] and particularly
well-researched and documented among patients with arthritis [23-26]. Depression and
anxiety are components of psychological distress that affect 20 to 40 % of the patients
[27,28,24,29-32]. Several positive concepts can prevent psychopathology and promote a
satisfying life with polyarthritis. Firstly, the sense of a purpose in life is largely derived from
having valued activities in which to engage [8]. Purpose in life was found related to quality
of life in arthritis patients [33] and in another study, goal maintenance, goal adjustment
and goal reengagement related to purpose in life [12]. Secondly, the experience of positive
affect is considered an indicator of adaptation and psychological health. [4]. Positive affect
can reduce the negative influence of pain on wellbeing and prevent clinical depression [34-
36,4]. In addition, the participation in society of persons with arthritis is often negatively
affected by symptoms and limitations caused by the disease [37,38]. The assessment of social
roles is largely subjective as they are carried out from a sense of personal value or necessity
[39]. The subjective nature of participation was considered of particular interest since Right
on Target focused on the management of personal goals.
Perceived self-efficacy – the confidence that one can accomplish a particular goal – is
considered a key mechanism through which existing self-management programmes increase
health behaviour and health status [40,41]. The goal management intervention contains
some of the behaviour change techniques that are considered to enhance the self-efficacy
process [42,41]. Therefore, self-efficacy for coping with symptoms of arthritis was included
as a putative mediator.
Methods
Trial design
For a full description of this study’s design, as initially planned, please refer to Arends et al. [6].
Originally, the study was planned as a randomized controlled trial. However, changes were
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made to the design, due to the initial small number of applicants. All eligible participants were
assigned to the intervention group after enrolment, resulting in a quasi-experimental study
design. The reference group consisted of selected polyarthritis patients who participated in
a longitudinal observational study that ran from October 2010 to June 2012 [12,16]. Ethical
approval for this study was granted by the Medical Ethics Committee Twente.
Procedure of recruitment and data collection
Intervention group. Participants were recruited by: inviting participants from four arthritis
clinics in The Netherlands, contacting participants of previous studies, listing news items
in local newspapers, and placing announcements in local patient organization bulletins.
Recruitment ran from October 2012 to October 2013. Applicants received information by
post along with an application form, an informed consent, and a screening questionnaire.
Inclusion criteria were: age ≥ 18 years, a diagnosis of polyarthritis, and a score of ≥ 4 on the
depression subscale of the Hospital Anxiety and Depression scale (HADS-D). Exclusion criteria
were severe psychological distress (indicated by a score of ≥ 22 on the HADS), insufficient
Dutch language skills, and/or enrolment in psychotherapeutic treatment at the time of entry
into the study.
Reference group. Participants for the longitudinal observational study were randomly
selected from the electronic diagnosis registration system of a rheumatology clinic and
subsequently received an invitation for the questionnaire study. The same criteria used
to select the current intervention group were applied to the 331 participants in the
observational study, ultimately leading to a selection of 160 eligible patients for the reference
group. Subsequently, data of nine persons were removed due to their participation in the
intervention, resulting in 151 persons in the reference group.
Data collection procedure. Data were collected through questionnaires sent home at
baseline, at post-intervention (2 months, only intervention group), and at follow-up (6
months).
Intervention
Content. The content of the psycho-educational programme Right on Target [6] was as
follows. First, awareness of the impact of arthritis on participants’ life was increased, and
goals at risk were analysed. Second, participants’ usual ways of dealing with such difficulties
(e.g. valued activities threatened by arthritis) were examined, and goal management
strategies were discussed and compared. Subsequently, participants selected a threatened
activity to focus on in their personal trajectory. In order to experience and practice multiple
goal management strategies, participants were stimulated to try out various behavioural
options. During the group meetings, the experiences in their personal trajectory were
evaluated and discussed, and participants were encouraged to help and stimulate each
other’s new behaviour.
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The programme consisted of six group-based meetings with 6-8 participants, led by a
nurse specialized in arthritis care. Trainers followed a one-day training course and received
supervision and monitoring by a psychologist during their execution of the intervention. The
first four meetings were weekly, the fifth and sixth meetings were bi-weekly. The duration
of every meeting was 2 hours. In total, thirteen groups were held at four rheumatology
clinics.
Enrolment, treatment adherence and retention. In total, 206 patients expressed an interest
in participating in the intervention (Figure 1). After screening, eligible applicants were
contacted by a trainer in their region to plan the patient’s participation in the intervention.
Participants that attended at least one intervention meeting were included in the analysis.
In the intervention group, 83.5% of the participants returned the questionnaires at all
measurement times and 62.9% attended all meetings. Participants that missed one or two
group meetings received additional information from their trainer, allowing participants to
prepare for their next meeting. Participants that withdrew were asked to state their reasons.
Participants in the intervention group were significantly more likely woman, younger,
diagnosed with RA, reported higher levels of fatigue and had shorter disease duration
compared to participants in the reference group, see also Table 1.
Figure 1 Participant flow within the intervention group
Assessed for eligibility (n = 206)
Allocated to intervention (n = 111)
Excluded (n = 95) Not meeting inclusion criteria (n = 95) • Depression score < 4 (n = 67) • Severe distress HADS ≥ 22 (n = 15) • Psychotherapeutic treatment (n = 9) • Other diagnosis (n = 4)
Received allocated intervention (n = 70) • Attended all meetings (n = 44) • Missed 1 meeting (n = 21) • Missed 2 meetings (n = 5)
Discontinued intervention (n = 15) • Content does not fit expectations (n = 5) • Already able to cope with arthrits (n = 3) • Personal circumstances (n = 4) • Due to arthritis and/or illness (n = 3)
Measures available (n = 85) • Completed baseline assessment (n = 83) • Completed post-intervention assessment (n
= 77) • Completed follow-up assessment (n = 75)
Did not start intervention (n = 26) • No longer interested (n = 7) • Unattainable (n = 3) • Not available at scheduled dates (n = 16)
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Table 1 Baseline demographics and disease characteristics of participants in the intervention and the reference
group.
Demographic characteristics Intervention n = 85 References n = 151 Differences on baseline a
N (%) Sex, n (%) χ2 (1) = 5.08, p < .05
Male 24 (28.2) 65 (43) Female 61(71.8) 86 (57) Age (years), mean (SD), range 57.34 (11.63), 23-82 64.99 (12.39), 22-91 t(234) = -4.65, p < .001
Marital status, n (%) χ2 (1) = .69, ns. Not living with partner 19 (22.4) 42 (27.8) Living with partner 63 (74.1) 107 (70.9) Missing 3 (3.5) 2 (1.5) Educational level, n (%)b χ2 (2) = 5.37, ns. No/Lower 27(31.8) 72(47.7) Secondary 40 (47.1) 54 (35.8) Higher 15 (16.6) 22 (14.6) Missing 3 (3.5) 3 (2.0) Work status, n (%) χ2 (1) = 2.08, ns. No paid job 55 (64.7) 115 (76.2) Full-time and part-time employment 26 (30.6) 35 (23.2) Missing 4 (4.7) 1 (0.7) Anti-depressive medication use, yes (%) 19 (21.1) 35 (23.2) χ2 (1) = .56, ns.Disease characteristics Diagnosis, n (%) χ2 (5) = 12.52, p < .05 Rheumatoid arthritis 65 (76.5) 84 (55.6) Gout and other crystal diseases 2 (2.4) 13 (8.6) Polymyalgia and Temporal Arteriitis 6 (7.1) 21 (13.9) Spondylarthropathy 6 (7.1) 11 (7.3) SLE and other systemic diseases 1 (1.2) 8 (5.3) Other/non-classifiable 5(5.9) 14(9.3) Disease duration (years), mean (SD), range 7.81 (8.30), 0-41 16.21 (14.03), 0-71 t(232.53) = -5.6, p < .001
Comorbidities c, n (SD) 1.40 (1.27) 1.64 (1.56) t(234) = -1.22, ns
Fatigue d, mean (SD) 60.42 (22.07) 47.97 (24.37) t(228) = 3.85, p < .001
Pain e, mean (SD) 45.22 (22.78) 4.49 (2.36)
Note: SD = standard deviation. a Independent sample t test and Pearson’s Chi-square were used. b Low: No education, primary school or lower vocational education; Middle: high school and middle vocational education; High: high vocational education and university. c Checklist with 15 conditions. d Fatigue in the past week was asked using a visual analogue scale: 0 (no fatigue) – 100 (completely exhausted). e Pain was measured using a visual analogue scale in the intervention group (range 0 – 100) and with a numerical rating scale in the reference group (0 – 10). Therefore, no test for differences at baseline could be performed.
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Measures
The depression subscale of the Hospital Anxiety and Depression Scale (HADS-D) measures
presence and severity of depressive symptoms [43]. Higher scores indicate more depressive
symptoms (range 0-21). Internal consistency at baseline was in the intervention group α = .66
and in the reference group α = .31. (Note that internal consistency for depression was α = .80
in the whole sample of the observational study, which might indicate that the low internal
consistency in the subgroup is related to the applied inclusion criterion of HADS-D ≥ 4).
Anxiety symptoms were measured with the HADS anxiety subscale, with higher scores
indicating more anxiety symptoms (range 0-21, α = .75). The extent wherein participants
experienced a meaningful life (i.e. purpose in life) was measured with the Purpose In Life
Scale (PIL) [44,45], with one added question [12]: “Doing the things I do every day is a source
of deep pleasure and satisfaction”. Higher scores indicate more purpose in life (range 6-30,
α = .77). The positive subscale of the Positive and Negative Affect Schedule, which consists of
ten positive mood descriptors, was used for the measurement of positive affect [46]. Higher
scores indicate more positive affect in the past week (range 10-50, α = .89). Participants’
satisfaction with social participation was measured with the Impact on Participation and
Autonomy (IPA) [47]. Higher scores indicate more satisfaction (range 0-4, α = .89). The
following domains were used: family, autonomy outdoors, and social relations.
The Tenacious Goal Pursuit and Flexible Goal Adjustment scales [48] were used to measure
assimilative tenacity (maintenance of goals) and accommodative flexibility (adjustment
of goals), respectively. High scores on these scales indicate high assimilative tenacity and
high accommodative flexibility, respectively (range 15-75, goal maintenance α = .73, goal
adjustment α = .78). Goal disengagement and goal reengagement were measured with the
Goal Adjustment Scale [14]. This scale measures how respondents usually react if they have
to stop pursuing an important goal. Higher scores indicate a tendency to disengage from
unattainable goals (goal disengagement, range 4-20, α = .56) and a tendency to reengage
with new goals (goal reengagement, range 6-30, α = .86). Two subscales of the Arthritis Self-
efficacy Scale were used (range 1-5) to measure selfefficacy for pain (α = .82) and selfefficacy
for other arthritis symptoms (α = .79) [49,50]. Higher scores indicate greater perceived ability
to control aspects of arthritis. At baseline, demographic variables and diagnosis, disease
duration, pain, fatigue, and amount of comorbidities were assessed.
Statistical methods
In order to demonstrate a medium sized effect d = 0.40, 100 participants in each condition
were required, based on a statistical power of 80% and a significance level of 0.05. All
statistical analyses were performed using SPSS version 21 for Windows (IBM Statistics).
Independent samples T-tests and χ2 tests were used to examine significant differences at
baseline between the conditions.
Differences in scores between the intervention group and the reference group on
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outcomes and possible mediators were studied using the linear mixed model procedure
(LMM). Outcomes at baseline and 6 months follow-up were used as repeated measures, with
group (2 levels: intervention/reference group), time (2 levels) and their first order interactions
as fixed factors. The estimation method used was Restricted Maximum Likelihood (REML)
and the covariance structure unstructured. Sex, age, diagnosis (dummy coded) and disease
duration were sequentially added to the model in order to control for their influence, and
then removed when the model did not become more explanatory. For significant differences
in changes in outcomes over time 95% confidence intervals were calculated. Taking into
account the differing sample sizes and differences on baseline values, the effect size dcorr is
reported for significant differing outcomes (small d = 0.2, medium d = 0.5, and large d = 0.8),
calculated with an online calculator [51].
Separate analyses with three time moments were carried out using only intervention
group data. The course of primary and secondary outcomes using time as fixed factor (3
levels: baseline/ post-intervention/ follow-up) was analysed using the linear mixed model
procedure, with the unstructured covariance structure, and controlling for relevant patient
characteristics as described above.
To examine whether improvement in possible mediators would mediate the effect of the
intervention on outcome variables, separate mediational analyses with linear regression
and bias-corrected bootstrapping procedures (n = 5000 bootstrap resamples) were used
[52]. An indirect effect was considered significant when zero was not contained in the 95%
confidence interval.
Results
With regard to the primary outcome, no significant improvement was present on the
depression subscale of the HADS in the intervention group compared to the reference group
(group* time [95% CI] -.20 [-.99, .59], p = .624), see Table 2. For the secondary outcomes
of anxiety, purpose in life and participation, no significant improvement was present in
the intervention group compared to the reference group. With regard to positive affect,
significant improvement was present in favour of the intervention group when compared
to the reference group (2.01 [.43, 3.59], p = .013, dcorr = .25). Goal maintenance decreased
significantly in the intervention group compared to the reference group (-1.89 [-3.48, -.30],
p = .020, dcorr = -.32). Significant improvement was present in goal adjustment in favour of
the intervention group compared to the reference group (2.34 [.93, 3.74], p = .001, dcorr =
.31). For goal disengagement, goal reengagement and self-efficacy for pain, no treatment
effect was found. Self-efficacy for other symptoms significantly increased in the intervention
group when compared to the reference group (.22 [.06, .38], p = .008, dcorr = .35).
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Table 2 Means and standard deviations on outcome baseline measurements and follow-up measurements,
estimated effects and effect sizes of the intervention group compared to the reference group.
Intervention group Reference group Group * time p value dcorr
Mean (SD) Mean (SD) (95% CI) Depression -.20 (-.99 to .59) .624 Baseline 6.28 (3.10) 6.69 (2.32) Follow-up 5.76 (3.60) 6.22 (3.18) Anxiety -.72 (-1.56 to .11) .088 Baseline 6.59 (3.51) 5.96 (2.89) Follow-up 5.92 (3.36) 6.00 (3.09) Purpose in life .47 (-.42 to 1.35) .300 Baseline 20.40 (3.81) 20.71 (3.49) Follow-up 20.73 (3.79) 20.66 (3.18) Positive affect 2.01 (.43 to 3.59) .013 .251 Baseline 31.03 (6.83) 31.77 (6.47) Follow-up 33.35 (6.64) 32.46 (6.27) Participation -.03 (-.16 to .11) .674 Baseline 2.43 (0.49) 2.41 (0.55) Follow-up 2.37 (0.61) 2.44 (0.61) Goal maintenance -1.89 (-3.48 to -.30) .020 -.322 Baseline 46.38 (6.36) 45.00 (5.89) Follow-up 44.21 (6.18) 44.77 (5.82) Goal adjustment 2.34 (.93 to 3.74) .001 .311 Baseline 47.77 (8.05) 50.30 (5.40) Follow-up 49.53 (5.62) 49.96 (5.23) Goal disengagement .02 (-.68 to .73) .947 Baseline 11.55 (2.51) 11.61 (2.26) Follow-up 11.55 (2.28) 11.49 (2.24) Goal reengagement .30 (-.70 to 1.30) .556 Baseline 20.93 (3.44) 20.97 (3.40) Follow-up 21.43 (3.39) 21.18 (3.48) Self-efficacy pain .12 (-.07 to .29) .238 Baseline 2.69 (0.82) 3.06 (0.75) Follow-up 2.92 (0.80) 3.19 (0.74) Self-efficacy other .22 (.06 to .38) .008 .345 Baseline 2.95 (0.71) 3.36 (0.58) Follow-up 3.18 (0.66) 3.38 (0.65)
Notes: Number of respondents with complete data per sub questionnaire for intervention group on baseline = 78-83, and follow-up = 72-75; and for the reference group on baseline = 146-151, and follow-up =127-130.
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The analysis with three measurement moments with the intervention group showed that
positive affect significantly increased over time (time [95% CI] 1.26 [.54, 1.97], p = .001,
means: t0 = 31.03, t1 = 33.64, t2 = 33.35), which supports the previous analysis that included
the reference group. No significant changes in the course over time of depression were
found in the intervention group (-.23 [-.63, .17], p = .261, means: t0 = 6.28, t1 = 5.93, t2 =
5.76). Similarly, no significant changes for anxiety, purpose in life, or participation over time
were found (data not shown).
Mediation analyses were executed with positive affect on follow-up as an outcome,
controlling for baseline positive affect and the mediator variable at baseline. Levels of goal
maintenance, goal adjustment and self-efficacy for symptoms other than pain significantly
changed in the hypothesized direction between baseline and follow-up and, therefore, were
assessed as possible mediators of the treatment effect on positive affect. Change in goal
maintenance and self-efficacy for other symptoms did not mediate the relation between
group and positive affect (data not shown). The relationship between group and positive
affect was significantly mediated by goal adjustment (b = 0.49 [.05, 1.18], p < .05). Controlled
for positive affect and goal adjustment at baseline, the intervention group showed a stronger
increase in positive affect at follow-up than did the reference group (Step 1 in Table 3). Step
2 in Table 3 shows that the improvement in goal adjustment significantly predicted positive
affect at follow-up (see also Figure 2). The group effect became non-significant.
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Table 3 Mediation analysis of improvement of goal adjustment on positive affect at follow-up
Positive affect follow-up (T3) Step 1 Step 2n = 198 (B, SE, 95% CI) (B, SE, 95% CI)Group a 1.54* .75 .06, 3.02 1.05 .72 -38, 2.47Baseline Positive affect (T0) .64*** .06 .53, .76 .61*** .06 .50, .72Baseline Goal adjustment (T0) -.07 .06 -.19, 05 .11 .07 -.02, .25Improvement in Goal adjustment .39*** .08 .22, .55(T3-T0)Explained variance (adjusted R2) .40 .46 Indirect effect, bootstrap SE, .49* .28 .05, 1.18 bootstrap 95% CI
Note: * p < .05; ** p < .01; *** p <.001. a intervention group versus reference group.
* p < .05; ** p < .01; *** p < .001
Figure 2 Standardized regression coefficients for the relationship between group and positive affect as mediated
by goal adjustment. The indirect effect via goal adjustment is between parentheses.
Discussion and Conclusion
Objective of this study was to examine whether an intervention aimed at increasing
goal management competencies decreased depressive symptoms and improved levels of
adaptation in people with polyarthritis and elevated levels of depressive symptoms. Contrary
to our hypothesis, there was no decrease in levels of depressive symptoms in Right on Target
participants when compared to the reference group. Levels of anxiety symptoms, also, did
not decrease for participants that received the intervention, nor did their purpose in life
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or satisfaction with social participation increase significantly as compared to the reference
group at follow-up. Participants, nevertheless, did experience an increase in positive affect
during and after the goal management intervention, and this increase in positive affect
continued at follow-up. An increase in goal adjustment significantly mediated the increase
in positive affect in the intervention group. The other three goal management strategies did
not relate to the increase in positive affect.
