person-centred care in rheumatology nursing in...
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School of Health Sciences, Jönköping University
Person-centred care in rheumatology nursing
in patients undergoing biological therapy:
An explorative and interventional study
Ingrid Larsson
DISSERTATION SERIES NO. 41, 2013
JÖNKÖPING 2013
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© Ingrid Larsson, 2013
Publisher: School of Health Sciences
Print: Ineko AB, Kållered 2013
ISSN 1654-3602
ISBN 978-91-85835-40-9
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I have a dream
I have a dream, a song to sing To help me cope, with anything If you see the wonder, of a fairy tail You can take the future, even if you fail I believe in angels, something good in everything I see I believe in angels, when I know the time is right for me I’ll cross the stream. I have a dream I have a dream, a fantasy To help me through reality And my destination makes it worth the while Pushing through the darkness, still another mile I believe in angels, something good in everything I see I believe in angels, when I know the time is right for me I’ll cross the stream. I have a dream
I HAVE A DREAM
Musik och text: Benny Andersson/Björn Ulvaeus
© Union Songs Musikförlag. Tryckt med tillstånd av Universal Music
Publishing AB/Gehrmans Musikförlag AB.
To my beloved husband Thomas
and my wonderful kids Johan, Martin and Jenny
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Abstract
Aim: The overall aim was to explore and evaluate rheumatology nursing from a
person-centred care perspective in patients undergoing biological therapy.
Methods: This thesis focuses on patients with chronic inflammatory arthritis (CIA)
who were undergoing biological therapy at a rheumatology clinic in Sweden.
Papers I and II had an explorative descriptive design with a phenomenographic
approach. The 40 participants were interviewed about their dependence on or
independence of a nurse for the administration of their infusions or injections.
Paper III had a randomized controlled design involving 107 patients in the trial. The
objective of the intervention was to replace every second monitoring visit at a
rheumatologist-led clinic by a visit to a nurse-led rheumatology clinic, based on
person-centred care. Paper IV had an explorative descriptive design with a qualitative
content analysis approach. Interviews were conducted with 20 participants who
attended the nurse-led rheumatology clinic.
Findings: Dependence on a rheumatology nurse for administration of intravenous
infusions was described as invigorating due to the regular contact with the nurse,
which provided security and involvement (paper I). Independence of a nurse for
subcutaneous injections was understood by the patients in different ways and was
achieved by struggling to cope with injecting themselves, learning about and
participating in drug treatment (paper II). Patients with stable CIA receiving biological
therapy were monitored by a nurse-led rheumatology clinic without any difference in
outcome when compared to monitoring carried out at a rheumatologist-led clinic, as
measured by the Disease Activity Score 28. Replacing one of the two annual
rheumatologist outpatient follow-up visits by a visit to a nurse-led clinic for the
monitoring of biological therapy was found to be safe and effective (paper III).
A nurse-led rheumatology clinic, based on person-centred care, added value to the
follow-up care of patients with stable CIA undergoing biological therapy by providing
a sense of security, familiarity and participation (paper IV).
Conclusions: This thesis contributes a valuable insight into person-centred care as the
core of rheumatology nursing in the area of biological therapy. The rheumatology
nurse adds value to patient care when she/he gives patients an opportunity to talk
about themselves as a person and allow their illness narrative to constitute a starting
point for building collaboration, which encourages and empowers patients to be an
active part in their biological therapy and become autonomous. A nurse who provides
person-centred care and keeps the patients’ resources and needs in focus serves as an
important guide during their healthcare journey.
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Original papers
The thesis is based on the following papers, which are referred to in the text by Roman
numerals (I-IV):
Paper I
Larsson I., Bergman S., Fridlund B. & Arvidsson B. (2009) Patients’ dependence on a
nurse for the administration of their intravenous anti-TNF therapy:
A phenomenographic study. Musculoskeletal Care, 7(2): 93-105.
Paper II
Larsson I., Bergman S., Fridlund B. & Arvidsson B. (2010) Patients’ independence of a
nurse for the administration of subcutaneous anti-TNF therapy: A phenomenographic
study. International Journal of Qualitative Studies on Health and Well-being, 5(2): 5146.
Paper III
Larsson I., Fridlund B., Arvidsson B., Teleman A. & Bergman S. (2013) A nurse-led
rheumatology clinic for monitoring biological therapy: A randomized controlled trial.
Journal of Advanced Nursing, in press.
Paper IV
Larsson I., Bergman S., Fridlund B. & Arvidsson B. (2012) Patients’ experiences of a
nurse-led rheumatology clinic in Sweden: A qualitative study. Nursing and Health Sciences, 14(4): 501-507.
The papers are reprinted with the kind permission of the publishers.
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Contents
Acknowledgements 9
Abbreviations 10
Definition 10
Introduction 11
Background 12
Patients with chronic inflammatory arthritis (CIA) undergoing biological therapy 12
Patients 12
Chronic inflammatory arthritis (CIA) 13
Biological therapy 14
Rheumatology nursing 15
Person-centred care 16
Holistic care 16
Respectful care 16
Individualized care 16
Empowering care 17
Person-centred care in clinical practice 17
Rationale for the thesis 18
Overall and specific aims 20
Materials and methods 21
Design 21
Overview 21
Phenomenographic approach (papers I and II) 24
Randomized controlled trial (paper III) 25
Qualitative content analysis approach (paper IV) 25
Context 26
Participants (papers I-IV) 27
Intervention (paper III) 29
Rheumatologist-led clinic 29
Nurse-led rheumatology clinic 29
Data collection (papers I-IV) 30
Measuring instruments (paper III) 31
Data analysis (papers (I-IV) 33
Methodological considerations 36
Trustworthiness in the qualitative studies (papers I, II and IV) 36
Credibility 36
Dependability 37
Confirmability 37
Transferability 38
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Trustworthiness in the quantitative study (paper III) 39
Internal validity 39
Reliability 40
Objectivity 40
External validity 41
Ethical considerations 42
Autonomy 42
Beneficence 42
Non-maleficence 43
Justice 43
Summary of the findings 44
Patients’ dependence on a nurse for the administration of their intravenous
anti-TNF therapy (paper I) 44
Patients’ independence of a nurse for the administration of subcutaneous
anti-TNF therapy (paper II) 46
A nurse-led rheumatology clinic for monitoring biological therapy (paper III) 48
Patients’ experiences of a nurse-led rheumatology clinic (paper IV) 50
Discussion 52
Person-centred care creates security 52
Person-centred care creates familiarity 53
Person-centred care creates participation 54
Person-centred care creates independence 55
Comprehensive understanding 56
Conclusions 59
Clinical and research implications 60
Summary in Swedish/ Svensk sammanfattning 62
Personcentrerad vård i reumatologisk omvårdnad för patienter med biologisk
läkemedelsbehandling: En utforskande och interventionell studie 62
Bakgrund 62
Syfte 65
Metod 66
Resultat 66
Patienters beroende av en sjuksköterska för administration av intravenös
anti-TNF behandling (artikel I) 66
Patienters oberoende av en sjuksköterska för administration av subkutan
anti-TNF behandling (artikel II) 67
En sjuksköterskeledd reumatologimottagning för monitorering av biologisk
läkemedelsbehandling (artikel III) 68
Patienters erfarenheter av en sjuksköterskeledd reumatologimottagning (artikel IV) 68
Övergripande förståelse 70
Slutsatser 72
Kliniska implikationer och forskningsimplikationer 73
References 74
Papers I-IV
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Acknowledgements
In many ways writing a doctoral dissertation is similar to an exciting but difficult
journey leading to unfamiliar places. On this journey I had the privilege of meeting
many people, some of whom made the journey possible and served as important
guides. I was fortunate to have a troika of supervisors, Barbro Arvidsson,
Bengt Fridlund and Stefan Bergman, to accompany me on my way. Barbro, you
inspired and introduced me to nursing research. You helped me to realize how
fascinating nursing research really is and were always approachable, interested and
positive. You devoted a great deal of time to reading my drafts. I am thankful for your
belief in me and for allowing me the freedom to develop. Bengt, you opened new
doors to understanding research, even if your expertise is far beyond what I will ever
comprehend. I admire your sharp intellect and I am deeply grateful for all the time you
invested in introducing me to research. Stefan you guided and inspired me thanks to
your analytical eye and amazing ability to dive into empirical research and eventually
surface with new insights. Together, the three of you have helped me to become an
independent traveller in the sometimes bewildering world of academia. I would also
thank all my colleagues, as well as my dear friends and relatives, for their support,
participation and for just being there for me. I extend special appreciation to all the
participants in my studies for so willingly sharing your knowledge and experiences.
To my beloved family, you mean everything to me. Thank you for always being there,
for your never-ending support and love. Without your love and encouragement D-day
would never have arrived. I love you tremendously, and now that I have completed
this work I hope to be a more present wife, mum, daughter, daughter in law,
granddaughter, sister, sister in law and aunt.
Hyltebruk May 2013,
Ingrid Larsson
The studies were supported by the Swedish Rheumatism Association, the Norrbacka-
Eugenia Foundation, the Rheumatism District of Gothenburg, the South Regional
Health Care Committee, the Swedish Association of Health Professionals,
the Association of Rheumatology Nurses in Sweden, Region Halland and the Inger
Bendix Foundation for Medical Research.
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Abbreviations
ACR American College of Rheumatology
anti-TNF anti-Tumour Necrosis Factor
CIA Chronic Inflammatory Arthritis
C.G. Control Group
CRP C-reactive protein
DAS28 Disease Active Score 28
DMARD Disease-Modifying Anti-Rheumatic Drug
ESR Erythrocyte Sedimentation Rate
EULAR European League Against Rheumatism
HAQ Health Assessment Questionnaire
I.G. Intervention Group
IL Interleukin
NRS Numerical Rating Scale
NSAID Non-Steroidal Anti-Inflammatory Drugs
RA Rheumatoid arthritis
RCT Randomized Controlled Trial
SpA Spondyloarthritis
SRQ Swedish Rheumatology Quality Register
TNF-α Tumour Necrosis Factor-α
VAS Visual Analogue Scales
WHO World Health Organization
Definition
In this thesis persons and patients are synonymous terms and concepts (p. 17).
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Introduction
Nursing care and treatment in patients with chronic conditions have developed and
become more proactive, evidence-based and person-centred, which means that the
role of the nurse has been extended (WHO 2010). In order to focus on patients’ needs,
nurse-led clinics have been established as a complement to physician-led clinics for the
management of chronic conditions such as allergies, asthma, chronic obstructive
pulmonary disease, mental health problems, heart failure and diabetes (Nolte & McKee
2008). Nurse-led clinics with a holistic approach are an important element of
high-quality patient care as they enable nurses to understand each patient’s life
situation and confirm her/him as a unique person (Shiu et al. 2012). The objective of
person-centred care is to illuminate the major importance of the patient perspective
and involving her/him in care (Edvardsson et al. 2008). In order to meet the needs of
each individual patient, rheumatology nursing should have a holistic approach (Oliver
2011) which means building a relationship between nurse and patient (Hill 2006b). In
management of patients with chronic inflammatory arthritis (CIA) rheumatology
nursing has changed from a more basic to an advanced level in line with the
development of Disease-Modifying Anti-Rheumatic Drugs (DMARD) treatment and
biological therapy. Nurses now have the competencies and skills to examine patients’
joints, manage disease activity and monitor drug therapies (Hill 2006b,
van Eijk-Hustings et al. 2012). Although examination of patients’ joints by nurses’ is
fairly new in Sweden, nurses in other countries have assessed patients’ joints for
decades (Hill 1997a, Temmink et al. 2001). Since the introduction of biological therapy,
disease activity and joint inflammation have declined (Simard et al. 2011). Biological
therapies have transformed the rheumatology landscape and are rapidly becoming
more common due to the development of new therapies for a greater number of
indications (Furst et al. 2012, van Vollenhoven et al. 2012). Patients are supported by a
multidisciplinary team, of which the rheumatology nurse is a vital member (Oliver
2011). Rheumatology nursing research focusing on patients undergoing biological
therapy is still in its infancy and there is a need for more research on this topic (Palmer
& El Miedany 2010).
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Background
Patients with chronic inflammatory arthritis (CIA) undergoing biological therapy
Patients
Living with CIA affects patients physical functioning but also emotional, psychological
and social aspects that have a global impact on the whole life situation (Hewlett et al.
2011, Ryan 2006). Patients with CIA often have pain, stiffness, reduced mobility,
fatigue and sleep disturbances as well as dermatological, nutritional (Braun & Sieper
2007, Klareskog et al. 2009) and sexual problems (Josefsson & Gard 2010). Pain affects
everyday life and may constitute a barrier to the performance of valued activities.
Patients describe struggling to find balance in their lives in order to be autonomous
and independent (Ahlstrand et al. 2012). Pain and stiffness, especially in the morning,
are major problems, affect their mobility, quality of life (Hill 2006a) and ability to
remain gainfully employed (Westhoff et al. 2008). The pain increases due to fatigue,
stress and depressed mood (Ahlstrand et al. 2012). One of the most difficult symptoms
is fatigue. Patients describe fatigue as significant, intrusive, overwhelming,
uncontrollable and difficult to manage alone. The consequences of fatigue permeate
every aspect of life, leading to a reduction in activities and self-esteem. It restricts the
patients’ ability to fulfil their normal roles in the family and takes an emotional toll on
relationships, causing frustration, irritability and loss of control (Hewlett et al. 2005a,
Nikolaus et al. 2010). Both the physical and the total life situation also affect their
sexual health, which should be viewed from a holistic perspective that includes
physical, psychological and social aspects of well-being (Hill et al. 2003a, Josefsson &
Gard 2010). Psychosocial aspects are important in management (Backman 2006) and
partners of patients with a chronic disease such as CIA are vital in disease
management, although many carry a substantial psychosocial burden (Matheson et al.
2010). Patients living with a chronic disease frequently need to include other people in
their lives and are often dependent on health professionals to deal with certain aspects
of their disease. Despite the fact that patients strive to achieve independence, they do
not consider their dependence on health professionals as contradictory (Delmar et al.
2006). However, health care professionals should be attentive to patients’ efforts to
master their life situation, which requires knowledge and understanding of their
experiences in terms of dependency (Eriksson & Andershed 2008).
The multidisciplinary team is important for the rheumatology care of patients with
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CIA, which should be delivered with an awareness of the patients’ whole life situation.
The team should enable these patients to care for themselves and retain or regain
optimum independence. The various professional categories in the team have distinct
roles but collaborate in order to focus on the patients’ resources and needs (FitzGerald
2006, Walker 2012). The rheumatology nurse is a key member of the team in term of
guiding patients to manage their CIA and biological therapy and its impact on the
many aspects of their life (Walker 2012, van Eijk-Hustings et al. 2012).
Chronic inflammatory arthritis (CIA)
In this thesis, the term CIA refers to rheumatoid arthritis (RA) as well as
spondyloarthritis (SpA) (van Eijk-Hustings et al. 2012). The chronic joint inflammation
is caused by an imbalance in the regulation of cytokines and other immune system
inflammatory mediators (Braun & Sieper 2007, Klareskog et al. 2009). The
overproduction of various cytokines in the joints of patients with arthritis is a part of
the process that leads to joint destruction (Tracey et al. 2008). The different diagnoses
within CIA are made based on established criteria including clinical findings, laboratory
analyses and imaging (Aletaha et al. 2010, Rudwaleit 2010, Rudwaleit et al. 2011) and
management is based on recommendations from the European League Against
Rheumatism (EULAR) and the American College of Rheumatology (ACR) (Braun et
al. 2011, Singh et al. 2012, Smolen et al. 2010). For all diagnoses within CIA, early
diagnosis, quick and effective treatment, in addition to regular follow-ups with
evaluation of disease activity, are important (Burmester et al. 2012, Mercieca et al. 2012,
McInnes et al. 2012, Sieper et al. 2012).
RA is a chronic, systemic, inflammatory, autoimmune and complex genetic disease,
meaning that several genes, environmental factors as well as other unknown factors act
together to cause pathological events (Klareskog et al. 2009, Scott et al. 2010). A
prevalence of about 0.7% has been reported in Swedish adults with a higher prevalence
among women (Englund et al. 2010, Neovius et al. 2011). The symptoms are pain and
stiffness, especially in the morning and often symmetrical mainly in the hands and feet,
tender and swollen joints as well as general symptoms such as fatigue and loss of
energy. RA can cause destruction of the joints leading to impaired physical function
(Burmester et al. 2012). Treatment including DMARD should be started upon
diagnosis in order to reduce disease activity, prevent joint damage and lessen the
impact on the patients’ daily lives (McInnes et al. 2012). The disease course is usually
characterized by episodes of worsening or “flares” alternating with periods of lower
disease activity (Bingham et al. 2011).
SpA comprises a number of different diseases: ankylosing spondylitis, psoriatic
arthritis, undifferentiated spondyloarthritis, arthritis associated with inflammatory
bowel disease and reactive arthritis. The SpA subgroups include a variety of conditions
that could be characterized by axial and/or peripheral arthritis, enthesitis and an
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association with HLA-B27 antigen (Rudwaleit 2010). A prevalence of 0.45%-1% has
been reported (Haglund et al. 2011, Reveille et al. 2012). Although the prevalence in the
whole SpA group is equal among Swedish women and men, there are large differences
within the subgroups (Haglund et al. 2011). The symptoms of SpA are tender and
swollen joints, pain in both small and large joints, morning stiffness and fatigue
resulting in impaired spinal mobility and physical function (Mercieca et al. 2012).
Physiotherapy is the main non-pharmacological treatment for SpA. Non-Steroidal
Anti-Inflammatory Drugs (NSAID) and sometimes DMARD are prescribed to
alleviate symptoms (Ash et al. 2012, Braun et al. 2011).
Biological therapy
The primary goals of CIA treatment are to suppress disease activity, and achieve
remission or low disease activity by controlling the symptoms and inflammation as well
as prevent joint damage and early death (Braun et al. 2011, Gossec et al. 2012, Smolen et
al. 2010). Rheumatology research has led to the development of biological therapies
for patients with an inadequate response to conventional treatment (van Vollenhoven
et al. 2012). Biological therapies block inflammatory cytokines and cells within the
synovium and immune system, thus inhibiting the disease. Today, this includes
therapies that target the cytokines tumour necrosis factor alpha (TNF-α), interleukin
(IL) 1 and 6 as well as B- and T-cells. Biological therapies have transformed the
rheumatology landscape and are rapidly becoming more common due to the
development of new biological therapies for a greater number of indications e.g. RA
and SpA (Buch & Emery 2011, Furst et al. 2012). Biological therapies are safe and
effective in controlling the inflammatory symptoms of RA (Breedveld & Combe 2011)
and SpA (Goh & Samanta 2012). Previous research has demonstrated that biological
therapies lead to a reduction in disease activity, better physical function and a
reduction or halt of radiological progression (Nam et al. 2010, van Vollenhoven et al.
2012), health status and quality of life (Gulfe et al. 2010). Disease activity and
inflammation in patients with CIA have declined over the past decade since the
introduction of biological therapy (Simard et al. 2011).
Biological therapies are administered as subcutaneous injections or intravenous
infusions (Tracey et al. 2008). In the case of subcutaneous injections the patients have
control over where and when the injections are administered. The disadvantages are
limited flexibility in terms of dosage due to prefilled syringes, the fact that some
patients are unable or forget to inject themselves. Intravenous infusions supervised by
health care professionals automatically ensure adherence, provide rapid relief as well as
the possibility to adjust the dosage on each occasion in accordance with the patient’s
need. The disadvantages are that the patients are dependent on a nurse and have to
allocate time for the hospital visit, which also entails cost (Schwartzman & Morgan
2004).
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Rheumatology nursing
Rheumatology nursing is based on a holistic approach by which the whole patient is in
focus (Hill 2007) and, when optimal, is grounded in the patient perspective (Jacobi et
al. 2004, Larrabee & Bolden 2001). Due to recent development, the rheumatology
nurse has to be an expert with a high level of knowledge of and competence in
providing evidence-based care (Arvidsson et al. 2003, Oliver 2011). The rheumatology
nurse’s role is multi-faceted and challenging, as she/he has to use all of her/his
knowledge and skill to the full, which benefits patients (Hill 1997a). The essence of
rheumatology nursing is to identify and meet patients’ needs, understand illness and
treatment from the patients’ viewpoint and encourage them to participate in the care.
The rheumatology nurse has to enter into a relationship with the patient and empower,
educate, support and guide her/him and her/his family. The relationship between
patient and nurse is central in rheumatology nursing (Ryan 1998, van Eijk-Hustings et
al. 2012) and must be based on participation. The patient’s narrative should be the
point from which the partnership can commence (Ryan & Voyce 2007). The
rheumatology nurse has to educate, share information and support the patients to
make informed decisions and to be co-actors in the care, as well as monitor and
regularly assess disease activity. The rheumatology nurse has to tailor the information
and care based on the patient’s needs and facilitate management on the patient’s
healthcare journey. The duties also include identifying the patient’s problems based on
her/his narratives and referring the patient to other professional categories in the
multidisciplinary team when necessary (Oliver 2011, van Eijk-Hustings et al. 2012,
Walker 2012), including nurse-led clinics (Ryan et al. 2006b). Research has revealed that
nurse-led rheumatology clinics in patients undergoing conventional DMARD therapy
are effective and add value in terms of improving patients’ perceived ability to cope
with arthritis (Hill 1997b, Hill et al. 1994, Hill et al. 2003b, Primdahl et al. 2012, Ryan et
al. 2006b, Tijhuis et al. 2003). A nurse-led clinic can meet EULAR recommendations
pertaining to the nurse’s role in the management of CIA, as it improves patients’
knowledge of CIA and its management as well as enhancing communication,
continuity and satisfaction with care. The rheumatology nurse should participate in
comprehensive disease management to control disease activity, as well as identify,
assess and address psychosocial issues, which is a valuable complement to the medical
care. In order for patients to achieve a greater sense of control, self-efficacy and
empowerment, the nurse should meet their expressed needs and promote
self-management skills. The encounter between nurse and patient should be at
individual level, which is facilitated by a person-centred care (van Eijk-Hustings et al.
2012).
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Person-centred care
Person-centred care comprising a partnership between patient and nurse is advocated
by the WHO as a key component of quality health care (Nolte & McKee 2008).
Morgan and Yoder (2012) defined: “Person-centred care is a holistic approach to
deliver care that is respectful and individualized, allowing negotiation of care, and
offering choice through a therapeutic relationship where persons are empowered to be
involved in health decisions at whatever level that is desired by that individual who is
receiving the care” (Morgan & Yoder 2012) (p.8). In this thesis the concept of
person-centred care includes holistic, respectful, individualized and empowering care.
Holistic care
Holistic care means seeing the whole person and her/his physical, psychological, social
and spiritual needs. To provide holistic care the nurse has to understand how an illness
affects the whole person and how to respond to the real needs of the person.
Holistic care that focuses on biological illness always includes psychological, social and
spiritual aspects of the whole person’s condition and life situation (Morgan & Yoder
2012). A holistic view of nursing involves self-reflection, experience of meaning,
values, feelings and options, all of which are parts of a humanistic view of the
person, which means that she/he is regarded as unique, i.e., an autonomous,
rational, social and spiritual being (Berg & Sarvimaki 2003).
Respectful care
Respectful care recognizes and respects the inherent value of each person, supports a
person’s strength and abilities and promote human freedom. Each person has the right
to be treated with respect and recognized as competent to make decisions about
her/his care. To provide respectful care the nurse must respect the person’s decision
pertaining to daily routines (Morgan & Yoder 2012). Respectful care also
acknowledges the autonomy, dignity and privacy of the human being and should
be based on respecting her/his rights, not merely viewing her/him as a patient who
needs help (Slater 2006). These ethical assumptions constitute a framework for the
nurse when creating a dialogue and relationship with patients (Berg & Sarvimaki 2003).
Individualized care
Individualized care is achieved by understanding a person’s life situation beyond
her/his ability or desire to make decisions and take control of her/his care. A person’s
life situation includes her/his culture, beliefs, traditions, habits, activities and
preferences (Morgan & Yoder 2012). Important components of person-centred care
are support for the rights, values and beliefs of the person (Edvardsson et al. 2008) and
confirmation of the person’s lived experiences. From the patient perspective, fear and
emotional issues can affect health outcomes, as well as the feeling of being
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misunderstood in the care (Slater 2006). Person-centred care emphasizes the
importance of knowing the person behind the patient as a unique person with
her/his will, emotions and needs. Seeing the person with a disease means putting
her/him before the disease (Ekman et al. 2011, Slater 2006).
Empowering care
Empowering care promotes autonomy and self-confidence, which facilitate
participation in decision-making. Effective communication and negotiation are
essential. A person needs to think critically, obtain information to gain knowledge and
be supported to make individual choices in order to be involved in decision-making
and feel genuinely empowered (Anderson & Funnell 2010, Morgan & Yoder 2012,
Tengland 2008), which shifts power to her/him (Slater 2006). To provide empowering
care the nurse has to involve the person in decision-making, thus sharing both power
and responsibility (Edvardsson et al. 2008, Ekman et al. 2011, Tengland 2008). A
partnership between the person and the nurse ensures that the person’s own decisions
are valued. This therapeutic relationship must be based on mutual trust, as
person-centred care implies mutuality (Slater 2006).
Person-centred care in clinical practice
In this thesis patients are persons with a disease. When employing a person-centred
care perspective it is important to know the person behind the patient. Due to the fact
that persons in need of care enter a relationship with a nurse, they will be termed
patients in this thesis.
To ensure that person-centred care is systematic and consistent, routines must be
established to initiate, integrate and safeguard person-centred care in clinical practice.
Patients’ narratives form the basis for the partnership between the patient and nurse.
The purpose is to allow the patients an opportunity to talk about themselves as a
person and so that their illness narrative can constitute a starting point for building
collaboration. Partnership building integrates patients in their care and empowers them
to play an active role, thus making them active co-actors. Patients’ narratives create a
common understanding of the illness experience, which, together with the symptoms
of the disease, provide the nurse with a good foundation for discussing and planning
care and treatment with the patients. Person-centred care involves creating a
partnership that is characterized by shared information, deliberation and
decision-making based on the patient narrative. To safeguard the partnership the nurse
has to document the narratives (Ekman et al. 2011). Previous research has
demonstrated that person-centred care is a way of increasing satisfaction with the care
on the part of both patients (Edvardsson et al. 2010) and nurses in different contexts
(Lehuluante et al. 2012, McCormack et al. 2010). Person-centred care also leads to
improved health outcomes (Chenoweth et al. 2009, Olsson et al. 2006) and reduces the
length of the hospital stay with no negative impact on health-related-quality of life
(Ekman et al. 2012).