The finding that an increase in goal adjustment mediated the stable increase in positive
affect is promising, as it indicates that the intervention can be applied to increase the
goal management skills of people with polyarthritis and this enhanced ability can, in
turn, stimulate positive adaptation. The association between increased adaptive (coping)
strategies and increased positive affect is in line with previous research [12,53,54,16].
Results for the other secondary outcomes (anxiety symptoms, purpose in life and
satisfaction with participation) and the primary outcome depression were disappointing.
The time needed for visible changes to occur in positive affect is expected to be shorter
than for anxiety, depression, purpose in life and satisfaction with participation. Therefore, a
longer follow-up might have provided more insight into possible changes in these outcomes.
However, the intervention may also have no effect on these outcomes, even when a longer
follow-up is applied.
The strategy of goal adjustment proved to be the most valuable, in accordance with
previous research among patients with polyarthritis and populations with other chronic
diseases or disabilities [12,20,19,16]. With regard to the other three strategies the findings
are mixed. The tendency to maintain goals decreased among participants, but was not
found to mediate the increase in positive affect. Through participating in the intervention,
participants might have realized that some goals no longer matched with their personal
capacities and compensatory activities at disposal. While the experience of an irreversible
loss of goals during the programme might evoke negative feelings, it can also accelerate
the processes of adaptation, which can, in the long run, increase wellbeing [13]. In this way,
the absence of improvement on the adaptation outcomes (except for positive affect) in this
study could be due to the fact that accepting the unattainability of goals needs time, and
that an increase of positive affect is the first sign of the adaption process.
Despite our expectations, participants did not increase their tendency to search for and
commit to new goals. Possibly a first step in adapting to the disease is to downscale the
importance of certain goals. Searching for new goals might actually be a step beyond
the timeframe in which this study took place. In addition, the ability to disengage from
goals did not increase in the intervention group. Apart from theoretical explanations, the
measurement performance indicators of the related subscale for the strategy disengagement
of goals might have contributed to the (lack of) results found for the ability to disengage
from goals.
Participants increased their efficacy in coping with the influence that arthritis symptoms
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have in their daily lives. One explanation for this result is that the behavioural change
techniques applied in the programme to increase goal management competencies [6] are
usually also applied to increase self-efficacy [41,42]. Although self-efficacy did not mediate
the relation between the intervention and the increase in positive affect, the increase of
self-efficacy is a valuable result given its role in the improvement of health behaviour and
health status [40].
Parallel to the present study, an in-depth process evaluation of Right on Target was
executed [55]. Adherence to the protocol was found to be satisfying, indicating that
the intervention was executed as intended. Several behavioural change techniques and
components were appointed as effective ingredients by participants, while participants
differed in their preference for exercises and other elements of the programme. While the
use of various components has increased the attractiveness for a broad audience, for some
participants it might also have resulted in a low intensity of some of the effective elements.
Another question raised was whether the programme contained sufficient support for all
participants to become more flexible in their goal management and sufficient guidance on
when to apply which goal management strategy, as some participants felt that the duration
of the programme was not sufficient to internalise their newly learned behaviours or
address their problems. These insights can further inform improvement of the programme
and the choice of effective behavioural change techniques and their operationalization in
intervention development.
Inherent limitations of the present study, such as lack of randomization and the absence
of a cost-effectiveness analysis, can be attributed to the changes made to the design of the
study which were required due to the initial small number of applicants. As a result, only
a comparison of the follow-up measurements could occur between the intervention and
reference groups. And although the same inclusion and exclusion criteria were applied to
both groups, they differed with regard to some demographic and disease characteristics,
which might have been less likely if participants were randomly assigned to a condition.
Nevertheless, there is an advantage to having participants in the reference group not placed
on a waiting list or with expectations of joining an intervention after the measurements; the
reference group now reflects a natural course of adaptation. Reasons why people were less
interested than expected are unknown, but may have had to do with the characteristics of
the intervention. Offering the intervention in local community centres, reimbursement for
travel expenses by the health insurance, or providing online modules might reach a larger
group of participants.
Strong features were the considerable differences between the participants in the
intervention in disease and demographic characteristics and, furthermore, that the
programme was available in both city and regional hospitals of various sizes. Nevertheless,
two remarks are worth mentioning with regard to the generalizability of the findings to
other persons with polyarthritis. Firstly, despite wide-ranging recruitment, vast majority of
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QUASI-EXPERIMENTAL STUDY OF A GOAL MANAGEMENT INTERVENTION
the applicants entered the study through their clinic, and the sample, therefore, might be
less representative for the population of patients that are not under treatment at a clinic.
Secondly, the mean duration of disease was almost 8 years in the intervention group as
compared to 16 years in the reference group, which might suggest that people who are
more recently diagnosed are more willing to participate in an intervention or seek help.
Reaching patients with a relatively short duration of disease is suggested to be beneficial [<
2-8 years; 56,57-60]. Yet, conclusions of this study might be less applicable for people with
longer disease duration.
Other limitations relate to the measures applied. Although established and validated
measures previously applied in other studies of polyarthritis were used, low reliability
of the goal disengagement subscale and HADS-D in the reference group complicated
interpretation of the findings. The few studies that have been done on the responsiveness of
the HADS for changes over time, report it to be moderate [61-63], although it is considered
a valid screening instrument for depression and anxiety in persons with rheumatic diseases
[64,63,65]. Also, the applied inclusion criterion of at least a score of four on the depression
subscale of the HADS and exclusion criterion of ≥ 22 on the HADS (considered indicative of
severe psychological distress) can possibly have caused floor and ceiling effects that have
reduced the changes to detect an effect on the primary outcome measure. Lastly, measured
as “general experienced meaningfulness in life,” the measurement of purpose in life has
its limitations, as it might be difficult to determine progression or regression with this
instrument [8,45].
Conclusion
The goal management program was designed for people with mild depressive symptoms,
with the idea that threats to personal goals caused by arthritis and its symptoms can evoke
psychological distress and lower well-being. Right on Target was not effective in improving
depression and no change was observed in anxiety symptoms, purpose in life, and satisfaction
with participation. The goal management programme seemed to be effective in increasing
flexible goal adjustment and self-efficacy and decreasing tenacious goal pursuit. In addition,
the increase in the ability to adjust goals mediated a significant increase in positive affect
in the group that participated in the programme. In conclusion, the results of this study
provided preliminary evidence for the value for psychological health of an intervention
based on goal management for people with arthritis. Flexible goal adjustment and goal
tenacity are potentially helpful when designing interventions aimed to support people in
coping with threatened goals. Undoubtedly, more research is needed to provide a deeper
understanding of the complex relations between the management of personal goals and
well-being among the chronically ill population [66]. The goal management intervention was
developed with a person-focused perspective and is based on personal preferences, needs
and values with an emphasis on the personal meaning of an illness. The implementation of a
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person-focused intervention in secondary care poses a challenge for those involved, yet the
present study provides a small but promising direction towards greater wellbeing.
Other information
Registration and protocol. The study protocol was registered at www.trialregister.nl, under
number NTR3606, and published [6]. After the trial commenced, substantial changes were
made to the study design that were not described in the publication. Changes are described
briefly in the Methods section of this paper and have been fully listed in the trial register. In
addition to the changes described in the Method section, changes were made to facilitate
data comparison. Firstly, the cost-effectiveness measurements were disregarded as no data
on costs and use of health services were measured in the cohort where the reference group
was drawn from. Secondly, the follow-up of eight months for the intervention group was
brought forward to six months to correspond to the data available in the observational
cohort. Thirdly, a number of questionnaires did not match between the two surveys and,
therefore, were not addressed in the current study.
Ethical approval. Multicentre research ethics committee approval from the Medical Ethics
Review Committee Twente (protocol ID: NL40257.044.12). Local research ethics committee
approval was obtained at all four sites where patients were recruited for the trial.
Acknowledgements
We wish to thank the patients who participated in this study. We thank our patient partners,
Lynn Packwood and Klaas Sikkel, who added the patient perspective to this project.
Many thanks to the nurses involved as trainers; Diana Boerema-Evers, Rianka Hek, Riëtte
Leemreize-Mol, Rudin Peters and Elsbeth Veldhuis. Our gratitude also goes to all nurses and
rheumatologists, including, in particular, the local researchers and the rheumatology hospital
departments of the Gelderse Vallei Ziekenhuis (Ede), Medisch Spectrum Twente (Enschede),
St. Elisabeth Ziekenhuis (Tilburg) and Streekziekenhuis Koningin Beatrix (Winterswijk) for
their support and assistance. Thanks to prof. dr. J.A.M. van der Palen and dr. P. ten Klooster
for statistical advice.
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7A mixed-methods
process evaluation of
a goal management
intervention for
patients with
polyarthritis
R.Y. Arends
C. Bode
E. Taal
M.A.F.J. van de Laar
Submitted for publication
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Abstract
Process evaluations of newly developed interventions are necessary to identify effective and
less effective intervention components. First aim of this study was to identify key components
of a psychosocial goal management intervention from the perspective of participants, and
second aim was to evaluate the intervention’s fidelity.
A mixed-methods approach was applied to 24 interviews with participants post-
intervention and 16 audio recordings of random training sessions.
Participants experienced three key components: 1) the content, in which specific exercises
helped to raise awareness and (intention to) change goal management behaviour, 2)
person-focused approach, specifically, the nurse as trainer and personal fit of the approach,
and 3) social mechanisms, including facilitating group processes and interpersonal processes.
Adherence to the protocol by the trainers was high, while differences were found in
the degree to which they were able to apply the intended collaborative approach and
psychological communication skills.
The applied design provided valuable insights into the processes that took place. Both
the effects experienced by participants in relationship to the content, approach and
social mechanisms as well as the strengths and weaknesses found with regard to fidelity
provide insights that can inform the development and implementation of person-focused
interventions.
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A MIXED-METHODS PROCESS EVALUATION OF A GOAL MANAGEMENT INTERVENTION
Introduction
Evaluating interventions in terms of the processes that have taken place has become more
vital for developers and evaluators of complex healthcare interventions [1]. Such evaluations
are necessary because they identify the effective and less effective components, and these
findings can, in turn, inform future theories, intervention designs and methods [2-4] as well
as ascertain the pathways by which an intervention’s key components produce the desired
benefits [5,1,6]. A sound process evaluation also determines under which conditions the
intervention is effective, for whom it is effective, and how it can be optimized [1,2]. Especially
in multicentre trials, where the same intervention may be implemented and received in
different ways, process evaluations can help to distinguish between implementation failure
and failure of the concept or theory [7]. Knowledge of the fidelity of an intervention
is required for understanding its effects or the lack of it. Fidelity represents the quality
and integrity of an intervention as perceived by the developers, and includes whether an
intervention was carried out according to a predefined protocol and in the manner and the
spirit intended [2].
This study evaluated a self-management intervention for people with polyarthritis from
the perspective of the participants and assessed the quality of the programme’s execution.
Polyarthritis includes a variety of disorders associated with autoimmune pathologies that
typically result in the inflammation of five or more joints, for example, rheumatoid arthritis,
ankylosing spondylitis and psoriatic arthritis. Persisting pain, fatigue, disability, deformity,
distress and reduced quality of life can be daily stressors for patients with polyarthritis [8,9].
Interventions that provide patients with the skills and techniques to live with and manage
their disease in daily life are essential, as most of the time people have to manage a chronic
disease outside of the healthcare system [10]. The diverse range of interventions concerning
patients’ management of chronic illness are commonly referred to as self-management
interventions, and they aim to increase patients’ involvement and control in their treatment
and the disease’s subsequent effects on their lives [11].
However, self-management interventions for patients with inflammatory arthritis usually
show limited long-term effects [10,12]. One reason for this might be that current self-
management initiatives are often developed from a problem-oriented point of view, as they
originate from health systems that are organized around treatment and cure of disease. In
contrast, the limitations patients face are not only in the medical domain but also in their
social and psychological domains. Therefore self-management from a medical approach does
not necessarily fit all needs of patients with a chronic disease [13]. Making the patient more
responsible for his or her own care enhances self-efficacy and supports self-management
[14]. According to Lawn and Schoo [15], persons with chronic conditions need (besides
ongoing support) a person-centred approach to foster: a greater focus on self-management
by the individual person, partnerships between patient and health professionals, and
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collaboration between healthcare providers. To stimulate effective self-management, the
focus needs to shift from providing information on symptom management and lifestyle
choices to a more collaborative model, in which patients are proactive in identifying areas
that could be improved for their own self-management [14,16].
One intervention that integrates the polyarthritis patients’ perspective is Right On
Target, a nurse-led group intervention based on goal management theory [17]. This goal-
management intervention can be called holistic, as it aims to match patients’ experiences in
all aspects of their life. Right On Target focuses on how the patient can cope with activities
and life goals that have become threatened or impossible to attain due to arthritis. While
having and striving for personal goals gives direction and meaning to life [18-20], the pursuit
of goals may also produce negative psychological effects when goals become unattainable
or no progress is made towards a desired goal [21,22]. Previous studies linked higher levels of
various goal management competencies to lower levels of mental distress and higher levels
of well-being in chronic disease populations [23-30]. The ability to flexibly use several goal
management competencies is needed to cope with the changing circumstances prompted
by a chronic disease [31]; as living with it is an ongoing process of finding equilibrium in
situations that may constantly change [32].
For this purpose, Right On Target allows participants to learn general applicable goal
management competencies that are not disease specific, but can be applied to various difficult
disease-related situations in daily life in which personal goals are threatened. Underlying the
programme is the belief that participants need a broad behavioural repertoire and increased
self-awareness to make appropriate choices about dealing with threatened personal goals.
The four strategies that receive attention in the intervention are: goal maintenance,
goal adjustment, goal disengagement and goal re-engagement [18,29,33]. These four
strategies were found comprehensive from a patient’s perspective [34]. To developed and
stimulate goal management competencies psychological and behaviour change techniques
mainly rooted in learning theory and social cognition theories, such as the use of problem
identification, goal setting, modelling and the evaluation of behaviour were applied in the
intervention. The assumption that participants are experts of their own personal situation
is reflected in the personal trajectory of the programme (see Method section). The personal
trajectory is intended to improve the fit of the goal management strategy and the situation
of a participant and increase resilience during and after the programme by adapting the
intervention to the needs and social environment of the participants [17].
The relationship between the trainer and the participants is best described as collaborative,
in contrast to patient-expert whereby the trainer knows what is best for the participant
[16,35]. The trainer is mainly responsible for creating a safe atmosphere in which participants
are stimulated to experiment with different goal management strategies for coping with
a threatened goal of personal importance. This role is emphasized during the training of
the trainers and elaborated in the intervention manual. For example, trainers are advised
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to encourage the group to help individual participants to identify problems and raise
awareness. The use of appropriate psychological communication skills plays an essential
role in the creation of a safe atmosphere and supports the above described collaborative
approach [36].
The first aim of this study was to identify key components of the intervention from the
perspective of participants. To answer this question, the elements of the intervention
that were regarded as key components by participants were examined. The focus on key
components was chosen to gain insights into the perceived processes that took place during
participation in the programme and which elements of the programme were seen as
responsible for these processes. There were several reasons for focusing on the perspective
of participants. Firstly, as the intervention is intended to relate to the perspective of arthritis
patients, their perception on the effectiveness of the components is indispensable in order
to identify key components and techniques. Secondly, participants are not passive receivers
of an intervention but interact with it and are influenced by their circumstances, attitudes,
beliefs, social norms and resources [6]. Thirdly, evaluating the needs, wishes and concerns of
the intended users provides key information for broader implementation.
The second aim of this study was to evaluate whether the intervention was executed as
intended, often referred to as the fidelity of an intervention. The focus in the present study
was on the approach and atmosphere the trainers deployed during the group meetings, the
psychological communication skills of the trainers and the adherence to the protocol with
regard to the sequence of information and exercises during the meetings. This focus was
chosen because the specific person-focused character of the intervention is conceptualized
as an essential component of the intervention, with the trainers playing a vital role in its
implementation. In the current study, nurses specialized in rheumatology care were trained
to give the goal management intervention. By placing the intervention in an ambulatory
clinical healthcare setting, we hoped to further develop or strengthen the ongoing patient-
provider partnership that might promote self-management in the participants’ medical care
[37].
Method
A mixed-methods approach was used to guarantee a comprehensive evaluation of the
complexity of the intervention. Our methodology included semi-structured in-depth
interviews with a subset of participants and voice recordings of programme meetings.
Different perspectives were combined to gain an understanding of the processes in the
intervention and to increase validity of the findings [5]. The approach of a mixed-methods
process evaluation is new in research on goal management in chronic disease. Our aims
of deploying multiple data collection methods were to mutually corroborate findings
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(triangulation) and bring together a more comprehensive account of the research aims
(completeness) [38].
Approval for the study was obtained from a medical ethics review committee under number
NL40257.044.12, and written informed consent was obtained from all the participants.
Intervention
Right On Target is a protocol-based psychosocial educational programme for patients with
polyarthritis. Right On Target was delivered in six group meetings (four weekly and two
bi-weekly) in a recent multicentre intervention study. The goal management programme
consisted of six group-based meetings with six to ten participants and individual homework
assignments. Arends et al. [17] structured the intervention as follows. First, participants
became aware of the influence of arthritis on their life (e.g. the valued activities threatened
by arthritis) and the higher goals that were at stake. Subsequently, the participants’
standard behaviour and reaction pattern to deal with such difficulties were examined and
different behavioural options discussed. In the personal trajectory, participants then choose
a threatened activity and were stimulated to try out different behavioural options during
the intervention in order to experience and practice multiple goal management strategies.
The experiences of the personal trajectory were evaluated and discussed during the group
meetings, and participants were encouraged to help and stimulate each other’s new
behaviour. The topics and objectives for each meeting appear in Additional Information 1.
Trainers
Four hospitals were approached for participation and interested nurses who specialized in
rheumatology care were invited to participate. Four female nurses led two or more groups.
The mean age of the nurses was 47.6 years (SD: 10.21, range: 33-56), with mean experience
as a nurse of 25.4 years (SD: 10.41, range: 11-35), and mean experience as specialized
rheumatology nurse of five years (SD: 1, range: 4-6).
None of the nurses had experience as a trainer in psychological programmes. Two had
previous teaching experience. The nurses attended a one-day training prior to the start of the
programme. In the first phase of this training, nurses worked through the entire programme
in the role of participant to experience the techniques employed. Subsequently, the nurses
practiced the trainer role, with other nurses as simulation participants. The nurses received
detailed feedback on their performance from two psychologists. Trainers’ teaching skills and
knowledge concerning intervention techniques and the goal management strategies were
evaluated at the end of the training. The trained nurses were also monitored and supervised
by a psychologist during their execution of the intervention with participants.