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Rationale for the thesis
Patients with CIA undergoing biological therapy often live with lifelong disease and
treatment. Although patients usually have a good quality of life and feel well, they are
concerned about the risk of treatment failure and relapse. In the same way as other
people, their lives revolve around the family, work and social contacts but, in addition,
they have to find the time for health care and medical treatment. Their lives are often
characterized by regular monitoring of both the disease itself and biological therapy.
There is a growing knowledge available about biological therapies in rheumatology
care, as well as their effects and side effects (Furst et al. 2012, Scott 2012). However,
due to the fact that biological therapy is relatively new, there is a lack of research about
patients experiences of how to administer and live with biological therapy. Previous
research on rheumatology nursing and nurse-led rheumatology clinics only involved
patients with RA treated by means of traditional therapies who had regular contact
with a nurse every or every other month (Ndosi et al. 2011, Primdahl et al. 2012). Thus,
there is limited knowledge about the effect of rheumatology nursing in patients with
CIA undergoing biological therapy (Firth & Critchley 2011, Oliver 2011, Palmer & El
Miedany 2010). In order to understand and assist patients who are undergoing
biological therapy, more research is required that focuses on rheumatology nursing
from the patient perspective. Rheumatology nursing is intended to meet patients’
individual needs and improve patient care (van Eijk-Hustings et al. 2012), which can be
achieved by means of person-centred care with a holistic approach that respects and
empowers patients (Morgan & Yoder 2012). This thesis is based on both the
naturalistic paradigm where reality is multiple and subjective and the positivistic
paradigm where reality is objective and generalizable (Polit & Beck 2012). Both
qualitative and quantitative approaches are used in this thesis in order to provide a
more comprehensive and thorough understanding of the phenomenon of
person-centred care in rheumatology nursing in patients undergoing biological therapy
based on the patient perspective. It is important to obtain variations in patient
experiences in order to be able to provide holistic rheumatology nursing. During
illness and treatment, patients are constantly adapting to new situations, in which the
rheumatology nurse plays an important role (Hill et al. 2003b, Ryan et al. 2006b). The
basic approach is to see the whole person as a resourceful being who is capable of
developing as a person, acting responsibly, assuming responsibility, striving for a good
life as well as one who can think, feel, remember, narrate about her/his self-image, be
social and create meaning in life, while at the same time being vulnerable and suffering
(Kristensson-Uggla 2011).
19
With person-centred care, the patients’ resources and abilities to manage their lives
come into focus and the patients are seen as experts in their illness and life situation
(Ekman et al. 2011). The intention is to encourage and empower patients to play an
active role in their biological therapy. Rheumatology nursing has developed so that the
rheumatology nurse has become an expert with in-depth nursing knowledge and
competence in providing evidence-based care and supporting patients to become
co-actors in the care. Today, rheumatology nursing involves comprehensive duties, but
enhanced care is ultimately achieved by a more holistic approach (Palmer &
El Miedany 2010) based on person-centred care that supports patients in making an
informed decision to improve their well-being. In essence, the expertise of the nurse
specialist is multi-faceted, involving a number of important components such as
regular assessment of disease activity, support, information sharing, coordination and
continuity of care (Oliver 2011). The rheumatology nurse with a person-centred care
approach is important in patients with CIA undergoing biological therapy.
20
Overall and specific aims
The overall aim was to explore and evaluate rheumatology nursing from a
person-centred care perspective in patients undergoing biological therapy.
The specific aims were:
To describe variations in how patients with rheumatic conditions conceive their
dependence on a nurse for the administration of their intravenous anti-TNF
therapy (paper I).
To describe variations in how patients with rheumatic diseases conceive their
independence of a nurse for the administration of subcutaneous anti-TNF
therapy (paper II).
To compare and evaluate treatment outcomes of a nurse-led rheumatology
clinic and a rheumatologist-led clinic in patients with low disease activity or in
remission undergoing biological therapy (paper III).
To describe patients’ experiences of a nurse-led rheumatology clinic for those
undergoing biological therapy (paper IV).
21
Materials and methods
Design
The thesis had an explorative and interventional design combining both qualitative
(papers I, II and IV) and quantitative (paper III) methods.
Overview
In order to address the aims of the thesis, the following four designs were used:
An explorative descriptive design based on a phenomenographic approach
including patients with CIA receiving biological intravenous infusions (paper I).
An explorative descriptive design based on a phenomenographic approach
including patients with CIA receiving biological subcutaneous injections
(paper II).
An interventional study with a randomized controlled design and 12 month
follow-up including patients with stable CIA undergoing biological therapy
(paper III).
An explorative descriptive design based on an inductive qualitative content
analysis approach including patients with stable CIA undergoing biological
therapy from paper III (paper IV).
An overview of the papers can be found in Table 1 and the relationship between the
studies is presented in Figure 1.
22
Table 1. Overview of the studies in the thesis, their design, the sex and age of the participants with chronic inflammatory arthritis (CIA), instruments, data collection and data analysis.
CIA Chronic Inflammatory Arthritis; C.G. Control Group; DAS28 Disease Active Score 28; HAQ Health Assessment Questionnaire; I.G. Intervention Group; NRS Numerical Rating Scale; VAS Visual Analogue Scale
Paper I II III IV
Design Explorative descriptive design
Explorative descriptive design
Randomized controlled trial
Explorative descriptive design
Participants 20 patients with CIA receiving intravenous biological infusions
20 patients with CIA receiving subcutaneous biological injections
107 patients with stable CIA undergoing biological therapy
20 patients with stable CIA undergoing biological therapy
Gender
Men 10 (50%) 10 (50%) I.G.
C.G.
23
23
(43%)
(43%)
10 (50%)
Women 10 (50%) 10 (50%) I.G.
C.G.
30
31
(57%)
(57%)
10 (50%)
Mean age, years (min-max)
49 (21-82) 48.4 (17-79) I.G.
C.G.
54.9 (34-81)
55.1 (21-77)
55.5 (34-76)
Instruments DAS28 HAQ VAS Pain NRS Satisfaction NRS Confidence
Data collection During the first half of 2007 Open interview on one occasion
During the first half of 2009 Open interview on one occasion
Between October 2009 and August 2011 Questionnaire at baseline and at 6 and 12 months
From September 2010 to April 2011 Open interview on one occasion
Data analysis Qualitative analysis based on a phe-nomenographic approach
Qualitative analysis based on a phe-nomenographic approach
Quantitative analysis based on parametric methods
Qualitative analysis based on an inductive qualitative content analysis approach
23
Figure 1. Overview of the four studies and their relationship in the thesis.
Study I Explores and describes variations in how patients with CIA conceive their dependence on a nurse for the administration of intravenous biological therapy
Study II Explores and describes variations in how patients with CIA conceive their independence of a nurse for the administration of subcutaneous biological therapy
Study III Compares and evaluates treatment outcomes from a nurse-led rheumatology clinic and a rheumatologist-led clinic in patients with stable CIA undergoing biological therapy
Study IV Explores and describes patients’ experiences of a nurse-led rheumatology clinic in patients with stable CIA undergoing biological therapy
24
Phenomenographic approach (papers I and II)
Phenomenography was developed in Sweden in the early 1970s within the domain of
learning. It has since spread from the educational context to that of health science
research and has been found appropriate for nursing research (Sjostrom & Dahlgren
2002). The word phenomenography means descriptions of phenomena as they appear
to us. The purpose of the phenomenographic approach is to discern the variation of
the world as experienced by means of identifying variation in conceptions of a specific
phenomenon and to describing the qualitatively different ways in which a group of
people makes sense of, experiences and understands the phenomenon in the world
around them (Marton 1981, Marton & Booth 1997). The idea of variation in
conceptions is important, because persons’ experiences will differ depending on their
relationships to the world (Marton, 1992; Wenestam, 2000). It is essential to be aware
of conceptions relating to our social reality and ourselves. Our conceptions of and
knowledge about the world are not merely based on interpreted data from our senses
but are dependent on our personal history. The only world that people can
report about is the one they experience. These two factors help to explain our everyday
lives, and the way in which we deal with them influences our opinion and directs our
search for knowledge (Barnard et al. 1999). Phenomenography is grounded in a
non-dualistic ontology, as the assumption is that the only world that we can
communicate about is the world we experience. The experience of a phenomenon is
an internal relationship between the person and the world. The epistemological
assumption is that an understanding is defined as the experiential relations between a
person and a phenomenon. Changes in a person’s understanding constitute the most
important form of learning. Persons experience the world in different ways, but these
differences can be described, communicated to and understood by others. Such
descriptions of differences and similarities in how the world is conceived constitute the
most essential outcomes of phenomenographic research. The researcher is primarily
interested in how the phenomenon is conceived and not how the world really is.
Phenomenography focuses on the analysis of the how aspect in order to identify
qualitatively different conceptions that cover the major part of the variation in a
population. Several ways of understanding a phenomenon can be found in a group of
people. Descriptions of what and how a person conceives a phenomenon are not
psychological or physical in nature but concern the relationship between her/him and
the phenomenon. These descriptions form descriptive categories, which are composed
of a number of aspects that the persons experience in relation to the phenomenon
(Marton & Booth 1997). In this thesis an explorative, descriptive design with a
phenomenographic approach (Marton 1981) was selected in order to explore the
qualitative variations in how patients experienced their dependence on/independence
of a nurse for the administration of intravenous/subcutaneous anti-TNF therapy. The
clinical implications of such an emphasis on differences means that nurses must be
prepared to take different measures to satisfy the needs of individual patients.
25
Randomized controlled trial (paper III)
The positive paradigm, often associated with quantitative research, has been dominant
for many years in nursing research. Researchers try to understand the underlying
causes of phenomena and seek objective reality and generalizations. A randomized
controlled trial (RCT) is a full experimental test of an intervention, involving random
assignment to treatment groups (Polit & Beck 2012), in which researchers play an
active role. Polit and Beck (2012) stated that a true RCT design is characterized by
three properties: manipulation, control and randomization.
Manipulation (the experimental intervention) means testing an intervention on some
people and withholding it from others. Control (the control condition) implies a group
(control group) of participants whose outcomes are used to compare with those of the
intervention group using the same instruments. A control group does not take part in
the intervention. Randomization, also known as random assignment, means that
everyone who fulfils the inclusion criteria has an equal chance of being assigned to the
intervention or control group. The purpose of random assignment is to have people
with the same characteristics in both groups (Polit & Beck 2012). In this thesis an RCT
design was chosen in order to compare and evaluate treatment outcomes of a
nurse-led rheumatology clinic and a rheumatologist-led clinic in patients with low
disease activity or in remission undergoing biological therapy. Accordingly, the
hypothesis of this RCT was that the treatment outcomes measured by the Disease
Activity Score 28 (DAS28) in patients with low disease activity or in remission, who
were undergoing biological therapy at a nurse-led clinic, would not be inferior to those
of patients attending a rheumatologist-led clinic at the 12-month follow-up.
Qualitative content analysis approach (paper IV)
Qualitative content analysis is a research method that provides a systematic means of
making valid inferences from verbal or written data in order to describe a specific
phenomenon (Krippendorff 2004). It is a widely used qualitative research technique
that comprises different approaches (Hsieh & Shannon 2005). When used with an
inductive approach, it aims to enhance the quality of findings by relating the categories
to the context in which the data were generated. Qualitative content analysis interprets
meaning from text data and hence belongs to the naturalistic paradigm. The method
can be applied to analyse a person’s experiences, reflections or attitudes, making it
suitable for nursing research (Downe-Wamboldt 1992). The researcher could gain a
richer understanding of a phenomenon using this approach. Qualitative content
analysis offers researchers a flexible, pragmatic method for developing and expanding
knowledge of the human experience of health and illness (Hsieh & Shannon 2005).
26
Content analysis initially involved an objective, systematic and quantitative description
of the manifest content of a text, but over time, it expanded to include interpretation
of the latent content (Graneheim & Lundman 2004). Both manifest and latent
qualitative content analysis deal with interpretation, but the interpretation varies in
term of the depth and level of abstraction. Manifest qualitative content analysis is
about the visible components of the text, i.e. what the text says, while latent analysis
concerns the interpreted meaning, i.e., what the text is talking about (Downe-
Wamboldt 1992, Graneheim & Lundman 2004). Using both latent and manifest
qualitative content analyses provides more insightful and meaningful findings than
either approach alone. The intention is to describe variations by identifying differences
and similarities in the content, which are formulated as categories and themes at
various levels, in which context plays a vital role. Qualitative content analysis was
chosen in order to reveal the variation and diversity in the study (Graneheim &
Lundman 2004). However, a text never contains one single meaning and interpretation
involves the most probable meaning from a particular perspective (Krippendorff
2004). In this thesis an explorative descriptive design based on an inductive qualitative
content analysis approach was selected in order to describe and explore patients’
experiences of a nurse-led rheumatology clinic for those undergoing biological therapy.
Context
The studies in this thesis were conducted at a rheumatology clinic in southern Sweden
with 5,500 outpatient visits annually by 3,500 patients, of whom 600 received
biological therapy either by intravenous infusions provided by a nurse or by
subcutaneous injections. A nurse-led rheumatology unit managed parenteral biological
therapies in patients who were prescribed subcutaneous injections or intravenous
infusions. The nurse provided patients with information about both subcutaneous and
intravenous therapy as well as support, monitoring and administration of the
intravenous infusions every 4-8 weeks. Patients who self-administered their biological
therapy by means of subcutaneous injections were allocated personal support from
nurse after one or two months. Self-administration took place once a week or every
other week depending on the medication prescribed. A team of rheumatologists,
nurses, physiotherapists, occupational therapists and social workers worked at the
clinic.
27
Participants (papers I-IV)
Patients with CIA undergoing biological therapy were included in the studies (Table 1).