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Intervention participants
Inclusion criteria for patients to participate in the goal management programme were
a diagnosis of polyarthritis, age 18 years or over, and a score of four or higher on the
depression subscale of the Hospital Anxiety and Depression Scale (HADS). People with
severe pathological distress (total HADS ≥ 22) were excluded. Exclusion criteria were actual
enrolment in psychotherapeutic treatment and insufficient Dutch language skills. More
details on recruitment strategy and the detailed study design can be found in Arends et
al. [17]. Table 1 shows an overview of the groups, participants, and number of recorded
meetings per site.
Table 1 Overview per site of the number of groups, participants and recorded meetings
Site Groups Participants Recorded meetingsA 6 40 5B 3 17 5C 2 13 3D 2 15 3Total 13 85 16
Interview participants. Two participants per intervention group were interviewed once
the programme ended. Participants were selected on the basis of stratified purposeful
sampling in order to illustrate subgroups of interest [39]. The purpose was to compose a
sample that differed in age, sex, origin (e.g. Dutch or foreign), work status, diagnosis, and
disease duration. Characteristics of the participants can be found in Table 2. To prevent the
overrepresentation of Site A, no participants from Groups A3 and A4 were interviewed.
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Table 2 Demographic and clinical characteristics of participants in the intervention (n = 85) and the interviewed
participants (n = 24)
Intervention participants Interview participantsSex, n (%) Male 24 (28) 6 (25) Female 61 (71.8) 18 (75)Foreign origin unknown 3 (13)Age, mean (SD), range 57.34 (11.63), 23-82 54 (13.77), 24-73Marital status, n (%) Not living with partner 19 (22.4) 7 (29) Living with partner 63 (74.1) 17 (71) Missing 3 (3.5) Educational level a None/Low 27(31.8) 4(17) Middle 40 (47.1) 13 (54) Higher 15 (16.6) 7 (29) Missing 3 (3.5) Work status, n (%) No paid job 55 (64.7) 13 (54) Full-time/part-timeemployment 26(30.6) 11(46) Missing 4 (4.7) Diagnosis, n (%) Rheumatoid arthritis 65 (76.5) 18 (75) Gout and other crystal diseases 2 (2.4) 0 (0) Polymyalgia and Temporal Arteriitis 6 (7.1) 2 (8) Spondylarthropathy 6 (7.1) 3 (13) SLE and other systemic diseases 1 (1.2) 1 (4) Other/non-classifiable 5(5.9) 0(0)Disease duration, mean (SD), range 7.81 (8.30), 0-41 7.78 (9.02), 1-41
a Low: no education, primary school or lower vocational education; Middle: high school and middle vocational education; High: high vocational education and university.
Data collection
Interviews were conducted by the first author (n = 18) and a research assistant (n = 6) and were
held at the preferred location of the participant, either at home, at the research university
or at the hospital. A semi-structured interview scheme was used (see Additional Information
2). The interviews were recorded using a voice recorder and subsequently transcribed
verbatim. Sixteen random meetings of the intervention were audio taped in order to check
for correct delivery of the protocol and other trainer-related aspects regarding the fidelity
of the intervention, such as psychological communication skills.
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Analysis
A thematic analysis of content, driven by the first research aim, was employed for the
interviews, and this analysis facilitated a theory-informed approach in the identification of
important assertions and themes [40]. Analysis started as a top-down process with an initial
code scheme consisting of a priori codes based on the research aim and later combined
with codes emerging from a subset of interviews. Codes were added during encoding until
no new codes emerged during analysis of new data, and then previous interviews were
re-analysed using the complemented code scheme. The interviews were analysed by one
researcher (Author 1) with a subset of 10% analysed by two additional researchers (Authors
2 & 3). During this process, the code scheme was discussed several times by the researchers
(Authors 1, 2 & 3) and adjusted until agreement was reached between them. The interview
data were coded using Atlas.ti 7 qualitative data analysis software.
For the second research aim, recordings of meetings were analysed. The recorded meetings
were intensively listened to and coded by the first author and a research assistant using a
code scheme (a concise version of the code scheme can be found in Additional Information
3). With regard to adherence to the protocol, the following themes were coded: the
coverage of all content, the correct sequence, and the correct explanation by the trainer. For
the intended atmosphere, both interactions between participants and between trainer and
participants were coded, as well as mutual support provided by participants, the instructions
and structure monitoring provided by trainers, and the degree to which trainers emphasized
collaboration with participants. Several psychological communication skills were seen as
relevant for the creation of a safe atmosphere and supportive of a collaborative atmosphere
[36,41]. Codes for psychological communication skills of the trainers included counselling
skills (e.g. showing understanding, open-ended questions and small encouragements),
dividing attention between all participants, attention given to the needs of the participants,
and response to subjects beyond the scope of the training.
Results
First we discuss the results that correspond to the first research aim concerning the key
components of the intervention as experienced by participants. Then the results of the
second aim with regard to the fidelity are provided. Regarding subsequent testimonies, A
to D indicate the four sites and the abbreviations M1 to M6 indicate a particular meeting.
P followed by a number indicates a specific participant, followed by their sex, age, and the
last letters indicate his or her diagnosis. Disease diagnoses were abbreviated as follows;
rheumatoid arthritis (RA), spondylarthropathy (SA), polymyalgia (Po), and arthritis psoriatica
(AP).
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Key components as perceived by participants
Three key components arose from the interviews: content, the person-focused approach and
social mechanisms. (Table 3 provides an overview). These key components include multiple
topics, which are discussed in detail below. (Topics are denoted in italics.)
Table 3 The participants’ experience of key components of a goal management programme: key components
and related topics, facilitators and processes
Key component Topics Facilitators / ProcessesContent of the programme Raised awareness of: •Writing exercises •Ownbehaviour •Exercises involving role models •Possibilitiesandlimitations •Mental simulation caused by arthritis •Acceptingarthritis Change in goal management behaviour: •Personal trajectory •Learningandpracticing •Graphic figures depicting four alternative strategies goal management strategies •Statingone’sownlimitationsand boundaries Person-focused approach Nurse as trainer Personal fit of the approach Social mechanisms Facilitating group processes •Peer support •Bonding Interpersonal processes •Social comparison •Modelling
Note. Key components are composed of topics (in italics).
The content
The first key component dealt with the content of the programme. Two major topics that
related to this key component were: raised awareness and change in goal management
behaviour. Raised awareness was perceived in several areas and linked to writing exercises,
exercises that involved role models and the technique of mental simulation. Change in goal
management behavioural was constituted by learning and practicing alternative strategies
than one’s own ‘preferred’ approach and stating one’s own limitations and boundaries.
Elements linked to change in goal management behaviour by participants were the
personal trajectory and the graphic figures depicting the four goal management strategies.
Some participants wished for ongoing support after the intervention, to sustain or achieve
behavioural change. Each participant had his or her own preferences for elements of the
training and specific exercises.
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Raised awareness. Many participants indicated that they were influenced by the training
to become more aware and reflective of their behaviour, including awareness and reflections
on the possibilities and limitations caused by arthritis, and acknowledging and accepting
arthritis. “Now with this [training], it’s not so bad at all that there is something you can’t do.
Sure, it’s not nice and even feels like a farewell, but still you can also try to do something else
instead” (P3, A, female, 41y, RA). Participants mentioned the programme had increased their
acceptance of arthritis as well as quality of life and that they learned specific competencies
and tools for dealing with arthritis. “The course aims to give our disease a place in our lives,
along with tools that will help us to do that” (P5, A, male, 57y, RA). Some participants came
closer to accepting their arthritis and planned to continue working in this way, despite the
challenges.
[Awareness of alternative ways to manage personal goals] helps me now, you know.
Sometimes I wonder why I didn’t think of it before, for it does make life easier. On the
other hand, I can take on an attitude like “this is the way I am” and “this is the way I
want to be.” So, one moment it helps and the other moment I put it aside. That’s my
stubbornness again. Yet it does help. It helps, because you have to deal with it in a
conscious way. (P21, A, female, 38y, AP)
With regard to personal goals, becoming aware of one’s own higher level goals and new
and alternative behavioural options emerged.
[The course] also provided me with real insight that allowed me to look at goals in a
different way. The [goal hierarchy] pyramid was particularly useful for this. For indeed, it
can be one’s goal to do sports, but not in the way I first looked at it: “It has to be hockey,
it has to be tennis, it has to be this.” I can no longer do such things and have to let go of
them… For me, it is not about holding a hockey stick or a tennis racket, but about being
with other people. That is the insight [the course] gave me. (P24, A, female 36y, RA)
Participants often intended to change their behaviour (see also the following topic) after
gaining more awareness.
I now stay alert to the fact that I no longer want to always just move forward. I now very
deliberately think: that is what I am still able to do, and that is what I am going to aim
at. (P3, A, female, 41y, RA)
Participants considered several exercises as helpful for raising their awareness; mostly the
writing exercises, exercises involving role models and the technique of mental simulation.
For example, participants stated that writing down limitations caused by arthritis and the
accompanying emotions was confronting but very useful. The goal hierarchy pyramid (used
for linking threatened activities to associated higher goals) was another example of a
writing exercise that participants mentioned as helpful for achieving awareness of personal
goals. “Those pyramids, so to speak, with the aid of which you set goals – I think they are
really important” (P8, B, female, 24y, RA). Other frequently mentioned helpful exercises
were related to role models, including exercises that used narratives of fictitious patients.
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I found [the stories] very clear for myself. Sometimes I completely identified with them.
I found them very good, indeed, because there I read about the restrictions people
actually live with. Above all, I found it important to see how different people deal with
such limitations and what effect this has on family members, friends and acquaintances.
(P18, D, female, 65y, RA)
Participants evaluated the technique of mental simulation in a variety of ways. This
technique was applied in the training to stimulate people to apply a new, until then not
preferred, goal management strategy. The following three quotes show the disunity among
participants, who evaluated the exercise as either personally ineffective, challenging but
helpful, or self-revealing.
That whole simulation thing – I’m perhaps a little too down-to-earth and pragmatic for
it to work. (P5, A, male, 57y, RA)
In itself I did find it practical, which I had not expected. I thought it was going to be
really woolly, but, in itself, it was fine. It made you think about things. (P8, B, female,
24y, RA)
The exercise that made us listen to the [trainer] with our eyes closed worked very well.
Yes, I could see right before me all that she said. And her tone was … yes, it was very
good. (P13, D, female, 70y, SA)
Change in goal management behaviour. Participants talked about a change in goal
management behaviour as one of the major effects of the training. Participants saw
becoming more flexible in their behaviour and learning how to use other goal management
strategies as aims of the intervention.
When the moment is there, try to step out of your beaten tracks… There are certain
things one is used to doing, and when they are no longer possible, you start doing
something else… And now, all those different stories, like the little figures, point to
different strategies and that makes one think. Try to solve the issue in a different way.
(P12, C, female, 60y, RA)
Also within this topic, increasing self-knowledge with regard to personal goals was mentioned.
I think the course intended, in particular, to show people that they can make choices
for themselves, to help them make as smart a choice as possible, instead of continuing
the patterns in which they were stuck, and then to see if together they can find new
possibilities. (P20, B, female, 55y, RA)
One part of the programme that participants felt as key for changing goal management
behaviour was the individual’s personal trajectory, which among other exercises included a
detailed action plan.
The aim was to get people moving, specifically to see whether – with the disease one
has – is it possible to develop an initiative and not discard it and push it away. To just do
it! With a plan of action, you really have to get going. (P14, D, male, 55y, RA)
With regard to the personal trajectory, participants had to choose a threatened activity,
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execute a preferred strategy to deal with the threatened activity and, subsequently, try out
an alternative strategy. “It feels like you quickly choose the strategy that suits you best.
And then, when you apply a different strategy, you think, Darn, this works better than
the [strategy] I would have chosen myself!” (P11, C, female, 49y, AP). Purposeful behaviour
was new for some participants. For others trying out alternative ways of goal management
offered new insights and produced the greatest changes.
What I hear others say makes me say to myself, “Don’t keep droning on like that! Hang
in there and don’t immediately say you can’t do it!” That is what I learned from it. (P13,
D, female, 70y, SA)
The last two times I had to carry out those tasks – really setting myself a target and first
following the strategy that I always choose, but then deciding on a different strategy
and finding out: “Hey, this actually works a lot better.” (P11, C, female, 49y, AP)
In particular, participants noted one behavioural change that involved expressing and/or
setting one’s own boundaries and limitations. Some participants used the programme to
start discussing their arthritis-related issues at the workplace or within the family.
For me it was about sooner saying “no.” I am the kind of person that simply says “yes”
to everything. I have learned now to also think about myself. And that is really very
pleasant, especially for someone who suffers from arthritis, a disease that no one is
aware of … To bring this forward in one’s family, now that the course is over – I realize
that not everyone is always thinking of doing that. But now one hesitates less to say, “I
am sorry, but I am having a bad day today” and take a break … Just as it is easier now to
ask someone, “Would you mind giving me a hand?” (P22, A, female, 64y, RA)
After participating in the program, people intended to maintain their new goal management
behaviour, mainly supported by their increased awareness of alternative behavioural options
to manage personal goals and the benefits of using such options. The graphic figure cards
were specifically mentioned as one practical tool used in the programme which helped in
sustaining behavioural change. At the end of the training, participants received small cards
with graphic figures that depicted the four goal management strategies covered in the
programme. These “figures” were often mentioned as a useful and easy way to refer to the
four goal management strategies in the future.
When I am busy with something, I think I will indeed make use of those [figures] in the
future. At moments that I believe something is not going right or think, “What am I
doing?” – at such moments I think I will indeed take those figures. (P18, D, female, 65y,
RA)
Two participants did not feel confident enough in their capabilities to perpetuate any new
behaviour and felt that they needed someone who could act as a personal supervisor or coach.
Furthermore, three participants felt that the duration of the programme was not sufficient
to address their problems or to internalize their newly learned behaviours. According to
these participants, one or more booster meetings would be sufficient to address this matter.
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Maybe [we could meet] again in three months and then check: Is he now able to do
it by himself? Are these ladies now able to do it by themselves, sometimes going out
together for a cup of coffee or for a walk? (P24, A, female, 36y, RA)
The personfocused approach
Implicit in the programme was the belief that, while participants can benefit from learning
general applicable goal management competencies and increase their self-awareness to
make appropriate choices, they know best how to manage their own situation. This belief
originated from a person-focused approach. The second key component related to this
approach and its operationalisation in the programme included: a) the nurse in the role
as trainer as experienced and appreciated by participants, and b) the degree to which the
personfocused approach fitted the participants. Many participants assessed these topics
very positively and as being a major value for the programme. Some participants were more
critical, stating that the person-focused approach did not fit them personally and, therefore,
had less impact. One participant stated that he would have preferred receiving other types
of information, such as dietary guidelines and how to manage physical pain, rather than
how to change his behaviour.
Nurse as trainer. In general, the participants that were interviewed were very positive
about the deployment of specialized rheumatology nurses as trainers. Some participants
found it convenient that their trainer was a nurse, and some had previously been in
consultation with the nurse.
Also with the help of [the trainer], who can offer the necessary support and motivation,
who can sometimes help you get a grip on situations in which you get stranded,
financially as well as physically. This may not be dealt with in depth during the course,
but at least it is clear where you can turn to for further support (P14, D, male, 55y, RA).
Some participants had difficulties understanding parts of the training. One of the
interviewees reported that her trainer did not sufficiently master the content of the training
to make everything understandable for all participants.
A lot of people did not understand that pyramid … She [the trainer] actually had some
trouble taking advantage of it. The best thing really was to read it carefully oneself. But
still, many took it in a different way. (P23, A, female, 46y, RA)
Although some participants initially had negative comments about their trainer, they
subsequently showed a great deal of understanding and defended their trainer. For example,
some participants defended their trainer by saying that she had given the programme for
the first time or that she had to follow a schedule. In general, however, the participants felt
that their trainer gave very good explanations. Other positive points mentioned were that
the trainer was a good listener, empathic and offered personal attention, for example:
And if one out of five did not understand it, she [the trainer] tried to explain it in a
different way. It all really went very well. (P13, D, female, 70y, SA)
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But [the trainer] is just a wonderful, wonderful woman. She really does a great job. Yes,
she did really well. Calm, with a laugh, really – and that is how it should be. (P22, A,
female, 64y, RA)
Personal fit of the personfocused approach. As stated above, the person-focused approach
was at the heart of the programme. This implies that the content of the programme focused
on becoming aware of personal goals and practicing several goal management strategies in
contrast to a disease-focused approach. The majority of participants evaluated the approach
positively and reported a positive influence as a result of the training. There were also
signals that the training did not meet the expectations of all participants. For instance,
nine participants had expected to passively receive practical and medical information
during the training. They apparently were comfortable relying on their health providers
and preferred to give responsibility to their rheumatologist, the trainer of the programme
or the developers of the training. It became evident that most of them were satisfied with
the content and the form of the training afterwards, but one would still have preferred to
receive clear instructions (e.g. do’s and don’ts) instead of working with personal goals and
priorities.
I have learned certain things, but only in a general sense; nothing was specifically
tailored for arthritis. I found that somewhat disappointing … I would have liked to have
certain handles that enable me to better deal with it … I expected to be told specific
things to do and not to do with regard to this disease … Do I dress warmly or rather not?
Should I go biking or rather avoid movement? (P6, B, male, 62y, Po)
The social mechanisms
The third key component that arose from the interviews concerned the social processes that
took place in the groups, including: facilitating group processes and interpersonal processes.
Facilitating group processes were perceived to increase the effect of the intervention;
including peer support and bonding. Also named were several interpersonal processes that
took place during participation in the intervention, including: social comparison with other
participants and modelling.
Facilitating group processes. All participants perceived the contact with peer participants as
of great value. Tips and tricks to deal with arthritis were exchanged in the group. The group
also provided help to its members for dealing with difficult exercises and encouragement to
perform alternative or new behaviours.
“And when you are part of a group, you really have to show results: then there is that
threshold you are pushed over in order to develop an initiative and bring it to an end”
(P14, D, male, 55y, RA).
Most participants described the group as a safe place to open up personally and experienced
a strong mutual bond. Compassion and support were provided within the group and
participants understood each other’s situation as they could often identify with each other.
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“There you could also just cry, which was seen as normal. There was no judgment about it.
There we actually heard others say, ‘Oh, we too recognize [what you are going through].’
It really felt like being recognized” (P24, A, female, 36y, RA). Identifying with and receiving
compassion and support from the other group members was an essential premise for sharing
personal experiences, as the following quote illustrates.