During the first half of 2007 (paper I) and the first half of 2009 (paper II), 20 patients
who had received intravenous biological infusions and 20 patients undergoing
self-administered subcutaneous biological injections were invited and agreed to
participate in the studies. Between October 2009 and August 2010, 270 patients were
assessed by a rheumatologist, of whom 125 met the inclusion criteria and were invited
to participate in the trial (paper III) (Figure 2). Of these, 107 agreed to take part and
were randomly assigned to the nurse-led rheumatology clinic (intervention group;
n=53) or to the rheumatologist-led clinic (control group; n=54). Randomization took
the form of sealed envelopes containing assignment to one of the two groups and
when a patient met the inclusion criteria, an envelope was randomly picked. The power
analysis was based on the primary outcome DAS28 score. A mean difference of 0.6
was considered a moderate improvement, while a difference of 1.2 was deemed
clinically significant or good (van Riel et al. 1996). Based on a change of 0.6 in the
DAS28 score and a standard deviation (SD) of 1.0 (Rezaei et al. 2012), the power
analysis demonstrated that 95 patients would be sufficient to detect a clinically
moderate difference between groups at a 5% significance level with at least 90%
power. It was decided to include 107 participants to allow for the predicted 10%
dropout. Between September 2010 and April 2011, 20 patients who participated in the
nurse-led rheumatology clinic (paper III) were invited and agreed to take part in the
final study (paper IV). Strategic sampling in terms of sex, age, civil status, education,
duration of disease and duration of biological therapy was carried out in papers I, II
and IV in order to achieve variation in conceptions/experiences of the phenomenon
under study.
28
Figure 2. Flow chart of the recruitment and participants in the randomized controlled trial, with the intervention of a nurse-led rheumatology clinic, based on person-centred care (paper III).
Assessed for eligibility (n=270)
Did not meet inclusion criteria (n=145)Declined participation (n=18)
Randomized and pre-test (n=107)
Control group (n=54)
Analysed (n=50)
Follow-up at 12 months (n=47) Dropouts (n=3)
Follow-up at 6 months (n=53) Dropout (n =1)
Follow-up at 6 months (n=50) Dropouts (n =3)
Intervention group (n=53)
Follow-up at 12 months (n=50) Dropouts (n=3)
Analysed (n=47)
29
Intervention (paper III)
The purpose of the intervention was to replace one of the two annual rheumatologist
monitoring visits by a visit to a nurse-led rheumatology clinic in patients undergoing
biological therapy who had low disease activity or were in remission.
Rheumatologist-led clinic
The usual care for patients with CIA undergoing biological therapy in Sweden was
monitoring by a rheumatologist every 6 months in order to evaluate the
effect of the medication and disease activity measured by the DAS28. Data were stored
in the Swedish Rheumatology Quality Register (SRQ) (Ovretveit et al. 2013, van Vollenhoven & Askling 2005). The rheumatologist assessed disease activity by
examining tender and swollen joints according to a 28-joint count in addition to
evaluating the results of laboratory tests. The patients were able to contact the
rheumatology clinic between the scheduled follow-up visits.
Nurse-led rheumatology clinic
A nurse-led rheumatology clinic based on person-centred care was designed, where
five registered nurses with extensive professional experience of managing rheumatic
diseases in both in- and out-patient rheumatology care assessed patients’ disease
activity in the same way as a rheumatologist. The five nurses had undergone special
training from a rheumatologist and RA instructors (specially trained patients who
instruct healthcare staff how to examine the joints of the hands, wrists, feet and ankles
as well as providing information about living with the disease) to assess swollen and
tender joints based on the 28-joint count in order to make an evidence-based
assessment of disease activity. The patients were monitored by a rheumatology nurse
after 6 months and by a rheumatologist after 12 months. If necessary, the nurses could
contact the rheumatologist for advice or to obtain a prescription.
30
Data collection (papers I-IV)
The interviews (papers I, II and IV) started with the researcher clarifying the aim of
the studies. An open interview guide (papers I and II) with opening questions was
employed as a means of ensuring that similar data were gathered from all participants
(Kvale & Brinkmann 2009) in line with the phenomenographic approach (Marton &
Booth 1997). In paper IV the interviews took the form of a dialogue (Kvale &
Brinkmann 2009). The interviews were intended to facilitate an open conversation in
order to increase the understanding of patients’ experiences of the phenomenon. The
following opening questions were used in paper I: “What does it mean to you that a
nurse administers your regular intravenous infusions?”, “What does the concept
‘dependence’ mean to you?” and “How do you conceive being dependent on the nurse
who administers your medication?” In paper II the following opening questions were
used: “What does the administration of subcutaneous anti-TNF injections involve for
you?” “How do you conceive the independence provided by the fact that you yourself
can administer subcutaneous anti-TNF injections?” and “How do you conceive the
fact that you are not dependent on a nurse for your anti-TNF injections?” In paper IV
the opening question was “What are your experiences of the encounter with a nurse in
the nurse-led clinic?” In order to probe more deeply into a question, the participants
were asked to “tell more”, “How do you mean?” or “What do you have in mind when
you say…?”
In paper III data were collected at baseline, 6 and 12 months and entered into the
SRQ. The monitoring by the rheumatology nurse (intervention group) and the
rheumatologist (control group) included an assessment of swollen and tender joints
based on the DAS28. The participants indicated their perceived global health the
previous week (0–100, best to worst) on a 100 mm Visual Analogue Scale (VAS).
The Health Assessment Questionnaire (HAQ), VAS for pain and Numerical Rating
Scale (NRS) for assessment of satisfaction with and confidence in obtaining
rheumatology care were used. An assessment of disease activity, medication record,
employment status and any adverse events were also documented. The primary
outcome was change in disease activity measured by the DAS28 over a 12-month
period. All patients were monitored by the rheumatologist at baseline and after
12 months.
31
Measuring instruments (paper III)
Disease activity
Disease Activity Score 28 (DAS28)
The DAS28 is a validated index of RA disease activity (Prevoo et al. 1995) and a
composite measurement comprising patient reported [number of tender joints based
on the 28-joint count and global assessment, VAS for global health] and practitioner
reported [number of swollen joints based on the 28-joint count and erythrocyte
sedimentation rate (ESR) or C-reactive protein (CRP)] scores. The outcome of the
DAS28 is a number on a scale from 0 to 10, where the values >5.1, <3.2 and <2.6
indicate high disease activity, low disease activity and remission, respectively (Fransen
et al. 2004). The DAS28 is also used to measure disease activity in other inflammatory
joint diseases such as peripheral PsA and USpA (Fransen et al. 2006, Glintborg et al.
2011, Saber et al. 2010) as well as constituting a variable for evaluating disease activity
in patients treated by means of biological therapy (Vander Cruyssen et al. 2005). In this
trial the abbreviation DAS28 was used when the calculation included the ESR, while
DAS28-CRP was employed when the calculation included CRP and the correlation
between them was found to be good (Wells et al. 2009).
Activity limitation
Health Assessment Questionnaire (HAQ)
The HAQ is a validated questionnaire for assessing activity limitation in patients with
arthritis (Bruce & Fries 2003), which is self-administered and disease-specific. It
measures the ability to perform 20 items and assesses the degree of difficulty involved
in performing activities of daily living during the previous week. The activities are
grouped into eight categories of functioning: dressing, rising, eating, walking, hygiene,
reach, grip and usual activities. The total score ranges from 0 to 3 and a higher score
indicates a greater degree of disability (Ekdahl et al. 1988, Fries et al. 1980).
Pain
Visual Analogue Scale (VAS) for pain
The VAS is a validated scale for assessing pain in patients with chronic pain (Price et al.
1983) and provides a simple way to assess patients’ experienced pain. It was used in the
study to estimate pain during the previous week (VAS 0–100 mm). The anchor points
of the scale are 0 (no pain) and 100 (worst possible pain) (Huskisson 1974, Joos et al.
1991).
32
Satisfaction and confidence
Numerical Rating Scale (NRS) for satisfaction with and confidence in obtaining
rheumatology care
The NRS is used in patients with arthritis to assess satisfaction with and confidence in
obtaining rheumatology care (Moe et al. 2010). The questions in this study were: “How
satisfied are you with the rheumatology care?” with the anchor points being 0 (not at
all satisfied) and 10 (completely satisfied), and “How confident are you of obtaining
help from your rheumatology clinic when you have joint problems?” with the anchor
points 0 (no confidence) and 10 (complete confidence) (Eriksen et al. 2011, Moe et al.
2010).
33
Data analysis (papers I-IV)
Paper I
The analysis was performed on conceptions that dealt with the same or an
interconnected area identified in each interview as well as in the data as a whole
(Marton & Booth 1997). The data were processed by means of seven different steps
(Dahlgren & Fallsberg 1991, Sjostrom & Dahlgren 2002).
Familiarization
Each interview was listened to and the transcript read several times in order to become
familiar with and obtain an overall impression of the material.
Condensation
A search was made for statements corresponding with the aim of the study. These
statements were entered into the computer in the form of a table that clearly indicated
the interview from which they originated.
Comparison
The statements were analysed in order to identify differences and similarities. Those
with the same content were grouped together.
Grouping
The statements were grouped on the basis of their characteristic properties in order to
obtain a deeper understanding of the way in which they were connected and formed
conceptions.
Articulation
The conceptions were compared and grouped on the basis of similarities and
differences. The analysis moved back and forth between the preceding and actual step,
leading to three descriptive categories.
Labelling
The content of the conceptions that formed each descriptive category was discussed
with the co-researches, after which the categories were labelled.
Contrasting
The resulting descriptive categories were compared in terms of similarities and
differences in order to establish that each of them had a unique character and that they
were at the same level of description. Agreement about the final categories was
reached by a process called negotiating consensus, which corresponds to the
inter-judge reliability test often performed within the phenomenographic approach
(Wahlstrom et al. 1997).
34
Paper II
The data analysis was performed in seven steps (Larsson & Holmström 2007).
1. In the first step, the transcript text was read several times, on the first few
occasions while listening to the audio-recorded interviews.
2. In the second step, the whole text was reread and conceptions that
corresponded with the aim of the study were identified and marked.
3. The third step involved searching for conceptions of what patients focus on
and how they describe their experiences of being independent of a nurse for the
administration of subcutaneous anti-TNF injections, after which a preliminary
description of each patient’s dominant way of understanding the phenomenon
was formulated.
4. In the fourth step, the descriptions were grouped based on similarities and
differences in meaning, which resulted in descriptive categories. These
categories were compared in order to establish that each of them had a unique
character and the same level of description.
5. The fifth step involved searching for non-dominant ways of understanding the
phenomenon, i.e. statements in which the patients described other ways of
understanding it. This was undertaken to ensure that no aspect was overlooked.
6. In the sixth step, a structure was created from the resulting descriptive
categories, i.e., their outcome space, which constitutes the result of a
phenomenographic study.
7. In the seventh step, a metaphor was assigned to each descriptive category.
Paper III
Statistical analyses were performed using SPSS version 19.0 for Windows. Differences
in disease activity, activity limitation, pain, satisfaction with and confidence in
obtaining rheumatology care between groups were analysed by means of an
independent sample t-test and within the groups by a paired t-test. The analyses form
the basis of the results presented in this paper. Due to the nature of the VAS Pain,
HAQ, NRS satisfaction and NRS confidence scales, non-parametric analysis was also
conducted with similar results. Values of p< 0.05 were considered statistically
significant.
35
Paper IV
The analysis was performed in a seven-step process in accordance with Graneheim and
Lundman (2004). In the analysis process the intention was to remain close to the text,
preserve contextual meanings and continuously move between the whole and the parts
(Graneheim & Lundman 2004).
1. The entire text (unit of analysis) was read through repeatedly to obtain a sense
of the whole.
2. Meanings or phrases containing information relevant to the aim were identified
and extracted, together with surrounding text in order to preserve the context
(meaning units).
3. The meaning units were condensed to shorten the text while retaining the
content (condensed meaning unit).
4. The condensed meaning units were abstracted and coded.
5. The codes were grouped into subcategories.
6. The subcategories were grouped into categories that reflected the central
message contained in the interviews. These categories constituted the manifest
content.
7. The content of the categories was brought together and abstracted. A theme
reflecting the underlying meaning was formulated, constituting the latent
content.
36
Methodological considerations
The aim of this thesis required both qualitative (papers I, II and IV) and quantitative
methods (paper III). Qualitative and quantitative methods complement each other and
allow the researchers to generate different kinds of assumption about key phenomena
in i.g., rheumatology nursing (ontology) as well as about how to obtain and develop
knowledge of these key phenomena (epistemology) (Polit & Beck 2012, Rawnsley
1998). Trustworthiness is defined differently in qualitative and quantitative research
and ways of ensuring it also differ. In qualitative research, trustworthiness should be
based on four criteria: credibility, dependability, confirmability and transferability
(Lincoln & Guba 1985, Polit & Beck 2012), while in quantitative research it is defined
as: internal validity, reliability, objectivity and external validity (Polit & Beck 2012).
Trustworthiness in the qualitative studies (papers I, II and IV)
Credibility
Credibility can be regarded as internal validity, which in qualitative research refers to
confidence in the truth of the data and analysis (Polit & Beck 2012). The main author’s
profession as a rheumatology nurse and extensive experience of rheumatology nursing
enabled her to obtain rich data from the participants. However, the main author had
no caregiver contact with the participants, allowing them greater opportunity to be
open and honest in the interview. The voluntary nature of participation was
emphasized, so that they did not feel obliged to participate in order to satisfy their
caregivers. Credibility was strengthened by the use of open interview guides to assist
the participants to reflect on the phenomenon of dependence on/independence of a
nurse for the administration of biological therapy as well as their experience of the
nurse-led rheumatology clinic. The main researcher asked the participants to reflect on
their experience of the object of study and invited each participant to explain her/his
understanding in more detail. Follow-up questions were posed to avoid
misunderstanding and the participants were encouraged to talk openly. The same
opening questions were posed to all participants in each study. The interviews took
place in an undisturbed location chosen by the participants. The main researcher
performed all the interviews, which can be considered both a strength and a weakness.
The strength was that the interviews were conducted in the same way, while the
weakness was that the interviewer gained new insight into the phenomenon in the
course of the interviews, which might have influenced the follow-up questions.
37
Credibility was strengthened by the fact that two pilot interviews (papers I, II and IV)
and 18 interviews (thus a total of 20 interviews) were conducted in each study. No new
conceptions emerged after the seventh interview (paper I), no new descriptive
categories after the sixteenth interview (paper II) and no new subcategories after the
fourteenth interview (paper IV). Each conception was described by several participants
(papers I and II), and by the large number of meaning units described by several
participants (paper IV). The fact that the categories covered the data also increases
credibility. Strategic selection was employed, as the aim of phenomenographic (Marton
& Booth 1997) and qualitative content analysis (Graneheim & Lundman 2004) is to
identify variations, thus all content is relevant. Credibility was enhanced by careful
descriptions of the data collection and analysis. The researchers worked individually
and together throughout the analysis.
Dependability
Dependability can be regarded as the reliability of the research and in qualitative
studies refers to the stability of data over time and conditions (Polit & Beck 2012).
Dependability was strengthened by the fact that all interviews began with the same
opening question to ensure stability of data and facilitate comparison of the interviews.
The participants were encouraged to talk openly and explain their thoughts about a
concrete situation in which they had been involved. The main researcher conducted
and transcribed the interviews, while attempting to remain open to all variations in
experiences that were relevant to the aim. Dependability was enhanced by the fact that
the data analysis sought to identify the participants’ experiences of the phenomenon
while bearing in mind the aim of the study. Dependability was also strengthened due to
the co-researchers’ continuous discussions and great familiarity with the methodology
employed. The categories were compared and revised until the final classification
emerged (Dahlgren & Fallsberg 1991, Graneheim & Lundman 2004).
Confirmability
Confirmability can be regarded as objectivity of the research. In qualitative studies it
refers to the neutrality of the data, which ensures that the data represent the
information provided by the participants and that interpretations are not subject to the
researcher bias. The findings should reflect the participants’ voices (Polit & Beck
2012). Confirmability was demonstrated by the systematic and conscientious treatment
of the data; repeated reading, identification of and reflection on the content. All steps
of the analysis have been conscientiously reported and confirmability is enhanced by
the fact that the interviews were conducted and transcribed by the main researcher.
The participants’ experiences were described in as much detail as possible, while
quotations enhance and illuminate the content. The results reveal that the categories
are on the same contextual level but that their meanings are clearly delimited.
38
As a qualitative researcher, it is important to reflect on one’s own interpretations,
perspectives and values. It also means being open to the research and considering it a
learning process. In a successful qualitative research process, the relationship between
the researcher and the phenomenon being explored as well as the researcher’s
understanding of it develops (Polit & Beck 2012). Awareness of her pre-understanding
helped the main researcher to bracket it, while the co-researchers did not possess such
pre-understanding, thus preventing the risk of bias. Furthermore, the researchers
endeavoured to be aware of their attitudes and how they might affect the interviews
and analysis. A limitation could be the duration of the interviews; 30-60 minutes may
be too short. However, the interview texts were deemed rich and contained great
variety (Graneheim & Lundman 2004, Sjostrom & Dahlgren 2002).
Transferability
Transferability can be regarded as external validity and in qualitative research it
refers to the potential for extrapolation. Transferability in qualitative research means
that the study actually identifies and investigates the phenomenon that it set out to
study and that the context is described, thus allowing the results to be transferred to
similar contexts (Polit & Beck 2012). The participants were strategically selected to
obtain maximum variation in line with the phenomenographic (papers I and II)
(Marton & Booth 1997) and the qualitative content analysis approach (paper IV)
(Graneheim & Lundman 2004). Transferability can be deemed to be ensured due to
the fact that the selection took account of several variables; sex, age, civil status,
education, diagnosis, disease duration, administration methods, duration of biological
therapy and distance to the clinic. A limitation may be that all data were collected in
the same clinic. Providing that the strategic selection ensured variation within the
group of patients undergoing biological therapy, the results could be transferable to a
wider population. Morse (1999) claimed that in qualitative studies each participant is
purposefully selected to contribute increased knowledge to the research field. The goal
of qualitative research is to modify theory and transfer the knowledge gained, thus
generalizing it. It is essential that qualitative findings are generalizable, useful, powerful
and considerable (Morse 1999).
39
Trustworthiness in the quantitative study (paper III)
In view of the growing demand for evidence-based practice, RCTs are considered the
best design for testing the effect of nursing interventions, as they contribute strong
evidence about effects. Randomization and the use of a comparison group make the
trial as similar as possible to clinical practice. Thus in the present trial, replacing every
second visit to a rheumatologist with one to a rheumatology nurse and simulating
normal biological therapy follow-up care increased the possibility to implementing
such a clinic in everyday care. Although RCTs are sometimes criticized for their
artificiality (Polit & Beck 2012), the present intervention can be directly integrated into
the clinical routine. A difficulty with RCTs conducted in clinical settings is that those
in the intervention group take part in the intervention while those in the control group
do not. However, this problem did not arise, as the intervention was performed by
nurses who do not normally monitor biological therapy while the control group
received the usual rheumatologists care.
Internal validity
Internal validity concerns the degree to which it can be inferred that the experimental
intervention, rather than something else, is responsible for the outcome. Threats to
internal validity include selection, history and maturation, comprising possible events
or other changes that can influence the results (Polit & Beck 2012). Selection did not
pose a major problem, as there were no significant differences in demographic and
clinical characteristics between the participants in the two groups. A history and
maturation affected both randomized groups, it was not a typical threat in this trial. A
threat to internal validity is loss of data due to dropouts. In this trial 107 patients were
enrolled from 125 potential participants (86%). The retention rate was high, with 90%
completing the 12-month follow-up for whom we obtained a full set of data. The
dropout rate was acceptable and understandable; 11% in the intervention group and
7% in the control group. Dropout was due to moving to another location, death and
medical reasons. The trial was not blinded, which constitutes a limitation. Blinding of
participants and nurses/rheumatologists was practically impossible, but we were able
to ensure that the nurses could not influence recruitment, randomization or data
analysis (Lindsay 2004) and did not take part in any aspect of the research process
other than the intervention itself. The rheumatologists invited patients who met the
inclusion criteria to participate in the trial and those who accepted were randomized to
the intervention or control group. The researchers were not involved in the
intervention or assessment of the patients. Internal validity can be enhanced through
judicious design and analytical decisions. The structure of the nurse-led clinic was
designed for the trial, and both the nurses and the rheumatologists adhered to national
and international guidelines for management and treatment of biological therapy in
40
patients with CIA. The main outcome, disease activity, was measured by means of the
DAS28 which is the gold standard in Sweden (van Vollenhoven & Askling 2005),
Europe (Furst et al. 2012) and North America (Singh et al. 2012). A limitation was the
short time perspective (12-month) as a two-year follow-up is ideally to reveal the
long-term outcome. Furthermore, data were registered in the SRQ and most of the
questionnaires had been previously used for evaluation of biological therapy, thus
internal validity was ensured by using standardized and validated instruments.
Reliability
Reliability concerns the accuracy and dependability of information obtained in a trial,
i.e. instruments must be stable and consistent over time and the result possible to
reproduce using a similar methodology. The stability of an instrument is assessed by a
test-retest procedure and internal consistency by whether the sub-sections measure the
same information. Equivalence, which is an assessment of the degree to which two or
more independent investigators agree about the scoring of the instrument, is also
important when studying the reliability of a trial (Polit & Beck 2012). To prevent a
threat, the instruments must have good or acceptable reliability and validity. The main
outcome, disease activity, was measured by means of the DAS28, a validated
instrument (Prevoo et al. 1995), that together with the other used validated instruments
HAQ (Bruce & Fries 2003) and VAS pain (Price et al. 1983) are common in daily
clinical monitoring of biological therapy in Sweden, Europe and North America. The
present trial can be reproduced with similar methodology. All rheumatologists are
familiar with the instruments, as are all patients, due to using them at every clinical
visit. The main advantage of using a composite measurement is the wider applicability
to various patient groups and the smaller sample needed in clinical trials to obtain the
same power to detect a difference between groups (van der Heijde & Boyesen 2012).
Objectivity
Objectivity concerns confirmability, which means that the findings from a trial must be
derived from the participants and context as opposed to the researchers’ biases, thus
making it possible for other researchers to arrive at similar conclusions (Polit & Beck
2012). Objectivity is promoted by the use of standardized instruments that prevent the
researcher from influencing the interpretation of results. All participants in both the
intervention and the control group answered the questionnaires at the clinic before the
monitoring visit at the rheumatologist or the rheumatology nurse as they were
accustomed to doing. Data were registered in the SRQ with the exception of level of
satisfaction with and confidence in the rheumatology care, thus the trial simulated
normal follow-up care of biological therapy, which increases the possibility for an
independent researcher to arrive at similar conclusions.
41
External validity
External validity concerns the extent to which evidence from RCT settings can be
generalized to real-world clinical practice setting (Polit & Beck 2012). Previous
research focusing on conventional therapies indicated that consultation with an expert
rheumatology nurse in a drug monitoring clinic may add value in terms of improving
patients’ perceived ability to cope with arthritis (Ryan et al. 2006b). Implementation of
nursing consultations as part of follow-up care in patients with stable RA is
recommended (Primdahl et al. 2012). This trial included patients with CIA and low
disease activity or in remission, which is a broader population than that in previous
research, where the majority of participants had been diagnosed with RA. Our trial
included patients who exhibited an insufficient response to conventional therapies,
thus making biological therapy necessary. If rheumatology nurses receive specialized
training to undertake an extended role, we believe that this trial is applicable to
monitoring more therapies other than biological and also in a wider population.
42
Ethical considerations
This research conforms to the ethical principles for medical research on human beings
set out in the declaration of Helsinki (WMA 2008) and the national guidelines on
ethical principles (Swedish Research Council 2011). The operations manager at the
hospital approved the studies. The Local Ethics Committee at Halmstad University,
Sweden, issued a guiding statement: (No. 90-2006-2508) (paper I). Permission was
obtained from the regional Ethics Committee at Lund University, Sweden for
papers II (No. 594/2008), III (No. 2009/245) and IV (No. 2010/283). Paper III was
registered at http://clinicaltrials.gov with the identification number NCT01071447.
According to the Northern Nurses’ Federation (2003), this thesis fulfils the four
requirements on research: information, consent, confidentially and safety of the
participants and is guided by the following four ethical principles: autonomy,
beneficence, non-maleficence and justice (Northern Nurses’ Federation 2003).
Autonomy
The principle of autonomy is safeguarded by respecting voluntariness, informed
consent and the right to withdraw from the research at any time. Autonomy also
involves confidentiality. The participants (papers I, II, III and IV) received verbal and
written information about the aim of the research, including the fact that participation
was voluntary and that they could withdraw from the study at any time without any
explanation and with no consequences for their continued care. All participants who
agreed to take part provided written informed consent and confidentiality was
guaranteed. For reasons of confidentiality, the interviews (papers I, II and IV) were
tape-recorded, transcribed verbatim and coded to protect the participants’ identity and
the questionnaires (paper III) were coded so as to protect the confidentiality of the
participants.
Beneficence
The principle of beneficence or doing good implies that the research should be of
potential benefit to the participants or similar groups. All patients invited to participate
in the interviews (papers I, II and IV) agreed and several expressed that it was positive
to have had the opportunity to talk about the impact of biological therapy on their life
situation. When setting up an interventional trial, the hypothesis must be to benefit
participants. The hypothesis (paper III) was that the treatment outcomes for the
43
patients at a nurse-led rheumatology clinic would not be inferior to those obtained by a
rheumatologist-led clinic at the 12-month follow-up. The utility of the research lies in
improving the quality of care in patients with CIA undergoing biological therapy.
Non-maleficence
The principle of non-maleficence or not causing harm implies that the research must
not have harmful effects on the participants. Interviews can give rise to emotional or
psychological distress. Immediately after the interviews (papers I, II and IV), the
participants were given the opportunity to discuss any emotions or thoughts that had
emerged with staff who possessed the necessary knowledge to deal with their
concerns. The nurses who participated in the trial (paper III) had extensive experience
of rheumatic diseases and had on several occasions received education from both a
rheumatologist and RA instructors (specially trained patients who instruct healthcare
staff about how to examine the joints). In addition, the patients had low disease
activity or were in remission, meaning that they had few or no swollen or tender joints.
Justice
The principle of justice means that it is the duty of the researcher to protect vulnerable
groups, ensure that they are not exploited and that all participants are treated equally,
i.e., a control group should not be denied effective treatment. The goal of nursing
research is to increase knowledge of the potential for helping all patients. Before the
interviews (papers I, II and IV), strategic sampling was carried out to ensure variation,
i.e., participants who differed from each other in term of sex, age, civil status,
education, duration of disease and duration of biological therapy were asked to
participate, in order to contribute variations in experiences of the phenomenon under
study. All participants in the RCT (paper III) had the same opportunity to attend the
nurse-led rheumatology clinic intervention. The nurses who participated in the trial
received education and the participants had stable CIA, low disease activity or were in
remission, meaning that they had few or no swollen and tender joints. If necessary, the
nurse could contact the rheumatologist for consultation or the participants could be
referred to the rheumatologist clinic. The control group received standard care.