In the beginning, [the group was] very scary, because I am really not a person who
speaks well in groups, and my attitude is like: just let me be. But as we progressed, it
went better, and you actually allowed yourself to become more open. (P3, A, female,
41y, RA)
In line with this, we found a reluctance to share personal experiences in one group due to
the inconsistent attendance of participants.
Because the group was small and we only saw each other six times, usually with a few
new participants, this made me somewhat cautious. I know it can work, but such a
degree of familiarity and trust is not easily reached. (P20, B, female, 55y, RA)
Interpersonal processes. Social comparison was an important topic on a personal level.
Most participants could identify with some of the others and valued the experienced
heterogeneous composition of the group. A minority of the participants could not identify
with the others, as they perceived differences between themselves and the majority of the
group with regard to their phase of life, experience or other limitations. For some of these
people, it was difficult to fully participate.
I still hoped, and I actually still hope now, that I will overcome [the rheumatism], while
the whole [programme] was focused on the fact that one has arthritis and has to accept
it and learn how to handle it. In that respect, I was an exception. I also think that I was
the one who had the fewest physical problems. (P6, B, male, 62y, Po)
However, most participants highly valued their group and its heterogeneity.
“Of course, I cannot compare myself with their situation, because they all have a job or
do volunteer work … But it’s really nice that the group is so mixed, because you can see
what the future might bring” (P8, B, female, 24y, RA).
Participants compared themselves with others regarding severity of arthritis, extent of
limitations and level of adaptation. This could be confronting for the person who felt he or
she was the worse for the comparison. The following testimony shows that a participant also
tried to see the positive side of this topic.
You also become aware of your ranking in, let’s say, the severity of the arthritis, which was
a picture you did not see for yourself. You usually see [your arthritis] more optimistically
than it perhaps is in reality … It is good for oneself to know how severe it really is or how
much discomfort one has in comparison to someone else… You then recognize a lot of
things… which is more like a reassurance. (P15, C, male, 60y, SA)
On the other hand, participants with the severest arthritis were often seen as the most
experienced by other participants, and some functioned as role models.
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There are also people who have a much worse degree [of arthritis] than you, who have
been ill all their lives and are bound to a wheelchair. They have an advantage of a kind,
since they know how it all is. (P14, D, male, 55y, RA)
Fidelity
The second research question covered the evaluation of the execution of the intervention,
and the trainer is central to this discussion. The question addressed whether the trainers
followed the protocol, to what extent they were able to create the intended atmosphere
during the meetings, whether they followed the collaborative approach, and their skills
in psychological communication. Several psychological communication skills were seen as
relevant for creating a safe atmosphere and supporting a collaborative atmosphere. The
atmosphere and trainer skills are presented together, as they mutually affected each other,
and were often linked in the recordings.
Overall, the meetings recordings indicated that the adherence to the protocol was very high
and all the different parts were covered in the meetings as scheduled. It seemed the trainers
were able to create an atmosphere in which participants felt safe to talk about personal
experiences and to attempt new behaviours. Generally, participants appeared to listen to
each other during meetings and share different opinions. The recordings of meetings also
revealed that the trainers differed in the degree to which they were able to abstain from
offering suggestions for participants’ behaviour (i.e. the expert role). Some trainers seemed
to have difficulties with assuming a coaching role, which emphasized the participants’ own
responsibility for managing their arthritis. In agreement with this observation, differences
with regard to the psychological communication skills of the trainers were also found.
Adherence to the protocol
All trainers were able to give direct instructions and maintain the meetings’ structure. In
general the four trainers followed the manual during the meetings, and the content of the
manual was presented in the correct sequence. Once a trainer unintentionally skipped a part
of a meeting’s content, but soon realized this oversight and covered the missed part later in
the meeting. In general, the exercises were explained well, and some trainers provided extra
examples to help participants understand the material.
Personfocused approach, atmosphere and trainer skills
The trainers seemed to approach the participants with respect, interest, patience and
understanding. The trainers praised participants for their efforts and appeared interested in
the personal experiences of the participants, as the following fragment shows.
Trainer: “One thing I would still like to know is what it meant to you [not to reach the
goal you had established for yourself].” Participant: “Well, I have mixed feelings about
it. On the one hand… [elaborates on those feelings.]”
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Trainers appeared to give participants the feeling that they were taken seriously by expressing
understanding for the participants’ situation, giving adequate time to everyone to relate
their personal experiences, and offering encouragement. In the following fragment, the
trainer showed interest and understanding by using reflective listening to stimulate the
participant to elaborate on her feelings and experience.
[Participant talks about experiencing increasing pressure at work, and then becomes
emotional.] Trainer: “I see that it really affects you a lot. You find it quite annoying.”
[Participant elaborates more about what disturbs her most about the situation.]
All four trainers appeared to divide their attention and interest amongst the participants
and continually try to involve all of them. Nevertheless, recordings of meetings showed
considerable differences between the levels of the four trainers with regard to psychological
communication skills. Two of the trainers had seemed to have difficulties asking open-
ended questions and leaving room for participants to talk, what appeared to result in
participants being less motivated to disclose themselves. These conversations became
unidirectional through the use of many closed questions. The use of closed questions
and giving advice (or filling in for participants) undermined the collaborative approach.
For example, during an activity, one trainer seemed to impose her own opinion on a
participant who was hesitating to complete a personal response to an exercise question.
This trainer did not ask open questions, but instead said things like: “I suggest you do
this” and “I think that this for you is [the activity you need to fill in the exercise with].” In
response, the participant was observed as occasionally interjecting: “Yes, yes.” Once the
participant agreed with her, the trainer changed the topic. In contrast, the trainer in the
conversation below stimulated a participant to formulate her own solution by asking an
open-ended question.
[The threatened goal of a participant has been discussed extensively and the
problem is made more concrete. Multiple solutions are put forward by the group and
trainer.] Participant: “I’m going to put it to work.” Trainer: “How can we elaborate on
that? (…) When you say, ‘I’m going to work on the threatened activity?’” Participant:
“I…uh, I actually know that I can call the President and say I want to talk with him.”
One of the trainers sounded occasionally impatient and interrupted a participant to impose
her own answer. Recordings revealed that some trainers possibly had difficulties with
silences, for example, when participants did not respond immediately to a question. In order
to avoid silences, often a closed question was asked successively probably in order to quickly
receive a response. For example, one trainer actually answered her own question that she
posed to a participant, preventing the participant the time needed to discover her own
solution:
Trainer: “And have you considered a different arrangement for walks every week?”
Participant [hesitantly]: “Yes, I have indeed…” Trainer [interrupts]: “Yes, as it was (walks)
for three days in a row, so probably it is better to change the arrangement?”
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In contrast, two of the four trainers appeared to master the psychological communication
skills (e.g. asking open-ended questions, continual questioning/supplementary questions,
summarizing, giving time/allowing for silence). Moreover, these trainers also encouraged
participants to try new behaviours to realize set goals. The following fragment from an initial
meeting shows how the trainer, by asking open-ended questions, was able to stimulate a
participant to open up.
Trainer: “What do you (Participant X) think of the way in which they deal with things
in the story?” Participant X: “I recognize a lot in it. I too have the greatest difficulty in
talking about it with others. (…) In my family, I sometimes feel like they do not want
to hear it, about me being ill. (…) That they do not like me to talk about it sometimes
– that is what I feel.”
Discussion
The aim of this study was to evaluate a goal management programme from the perspective
of the participants and to assess the fidelity of the intervention. With regard to the first
research aim, three key components for the effect of the programme from the perspective of
participants became evident: the content of the programme, the person-focused approach
and the social mechanisms of the programme. Firstly, the component content included
1) writing exercises, role models, and mental simulation that led to raised awareness of
one’s own behaviour, personal goals, and possibilities and limitations caused by arthritis;
and 2) the personal trajectory and graphic figures that led to a (intention to) change in
goal management behaviour, including using new goal management strategies and clearly
stating one’s own boundaries and limitations. Secondly, the component personfocused
approach covered the role of nurses as trainers and the personal fit of the person-focused
approach. Thirdly, the component social mechanisms included 1) facilitating group processes,
including peer support and bonding; and 2) the interpersonal processes, including social
comparison and modelling. With regard to the second research question about the fidelity
of the intervention, adherence to the protocol by the trainers was high. The trainers differed
in the degree to which they were able to fully apply the intended coaching and supporting
approach to participants. Differences were also found with regard to the psychological
communication skills of the trainers.
The goal management programme was developed to help participants to become aware
of their own goals and preferred reactions to goal blockage, followed by learning other
goal management strategies and practicing these new strategies during the personal
trajectory [17]. In fact, the effective components of the programme as experienced by the
participants in this study correspond to these programme aims. Generally, all components of
the programme and specific exercises were highly valued, although participants’ individual
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preferences differed considerably. This finding advocates the use of various components
(e.g. use of role models, writing exercises, and a combination of group training and an
individual trajectory) to create an intervention that is attractive for a broad audience. The
use of several behaviour change techniques is also supported by recent studies showing
amplifying effects of combinations of behaviour change techniques [42,43].
Some of our findings were confirmed in previous studies, for example, the sharing of
experiences in group interventions and the stimulating effect of the group can make
participants feel understood, increase self-efficacy and foster changes in self-management
behaviour [44,45].The majority of the interviewees in the present study spoke very positively
about their group experience. The diversity of participants in disease duration, age, type of
arthritis, and level of adaptation also promoted upwards and downwards social comparison
[46,47].
With regard to the second key component, the person-focused approach, most participants
were satisfied with the deployment of nurses as trainers. Strengthening the partnership
between patient and health professional was one of the main reasons for this approach.
Participants’ experiences confirmed this intent, as the contact with the nurse during the
programme was assessed as convenient and said to lower the threshold for subsequent
consultations. Furthermore, the results indicated that not all participants were prepared for
the intended collaborative approach. A substantial number of the interviewed participants
had expected to receive practical and medical information although the recruitment
information highlighted the active role of participants. In hindsight, this misunderstanding
might have been anticipated for a number of reasons. Firstly, the structural features of
the healthcare organizations involved were not necessarily prepared or equipped for
self-management and person-centred care. Secondly, there was no specific focus on self-
management support in the clinics where the intervention was given, nor any recent
history of other programmes with similar aims. Underneath this is the culture in which
healthcare providers are seen as experts, while patients are not addressed as experts in
self-management. Although the majority of participants was satisfied with the content of
the programme and its emphasis on personal responsibility afterwards, a few would have
preferred more directive support of care providers. This latter theme can be related to the
passivity of participants or a need for medical paternalism as found in other studies [48].
Some participants seemed to lack the self-confidence that they needed to rely on their own
judgment in daily life self-management. In line with the above mentioned culture, one
participant directly indicated a preference for medical paternalism, similar to the study of
Rogers et al. [49]. These findings highlight that matching the need, stage of change and
experience with self-management of an individual patient is necessary in order to add value
for the individual [15,50].
As the current intervention is aimed at alleviating the impact a chronic disease can have
on the medical, social and psychological domains from the patient’s perspective, it is also
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a relatively new approach for healthcare providers. With regard to the second aim of the
study, which was the fidelity of the intervention, the discrepancy between the traditional
medical approach and the collaborative approach of the intervention became visible. The
results indicate that healthcare providers might need more training and assistance to fully
enable the intended collaborative approach. The recordings of the meetings suggested that
some trainers found it difficult not to be suggestive and directive. This is in line with previous
research that showed that sometimes, unintentionally, nurses’ language and efforts to be
helpful and responsive to patients can impair patients’ independence and engagement [51].
Substantial efforts were made in the supervision during the course of the study to support the
trainers to adopt a non-directive attitude and improve their psychological communication
skills. In retrospect, in addition to specific intervention-related knowledge and skills, the
initial training for the nurses should have included general psychological communication
skills, such as asking open-ended questions and using silences.
Both trainers and participants might need more time to adjust to this different approach
and more support to understand its implications for their roles and responsibilities in the
management of a chronic disease. Moreover, before a care system for chronic conditions can
truly become person-centred, effective, and efficient, the patient, health professionals and
health service all have to assume new roles [16,52].
The strength of this study is its use of a mixed-methods design with information from
the various sources, enabling the three functions of triangulation mentioned by Treharne
and Riggs [53]: exploring convergences, complementarities and dissonances. The meeting
recordings proved useful in revealing dissonant information that was not found in the
interviews. In addition, data was available from all sites, adding to the validity of findings
and the quality of answers to the research aims.
This study has clear implications both for the improvement of the current intervention
as well as for developers of self-management programmes. Firstly, the study has provided
insights into the components that participants consider key and the ingredients of the
intervention that were supportive for these key components. These insights can further
inform intervention development and the application of effective behaviour change
techniques and their operationalization [3]. Also, it has become clear that deploying nurses
for this type of training requires extended training and support in self-management and
a person-centred approach before the nurses are fully adept in leading groups of patients
[54,51].
Furthermore, this analysis provides insight into experiences of participants with regard
to group processes. The participants of Right On Target evaluated the interactive group
meetings as a highly effective key component. Several processes that can occur in groups were
considered important, which can inform developers and facilitators of similar interventions.
Some participants foresaw difficulties in sustaining the behavioural changes achieved in
the training. Barlow et al. [44] suggest a buddy system for enhancing the maintenance of
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behavioural changes post-intervention, which might be a feasible and accessible addition
to this type of intervention. Such additions could be particularly useful for interventions
aimed at strengthening empowerment and self-reliance of patients with a chronic disease,
as patients’ daily challenges mostly occur outside of the healthcare system.
Some limitations of this study have to be discussed in addition to its previously mentioned
strengths. Firstly, only participants who attended at least four meetings were interviewed.
This raises the potential for sampling bias due to potentially different experiences and
views of non-completers. Therefore, future research might also focus on non-completers
and explore reasons for their dropping out. Secondly, the choice of the mixed-methods
design required working with clearly defined research aims; therefore, in-depth analysis
of emerging themes outside the research aims was not appropriate. Thirdly, although
participants and trainers evaluated the goal management training as effective and useful,
a study on the effect should prove this. The current analysis of key components, facilitators
and hindrances to the intervention would help the interpretation of future findings on the
effect of the intervention.
A few previous comparable studies provided useful information on the patient perspective
[44,55]. The present study has added the use of mixed-methods. Little has been written
about how to design and conduct a process evaluation [6], therefore, despite its limitations,
the current study can be seen as an example for multi-method based process evaluations.
Conclusions
This study from a patient-perspective evaluated a holistic goal management intervention
intended to support people with polyarthritis to cope with their disease and its
consequences. One methodological implication of this study is that it showed how data
collected with multiple sources enables triangulation which, in turn, provides value when
evaluating intervention processes. In addition, participants identified key components of
the intervention’s design and content that can inform future intervention development. Our
findings showed that the content, the person-focused approach and the social mechanisms
were seen as key components of the programme by participants. The trainers had a vital role
in facilitating the open and safe atmosphere that helped participants to share experiences
and try out new behaviours.
Self-management is an ongoing process in which healthcare providers are not consistently
involved. Therefore, patients should be confident enough to rely on their own judgment and
need to learn the necessary skills to do so. The goal management programme is intended to
stimulate self-reliance and empowerment of participants to improve their adaptation and
well-being. This study showed that both participants and health professionals are not always
fully prepared for nor at ease with these new roles. This observation might be applicable
for all patients with chronic conditions, in the same way that the principles underlying the
goal management intervention are generally applicable for coping with a chronic disease.
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As patients are confronted with the disease for the rest of their lives, they need to be able to
cope with the consequences and not rely on health professionals for all their daily decisions.
In that light, our work shows that while the new role as expert can be challenging, most
participants were ready for it and just needed some guidance, tools and support.
Acknowledgements
The authors are very grateful to all the participants and trainers in this study. Our gratitude
also goes to all nurses and rheumatologists, including, in particular, the local researchers
and the rheumatology hospital departments of Gelderse Vallei Ziekenhuis (Ede), Medisch
Spectrum Twente (Enschede), St. Elisabeth Ziekenhuis (Tilburg) and Streekziekenhuis
Koningin Beatrix (Winterswijk) for their support and assistance. We also thank psychology
students Hannah Kling, Jana Petermann and Marleen Perdok for their enthusiastic efforts
and Pim Valentijn for his useful comments. This work was financially supported by the
Stichting Reumaonderzoek Twente, a foundation for research in rheumatology.
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43 Michie S, Abraham C, Whittington C, McAteer J, Gupta S (2009) Effective techniques in healthy
eating and physical activity interventions: a meta-regression. Health Psychol 28 (6):690
44 Barlow JH, Bancroft GV, Turner AP (2005) Self-management training for people with chronic disease:
a shared learning experience. Journal of Health Psychology 10 (6):863-872
45 Marks R, Allegrante JP (2005) A review and synthesis of research evidence for self-efficacy-enhancing
interventions for reducing chronic disability: implications for health education practice (part II).
Health Promotion Practice 6 (2):148-156
46 Arigo D, Suls JM, Smyth JM (2014) Social comparisons and chronic illness: research synthesis and
clinical implications. Health Psychology Review 8 (2):154-214
47 Buunk BP, Collins RL, Taylor SE, Van Yperen NW, Dakof GA (1990) The affective consequences of
social comparison: either direction has its ups and downs. J Pers Soc Psychol 59 (6):1238
48 Drolet BC, White CL (2012) Selective paternalism. The virtual mentor: VM 14 (7):582-588
49 Rogers A, Kennedy A, Nelson E, Robinson A (2005) Uncovering the limits of patient-centeredness:
implementing a self-management trial for chronic illness. Qual Health Res 15 (2):224-239
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50 Lawn S, McMillan J, Pulvirenti M (2011) Chronic condition self-management: Expectations of
responsibility. Patient Educ Couns 84 (2):e5-e8. doi:10.1016/j.pec.2010.07.008
51 Lawn S, Delany T, Sweet L, Battersby M, Skinner TC (2014) Control in chronic condition self-care
management: How it occurs in the health worker-client relationship and implications for client
empowerment. J Adv Nurs 70 (2):383-394. doi:10.1111/jan.12203
52 Holman HR, Lorig KR (2004) Patient self-management: A key to effectiveness and efficiency in care
of chronic disease. Public Health Rep 119 (3):239-243. doi:10.1016/j.phr.2004.04.002
53 Treharne GJ, Riggs DW (eds) (2014) Ensuring Quality in Qualitative Research. Qualitative research in
clinical and health psychology. Palgrave Macmillan, London
54 Lake AJ, Staiger PK (2010) Seeking the views of health professionals on translating chronic disease
self-management models into practice. Patient Educ Couns 79 (1):62-68
55 Dures E, Kitchen K, Almeida C, Ambler N, Cliss A, Hammond A, Knops B, Morris M, Swinkels A,
Hewlett S (2012) “They didn’t tell us, they made us work it out ourselves”: Patient perspectives of
a cognitive-behavioral program for rheumatoid arthritis fatigue. Arthritis Care Res 64 (4):494-501.
doi:10.1002/acr.21562
56 Petermann J (2014) Een kwalitatief onderzoek naar afzonderlijke groepsbijeenkomsten van de
cursus ‘Doelbewust!’. Graduate, University Twente, Enschede
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Additional information 1 Topics and objectives of the goal management programme per meeting
Meeting Topic The meeting’s main objectives1 Arthritis in daily life Become aware of the influence of polyarthritis in the different domains of life. 2 Important personal goals Link activities that are threatened by polyarthritis with the associated higher goals. Distinguish between lower order and higher order goals. Discuss the four goal management strategies and their pros and cons and accompanying emotions. 3 Dealing with goals Formulate the first threatened activity for the personal trajectory. Explore the feasibility of goal management strategies for resolving the threatened activity.4 Emotions & Action plan Design action plan for the personal trajectory. Anticipate resistance for change from personal self and social environment.5 Alternative goal Evaluate action plan and the goal management strategy used. Choose management strategy & new activity for personal trajectory and practice alternative goal management Evaluation strategy to solve problems with the particular activity.6 Looking back and ahead Evaluate action plan and used goal management strategies. Consolidate learned skills and competencies. Evaluate progress during programme.