44
Summary of the findings
This thesis explored, described and evaluated rheumatology nursing in patients
undergoing biological therapy from a person-centred care perspective with focus on:
how patients experienced their dependence on or independence of a rheumatology
nurse for the administration of biological intravenous infusions and subcutaneous
injections, how a nurse-led rheumatology clinic based on person-centred care could
replace a visit to a rheumatologist-led clinic for the monitoring of biological therapy
and how patients experienced the nurse-led rheumatology clinic.
Patients’ dependence on a nurse for the administration of their intravenous anti-TNF therapy (paper I)
Three descriptive categories and seven conceptions emerged. Patients experienced that
their dependence on a rheumatology nurse for the administration of intravenous
anti-TNF therapy afforded security, created involvement and was invigorating. The
patients conceived security due to continuity and a competent nurse who provided
information that enabled them to manage daily life. The realization that the
rheumatology nurse provided care for them, knew and treated them as persons
influenced the patients on a personal level and afforded them security. Furthermore,
increased well-being was present when the nurse provided individual care. The
encounter with a competent and committed rheumatology nurse also created
confidence and trust. The sharing of information and experiences with the nurse and
fellow patients afforded security. The patients’ experienced that their dependence
created involvement. The opportunity to influence the anti-TNF therapy and thus gain
the freedom to live without too many restrictions meant that the patients conceived
that they were involved in the treatment. The patients described the nurse’s
accessibility and flexibility and ability to deal with administration, care and
coordination with other health care professionals. This provided a sense of freedom, as
the patients did not need to think about their treatment between infusions nor perform
the treatment themselves. Dependence on a rheumatology nurse for the administration
of intravenous biological therapy invigorates. Relaxation and being encountered in a
peaceful environment were necessary prerequisites for gaining new energy in everyday
life. The patients experienced the administration of infusion as relaxation and appreci-
ated the opportunity to have some time to themselves, which they considered essential.
They emphasized that a peaceful and beautiful environment had a beneficial influence
(Table 2).
45
Table 2. Patients’ dependence on a rheumatology nurse for the administration of intravenous anti-TNF therapy illuminated by means of conceptions and descriptive categories.
Conceptions Descriptive categories
Encountering continuity Encountering competence Obtaining information
Dependence that affords security
Being allowed influence Being given freedom
Dependence that creates involvement
Obtaining relaxation Encountering the environment
Dependence that invigorates
46
Patients’ independence of a nurse for the administration of subcutaneous anti-TNF therapy(paper II)
Four metaphors that facilitated understanding of how patients experienced their
independence of a nurse for the administration of subcutaneous anti-TNF therapy
emerged: the struggling patient, the learning patient, the participating patient and the independent patient. The struggling patient described being restricted by the injections,
preferring the relationship with a rheumatology nurse. In this descriptive category, the
conceptions focused on striving for independence. However, injecting medication into
their own body and the pain involved gave rise to worry and influenced their
motivation. They were willing to administer the subcutaneous injections themselves, as
the medication was good, but the discomfort it caused made every injection a struggle
between reason and emotion. They worried that they would not inject themselves
properly and missed regular contact with a rheumatology nurse. The learning patient
experienced that self-administration of subcutaneous injections was a learning process
the increased her/his knowledge and competence. In this descriptive category, the
conceptions focused on learning as a means of achieving independence. The patients
experienced security with this form of treatment, and their independence of others
made them grow as human beings. When they needed information, they contacted a
nurse and self-administration became a habit and routine. The participating patient
experienced control over her/his life by administering the subcutaneous injections
themselves. The focus of this descriptive category was patient participation in the form
of treatment that provided independence. Participation was interpreted as the
opportunity to influence one’s life by taking control of the administration of the
injections as well as by complying with instructions. Involvement provided them with
security and flexibility both in terms of the treatment and decisions. The independent
patients experienced that they could manage their lives and live independently by
administering the subcutaneous injections themselves. The conceptions in this
descriptive category focused on the freedom provided by self-administration. They
stressed that managing the treatment gave them a feeling of freedom, which included
independence of other people and not having to plan their lives according to
appointments with a nurse. Thus, the patients experienced self-administration as
liberating as it led to independence, which is a matter of course for those who do not
need regular medication (Figure 3).
47
Figure 3. Metaphors of how patients experienced their independence of a nurse for the administration of subcutaneous anti-TNF therapy.
The struggling patient
The learning patient
The participating patient
The independent patient
48
A nurse-led rheumatology clinic for monitoring biological therapy (paper III)
In accordance with our hypothesis, treatment outcomes measured by DAS28 in
patients with low disease activity or in remission whose biological therapy was
monitored at a nurse-led clinic were not inferior to those obtained at a
rheumatologist-led clinic at the 12-month follow-up.
Disease activity was assessed by the DAS28 and DAS28-CRP total score. There were
no statistically significant differences in changes in the DAS28 (p=0.66) or
DAS28-CRP (p=0.70) between the intervention and control group. Within both
groups there were small but not clinically relevant deteriorations in the DAS28 score
(intervention group 0.14; p=0.19; control group 0.20; p=0.048) between baseline and
the 12-month follow-up.
Limitations in performing the activities of daily living were measured by the HAQ.
There were no statistically significant (p=0.79) differences in mean change after 12
months in the HAQ or in pain assessed by VAS (p=0.95) between the groups. Nor
were there any statistically significant differences between them after 12 months in
terms of satisfaction with (p=0.43) and confidence (p=0.42) in obtaining rheumatology
care. Within the intervention group and the control group there were no statistically
significant mean changes in HAQ, VAS pain, satisfaction with or confidence in
obtaining rheumatology care (Table 3).
49
Table 3. Comparison of mean change after 12 months between and within the
intervention group (I.G. = Nurse-led rheumatology clinic) (n=47) and control
group (C.G. = Rheumatologist-led clinic) (n=50).
DAS Diseases Activity Score (scale 0-10), ESR Erythrocyte Sedimentation Rate, CRP C-reactive protein, Swollen and Tender joint (28 count), VAS Visual Analogue Scales, VAS GH Global health
(scale 0-100 worse to best), VAS Pain (scale 0-100 best to worse), HAQ Health Assessment Questionnaire (0-3 best to worse), NRS Numerical Rating Scale Satisfaction and Confidence (0-10 worse to best).
Independent sample t-test for comparison between and Paired t-test for comparison within the groups.
(95% CI)
(95% CI)
C.G.
Mean
change
I.G. vs. C.G.
Mean difference
of change
I.G.
Mean
change
(95% CI)
-0.07; 0.34 0.00; 0.39 0.20 DAS28 -0.06 0.14 -0.34; 0.22
-0.03; 0.31 -0.07; 0.26 0.10 DAS28-CRP 0.05 0.14 -0.28; 0.19
-0.40; 2.57 -0.36; 4.64 2.14 ESR (mm/h) -1.05 1.09 -3.97; 1.86
CRP (mg/L) -1.07 -2.02; -0.12 0.13 -0.10; 0.35 1.20 0.29; 2.10
Swollen joints 0.13 -2.18; 0.61 0.13 -0.27; 0.53 0.00 -0.29; 0.29
Tender joints 0.33 -0.47; 1.13 0.47 -0.05; 0.99 0.14 -0.47; 0.75
VAS GH (mm) 4.29 -2.58; 11.16 2.49 -2.59; 7.56 -1.80 -6.57; 2.97
VAS Pain (mm) -0.24 -7.89; 7.40 0.98 -4.74; 6.69 1.22 -4.02; 6.47
HAQ 0.02 -0.10; 0.13 0.04 -0.04; 0.12 0.02 -0.05; 0.10
NRS Satisfaction 0.25 -0.37; 0.88 -0.19 -0.57; 0.18 -0.44 -0.94; 0.06
NRS Confidence 0.20 -0.29; 0.69 0.00 -0.22; 0.22 -0.20 -0.63; 0.23
50
Patients’ experiences of a nurse-led rheumatology clinic (paper IV)
One theme, three categories and six subcategories emerged. The nurse-led
rheumatology clinic, based on person-centred care provided added value due to the
patients experiencing security, familiarity and participation. The rheumatology nurse’s
competence in assessing disease activity and knowledge of the disease and treatment
created a sense of security. The patients perceived that the rheumatology nurse’s care
complemented that of the rheumatologist and added a new dimension. The
rheumatology nurse did not see the patients as someone with a diagnosis but as a
whole human being. For their part, the patients experienced a sense of security by
having their life situation highlighted from various perspectives in addition to
encountering different professional categories. The patients also described accessibility
and flexibility on the part of the rheumatology nurse who was there when they needed
help. Familiarity was present when the patients received confirmation. Caring about
and taking an interest in the patients’ life situation and seeing them as persons were
important for experience of trust. The rheumatology nurse was perceived as being
more on the same level and closer to them than the rheumatologist, which contributed
to the development of a valuable relationship. Moreover, the rheumatology nurse
respected the patients’ integrity and exhibited consideration, which was emphasized as
an important piece of the jigsaw puzzle that made the rheumatology care complete.
The patients experienced sensitivity in the conversation with the rheumatology nurse
and dared open up when the latter listened attentively to details of their illness
experience and life situation. The patients experienced participation due to sharing
information and experiences with the rheumatology nurse. The nurse – patient
encounter represented a learning opportunity for both parties and contributed to
patients’ sense of participation. The rheumatology nurse involved them in a dialogue
about planning and examination, which led to awareness of the disease and treatment.
This dialogue allowed an opportunity for reflection, whereby the patients could analyse
and play a more active role in the management of their disease, making them co-actors
in the care, which was important for the experience of participation
(Table 4).
51
Table 4. An overview of the subcategories, categories and theme that emerged from the qualitative content analysis of patients who attended a nurse-led rheumatology clinic.
Subcategories Categories Theme
Patients experienced competence Experiencing security
The nurse-led rheumatology clinic,
based on person-centred care
provided added value to
patient care
Patients experienced accessibility
Patients experienced confirmation
Experiencing familiarity Patients experienced sensitivity
Patients experienced exchange of information
Experiencing participation
Patients experienced involvement
52
Discussion
This thesis demonstrates the importance of person-centred care in the rheumatology
nursing of patients undergoing biological therapy. During illness and treatment,
patients constantly have to adapt themselves to new situations and strive to achieve a
good life (Bergsten et al. 2011), which lead to balancing and adapting in the whole life
situation (Gronning et al. 2011, Ohman et al. 2003). The encounter with the
rheumatology nurse who has a person-centred care approach creates a sense of
security and familiarity that enables patients to narrate their experience of the illness
and how it influences daily life. When patients are seen as capable persons who can
narrate about and assume responsibility for their actions, there is participation in care
and the patients experience independence. However, in most cases a person is only a
patient for a short period of her/his life during which the nurse can play an important
role by creating a safe and familiar relationship, as well as opportunities for
participation and independence. Person-centred care in rheumatology nursing in
patients undergoing biological therapy can be based on the findings of this thesis,
namely the concepts of security, familiarity, participation and independence
(papers I, II and IV).
Person-centred care creates security
Person-centred care concerns seeing the person behind the illness and requires
knowledge of her/his life and needs (Ekman et al. 2011). The participants in the studies
in this thesis described how the rheumatology nurse treated them as persons (papers I
and IV), confirmed their experiences of illness and was sensitive to their needs. They
perceived that the rheumatology nurse’s care complemented that of the rheumatologist
and added a new dimension. The rheumatology nurse did not see the patients as
someone with a diagnosis but as a whole human being (paper IV). Accessibility and
continuity are important tools for enhancing healthcare (Arthur & Clifford 2004b, Bala
et al. 2012, Ek et al. 2011). Patients considered the relationship with the rheumatology
nurse important, while continuity provides the opportunity to establish a confidential
and long-standing relationship (papers I and IV). The rheumatology nurse tends to be
more accessible to patients than the rheumatologist and can facilitate access to other
team members. On the basis of the nurse accessibility, patients find it easier to discuss
professional, sexual or other personal issues with the rheumatology nurse, who can
then gain a more complete picture of the patient’s problems. The participants
expressed the importance of knowing where to turn when they wanted a heart-to-heart
conversation and recognized that the rheumatology nurse saw the entire person
53
(papers I and IV). Patients value a holistic assessment (Arvidsson et al. 2006) with
quality and continuity in their care (Arvidsson et al. 2006, Temmink et al. 2000). A
nurse-led rheumatology clinic that administers and monitors patients’ biological
therapy (paper I) and assesses disease activity (paper III) constitutes advanced nursing.
The rheumatology nurse’s competence is a vital component in patients’ experience of
security. The participants underlined the rheumatology nurse’s medical and technical
competence as important factors that contributed an extra dimension in the
comprehensive care. Person-centred care and the rheumatology nurse’s holistic view
were also valued (papers I, III and IV). Patients who encounter a competent
rheumatology nurse are more satisfied than those who receive traditional care (Arthur
& Clifford 2004a). The findings of this thesis (paper III) are in accordance with the
WHO’s recommendation for the introduction of advanced practice roles for nurses
(WHO 2010).
Person-centred care creates familiarity
Person-centred care is a way of seeing patients as a whole person and confirming their
experiences of the illness (Edvardsson et al. 2008). In accordance with Ryan et al.