Note. Adapted from Arends et al. [17].
Additional information 2 Interview Scheme
General questions 1 Did the programme meet your expectations?2 What was or were the reason(s) for your participation? 3 Would you have applied for the programme if you had known about its specific content? Why or why not?4 How do you assess the programme’s delivery in a group?Learning objectives 5 According to you, what was the aim of the programme?6 According to you, what were the most important components of the programme?Methodology 7 Whatdidyouthinkofthesetupoftheprogramme?(E.g.duration,numberofmeetings,group/trainer,etc.)8 What did you think of the exercises used in the programme?Effectiveness 9 Are there parts of the programme that you did not like very much?10 Were there other things (apart from the contents of the workbook) that you did not like very much in the programme?11 Was the programme helpful for you? How?12 Are there specific parts or exercises that were helpful to you?13 Are there any exercises or parts that you expect to be helpful to you in the future?
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Additional information 3 Code scheme for recorded meetings
Question Sub question Topic Code2a.i Trainer Approach and interactions between respectful* – disrespectfulrole atmosphere participants patient* – impatient interested* – uninterested make fun – serious frank – restrained interactions between trainer respectful* – disrespectful and participants patient* – impatient interested* – uninterested frank – restrained calm* understanding* suggestive mutual support participants not present motivating each other* appreciation* reassuring* share tips* instructions and structure not at all monitoring by trainers direct instructions compliance to the schedule* address private conversations during the break* trainers emphasizing not at all collaboration with inviting input of participants* participants not authoritarian or dominant*2a.ii Trainer Psychological communication skills showing understanding*role communication summarizing* skills small encouragements* allowing and using silence* continualquestioning/supplementaryquestions* open-ended questions* explaining approach and components of training* correcting* stimulating new behaviours* dividing attention between pay attention to everyone* participants let everyone tell story* let everyone tell experiences, homework, etc.* invite more quiet or shy participants* attention given to needs of not at all participants focus on one participant refer irrelevant questions to the break* ignores the need
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Additional information 3 cont’d
response to away-from-the- ignores the question subject questions answers the question shows understanding and explains purpose of programme2b.Adherence coverageofallcontent yes/no,withthemanualasaguidelinetoprotocol correctsequence yes/no,withthemanualasguideline correctexplanation yes/no,dividedinexplanationofexercisesand questions from participants
Notes: The desired behaviours and skills are indicated by an asterisk (*). Where no preference is specifi ed, the behaviour of the trainer should be an appropriate mix. However, clearly the correct application of behaviour and skills depends on the situation and must be assessed in context. A full version of the coding scheme can be found in Petermann [56]. Sources: Lang and Van der Molen [36]; Miller and Rollnick [41]. 8
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Introduction
This thesis focused on the role that goal-based coping plays for the psychological adaptation
of people with arthritis. People with polyarthritis experience elevated levels of distress and
lower levels of wellbeing compared with the general population [1-3]. These results have
a negative effect on disease symptoms and treatment adherence which influences people’s
quality of life [4-6]. Effective use of goal-based coping is considered to increase adaptation
to a chronic disease and lead to a higher level of psychological health [7-10]. In this thesis,
goal-based coping was studied in its role as a facilitator of adjustment and as a starting
point for the support of persons with arthritis. This thesis was divided into two parts to
address the following research questions:
Part I: What is the relationship between goal management and psychological adaptation
to arthritis?
Part II: What is the effect of a goal management programme on the psychological health
of people with arthritis and mild depressive symptoms?
In Part I, the relationship between four goal management strategies and five outcomes of
psychological health were explored and a domain-specific measurement instrument for goal
management was presented. In Part II, the development and effect of a goal management
programme for persons with arthritis and mild depressive symptoms was discussed. Also,
key components of the programme from the participants’ perspective and its fidelity were
evaluated. In this general discussion, the main findings with regard to the research questions
are summarized. Subsequently, the theoretical and methodological considerations of this
thesis are explored and finally, recommendations for research and practice are given.
Main findings
Part I: What is the relationship between goal management and psychological adaptation to
arthritis?
Symptoms of polyarthritis, such as pain, fatigue and reduced mobility, interfere with
personal goals in all domains of a person’s life [11-14]. Patients, therefore, face the task
of reconciling their threatened goals with their capabilities. Effective use of goal-based
coping is considered to be related to successful adaptation to living with a chronic
disease and better psychological health [7,9,8,10]. In Chapter 2, the relationship between
goal management and psychological adaptation to arthritis was studied. An integrated
model of goal management was presented as a working model that combines four goal
management strategies: goal maintenance, goal adjustment, goal disengagement, and
goal reengagement. Successful psychological adaptation was represented by the absence
of distress (depression and anxiety) and the presence of wellbeing (purpose in life, positive
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affect and satisfaction with social participation). Together these five concepts presented
a broad spectrum of psychological health. Five hierarchical regression analyses revealed
relations between goal management and the indicators of psychological adaptation. In
general, higher levels of goal management strategies related to lower levels of distress and
higher levels of wellbeing. Adjusting goals to personal abilities and circumstances (goal
adjustment) and striving for goals (goal maintenance) proved to be the most beneficial
strategies for achieving psychological health while goal reengagement also related positively
to psychological health. Arthritis-related self-efficacy for symptoms other than pain, known
to be an important mechanism in adaptation to a rheumatic disease, partly mediated the
relationship between the goal management strategies and psychological adaptation.
While this cross-sectional study provided insight into relations between goal-based
coping and psychological health, (inter)relations over time between these concepts were
still unknown. Longitudinal studies of goal management were lacking and cross-sectional
studies typically included only two goal management strategies. Following from the study
described in Chapter 2, a broad repertoire of strategies in the case of goal-interference
was hypothesized to be beneficial for the psychological health of persons with arthritis.
Therefore, in Chapter 3, relations between patterns of goal management tendencies and
psychological health were studied over a one-year period among people with polyarthritis.
Results showed that people could be divided into three groups, each with a different
pattern, based on their levels of four goal management strategies at baseline. The first
pattern ‘Moderate engagement,’ constituted 44.20 % of the sample and was characterized
by a low level of goal maintenance, average reengagement of goals, slightly lower than
average goal adjustment and high goal disengagement. The second pattern – ‘Broad goal
management repertoire’ – represented 34.48 % of the sample. In this pattern, high levels
of goal maintenance, goal adjustment and goal reengagement coexisted with an average
level of goal disengagement. Thirdly, the pattern ‘Holding on’ represented 21.32 % of the
sample and was comprised of a high level of goal maintenance accompanied by low levels of
the other three strategies: goal adjustment, goal disengagement and goal reengagement.
Longitudinal analyses affirmed the hypothesis that having multiple goal management
strategies at one’s disposal is beneficial for psychological health, as people characterized by
the ‘Broad goal management repertoire’ showed significantly higher levels of psychological
health over time. In addition, it was hypothesized that holding on to unattainable goals
may be a source of stress and frustration when an individual lacks the adaptive flexibility
to switch between strategies as necessary. This was supported by the finding that stable
lower levels of psychological health over time were found in persons characterized by the
‘Holding on’ pattern. For people with the ‘Holding on’ pattern, support and guidance to
become familiar with a broad range of strategies and to become more flexible when dealing
with threatened goals might be beneficial in order to increase their psychological health.
Persons with the ‘Moderate engagement’ pattern scored in between both other patterns
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with regard to their levels of psychological health. These persons, despite having a greater
variety of goal management strategies when compared to persons with the ‘Holding on’
pattern, might also profit from additional support to strengthen and deploy the various
strategies.
Symptoms of arthritis interfere with goals in all domains of a person’s life and this has an
impact on the psychological health of people [11-14]. Goal interference might have more
impact depending on the domain and the personal importance assigned to that domain
[15]. For example, one study showed that declines in the ability to engage in recreational
activities and social interactions increased the risk of new depressive symptoms [16].
Following this, it was hypothesized that the preferred goal management strategies of
persons with arthritis differ per domain. Little was known about the choices that people
make when confronted with limitations and a declining ability to perform valued activities
in specific domains. Therefore, in Chapter 4, a measurement method for domain-specific
goal management was developed and evaluated. Eleven hypothetical stories – vignettes –
were developed, in which the main character experiences goal interference in a particular
domain. The vignettes referred to the following three domains: the social domain, leisure
activities and independent functioning. Thirty-one persons with rheumatoid arthritis judged
the situations and the impact of arthritis as described in the vignettes as being realistic and
recognizable. Subsequently, domain-specific goal management was examined in 262 persons
with polyarthritis using the newly developed measurement method. Participants described
options to resolve the goal interference in a subset of the vignettes (one per domain) and
ranked their own solutions on preference. A large majority (90 %) of the solutions could be
categorized either as goal maintenance (32 %), goal adjustment (29 %), goal disengagement
(21 %) or goal reengagement (10 %). Preferences for particular strategies differed per
domain, indicating that patients cope with goal interference differently depending on the
affected domain. Among the domains of independent functioning and leisure activities,
the goal maintenance strategy was preferred followed by the goal adjustment strategy.
By contrast, in the social domain, goal adjustment was the most preferred followed by
goal reengagement. Goal disengagement was the least preferred strategy across the
studied domains. No new or other strategies were found in response to the vignettes,
which indicated that the four strategies of the integrated model of goal management
were exhaustive in response to the vignettes. Also a pattern of strategies emerged in which
persons with arthritis mostly preferred goal maintenance and goal adjustment, while goal
disengagement was consistently the least preferred strategy across domains. Results of this
study emphasized the need for a domain-specific instrument, as the preferred strategy to
cope with goal interference differed across domains. This study showed that the vignettes
can be used to investigate how persons with arthritis cope with goal interference in specific
life domains from a patient’s perspective.
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Part II: What is the effect of a goal management programme on the psychological health of
people with arthritis and mild depressive symptoms?
The results of Part I led to the development of a group programme for goal-based coping that
aimed at increasing psychological health of persons with arthritis. This psycho-educational
programme Right on Target, as described in Chapter 5, was developed from a person-centred
view, an approach which centres around the experienced impact of the disease on a patient’s
life. This is in contrast to traditional self-management programmes that are developed
from a disease-centred or problem-oriented point of view. The person-centred approach
asserts that patients are persons and should not be reduced to their disease alone, and,
furthermore, that their subjectivity and situation within their environment, their strengths,
future plans and rights, should be taken into account [17,18]. Beside this approach, the
group-based programme Right on Target was developed using psychological and behaviour
change techniques that are mainly rooted in learning theory and social cognition theories,
such as the use of problem identification, goal setting, modelling and the evaluation of
behaviour. Two patient partners and a specialized rheumatology nurse participated in
the design process. Underlying the programme is the belief that, while participants know
best how to manage their own situation, they still need a broad behavioural repertoire
and increased self-awareness to make appropriate choices. Therefore, participants in the
programme learned general applicable goal management competencies that are not specific
for predetermined disease problems – as in traditional disease-centred self-management
programmes – but that can be applied to various situations of goal interference in daily life.
The goal management competencies focused on are the four strategies of the integrated
model of goal management (goal maintenance, goal adjustment, goal disengagement,
and goal reengagement), as these were proven to be related to adaptation to polyarthritis
(Chapter 2 and Chapter 3), and found to be exhaustive according to persons with polyarthritis,
as described in Chapter 4. The programme consisted of four weekly and two bi-weekly
group meetings led by a trained nurse, homework exercises and a personal trajectory in
which participants were encouraged to try out several strategies to deal with threatened
personal goals.
Subsequently, a study evaluated the goal management programme Right on Target
concerning its aim to increase goal management competencies and thereby decrease
symptoms of depression and increase wellbeing. Although the study was planned as a
randomized controlled trial (the study design is described in Chapter 5), design changes were
made due to the initially small number of applicants. This resulted in a quasi-experimental
design, in which all eligible participants were assigned to the group that received the
intervention. Eighty-five persons with polyarthritis and mild depressive symptoms were
included. In Chapter 6, the changes in level of depressive and anxiety symptoms, purpose
in life, positive affect and satisfaction with participation were compared between persons
that participated in the programme and persons in a longitudinal observatory study who
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SUMMARY AND DISCUSSION
received the usual care. This reference group consisted of 151 participants from the studies
that are described in Chapters 2 and 3, who were selected with the same criteria as were
applied to the intervention participants. Measurements were at baseline and 6-month
follow-up for both groups and a post-intervention measurement (2 months after baseline
measurement) for the intervention group only. Results showed no significant differences
in changes over time in level of the primary outcome depression, nor secondary outcomes
of anxiety, purpose in life, and satisfaction with participation. However, immediately after
the intervention and at follow-up after 6 months, positive affect had significantly increased
in the intervention group compared to the reference group. Moreover, this increase was
mediated by an increase in goal adjustment, confirming the hypothesis that improving
goal management competencies can increase the emotion-related aspect of wellbeing in
persons with polyarthritis over long periods of time. Among participants, the tendency to
maintain goals decreased and self-efficacy expectations for arthritis symptoms other than
pain increased.
In addition to the effect study, a process evaluation was executed in order to identify key
components of the intervention from the perspective of the participants and to evaluate
the intervention’s fidelity. In this study, described in Chapter 7, 24 in-depth semi-structured
interviews with participants post-intervention and audio recordings of 16 random training
sessions were analysed using a qualitative approach. The interviews with participants were
used to achieve the first aim of the study. From the perspective of participants, three key
components relating to the effect of the programme became evident: the content of
the programme, the person-focused approach and the social mechanisms. The first key
component, content of the programme, included: a) writing exercises, role models, and
mental simulation that led to raised awareness of one’s own behaviour, personal goals,
and possibilities and limitations caused by arthritis; and b) the personal trajectory and
graphic figures that led to an (intention to) change goal management behaviour, including
performing new goal management strategies and stating one’s boundaries and limitations.
The second key component, personfocused approach, covered the role of nurses as trainers
and the personal fit of the person-focused approach. Lastly, the third key component, social
mechanisms, included: a) facilitating group processes, such as peer support and bonding;
and b) interpersonal processes, such as social comparison and modelling.
To reach the second aim – that is, to determine whether the programme was delivered
as intended – the meeting recordings were analysed. The adherence of the trainers to
the protocol was high. Concurrently, trainers appeared to differ in the degree to which
they were able to fully apply the coaching and supporting approach as was intended. The
recordings also revealed that trainers differed in the degree that they mastered psychological
communication skills. From this study, it can be concluded that the effective components
of the programme as experienced by the participants correspond to the programme aims.
Furthermore, the study showed that both trainers and participants are not always fully
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prepared for, nor at ease with, the new roles that a person-focused programme requires.
Nevertheless, this study showed that while patients might find their new role as an ‘expert’
challenging, most were ready to meet that challenge with the aid of additional guidance,
tools and support.
Theoretical considerations
This theoretical discussion is divided into Part I and Part II, with Part I discussing the theoretical
considerations regarding goal management and its role in maintaining the psychological
health in persons with polyarthritis. Part II addresses the theoretical considerations in
relation to the goal management programme Right on Target.
Part I: Considerations of the role of goal management for adaptation
This thesis adds important insights to the scientific knowledge about the role of goal-
based coping for adaptation to a chronic disease. A self-regulatory perspective proved
both useful and meaningful for describing and improving psychological health in persons
with polyarthritis. In Chapter 2, goal-based coping was related to outcomes of distress
and wellbeing. The first longitudinal study into the relation between goal-based coping
and psychological health in people with arthritis revealed three distinct patterns of goal
management and their relationship with psychological health over time (Chapter 3).
Subsequently, a method to study domain-specific goal management was developed,
allowing the investigation of domain-specific preferences for goal management of persons
with arthritis.
Usability of the integrated model of goal management
The integrated model of goal management (IMGM), which is a working model based on
two theories of goal-based coping as discussed in Chapter 1, was applied in this thesis.
The operationalisation of the IMGM in four distinctive goal management strategies has
proven to be face valid. For example, these four strategies were used to categorize the vast
majority of behavioural options suggested by persons with arthritis in response to domain-
specific goal interference (see Chapter 4). Also, certain strategies (goal disengagement and
goal reengagement) were named and valued as preferred behavioural options in some
domains only (also discussed in Chapter 4). Furthermore, the material derived from the
goal management strategies that was used in the goal management programme (i.e. four
illustrations that depict the goal management strategies) received a very positive assessment
by participants (see Chapter 7) and was reported as having been helpful in sustaining
behavioural change. These results highlight the practical value of the IMGM.
Despite the face validity of the model, the interrelations between the strategies need
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SUMMARY AND DISCUSSION
to be considered. Conceptual differences between the two models that were combined
in the IMGM and their associated measurement instruments have hampered conclusions
about the theoretical value of the model. Namely, the first model, the Dual-process Model
[19,20] is defined as two higher level continua (assimilative and accommodative) that both
consist of a range of processes possibly representing lower level strategies. On the other
hand, the second model, the Goal Adjustment Model [21,22] is operationalized as two
defined strategies. Thus, the two models differ in how goal management is described and
the extent to which separate strategies (in particular lower level strategies or processes)
can be distinguished with the used measurement scales. As a result, although the goal
disengagement strategy was hypothesized as a facet of goal adjustment processes in
Chapter 2, the precise relationship could not be determined with the studies performed in
this thesis. The same applies to the goal reengagement strategy; although this strategy was
conceptually considered as a combination of processes stemming from both the continua of
goal maintenance and goal adjustment, these possible relationships could not be explored.
The IMGM did, however, made it possible to study a range of strategies and combinations
of strategies and, therefore, served as a useful working model. To improve the application
of goal-based coping in a chronic disease population, the focus of further research should
be the identification and operationalization of lower level strategies and processes covered
by the accommodative and assimilative continua. After the development of a measurement
method for the lower level strategies and processes, the study of the position of the
strategies goal disengagement and goal reengagement in relation to these continua might
be further explored.
Goal management in relation to psychological health
Results of the longitudinal study into patterns of goal management showed that a broad
repertoire of goal management is beneficial for psychological health. This is in line with
other studies that showed the importance of coping flexibility for psychological health
[10]. In this thesis, coping flexibility was conceptualised as having several strategies at one’s
disposal that can be deployed as required by one’s circumstances and the environment.
Results of this study align with the conclusions of the review of Cheng and colleagues [10]
that a broad repertoire of goal management strategies is related to better psychological
health.
Individual goal management strategies appeared to differ in their relationship with
psychological health. Goal adjustment proved to be the most beneficial strategy for people
with polyarthritis, as higher levels of this strategy were consistently found to be related to
better psychological health. Goal maintenance was also related to psychological health in
the observational studies, although it appears that high levels of goal maintenance must be
combined with high levels of goal adjustment and goal reengagement to be beneficial for
psychological health (Chapter 3). Reengagement in new, feasible goals seems less important
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for persons with polyarthritis, where in other studies this strategy related to less depression,
for example in people with peripheral arterial disease [23]. While higher levels of goal
adjustment were found to relate to a lower impact and severity of fatigue and a higher level
of coping with fatigue in persons with polyarthritis, the strategy of reengagement was not
found to be related to fatigue [24]. Clearly, people must have the capability and sufficient
energy under situational limitations to commit to and exert effort into new goals. These
necessary conditions become apparent in Chapter 3, where people who are characterized
by the ‘Holding on’ pattern had the lowest tendency to pursue new goals, possibly related
to their high disease burden. A higher tendency to disengage from goals related to lower
levels of anxiety, as discussed in Chapter 2, and levels of goal disengagement differed
between the three patterns, as shown in Chapter 3. However, conclusions regarding this
strategy should take into account the consistently low internal reliability of the measure
for goal disengagement across all performed studies. North American and Canadian
studies found the internal consistency to be satisfying [25,26,22]. As discussed in Chapter
2, the low reliability of the scale could be caused by the interpretation of the items of the
disengagement measure, as two items of the scale reflect the reduction of effort to reach
a goal (behaviour) and two items the relinquishment of commitment to a goal (mental
acceptance) [22]. However, this is not a satisfactory explanation. If one assumes that the
inconsistency about the meaning of disengagement caused the low reliability in the Dutch
version of the scale, the reliability of the scale in other languages should also be affected by
the same cause. More research is necessary to develop a scale for goal disengagement that
shows better psychometric indicators across languages and populations. For example, it is
advisable to recheck the translation of the items, but also to add more items to the scale. To
improve the scale’s reliability and better understand the performance of the current items,
future researchers should apply cognitive interview testing to revise the Dutch items or use
item response theory to develop a new or revised questionnaire [27,28].
Switching from holding on to letting go
Of particular interest for future studies is the ‘Holding on’ pattern of goal management
identified in Chapter 3 as having a relationship to a low level of psychological health. Some
of the people characterized by the ‘Holding on’ pattern might be caught in the last phase
of assimilation characterized by compensatory efforts [19]. In this phase, goals and self-
standards no longer match personal capacities and compensatory reserves (reserve capacities
and behaviours that can be deployed for tenacious goal attainment when initial efforts prove
insufficient). Maintained commitment to such goals may result in a feeling of helplessness
and depression. Eventually, lower goal-related control beliefs and experiences of irreversible
loss should set the stage for more accommodative processes. More detailed insight into
lower-level processes which are part of the continua of assimilative and accommodative
coping is needed to study the complex interplay between both continua. Insights into the
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SUMMARY AND DISCUSSION
role that both continua simultaneously play can be increased by developing a measurement
instrument that allows differentiation between the several lower-level processes of the
continua. The development of such an instrument could be informed by single-case research
designs that have an in-depth focus on a small number of persons with arthritis, ideally
following them for an extended period from disease onset. Such a project could clarify the
influence of these processes on a person’s mood and wellbeing. Other studies have shown
the utility of single-case studies for testing theories [29,30].
Domainspecific goal management
This thesis showed the preferences for goal management strategies of persons with arthritis
differed between domains, thereby confirming the relevance and usefulness of domain-
specific measurements of goal-based coping for a chronic disease population. A number
of studies recently conducted provide insight into the utilisation of goal management
strategies in specific situations, such as specific goals, or in certain domains, among diverse
patient populations [31-36]. In addition, the study described in Chapter 4 adds knowledge
about domain-specific goal management of persons with polyarthritis. Four domains that
are influenced by arthritis were identified from the literature and from interviews with
patients. These domains are: work and remunerative employment, leisure and recreation
activities, independent functioning, and family and social relationships. The domain of work
and remunerative employment was excluded from further study due to the diversity of
work status of our research participants. People with polyarthritis preferred certain goal
management strategies over others within a given domain, emphasising the relevance of a
domain-specific measurement. For example, in the vignette study, the goal reengagement
strategy was mentioned in a quarter of the responses to the vignette that described a
problem in the social domain, while this strategy was rarely mentioned in response to the
vignettes concerning problems in other domains.
Domain-specific or contextual goal management has never been measured during
intervention studies – and the studies in this thesis are no exception – although such a
study could provide more insight into effective strategy use. Unfortunately, a practical
measurement tool that would enable us to monitor the management of one particular goal
of a participant is lacking. This lack might have influenced the ability to detect changes and
effects of goal management on the effect of the programme Right on Target (see Chapter
6). Specific goal management strategies might be more effective when applied for goals in
one domain than in another domain.
Comparison of theories of goalbased coping and of selfefficacy
In this thesis, self-efficacy was measured repeatedly together with goal-based coping. Both
concepts were compared in order to explore their value for the psychological health of people
with arthritis. The concept of self-efficacy is derived from social cognitive theory, where self-
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efficacy beliefs influence goal-related behaviour through outcome expectancies and social
cultural factors [37]. The application of the concept of self-efficacy is often restricted to
health-related goals, for example, healthy eating habits, maintaining or achieving a healthy
weight and managing disease symptoms. In general, outcomes for psychological health can
be identical regardless of which model is used to explain and guide behaviour. However,
when the pursuit of a major personal goal becomes threatened or interferes with health-
related goals, people can turn to goal-based coping, making counterintuitive choices which
can result in an increased level of psychological health. For example, when someone finds
that his or her profession becomes increasingly exhausting to perform due to a chronic
condition, leaving the job or reducing their work hours could be designated as the healthiest
option. However, when the job touches upon core-values of the self and self-identity, his or
her decision to keep working will probably be based on balancing the gain (e.g. sense of
meaning to life) and costs (e.g. stress and fatigue). Goal-based coping takes into account the
entire person and not only the goals that are directly related to the health domain. Aiming
to be comprehensive, realistic and corresponding to the real life of a person with a chronic
disease, goal-based coping should be used to study wellbeing and distress in persons with
chronic disease. Measurement of self-efficacy can be added where appropriate, for example,
researchers might measure arthritis-related self-efficacy when studying health-related goals.
Part II: Considerations of the goal management programme Right on Target
The prevalence of anxiety and depression for people with polyarthritis described in this
thesis correspond with other research that showed that at least 20 % of the people with
rheumatoid arthritis suffer heightened levels of anxiety and depression [38,39,3,40].
Moreover, this thesis states that the prevalence of distress in people with inflammatory
rheumatic diseases other than rheumatoid arthritis also deserves attention, where most
studies focus only on the latter. For all people with rheumatic diseases, targeted interventions
for increasing psychosocial health are needed [41]. Furthermore, to support resilience and
thereby increase psychological health, a shift from the leading disease-specific paradigm
to a person-focused holistic approach is also needed (Chapter 5). Consequently, goal-based
coping was used to design an innovative person-focused intervention called Right on
Target. The value of the goal management programme Right on Target for the wellbeing
of persons with arthritis (Chapter 6) is discussed in the next section. From the perspective of
participants, the application of goal-based coping has proven to be a useful and effective
approach (Chapter 7).
Goal management programme Right on Target
The goal management programme Right on Target was designed to decrease distress and
increase wellbeing by helping participants to learn and improve their goal management
competencies. The hypothesis was that the ability to use four goal management strategies
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and choose between them depending on the situation would improve the psychological
health of participants with polyarthritis and mild depressive symptoms. Results of this quasi-
experimental study showed that the tendency to adjust goals increased in participants,
while their tendency to maintain goals decreased. In accordance with other studies, the
strategy of adjusting goals proved to be the most valuable for psychological health [42,43].
Namely, the increase of the level of goal adjustment mediated an improvement in positive
affect over time in the group that participated in Right on Target.
The study did not show an effect of the programme on the other concepts of psychological
health that were included as outcomes: depressive and anxiety symptoms, purpose in life
and satisfaction with social participation. Although, with the current knowledge, no aspect
can be designated as the cause for this lack of effect, several reasons can be hypothesized.
The study design might not have been appropriate to detect a change in the primary and
secondary outcomes. For example, as discussed in Chapter 6, changes in these outcomes
might need more time to become evident than a change in positive affect and, therefore,
might be detected after a longer follow-up. Another possibility is that the changes in goal
management strategies do not relate to the outcomes of distress and wellbeing. However,
this is unlikely since the observational studies in Chapter 2 and 3 showed a clear relationship
between the goal management strategies and the outcomes of distress and wellbeing.
These observational findings imply that the choices made in the design of the study might
have influenced the ability to detect changes in the primary outcome. Although the Hospital
Anxiety and Depression Scale (HADS) is considered to be a valid screening instrument
for depression in persons with rheumatic diseases [44-46], few studies exist that report a
moderate responsiveness of the scale for changes over time [45,47,48]. In addition, the
applied inclusion criterion of at least a score of four on the depression subscale of the HADS
and exclusion criterion of ≥ 22 on the HADS (considered indicative of severe psychological
distress) may have caused floor and ceiling effects that reduced the chances in this study to
detect an effect on the primary outcome measure.
Findings in Chapter 7 may shed more light on the limited effect in most of the outcomes.
Participants differed in their preferences for exercises and other elements of the programme,
such as the duration of six meetings. An exercise such as the goal hierarchy pyramid (used
for linking threatened activities to associated goals) might have been too abstract for some
participants, as was mentioned by one interview participant. The participants differed also
in their preferences for writing exercises or exercises related to role models, and in their
appreciation of the technique of mental simulation. As concluded in Chapter 6, the use of
various components created an intervention that is attractive for a broad audience, but for
some participants this may have led to a low intensity of some of the effective elements.
Furthermore, some participants felt that the duration of the programme was not sufficient
to internalise their newly learned behaviours or address their problems. This raises the
question whether the programme contained sufficient support for participants to become
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more flexible in their goal management and offered sufficient guidance on the choice of
the right strategy at the right moment. Booster meetings or a buddy system might enhance
the implementation of the newly learned behaviour [49].
While the trainers accurately followed the training protocol, their ability to apply the
intended coaching and supporting approach to participants differed as well as their
competencies with regard to psychological communication skills. As a result, some trainers
may have appeared as more suggestive and directive than intended [cf., 50] and may have
negatively influenced the benefits that individual participants experienced. A non-directive
attitude of the trainer was named as a key asset of the programme as discussed in Chapter
5, but it could also be an obstacle as the programme possibly asks health professionals to
use competencies that they are not familiar with in their daily practice. Combining this
observation with results of other studies, health professionals, including nurses, need
additional training to ensure patients’ self-management competencies can be maintained
and fostered and to fully support the patient’s role as an expert in clinical settings [cf.,
51,52].
Another related finding from the process evaluation as described in Chapter 7 was that
patients may need extra support to take full advantage of the program’s collaborative
approach. For example, a substantial number of participants had expectations at the start of
the programme that did not align with the programme’s set-up. Though their expectations
differed from their actual experience, participants highly valued the focus and content
of the programme after their participation. This underscores the importance of language
in recruitment (e.g. ‘training’ or ‘course’ rather than ‘class’) [53]. But more importantly, it
implies that to benefit fully from person-centred programmes, patients may need extra
support to make the transition from relying on medical experts to being in equal partnership
in conversation and, ultimately, to making independent decisions in their day-to-day lives.
Role of goal management in the care relationship
In a collaborative person-focused care model, goal management can help patient and health
professional to discuss a patient’s goals (both in life and in relationship to his or her health)
and to set goals that are considered to be the most important [54]. A considerable paradigm
shift is needed to accomplish this in the upcoming years [17]. The empowerment of patients
can enable such a paradigm shift [55,56]. Some patients already have achieved a certain
degree of independent decision-making by using the abundance of health information
available on the internet. Nevertheless, the health professional plays an important role in
changing the approach of persons with chronic diseases [55,57]. The core of every effective
treatment is to see the patient as an equal partner in care planning and to focus on problems,
health concerns, and goals as defined by the patient [58,59]. This implies a switch from self-
management as a support for disease management, to self-management as a support for
the overall health of the individual with a chronic disease. The health professional provides
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information about the disease and disease management and helps the patient to make
informed choices among the available strategies enabling the patient to deal with his or
her goals [60]. Interventions departing from goal-based coping such as Right on Target can
support patients to define their important and threatened personal goals and teach them
effective problem solving skills. Moreover, eHealth and medical technology hold a promise
for the development of information technology solutions that stimulate and enable person-
centred care [18]. Right on Target could, for example, help persons with arthritis to identify
domains and aspects of life in which improvement is desired. Instead of asking patients with
a chronic disease “What is the matter?”, a person-focused perspective encourages health
professionals to ask patients, “What matters the most?”
Methodological considerations
This section addresses the general methodological considerations of this thesis and provides
suggestions for future studies. The studies in this thesis focus on a relatively unexplored area,
namely the role of goal-based coping in successful psychological adaptation to polyarthritis.
The empirical studies are built on a solid theoretical basis regarding goal-based coping,
using two complementary theories of goal management. Also, both domain-specific and
general tendencies of goal management received attention in this thesis, hereby combining
two perspectives on goal-based coping [cf. 10]. The measurement of goal management
is not without challenges. This thesis provides new insights and a new method to study
preferences for domain-specific goal management, however, it also evokes new questions
that remain unanswered. Other approaches of studying goal management will have to
extend the knowledge gained in this thesis. For example, single-case research designs that
follow one person for an extended period can provide external validated information on an
individual level when focusing on specific goals, domains, differences in goal management
strategy use, and on the influence on wellbeing. Such in-depth knowledge would help
to interpret and to explain cross-sectional and longitudinal results that are obtained by
applying questionnaires that measure general tendencies of goal management. These
methods, however, have their own disadvantages such as limited generalizability of
individual trajectories of goal management and adaptation.
Measuring multiple indicators of distress and wellbeing has proven to be a key-point of
the studies in this thesis. Until now, self-management programmes did not show an increase
in positive outcomes such as positive affect [61]. Also, in many cases positive outcomes are
overlooked. This thesis confirms that positive outcomes must be included when studying
(interventions for improving) adaptation and resilience [62] since they are part of a persons’
health [63] and can be improved by an intervention aimed at increasing adaptation.
A general limitation of this study relates to the exclusive use of self-reporting questionnaires
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in the studies described in Chapters 2, 3 and 6 and the lack of clinical data, except disease
diagnosis that was retrieved from the hospital registry system. Inherent drawbacks of self-
reporting questionnaires are socially-desirable answers and response bias, which may have
influenced the answers given.
Another limitation that concerns the relationship between goal management and
self-efficacy is that mediation analysis does not imply a causal relationship. The precise
relationship between the concepts remains unclear due to the cross-sectional character of
the study in Chapter 2. This relationship deserves further study.
The studies described in Chapters 2, 3 and 4 included patients from the Arthritis Centre
Twente. Strengths of these samples are their size, the diverse representation of persons
with polyarthritis, and the low attrition rate over time. Despite the fact that the sample
corresponds to samples used in research conducted in other hospitals, the origin (i.e. one
region in The Netherlands) should be kept in mind when generalizing the results. Similarly,
but to a lesser extent, the studies described in Chapter 6 and 7 included participants that were
recruited mainly through four clinics and patient organizations located in the Southeast and
East regions of The Netherlands.
A randomised controlled trial (RCT) is considered the gold standard for the evaluation of
an intervention both in the fields of health psychology and medicine. From that perspective,
one clear limitation is the impossibility to study the effect of the goal management
programme Right on Target using a RCT design. This thesis, however, can provide a new
light on this perspective. The goal management programme is a complex intervention made
up of several potentially active components, challenging any evaluation more than a single
intervention such as administering a drug [64]. Scholars have raised the question whether a
RCT is the appropriate study design to evaluate a complex health intervention such as Right
on Target [65,66]. The applied quasi-experimental design and the appointment of nurses
as trainers have provided helpful information in case of further application because the
study actually resembled a real implementation. Also, the mixed-method design applied,
as discussed in Chapter 7, provided better insight into this matter, because it considers
the environment in which the intervention operates (i.e. a secondary care institution) and
provides insights into the perspective of participants as well as trainers. These observations
led to the conclusion that an intervention cannot be considered separate from the context
in which it is implemented, while an RCT demands a highly controlled environment. Future
studies could take advantage of new fields of science such as improvement science – which
aims to design pragmatic trials that make use of rigorous and credible assessment methods
while also justifying the often complicated and heterogeneous real-life situations [67]. In
the development of methods for evaluating a complex intervention such as Right on Target,
which cannot be seen in isolation from its context, uncontrollability should be acknowledged
and accounted for [68,67].
In addition to the limitations concerning the lack of randomization and a cost-effectiveness
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evaluation as discussed in Chapter 6, the reference group in the quasi-experimental study
emanated from an observational longitudinal study and received the usual care. In contrast
to a waiting-list control condition, participants in the observational study did not expect to
join the programme after the study period, making this quasi-experimental design a more
naturalistic comparison. However, there was no comparison with another group programme
to control for non-specific effects such as attention and social interaction.
The combination of an effect study and a process evaluation of the goal management
programme proved to be highly valuable. The process evaluation provided a better
understanding of the barriers and obstacles that this type of programme can experience
[69,65] and showed the effective ingredients of the programme as perceived by the
participants. Designers of future programmes must take into account the knowledge and
experience that patients, professionals and organizations have with person-focused care
before designing and implementing an intervention. Health psychology might benefit from
adopting the approach and the pragmatic methods stemming from improvement science to
study interventions in their context and to enhance the external validity of the knowledge
gained in local projects [67].
Implications for research and practice
Implications for studying goal-based coping can be summarized and extended as follows.
Several results in this thesis call for more in-depth research into the processes involved in
goal-based coping and adaptation to a chronic disease. The application of goal-based coping
in a chronic disease population can be optimized through the operationalization of lower
order strategies which are covered by the accommodative and assimilative continua [19]. This
can, for example, result in a goal-specific measurement tool, a more general questionnaire
measuring a broad spectre of strategies, or a diary method for the measurement of day-
to-day goal management processes. Another example would be a measurement tool to
distinguish between ‘healthy’ and ‘unhealthy’ goal maintenance by discriminating between
relatively comfortable goal pursuing processes and more stressful compensatory efforts,
where pursuing a particular goal asks for the increased use of compensatory reserves.