(1996), the participants valued the nurse’s holistic approach comprising physical, social,
mental and spiritual aspects. They also expressed positive feelings relating to their
encounter with the rheumatology nurse and her/his skill that enabled them to feel
important and cared for (papers I and IV). Patients experienced being seen and
confirmed in the holistic approach of the rheumatology nurse’s care (Ryan et al. 2006a),
something that patients who did not meet the rheumatology nurse lacked (paper II).
The participants experienced familiarity due to being confirmed by the rheumatology
nurse. Nurses, who cared about, took an interest in the patients’ life situation and saw
them as persons were important for experiencing trust. In person-centred care, the
rheumatology nurse respected the patients’ integrity and exhibited consideration
(papers I and IV). Optimal care should focus on the person’s needs and perspectives
both in terms of the role and skills of the rheumatology nurse and the way care is
organized (Bala et al. 2012). Person-centred care means that the encounter between
nurse and patient takes place at an individual level, thus promoting the patients’
self-image and identity (Ternstedt et al. 2012). The nurse’s knowledge of each
individual patient contributes to the feeling of familiarity (Larsson et al. 2011). It is also
acknowledged that the relationship between the nurse and patient is essential for the
experience of familiarity and a way to provide care that is tailored to the person (Ryan
et al. 2003). When the care is provided in a calm and secure environment with a
person-centred care approach, the opportunity for a good dialogue between the
rheumatology nurse and the patient is strengthened (paper I), which finding is
supported by Ek et al. (2011). The participants experienced sensitivity in the
conversation with the rheumatology nurse and dared open up to her/him, as she/he
54
listened attentively to their illness experience and life situation. They narrated that it
was easier to open up to the rheumatology nurse than to the rheumatologist, especially
when they wished to discuss sensitive matters and everyday issues (papers I and IV),
which is in accordance with Arvidsson et al. (2006).
Person-centred care creates participation
Person-centred care emphasizes the importance of knowing the person behind the
patient as a unique person with her/his own will, emotions and needs. Seeing the
person means to putting the person before the disease and engaging with the patient as
a co-actor in the care by sharing both power and responsibility (Ekman et al. 2011).
Important components of person-centred care are supporting the rights, values and
beliefs of the person and involving patients in shared decision-making (Edvardsson et
al. 2008). Person-centred care is the initiation of a partnership by means of the
patients’ narratives, as well as integrating it by sharing information, deliberation and
decision-making (Ekman et al. 2011). The participants experienced participation in the
administration and monitoring of their biological therapy (papers I, II and IV). The
rheumatology nurse has to understand the patients’ situation and see the world from
their perspective. Having influence and taking part in decision-making regarding the
disease and treatment are important for the experience of participation and making the
patients co-actors in the care (papers I, II and IV). A prerequisite for participation is
active involvement on the part of both patient and nurse. Partnership and
collaboration between patient and nurse is essential for good care (Sahlsten et al. 2007,
Sahlsten et al. 2008) in which patients are regarded as co-actors (Larsson et al. 2011).
The participants experienced participation despite being dependent on a nurse for the
administration of their intravenous biological infusions. The rheumatology nurse’s
flexibility led to a sense of being a co-actor. Participation was interpreted as the
opportunity to influence one’s life by allowing influencing in planning of the next
intravenous infusions and the arrangements for the treatment (paper I), by taking
control over the administration of the injections and complying with instructions
(paper II). When monitoring biological therapy in the nurse-led rheumatology clinic
based on person-centred care (paper III), the rheumatology nurse involved patients in
the planning and examination by means of dialogue. This led to awareness of the
disease and treatment as well as encouraging them to reflect, whereby the patients had
an opportunity to analyse and take a more active role. They became co-actors in the
care, which is important for the experience of participation (paper IV). The
rheumatology nurse must ensure that patients are co-actors in the care process,
whereby they dare to make their own decisions in relation to their disease, treatment
and the activities of daily living (Arvidsson et al. 2006). In person-centred care it is
important to promote patients’ self-determination (Ternstedt et al. 2012). This thesis
55
reveals that in person-centred care the role of the nurse has developed from that of an
expert advisor to a co-actor, where the patients are necessary and equal participants
(Edwards 2002).
Person-centred care creates independence
Person-centred care means promoting a good life, which includes making the patient
feel valued and respected, thus promoting a sense of power and control (Edvardsson et
al. 2008, Ternstedt et al. 2012). The participants in the present thesis experienced that a
nurse-led rheumatology clinic added value to patient care due to the rheumatology
nurse’s ability to provide confirmation, be sensitive and involve them in the care
(paper IV). A central component of person-centred care is the patient and nurse
developing a care and treatment plan together, based on each patient’s narrative
(Ekman et al. 2011). Despite the fact that the participants were dependent on a nurse
for the administration of their intravenous biological infusions, they experienced
freedom because they did not have to think about their treatment between nor
perform the treatment themselves (paper I). Participants who experienced a positive
effect from their subcutaneous biological injections obtained double freedom, due to
being able to care for themselves and be independent of a rheumatology nurse
(paper II). As in the study by Delmar et al. (2006), the participants did not express any
contradiction between independence and dependence. They received person-centred
care, and their narratives constituted a vital part of the encounter with the
rheumatology nurse. The nurse-led rheumatology clinic based on person-centred care
focusing on the whole person proved effective, safe and fruitful (papers III and IV).
Person-centred care formed the core of patients’ desire to be independent despite a
chronic disease (papers I, II and IV). Independence provides a sense of freedom. The
striving for independence is closely linked to the need for support and respect from
other people, but also to responsibility and the ability to control treatment and thus
everyday life. This need differs between persons (Ingadottir & Halldorsdottir 2008)
and therefore person-centred care provides a means of allowing them to experience
independence.
56
Comprehensive understanding
Rheumatology care is based on the individual patient and both pharmacological and
non-pharmacological treatment is tailored to her/his need to control the inflammation
process and minimize joint damage with the intention of improving physical function.
Treatment is guided by guidelines based on mainly objective data such as clinical
findings, laboratory analyses and imaging (Furst et al. 2012, Smolen et al. 2010, Vliet
Vlieland & Li 2009, Vliet Vlieland & Pattison 2009), which entails a skewed position of
power in which patients are told what to do and which form of treatment is
appropriate. This approach is changing to a more patient-initiated care (Hewlett et al.
2005b) and the role of the rheumatology nurse has developed and become more
holistic (Roussou et al. 2012). The EULAR recommendations for the role of the nurse
in the management of CIA states that the rheumatology nurse should promote
self-management skills to enable the patients to have a greater sense of control,
self-efficacy and empowerment (van Eijk-Hustings et al. 2012). Empowerment is a
process that involves the patients in decision-making and action, thus creating a
balance of power (Tengland 2008), which in turn requires a person-centred care
approach that encourages patients to become co-actors that recognizes their abilities
(Morgan & Yoder 2012, Sahlsten et al. 2008). A paradigm shift is taking place in
rheumatology nursing and a person-centred care approach is gradually being integrated
into daily care routines (Bala et al. 2012).
This thesis describes the importance of person-centred care in rheumatology nursing.
When monitoring biological therapy, a nurse-led rheumatology clinic, based on a
person-centred care, with a competent and available rheumatology nurse is a secure
and familiar base that increases patient participation and independence.
A person-centred care approach is based on interdependence between patient and
rheumatology nurse. The patients are dependent on the nurse’s professional
knowledge about disease and treatment and in some case for administration of
intravenous infusions. In order to provide a good and safe care, the rheumatology
nurse is, in turn, dependent on the willingness of the patients to share their illness
narrative with her/him. Thus, interdependence and an equal relationship between
patient and rheumatology nurse are essential for the development of an optimal
partnership, which is the goal of person-centred care (Ekman et al. 2011).
Person-centred care is characterized by four underlying concepts; holistic care,
individualized care, respectful care and empowering care (Morgan & Yoder 2012).
Rheumatology nursing will be further developed by a person-centred care approach.
57
Figure 4. Person-centred care is the core of rheumatology nursing that creates
and strengthens security, familiarity, participation and independence in patients
undergoing biological therapy in an ongoing interactive process.
Rheumatology
nurse
Patient
Security
Familiarity Independence
Participation Person-centred
care
When providing holistic care, the rheumatology nurse sees the patient as a whole
person with skills and resources who lives in a personal context. Being seen as a whole
person who has expertise creates an encounter between two persons who are experts:
the patient on her/his illness and life situation and the rheumatology nurse in her/his
profession (Sahlsten et al. 2007). This encounter between two experts leads to a sense
of security and familiarity for the patient that enables participation and independence.
Respectful care is also a prerequisite for an equal relationship based on mutual respect
between patient and rheumatology nurse. When the rheumatology nurse listens
sensitively to the patients’ narratives that form the basis of care, it creates a sense of
security and familiarity that leads to patient participation and independence. In
individualized care based on the person’s resources and needs, the rheumatology nurse
works and plans through mutual negotiation with the patient. This mutual negotiation
leads to a sense of security and familiarity and promotes patient participation and
independence (Sahlsten et al. 2007). Empowering care is intended to increase the
patients’ capacity to think critically and make independent and well considered care
decisions. The rheumatology nurse should facilitate and assist patients to use their own
58
innate ability to gain control over their life situation (Anderson & Funnell 2010, Hill &
Hale 2004). Furthermore, empowering care means creating a partnership between
patient and rheumatology nurse due to the rheumatology nurse’s involvement,
invitation to dialogue and exchange of information and experience with the patient.
For their part, patients become co-actors and experience a sense of security and
familiarity, leading to participation and independence.
Patients’ experience of security is closely related to that of familiarity. Security and
familiarity interact and increase in person-centred care. When patients experience
security and familiarity in their care, they become empowered to participate in it, which
in turn enhances their sense of independence. Furthermore, participation and
independence interact and are strengthened, leading to security and familiarity. This is
an ongoing process in which person-centred care is the core that generates positive
interaction. This thesis demonstrates that person-centred care is essential in
rheumatology nursing, as it creates and strengthens security, familiarity, participation
and independence in patients undergoing biological therapy (Figure 4).
59
Conclusions
The conclusions of this thesis are:
Patients undergoing intravenous biological therapy conceived regular contact
with a rheumatology nurse as invigorating, as well as providing security and
involvement (paper I).
Patients undergoing biological therapy valued being seen as a person by the
rheumatology nurse (papers I and IV).
Patients undergoing subcutaneous biological therapy struggled to participate
and achieve independence in their life (paper II).
Rheumatology nurses can support patients undergoing biological therapy in
their struggle for participation and independence (papers I, II and IV).
Rheumatology nurses can monitor biological therapy in patients with stable
CIA with comparable safety and effectiveness as a rheumatologist (paper III).
Rheumatology follow-up care of patients undergoing biological therapy could
be improved by a nurse-led rheumatology clinic based on person-centred care
as a complement to a rheumatologist-led clinic (papers III and IV).
Patients undergoing biological therapy experienced that a nurse-led
rheumatology clinic based on person-centred care provided added value and led
to a sense of security, familiarity and participation (paper IV).
Person-centred care is the core of rheumatology nursing and creates security,
familiarity, participation and independence in patients undergoing biological
therapy.
Person-centred care leads to an equal relationship between patient and
rheumatology nurse that strengthens security, familiarity, participation and
independence in patients undergoing biological therapy in an ongoing
interactive process.
Rheumatology nursing will be further developed with a person-centred
care approach. This thesis supports the implementation of person-centred care
in rheumatology nursing in patients undergoing biological therapy.
60
Clinical and research implications
When caring for patients with CIA undergoing biological therapy in clinical practice, it
is important to see every patient as a unique person. This means giving patients the
opportunity to talk about themselves as a person and allowing their illness narrative to
constitute a starting point for collaboration. Person-centred care is essential as a
nursing philosophy as well as an approach to providing rheumatology nursing care.
Person-centred care emphasizes the importance of knowing the person behind the
patient and treating her/him as a unique person with her/his own will, emotions,
needs and resources, who is an expert on her/his illness and life situation. In clinical
care it is important to enhance the quality of the dialogue in the mutual negotiation
between the two persons who are experts. Future research should evaluate
person-centred care from the perspectives of both health care professionals and
patients using validated instruments.
Due to the lack of time and money in clinical practice it is important to involve
patients in their care and use their resources in the best possible way. A nurse-led
rheumatology clinic based on person-centred care is one way of achieving this
objective. Person-centred care is designed to encourage and empower patients to play
an active role in their care and treatment as co-actors. A rheumatology nurse, who
employs a person-centred care approach can be a key to reducing costs without
affecting quality of care. A nurse-led rheumatology clinic can save money and will
enable rheumatologist to prioritize and allocate more time to patients in the early
stages of the disease or who have high disease activity and require more frequent
monitoring or changes in medication. The cost-effectiveness of replacing
rheumatologists with rheumatology nurses for the monitoring of biological therapy in
patients with low disease activity or in remission should be evaluated. Such an
evaluation should mainly focus on health related quality of life and the
cost-effectiveness of a nurse-led rheumatology clinic for monitoring biological therapy
in patients with stable CIA. Future research needs to evaluate the long-term effect and
cost-effectiveness of nurse-led rheumatology clinics in monitoring therapies in patients
with CIA.