One clear recommendation for the development and evaluation of interventions is the
adoption of the improvement science approach where pragmatic trials are designed using
rigorous and credible assessment methods while taking into account complicated and
heterogeneous real-life situations [67]. The studies executed with regard to Right on Target
meet a couple of criteria that are reflected in improvement science, such as: a solid base in
theory; a collaboration between researchers and health professionals; and being conducted
in a multicentre study, which increased generalizability. Also recommended is the use of
mixed methods, such as the combination of an effect study and a process evaluation as
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was applied in this thesis. Especially in complex interventions, the use of qualitative and
quantitative methods can reveal what would not have come to the surface by using one
method alone [69].
This thesis mainly focused on the micro-level of the patient with a chronic disease.
Applying the person-centred care approach in practice will imply that the patient becomes
the principal caregiver; she or he is responsible for daily management, change of behaviour,
emotional adjustments and accurate reporting of the development and pace of the
disease [51]. Current transitions in health care point to a change in accountability. Where
traditionally politicians, managers and health professionals were once responsible, health
care policymakers are now recognizing the need to extend accountability to patients to give
them control over decisions regarding their own health [70]. Self-management programmes
developed from a person-centred approach such as Right on Target can be applied to support
people to develop the needed knowledge, skills and confidence as well as to identify goals
from the persons’ perspective [54]. During consultations with patients, health professionals
need to determine which patients (currently) cannot or do not wish to (fully) play an active,
empowered role in decisions regarding their own health care [71,56].
Given the importance of psychological health for both physical health and overall
wellbeing and the considerable levels of distress found in the populations studied in this
thesis, chronic disease care should also be engaged in the psychological health of its patients.
A clear practical implication is the use of the four goal management strategies for discussing
behavioural options with patients. The four strategies can be used in interventions and in
routine consultations by health professionals such as nurses to stimulate flexible adaptation.
Chapter 7 showed that achieving a truly collaborative relationship between health
professionals and patients still has to overcome significant obstacles. At the meso-
organisational level, it can be questioned whether health professionals are equipped to
promote health by psychosocial means [72]. Adequate and timely screening for distress
and lower wellbeing and raising the topic of psychological health in routine consultations,
however, are prerequisites that can easily be met. Ideally, clearly protocoled programmes
such as Right on Target may be offered to a defined population, e.g. persons with heightened
levels of distress due to goal interference caused by arthritis. It might also be appropriate
to provide goal-based programmes such as Right on Target in (collaboration with) primary
care, as the person-focused perspective is one of the key characteristics of primary care
[73]. The ‘Happiness Route’ programme is another example of a wellbeing intervention that
focused on the personal goals of participants, specifically those people experiencing social
isolation and health problems and a low socio-economic status [74]. Information technology
solutions can support person-focused care at the meso-level, while eHealth and medical
technology can be applied to improve wellbeing, quality and satisfaction with care at the
individual level [18]. EHealth interventions applying supportive and motivating technologies
can enhance feelings of agency and effective self-management of people with chronic
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SUMMARY AND DISCUSSION
diseases. Insights from the fields of health, psychology, wellbeing and technology should be
combined to develop effective person-focused interventions.
This thesis indicated that changes and programmes implemented solely on the micro-
level might not have the impact promised by a person-centred approach. In line with this,
the literature states that a whole system approach is needed to create a person-centred
care system that will achieve effectiveness and efficiency [73,75-79]. At the macro-policy
level, health services have a key role in providing continuity and integration of care, thereby
organizing and (financially) supporting person-focused care on all levels [51]. Services might
need to be organized differently in order to give patients the needed support to self-
manage [80,17]. Implementing person-focused care requires other incentives and policies
than current disease management programmes. In the Dutch situation, health insurers and
local municipalities can use the new concept of positive health [81,63] to apply a person-
centred approach in their arrangements with care providers.
Conclusion
The studies presented in this thesis are grounded in theory and show the starting points
for improving psychological health in persons with polyarthritis. Goal-based coping and, in
particular, the ability to flexibly adjust goals has proven to be valuable, both conceptually
and practically, for the psychological health of this patient group. Increasing the ability of
persons with arthritis to adjust their goals during participation in the programme Right on
Target related to stable and higher positive mood after the programme. The results underline
the value of goal-based coping for the psychological health of persons with arthritis and
provide clear starting points for further research and practical implications to implement
changes. To improve the psychological health of persons with arthritis, the question that
needs to be asked is not only “What is the matter?” but perhaps more importantly, “What
matters to you?”
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Dutch summary |
Samenvatting
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DUTCH SUMMARY | SAMENVATTING
Gewrichtsontstekingsreuma en omgaan met persoonlijke doelen
Onder de noemer gewrichtsontstekingsreuma vallen verschillende chronische gewrichtsont-
stekingen aan het bewegingsapparaat die alle gekenmerkt worden door immunologische
betrokkenheid. Een merendeel van de aandoeningen wordt gekarakteriseerd door periodes
van plotseling verhoogde ziekteactiviteit, waarbij de ontsteking en zwelling van gewrich-
ten verergeren. Deze symptomen beïnvloeden, samen met andere symptomen zoals pijn,
vermoeidheid, een verminderd fysiek functioneren, vergroeiingen, psychische stress en een
lagere kwaliteit van leven, het dagelijks leven van patiënten. Het streven naar persoonlijke
doelen kan hierdoor bemoeilijkt worden. Mensen met gewrichtsontstekingsreuma ervaren
problemen met doelen in verschillende domeinen van het leven, bijvoorbeeld bij hun rol in
de familie, werk, sociaal leven of in het dagelijks functioneren. Het streven naar en bereiken
van persoonlijke doelen is voor het welbevinden belangrijk, omdat doelen het leven zin en
structuur geven.
Volgens zelfregulatiemodellen is menselijk gedrag doelgericht en heeft het falen of sla-
gen van een doel invloed op de stemming van een persoon. Dit betekent dat mensen die
moeite hebben met de gevolgen van gewrichtsontstekingsreuma in het dagelijks leven niet
alleen een verminderde lichamelijke gezondheid, maar ook een verminderde psychische ge-
zondheid kunnen ervaren. Voor het streven naar doelen en het omgaan met de discrepantie
tussen een doel en de werkelijke situatie kunnen verschillende strategieën ingezet worden;
zogeheten doelmanagementstrategieën. Deze doelmanagementstrategieën worden inge-
zet om de verschillen tussen een gewenste en een feitelijke situatie te verkleinen. Mensen
met een chronische aandoening gebruiken deze strategieën bij het omgaan met een situ-
atie waarin doelen moeilijker te bereiken of onbereikbaar zijn geworden.
In het geïntegreerde model van doelmanagement (integrated model of goal management,
IMGM) zijn vier doelmanagementstrategieën gecombineerd, namelijk: a) het volhouden of
blijven nastreven van een doel, b) het bijstellen van een doel, c) het loslaten van een doel,
en d) het zoeken naar een nieuw doel. Effectief omgaan met persoonlijke doelen kan de
aanpassing aan een chronische ziekte bevorderen en hierdoor de psychische gezondheid
vergroten. Belangrijk voor het behouden van een betekenisvol toekomstperspectief zijn
het herkennen van bedreigde doelen, het optimaal toepassen van manieren om met de
gewijzigde situatie om te gaan (doelmanagementstrategieën) en uiteindelijk het nastreven
van nieuwe, waardevolle doelen. De psychische gezondheid is in dit proefschrift aan de hand
van vijf indicatoren onderzocht, namelijk: depressieve symptomen, angstige symptomen, de
ervaring van een zinvol leven, positieve emoties en de tevredenheid met sociale participatie.
Tezamen geven deze vijf indicatoren een multidimensionaal beeld van de aanpassing aan
gewrichtsontstekingsreuma.
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DUTCH SUMMARY | SAMENVATTING
Deel 1: De relatie tussen doelmanagement en psychische aanpassing aan
gewrichtsontstekingsreuma
In hoofdstuk 2 en hoofdstuk 3 van dit proefschrift is aangetoond dat doelmanagement
gerelateerd is aan de indicatoren van aanpassing aan gewrichtsontstekingsreuma. Het aan
passen van doelen bleek de gunstigste strategie voor mensen met gewrichtsontstekings-
reuma; hoge niveaus van deze strategie waren gerelateerd aan positieve scores op alle vijf
hierboven genoemde indicatoren van psychische gezondheid. Ook een sterkere preferentie
voor de strategie doelen vasthouden was gerelateerd aan minder depressieve symptomen,
een hogere ervaring van een zinvol leven en meer positieve emoties. Een grotere neiging
om nieuwe doelen te zoeken was gerelateerd aan minder depressieve symptomen en een
hogere tevredenheid met participatie en ervaring van een zinvol leven. Deze strategie bleek
minder belangrijk voor de psychische gezondheid in onze studies dan in eerder onderzoek
onder mensen met chronische aandoeningen. Vanzelfsprekend moeten mensen wel kun-
nen beschikken over voldoende mogelijkheden en energie om zich met nieuwe doelen te
kunnen bezighouden. Een hogere neiging om doelen los te laten bleek gerelateerd aan
lagere niveaus van angst, deze strategie was niet gerelateerd aan de andere indicatoren van
psychische gezondheid.
Behalve relaties tussen individuele strategieën van doelmanagement en psychische ge-
zondheid, zijn ook combinaties van meerdere strategieën onderzocht. In Hoofdstuk 3 zijn
de resultaten van de eerste longitudinale studie naar relaties tussen doelmanagement
en psychische gezondheid beschreven. In deze studie bleek het mogelijk mensen met ge-
wrichtsontstekingsreuma in drie groepen in te delen volgens de niveaus van de vier doel-
managementstrategieën. De drie groepen verschilden gedurende een jaar in de mate van
psychische gezondheid. Een breed doelmanagement repertoire (hoge niveaus van doelen
vasthouden, doelen aanpassen en nieuwe doelen zoeken en gemiddeld niveau van doe-
len loslaten) bleek gerelateerd aan een goede psychische gezondheid. Deze uitkomst vult
eerder onderzoek aan waarin flexibiliteit in het omgaan met problemen gerelateerd was
aan een betere psychische gezondheid. De groep die gekenmerkt werd door een sterke
preferentie voor vasthouden aan doelen gecombineerd met lage scores op de drie andere
strategieën, had de laagste psychische gezondheid. In combinatie met de bevindingen in
Hoofdstuk 2 betekenen deze resultaten dat een hoog niveau van doelen vasthouden samen
moet gaan met hoge niveaus van doelen aanpassen en nieuwe doelen zoeken om een gun-
stig effect op de psychische gezondheid te hebben. Dit betekent dat het voor de psychische
gezondheid belangrijk is te beschikken over een breed doelmanagement repertoire.
In hoofdstuk 4 is een meetmethode voor domein-specifiek doelmanagement ontwikkeld.
Met dit instrument kunnen de voorkeuren voor doelmanagement in verschillende
domeinen, zoals de domeinen familierol, werk, sociaal leven of het dagelijks functioneren,
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DUTCH SUMMARY | SAMENVATTING
in kaart worden gebracht bij mensen met gewrichtsontstekingsreuma. Deze studie toont
aan dat de voorkeur voor doelmanagementstrategieën verschilt per domein en dat de
vier doelmanagementstrategieën herkenbaar zijn en toegepast worden door mensen met
gewrichtsontstekingsreuma. Deze bevindingen onderstrepen de praktische waarde van het
IMGM. Verder laat dit hoofdstuk zien dat het domein-specifiek meten van doelmanagement
nuttig en relevant is bij mensen met gewrichtsontstekingsreuma.
Deel 2: Het effect van een doelmanagementprogramma op de psychische gezondheid van
mensen met gewrichtsontstekingsreuma en milde depressieve klachten.
De hiervoor besproken resultaten hebben geleid tot de ontwikkeling van een psycho-
educatief groepsprogramma voor mensen met gewrichtsontstekingsreuma met als doel het
verbeteren van de psychische gezondheid. In dit programma ‘Doelbewust!’ (‘Right on Target’)
staat het omgaan met bedreigde doelen centraal. In hoofdstuk 5 is de ontwikkeling van
het programma beschreven. Bij de ontwikkeling is gebruik gemaakt van een mensgerichte
benadering en zijn psychologische methoden en gedragsveranderingstechnieken toegepast
uit leer- en sociale cognitietheorieën. In het quasi-experimentele onderzoek dat beschreven
is in hoofdstuk 6 bleken mensen die Doelbewust! gevolgd hebben geen verbetering te
tonen op de primaire uitkomstmaat depressieve klachten en drie secundaire uitkomstmaten.
De deelnemers van Doelbewust! verbeterden wel op de uitkomstmaat positieve emoties
voor de duur van de follow-up. Deze verbetering werd bovendien gemedieerd door een
stijging in de strategie ‘doelen aanpassen’ bij deze groep mensen. Hoofdstuk 7 beschrijft
een procesevaluatie van Doelbewust! waarin een mixedmethod is toegepast. Doel van
deze studie was de identificatie van de werkzame onderdelen van het programma volgens
de deelnemers en een evaluatie van de uitvoering van het programma Doelbewust!.
Deelnemers noemden de inhoud van het programma, de mensgerichte benadering en de
sociale processen die plaatsvonden tijdens het programma, als werkzame onderdelen. De
naleving van het protocol door de trainers was hoog, wel werden er verschillen gevonden
in de mate waarin de beoogde coachende benadering werd toegepast en in het niveau
van psychologische communicatievaardigheden. Conclusie van de procesevaluatie is dat
deelnemers en trainers nog niet volledig voorbereid zijn noch zich altijd thuis voelen bij
de rol die het programma van hen vraagt. Aan de andere kant laat deze studie zien dat,
ondanks dat de nieuwe rol als ‘expert’ op het gebied van de eigen gezondheid uitdagend
kan zijn voor deelnemers, het merendeel klaar is om deze rol op te pakken en enkel enige
begeleiding, hulpmiddelen en ondersteuning nodig heeft.
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DUTCH SUMMARY | SAMENVATTING
Implicaties van het proefschrift
Gezien het belang van psychische gezondheid voor de algehele gezondheid en de aanzien-
lijke niveaus van psychisch lijden in de populaties die bestudeerd zijn in dit proefschrift, is het
duidelijk dat er bij de zorg voor chronisch zieken aandacht moet zijn voor de psychische ge-
zondheid. Aandacht voor persoonlijke (bedreigde) doelen is hierbij een eerste aanknopings-
punt. Ook adequate en tijdige screening op psychische problemen en laag welbevinden en
het ter sprake brengen van de psychische gezondheid in routine consulten zijn manieren om
de algehele gezondheid te verbeteren. Een duidelijke implicatie van dit proefschrift voor de
praktijk is dat het programma Doelbewust! mensen kan ondersteunen bij het ontwikkelen
van kennis, vaardigheden en zelfvertrouwen, het identificeren van passende persoonlijke
doelen en het ontwikkelen van een breed doelmanagement repertoire. Ook is gebleken
dat een deel van de mensen met gewrichtsontstekingsreuma meer ondersteuning nodig
heeft om volledig te kunnen profiteren van de benadering van Doelbewust!. Verder kun-
nen zorgverleners tijdens een consult bespreekbaar maken in welke mate een individuele
patiënt een actieve rol wil en kan spelen bij beslissingen rondom zijn of haar eigen zorg. Om
toekomstbestendige effectieve interventies gericht op het omgaan met persoonlijke doelen
te ontwikkelen, moeten inzichten vanuit het medische domein, psychologische domein en
het domein welbevinden samengebracht worden met technologische ontwikkelingen.
Conclusie
De studies in dit proefschrift zijn verankerd in de theorie en laten startpunten zien voor
het verbeteren van de psychische gezondheid van mensen met gewrichtsontstekingsreuma.
Doelmanagement en in het bijzonder het vermogen om flexibel doelen aan te passen heeft
zijn praktische en klinische waarde bewezen voor de psychische gezondheid van mensen
met gewrichtsontstekingsreuma. Een toename van het vermogen om doelen aan te passen
van deelnemers aan Doelbewust! leidde tot een stabiele verbetering in positieve emoties.
Deze resultaten onderstrepen de toegevoegde waarde van doelmanagementprogramma’s
voor de psychische gezondheid en geven duidelijke handvatten voor vervolgonderzoek. Om
de psychische gezondheid van mensen met gewrichtsontstekingsreuma te verbeteren, dient
binnen de dagelijkse zorgpraktijk behalve de vraag ‘What is the matter?’, ook te worden
gevraagd, ‘What matters to you?’
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Acknowledgements |
Dankwoord
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ACKNOWLEDGEMENTS | DANKWOORD
Een nieuwe periode van mijn leven brak aan toen ik verhuisde van het Hoge Noorden naar
het Verre Oosten om te beginnen aan een promotieonderzoek. Een leerzame tijd brak aan
en veel mensen hebben mij bijgestaan op persoonlijk en professioneel vlak. Bij dezen wil ik
iedereen bedanken die direct of indirect heeft bijgedragen aan de voltooiing van dit proef-
schrift. Zonder jullie steun en toeverlaat was het niet mogelijk geweest en een stuk minder
leuk. Graag wil ik van de gelegenheid gebruik maken om een aantal mensen persoonlijk te
bedanken.
Allereerst Mart van de Laar, mijn promotor. Mart, als reumatoloog heb jij met je klinische
blik bijgedragen aan mijn onderzoek. Jij hebt de grote lijn in het oog gehouden. Op de mo-
menten dat het erom ging reageerde je snel en je hebt mij ondersteund daar waar nodig.
Ten eerste door mij het vertrouwen en de gelegenheid te geven met dit promotieonderzoek
te starten, maar ook door met mij honderden patiëntendossiers door te nemen en natuur-
lijk het zetten van ontelbare handtekeningen. Veel dank hiervoor. Erik Taal, als begeleider
ben jij nauw betrokken geweest bij mijn onderzoek. Jouw deur stond en staat altijd open.
Jij las met veel aandacht de concepten en discussieerde over de opzet en de uitvoering van
het onderzoek met mij. Ik herinner me de zomer waarin we samen hard hebben gewerkt in
een bijna verlaten Cubicus tot onze inter-rater betrouwbaarheid voldoende was. Ondanks
alle energie en tijd die andere zaken in je leven van je vroegen, heb je altijd tijd voor mijn
vragen gemaakt. Dit waardeer ik bijzonder. Christina Bode, mijn dagelijks begeleider, onze
gesprekken waren niet alleen academische verhandelingen, maar er was ook ruim tijd voor
generatie- of emancipatievraagstukken. Ik heb deze discussies als zeer waardevol ervaren.
Bovendien heb ik me altijd gesteund gevoeld door je. Dank voor je grote betrokkenheid.
Je hebt de details altijd in het oog gehouden, zelfs onder de douche hield het je bezig. Je
kritische blik heeft zeker de kwaliteit van dit proefschrift verbeterd.
Een groot woord van dank gaat ook uit naar alle mensen die bij één van de onderzoeken
betrokken zijn geweest als respondent of patiënt. Zonder deelnemers was dit proefschrift
er niet gekomen. In het bijzonder wil ik de mensen noemen die tijdens interviews hun per-
soonlijke verhaal met mij hebben gedeeld. Daarnaast een speciaal woord voor dank aan de
drie deelnemers aan de pilot van ‘Doelbewust!’. Jullie openheid en betrokkenheid, maar
ook het enthousiasme om deel te nemen motiveerde mij en gaf mij een belangrijke inkijk in
het leven van iemand met reuma. Ook de deelnemers aan ‘Doelbewust!’ en de honderden
mensen die vragenlijst na vragenlijst hebben ingevuld, wil ik bijzonder bedanken.
De Stichting ReumaOnderzoek Twente dank ik voor de financiële steun die dit promotie-
onderzoek mogelijk heeft gemaakt.
Leden van de promotiecommissie, prof. Rinie Geenen, dr. Moniek van Hout, prof. Adelita
Ranchor, prof. Piet van Riel, prof. Robbert Sanderman en prof. Gerben Westerhof, ik ben
vereerd dat jullie willen plaatsnemen in mijn commissie en het proefschrift hebben willen
beoordelen. Dank voor de tijd en moeite die u hebt gestoken in de beoordeling van het
manuscript en uw aanwezigheid bij de verdediging.
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ACKNOWLEDGEMENTS | DANKWOORD
Dan kom ik bij de mensen die als collega’s van PGT, ‘de reumagroep’ of in de klinieken
betrokken waren bij mijn onderzoek. Mijn dank gaat uit naar alle collega’s van de afdeling
PGT die mij tijdens het onderzoek hebben bijgestaan met raad, advies of een luisterend oor.
Peter ten Klooster, dank voor de onvermoeibare inzet om mij in te wijden in het voor mij
ondoorgrondelijke Teleform. Dank ook voor het meedenken en je advies over statistische
analyses en studiedesigns. Annemarie Braakman-Jansen, uiteindelijk heb ik geen kostenef-
fectiviteitsanalyse kunnen uitvoeren, maar dank dat je jouw expertise over dit onderwerp
met mij wilde delen. Alle collega’s van PGT wil ik danken voor de samenwerking, maar ook
de interesse en gezelligheid op de afdeling, tijdens congressen en de ‘koffie met taart’ mo-
menten. Dames van het secretariaat, vooral Marieke Smellink-Kleisman en Ria Stegehuis-de
Vegte en later ook Marion Reinderink-Vaanholt, hartelijk dank voor alle bereidheid tot hulp
en ondersteuning, bovendien vond ik het altijd gezellig om even bij jullie binnen te lopen.
Daarnaast wil ik nog een aantal mensen van buiten de afdeling bedanken, die mij gehol-
pen hebben met de inhoud van de verschillende studies. Ten eerste de twee Patiëntpartners
Lynn Packwood en Klaas Sikkel. Dank voor jullie tijd, maar vooral voor het delen van jullie
inzichten en ervaringen. In het bijzonder wil ik graag prof. Job van der Palen noemen. Job,
dank voor je heldere uitleg over de verschillende analyses en je adviezen voor de METC-
aanvraag, dit heeft mij ontzettend geholpen. Tot slot Catherine Lombard: dear Catherine,
thank you for your excellent editing, your flexibility and your dedication to the written
word.
Ook de collega’s van de afdeling Reumatologie en Klinische Immunologie van het MST
wil ik op deze plaats noemen. Alle reumatologen, reumatologen in opleiding, verpleeg-
kundigen en nurse practitioners, hartelijk dank voor jullie hulp, ondersteuning en interesse
in mijn onderzoek. Alle reumatologen wil ik danken voor de hulp bij het aanschrijven van
patiënten, waarvoor we samen honderden papieren dossiers hebben doorlopen en jullie
evenzoveel brieven hebben ondertekend. Jullie hebben me telkens verbaasd met jullie ken-
nis over je patiënten, door het overgrote deel bij naam te kennen. Dr. Inger Meek, dank dat
ik in het begin van mijn onderzoek met jou mocht meelopen om zo een beeld te krijgen van
het werk van een reumatoloog. Ook Jacqueline, Jolanda, Nancy en Riëtte wil ik bedanken
voor het beantwoorden van al mijn vragen over jullie werk en de hulp bij het werven van
patiënten. Alle dames op het secretariaat, dank voor de gezelligheid en ondersteuning tij-
dens de periodes dat ik me door honderden patiëntendossiers heen worstelde. Mijn stapels
dossiers en brieven moeten jullie af en toe enorm in de weg hebben gelegen. Mirjam, als
onderzoeks-secretaresse heb je me ondersteund bij de METC-aanvraag en de verdere com-
municatie met de METC, waarvoor dank. De programmeurs van ROMA wil ik danken voor
hun hulp bij het invoeren van alle vragenlijsten en het verkrijgen van de juiste data uit het
systeem.
Riëtte Leemreize-Mol, tijdens de ontwikkeling van ‘Doelbewust!’ heb ik al van je expertise
gebruik mogen maken. In de aanloopfase ben je met het enthousiasmeren van je collega-
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ACKNOWLEDGEMENTS | DANKWOORD
verpleegkundigen onmisbaar geweest en ook tijdens het geven van de cursus heeft je be-
trokkenheid een grote bijdrage geleverd aan het onderzoek. Wat was het leuk om samen
met jou de cursus te presenteren (in het Engels!) op het eerste internationale reumaver-
pleegkundigen congres in Rotterdam. Bedankt voor de fijne samenwerking en ik vind het
fantastisch dat je het voor elkaar hebt gekregen om ‘Doelbewust!’ voort te zetten in het
MST! Ook Diana Boerema-Evers, Rianka Hek, Rudin Peters en Elsbeth Veldhuis, dank voor
jullie inspanningen als trainer. Jullie enthousiasme en toewijding bij de cursus heeft het
mede mogelijk gemaakt dit onderzoek uit te voeren. Ook de lokale onderzoekers, Dr. E.A.J.
Dutmer van het ziekenhuis Gelderse Vallei in Ede, drs. W. Hissink Muller van het St. Elisabeth
ziekenhuis in Tilburg en drs. P. Olthof van het Streekziekenhuis Koningin Beatrix in Winters-
wijk wil ik hartelijk danken voor hun inzet. Ook de artsen, verpleegkundigen en overige
collega’s van de drie betreffende ziekenhuizen dank ik hartelijk voor hun medewerking en
ondersteuning.
Alle studenten van de Universiteit Twente die in het kader van hun master- of bachelor-
scriptie hebben geholpen bij het verzamelen en invoeren van data en het analyseren van
de gegevens of op een andere manier betrokken waren bij het onderzoek, wil ik hartelijk
danken voor hun hulp en de leuke samenwerking. Jullie hebben allemaal op de een of
andere manier bijgedragen aan de totstandkoming van dit proefschrift: Britta Semlianoi,
Daniel Coulibaly, Diana Becker, Erna Top, Gina Ehling, Hannah Kling, Inge-Loes Vredegoor,
Irina Lehmann, Jadran Botterman, Jana Petermann, Janine Kleinfeld, Janne de Kan, Jen-
nifer Greilich, Kelcy Mooijweer, Laura van Pelt, Leonie Oldenburger, Malou Sowa, Marleen
Perdok, Mirte Seinen, Niki Boerrigter en Sophia Wibberich. Hannah Kling, jou wil ik speciaal
bedanken voor je hulp als student-assistent tijdens de dataverzameling. Onze gezamenlijke
gesprekken hebben me nieuwe inzichten gegeven over de inhoud van de interviews.
Veel dank gaat ook uit naar mijn medepromovendi. Ik bevond me in de luxe positie om
veel collega’s te hebben meegemaakt; zowel de oude garde (waarvan het merendeel tij-
dens mijn eerste twee jaren bij de afdeling promoveerde), als de Torenkamergroep, waar
ik mee op ben getrokken tijdens het hele traject, en de nieuwe garde, die halverwege mijn
tijd aanhaakte. Dank voor de praktische hulp bij het in enveloppen stoppen van honderden
vragenlijsten, maar vooral voor de gesprekken die we hebben gevoerd tijdens de wandeling
naar de koffiecorner, de kantine en tijdens het werken. In het speciaal wil ik de mensen noe-
men met wie ik een kamer heb gedeeld, eerst de torenkamer, later op de gang en tenslotte
in de Cubicus. Vanaf de deur: Ingrid, Liseth, Martijn, Anne Marie, Maarten, Jobke, Hester,
Elly. We waren met veel, wat zorgde voor concentratieproblemen, maar vooral voor ontzet-
tend veel lol. Ik zal het afgrijzen van ‘de mannen’ toen Hester en ik de WK-poule wonnen
nooit meer vergeten. Ik zal me voortaan weer netjes bij het wielrennen houden. Ook mijn
gangkamergenootjes Martine en Stephy en spinningmaatjes Maria en Hester: dank voor de
nodige afleiding. En de anderen, waaronder Floor, Jojanneke, Laura, Laurien, Lex, Marloes,
Nadine, Nienke, Olga, Pia, Rilana, andere Roos, Sanne en Saskia, dank voor alle gezellig-
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ACKNOWLEDGEMENTS | DANKWOORD
heid! Jobke, Hester en Anne Marie, jullie hebben mijn tijd bij de UT zoveel leuker gemaakt,
ik hoop dat we dat de komende jaren voor elkaar kunnen blijven doen! Hester, wij raken
nooit uitgepraat, waar het ook over gaat. Geweldig dat je mijn paranimf wilt zijn en samen
met mij vooraan in de zaal wilt staan!
Prof. Theo Bouman, als begeleider van mijn afstudeeronderzoek bij de RUG heb je me
geprikkeld zelf de problemen die ik tegen kwam op te lossen en gestimuleerd een onder-
zoekende houding aan te nemen. Mede dankzij jouw aanbeveling ben ik begonnen aan dit
onderzoek, waarvoor dank.
Collega’s van de NHL in Leeuwarden; door jullie belangstelling en enthousiasme voor mijn
onderzoek heb ik me gesteund gevoeld tijdens de laatste loodjes van dit proefschrift. Het is
bijzonder voor me dat ik de uitkomsten van mijn onderzoek nu in de praktijk kan brengen,
bij de basis van de zorgprofessional van de toekomst.
Lieve familie en vrienden, al waren jullie niet inhoudelijk betrokken bij mijn onderzoek,
toch wil ik jullie bedanken. Voor alle momenten waarop jullie hebben gevraagd hoe het
met ‘mijn onderzoek’ ging en vooral de momenten waarop het juist over de echte zaken in
het leven mocht gaan.
Anne en Eke, jullie hebben als medebewoner en buurvrouw van mijn anti-kraakhuisje
onze tijd in de Enschedese Vogelaarwijk 100 keer leuker gemaakt, veel dank hiervoor. Attie,
Elise en Carlijn, onze girlsweekenden, logeerpartijen, high tea’s en nu ook de babyshowers
en kraamvisites zijn heel belangrijk voor me! Mariska, Hannah, Wouter, Jonas, we zien el-
kaar veel te weinig. Bedankt voor de steun, interesse en vooral gezellige afleiding! Lieve
vrienden uit Harderwijk (inclusief allen die liever buiten Nederland wonen), dank voor de
ontspanning, interesse, lol en dat jullie me in jullie midden hebben opgenomen als niet-
Harderwieker.
Mappy en oma Withaar, wat fijn dat jullie er altijd zijn als mijn ‘surrogaat’ oma’s (maar
zeker niet minder dan echte!).
Ans en Ton, jullie betrokkenheid en liefde hebben me gesteund. Nog naast al de prak-
tische huis-, tuin- en keukendingen die jullie voor mij en Pim hebben gedaan, zodat wij
door konden werken. Het heerlijke eten en de reisjes en vakanties hebben natuurlijk ook
geholpen!
Renske en Vincent, Josephine en Arnaud, wat fijn dat jullie er altijd zijn. Ik vind het heer-
lijk dat ik jullie de laatste twee jaar weer meer zie en jullie prachtige kinderen van dichtbij
kan zien opgroeien. Josephine, ik ben er trots op dat jij mijn paranimf wilt zijn!
Lieve papa en mama, bedankt dat jullie nooit moe zijn geworden van dat meisje dat altijd
‘waarom?’ vroeg (vraagt..). Jullie hebben zelfs altijd geprobeerd een goed antwoord te
geven op mijn eindeloze vragen. Hiermee hebben jullie mij ongetwijfeld gestimuleerd om
dit promotieonderzoek tot een goed einde te brengen. Papa, wie had dat gedacht, dat ik
de eerste in de familie zou worden die deze titel krijgt. Je hebt je er zorgen over gemaakt,
maar je hebt me ook altijd gesteund. Mama, kiezen voor wat ik leuk vind en waar ik energie
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ACKNOWLEDGEMENTS | DANKWOORD
van krijg, dat heb ik van jou geleerd. Jullie zijn de beste ouders.
Lieve Pim, ik kan me niet voorstellen hoe het zonder jou zou zijn. Waar ik ook gewoond
heb de afgelopen jaren, thuis is waar jij bent. Afwisselend afstuderen, werken, promoveren,
we hebben het allemaal samen gedaan. Jij hebt me mijn eerste beklimming van de Alpe
d’Huez op gecoached en door de moeilijke dalen van promoveren heen gesleept in onze
eigen Universiteit van Harderwijk. Ik heb zo’n zin in wat we samen nog allemaal meer gaan
doen!
Harderwijk, juli 2016
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About the author
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ABOUT THE AUTHOR
Rosa Ymkje Arends was born in Burum, The Netherlands, on October 24th 1984. In 2003
she finished secondary education at the Lauwers College in Buitenpost and commenced
her studies in psychology at the University of Groningen. After receiving her Bachelor of
Science degree in 2007, Roos followed courses in medical anthropology at the University of
Amsterdam as part of her master’s degree in psychology at the University of Groningen. In
2009 Roos received her Master of Science in Cross-cultural Health Psychology. In February
2010, Roos started working as a Ph.D. candidate at the department of Psychology, Health &
Technology of the University of Twente, The Netherlands, in collaboration with the Arthritis
Centre Twente of the Medisch Spectrum Twente. Her Ph.D. project ‘Goal management:
a way to successfully adapt to arthritis’ was supervised by prof. dr. Mart van de Laar, dr.
Christina Bode and dr. Erik Taal. In 2015, the European League Against Rheumatism (EULAR)
awarded Roos an Abstract Award for her work described in Chapter 3 of this thesis for its
valuable contribution to the field of rheumatology. The results of the Ph.D. project are
presented in this thesis. She currently works as a lecturer at the Nursing department of
the NHL University of Applied Science in Leeuwarden, and as consultant and trainer for
Essenburgh Training & Consultancy, leading courses for the prevention of psychotrauma and
leadership development.
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ABOUT THE AUTHOR
List of Publications
Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (Submitted). A goal management intervention
for patients with polyarthritis and mild depressive symptoms: A quasi-experimental study.
Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (Submitted). A mixed-methods process evaluation
of a goal management intervention for patients with polyarthritis.
Arends, R. Y., Bode, C., Taal, E., & van de Laar, M. A. F. J. (2016). The longitudinal relation between
patterns of goal management and psychological health in people with arthritis: The need for
adaptive flexibility. British Journal of Health Psychology, 21(2), 469-489. doi:10.1111/bjhp.12182
Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (2015). Exploring preferences for domain-specific
goal management in patients with polyarthritis: What to do when an important goal becomes
threatened? Rheumatology International, 35(11), 1895-1907. doi:10.1007/s00296-015-3336-8
Valentijn, P. P., Ruwaard, D., Vrijhoef, H. J. M., de Bont, A., Arends, R. Y., & Bruijnzeels, M. A. (2015).
Collaboration processes and perceived effectiveness of integrated care projects in primary care: A
longitudinal mixed-methods study. BMC Health Services Research. doi:10.1186/s12913-015-1125-4
Valentijn, P. P., Vrijhoef, H. J., Ruwaard, D., Boesveld, I., Arends, R. Y., & Bruijnzeels, M. A. (2015). Towards
an international taxonomy of integrated primary care: a Delphi consensus approach. BMC Fam
Pract, 16, 64. doi:10.1186/s12875-015-0278-x
Valentijn, P. P., Vrijhoef, H. J., Ruwaard, D., de Bont, A., Arends, R. Y., & Bruijnzeels, M. A. (2015).
Exploring the success of an integrated primary care partnership: a longitudinal study of collaboration
processes. BMC Health Serv Res, 15, 32. doi:10.1186/s12913-014-0634-x
Bode, C., & Arends, R. Y. (2014). Optimale ontwikkeling, persoonlijke doelen en zelfregulatie. In E.
Bohlmeijer & L. Bolier (Eds.), Handboek Positieve Psychologie. Theorie, onderzoek en toepassingen.
(pp. 139 - 152). Amsterdam: Boom.
Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (2013a). A goal management intervention for
polyarthritis patients: Rationale and design of a randomized controlled trial. BMC musculoskeletal
disorders, 14, 239. doi:10.1186/1471-2474-14-239
Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (2013b). The role of goal management for
successful adaptation to arthritis. Patient Education and Counseling, 93(1), 130-138. doi:10.1016/j.
pec.2013.04.022
Arends, R. Y., Bode, C., Taal, E., & Van de Laar, M. A. F. J. (2012). Doelbewust! Trainershandleiding
& Deelnemersmateriaal [Right on Target. Trainer’s Guide and Participants’ Material]. Enschede:
Universiteit Twente & Reumacentrum Twente.
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LIVING A GOOD LIFE WITH ARTHRITISMANAGING PERSONAL GOALS TO IMPROVE PSYCHOLOGICAL HEALTH
Roos Y. Arends
LIVIN
G A
GO
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LIFE W
ITH A
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RITIS M
AN
AG
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AL G
OA
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PRO
VE
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oos Y. A
rend
s
Rosa (Roos) Ymkje Arends holds a Master of Science in Psychology and com-
pleted her Ph.D. at the Department of Psychology, Health and Technology at the
University of Twente, The Netherlands. Her Ph.D. thesis focuses on the role of
goal management for the psychological health of people with arthritis.
The thesis describes the relationship between goal management and psycholo-
gical adaptation to arthritis and the development and evaluation of a goal ma-
nagement programme for people with arthritis and mild depressive symptoms.
Concept_Cover_Roos-Arends2.indd 1 29-08-16 13:53