61
For patients with CIA and biological therapy, life is often characterized by a constant
routine of assessment, administration, management and monitoring of both the disease
and the biological therapy. It is important to have a competent and available
rheumatology nurse to guide the patients during their healthcare journey. Patients have
confidence in the rheumatology nurse’s competencies and skills in management of
biological therapy and appreciate being treated and monitored by a rheumatology
nurse. The rheumatology nurse’s role is to tailor the information and care based on the
patients’ resources and needs. In a person-centred care approach, the rheumatology
nurse respects and supports the patients’ skills and resources. To achieve this, the
rheumatology nurse’s role is being constantly developed. It would be desirable to
implement person-centred care in which two equal experts meet in mutual negotiation.
Rheumatology nurses should be encouraged to expand their roles after their
specialized education and training in order to complement rheumatologists and other
professionals in the multidisciplinary team. Further research is necessary to develop
and evaluate a core curriculum comprising educational nursing programmes at basic
and advanced level for rheumatology nurses.
62
Summary in Swedish/
Svensk sammanfattning
Personcentrerad vård i reumatologisk omvårdnad
för patienter med biologisk läkemedelsbehandling:
En utforskande och interventionell studie
Bakgrund
Patienter med kronisk inflammatorisk artrit (CIA)
behandlade med biologiska läkemedel
Att leva med en kronisk inflammatorisk artrit (CIA) påverkar patienters fysiska
funktion dessutom påverkas känslomässiga, psykologiska och sociala aspekter med
inverkan på patienters hela livssituation (Hewlett et al. 2011, Ryan 2006). Begreppet
CIA avser i denna avhandling reumatoid artrit (RA) och spondylartrit (SpA) (van Eijk-
Hustings et al. 2012). Patienter med CIA har ofta smärta, stelhet, nedsatt rörlighet,
trötthet, sömnstörningar, hud, nutrition (Braun & Sieper 2007, Klareskog et al. 2009)
och sexuella problem (Josefsson & Gard 2010). Smärtan påverkar vardagen för
patienter och kan vara ett hinder i deras strävan efter att hitta balansen i livet och att
var självständiga och oberoende (Ahlstrand et al. 2012). Smärtan och stelheten, speciellt
morgonstelheten, är stora problem för patienterna och påverkar deras rörlighet och
livskvalitet (Hill 2006a) samt arbetsförmåga (Westhoff et al. 2008). Patienters
smärtupplevelser ökar vid trötthet, stress och depression (Ahlstrand et al. 2012).
Trötthet är ett av de mest besvärande symtomen och patienter beskriver tröttheten
som överväldigande och okontrollerbar med stor påverkan på det dagliga livet
(Hewlett et al. 2005a, Nikolaus et al. 2010).
Den kroniska ledinflammationen orsakas av obalans i immunsystemet.
Överproduktion av olika cytokiner i lederna hos patienter med artrit är en del av den
process som medför leddestruktion (Tracey et al. 2008). Målet med läkemedels-
behandlingen är att minska sjukdomsaktiviteten och kontrollera symtom för att
reducera bestående ledskador samt förebygga funktionsnedsättningar (Braun et al.
2011, Gossec et al. 2012, Smolen et al. 2010). För patienter med otillräcklig effekt av
traditionell sjukdomsdämpande (DMARD) behandling sker inom reumatologin en
ständig utveckling av s.k. biologiska läkemedel (van Vollenhoven et al. 2012) som
63
blockerar specifika inflammatoriska cytokiner och celler i ledvätska och immunsystem
och därmed hämmar sjukdomen. Biologisk läkemedelsbehandling har förändrat
behandlingsmöjligheterna och blir allt vanligare för patienter med CIA (Buch & Emery
2011, Furst et al. 2012), vilket resulterat i minskad sjukdomsaktivitet och inflammation
under det senaste decenniet hos denna patientgrupp (Simard et al. 2011). De biologiska
läkemedlen administreras antingen genom subkutana injektioner av patienterna själva
eller genom intravenösa infusioner givna av en sjuksköterska (Tracey et al. 2008).
Reumatologisk omvårdnad
Reumatologisk omvårdnad har sin grund i en holistisk syn med hela patienten i fokus
(Hill 2007) och är optimal när den utgår från patientens perspektiv (Jacobi et al. 2004,
Larrabee & Bolden 2001). Den reumatologiska omvårdnaden har utvecklats och
sjuksköterskan behöver vara en expert med hög grad av kunskap och kompetens för
att ge en evidensbaserad vård (Arvidsson et al. 2003, Oliver 2011). Reumatologi-
sjuksköterskans roll är mångfacetterande och utmanande och sjuksköterskan måste
använda alla sina kunskaper och färdigheter till fullo för att ge optimal vård (Hill
1997a). Den reumatologiska omvårdnaden syftar till att identifiera och möta
patienternas behov, förstå sjukdom och behandling från patienternas perspektiv och
uppmuntra till delaktighet i vården. Reumatologisjuksköterskan behöver upprätta en
relation med patienten och stärka, undervisa, stödja samt vägleda patienter och deras
familjer i mötet med vården. Relationen mellan patient och sjuksköterska är viktig i
den reumatologiska omvårdnaden (Ryan 1998, van Eijk-Hustings et al. 2012).
Relationen måste byggas på delaktighet och mötet mellan sjuksköterska och patienter
är centralt i reumatologisk omvårdnad (Ryan & Voyce 2007). Forskning visar att
reumatologiska sjuksköterskeledda mottagningar för patienter med traditionell
läkemedelsbehandling är effektiva och förbättrar patienters förmåga att hantera sin
sjukdom (Hill 1997b, Hill et al. 1994, Hill et al. 2003b, Primdahl et al. 2012, Ryan et al.
2006b, Tijhuis et al. 2003). En sjuksköterskeledd mottagning kan vara ett sätt att möta
EULARs rekommendationer, avseende sjuksköterskans roll i behandlingen av
patienter med CIA, att patienter bör ha tillgång till patientundervisning, konsultation
och telefonrådgivning av sjuksköterskan under hela sin sjukdomstid. Sjuksköterskor
bör främja egenvården så att patienter kan få en större känsla av kontroll, tilltro till sig
själva och egenmakt. Sjuksköterskor bör även delta i behandling och bedömning av
sjukdomsaktiviteten samt utföra interventioner och monitorering av behandling bland
annat i syfte att uppnå kostnadsbesparingar. Mötet mellan sjuksköterska och patient
ska vara på en individuell nivå, vilket främjas av en personcentrerad vård (van Eijk-
Hustings et al. 2012).
64
Personcentrerad vård
Personcentrerad vård betonar vikten av att göra patienten till en medaktör i vården,
vilket WHO anser vara betydelsefullt i en god hälso- och sjukvård (Nolte & McKee
2008). Morgan och Yoder (2012) definierar personcentrerad vård som ett holistiskt
synsätt, vilket är respektfullt, individanpassat och personstärkande (empowering)
genom ömsesidig förhandling i en terapeutisk relation för att stärka patienters
delaktighet i vården. I denna avhandling inkluderar personcentrerad vård begreppen
holistisk, respektfull, individuell och personstärkande vård.
Holistisk vård
Holistisk vård betyder att se hela människan med fysiska, psykiska, sociala och andliga
behov. För att ge en holistisk vård behöver sjuksköterskan förstå hur sjukdomen
påverkar hela människan för att möta de verkliga behoven hos personen. Holistisk
vård som fokuserar på en biologisk sjukdom innefattar alltid de psykologiska, sociala
och andliga aspekterna som bidrar till hela personens livssituation (Morgan & Yoder
2012). En holistisk vård omfattar specifika mänskliga egenskaper som självreflektion,
upplevelse av mening, värderingar, känslor och olika valmöjligheter, vilket också
speglar en humanistisk syn på människan. Den humanistiska synen på människan
innebär att en person betraktas som unik det vill säga en autonom, rationell, social och
andlig varelse (Berg & Sarvimaki 2003).
Respektfull vård
En respektfull vård erkänner och respekterar varje persons egenvärde och lyfter
personens styrkor och förmågor samt uppmuntrar mänsklig frihet. Varje person har
rätt att behandlas med respekt och ses som kompetent att fatta egna beslut angående
sin vård. För att ge respektfull vård behöver sjuksköterskan respektera personens val i
olika sammanhang (Morgan & Yoder 2012). Respektfull vård respekterar också
personens autonomi, värdighet och integritet och bör baseras på respekt för hela
personens rättigheter, inte bara som en patient i behov av vård (Slater 2006). Detta
etiska förhållningssätt utgör ett ramverk inom vilket sjuksköterskan skapar en dialog
och en relation med personer som behöver vård (Berg & Sarvimaki 2003).
Individanpassad vård
Individanpassad vård uppnås genom att förstå en persons livssituation, vilket
innefattar att ha kunskap om personens kultur, tro, traditioner, vanor, aktiviteter och
andra önskemål (Morgan & Yoder 2012). Viktiga delar i personcentrerad vård är att
stärka den enskildes rättigheter, värderingar och övertygelser (Edvardsson et al. 2008)
samt bekräfta personens livsvärld. Personen kan uppleva rädsla och ha en känsla av att
vara missförstådd i vården (Slater 2006). Personcentrerad vård betonar vikten av att
känna personen bakom patienten, en person som är unik med egen vilja, känslor och
behov. Att se en person med en sjukdom innebär att sätta personen före sjukdomen
(Ekman et al. 2011, Slater 2006).
65
Personstärkande vård
Personstärkande vård innebär att sjuksköterskan delar ansvar och makt samt gör
personen delaktig i beslut rörande vården (Edvardsson et al. 2008, Ekman et al. 2011,
Tengland 2008). Synen på patienten och sjuksköterskan som samarbetspartners
grundas på ett ömsesidigt förtroende där personens egna beslut värderas högt, vilket
medför att makt flyttas till personen (Slater 2006). Personstärkande vård uppmuntrar
patienten till självständighet och tilltro till sig själv, vilket främjar personens delaktighet
i beslutsfattande. Patientens egenmakt stärks genom en god kommunikation och
ömsesidig förhandling som uppmuntrar patienten till kritiskt tänkande och ta egna
välgrundade beslut (Anderson & Funnell 2010, Morgan & Yoder 2012, Tengland
2008).
Personcentrerad vård i klinisk verksamhet
I denna avhandling ses patienter som personer med en sjukdom och med en
personcentrerad vård är det viktigt att lära känna personen bakom patienten. Eftersom
personerna enbart har en relation till sjuksköterskan när de är i behov av vård kommer
de att kallas patienter i denna avhandling.
Det centrala i personcentrerad vård är patientens berättelse. Avsikten är att ge
patienterna möjlighet att berätta om sig själva som person och låta
sjukdomsberättelsen bli en utgångspunkt för en samverkan. Patienternas berättelse
skapar en förståelse för upplevelsen av situationen och deras förutsättningar, resurser
och hinder. Patientens berättelse skapar en gemensam grund för att diskutera och
planera vård och behandling. Att göra patienter till medaktörer i vården är att
uppmuntra dem att spela en aktiv roll i beslut kring den egna vården och
behandlingen. Personcentrerad vård innebär ett samarbete med utbyte av information,
gemensam överläggning och delat beslutsfattande, vilket även ska dokumenteras
(Ekman et al. 2011).
Tidigare forskning visar att personcentrerad vård ökar tillfredsställelsen i vården för
både patienter (Edvardsson et al. 2010) och sjuksköterskor (Lehuluante et al. 2012,
McCormack et al. 2010). Personcentrerad vård förbättrar också kvaliteten på vården
(Chenoweth et al. 2009, Olsson et al. 2006) och vårdtiderna förkortas utan att försämra
den hälsorelaterade livskvaliteten (Ekman et al. 2012).
Syfte
Det övergripande syftet med denna avhandling var att utforska och utvärdera den
reumatologiska omvårdnaden utifrån ett personcentrerat perspektiv för patienter med
biologisk läkemedelsbehandling.
66
Metod
Studierna i denna avhandling genomfördes vid en reumatolog klinik i södra Sverige
med 5 500 öppenvårdsbesök årligen och 3 500 patienter, varav 600 patienter med
biologisk läkemedelsbehandling. De biologiska läkemedelsbehandlingarna
administreras antingen genom intravenösa infusioner eller genom subkutana
injektioner. De intravenösa infusionerna administreras av sjuksköterskor på en
behandlingsenhet. Patienter med CIA och biologisk läkemedelsbehandling ingick i
studierna och datainsamlingen skedde mellan år 2007-2011. I denna avhandling som
har en utforskande och interventionell design kombineras både kvalitativa (artikel I, II
och IV) och kvantitativa (artikel III) metoder.
Resultat
Avhandlingen utforskar, beskriver och utvärderar reumatologisk omvårdnad för
patienter med biologisk läkemedelsbehandling från ett personcentrerat perspektiv med
fokus på hur patienter uppfattade sitt beroende eller oberoende av sjuksköterskan vid
administration av biologiska intravenösa infusioner och subkutana injektioner, hur en
sjuksköterskeledd reumatologimottagning baserad på personcentrerad vård kan ersätta
besök på en reumatologmottagning vid monitorering av biologisk läkemedels-
behandling och hur patienter erfor den sjuksköterskeledda reumatologimottagningen.
Patienters beroende av en sjuksköterska för administration
av intravenös anti-TNF behandling (artikel I)
Syftet med studien var att beskriva variationer i hur patienter med reumatiska
sjukdomar uppfattar sitt beroende av en sjuksköterska för administrering av
intravenös anti-TNF behandling. Deltagarna bestod av 20 patienter med CIA
behandlade med biologiska intravenösa infusioner. Datainsamlingen skedde med
öppna intervjuer och frågor angående patienternas uppfattningar av beroendet av en
sjuksköterska för administrering av läkemedel. Intervjuerna skrevs ut ordagrant och
analyserades i olika steg med en fenomenografisk ansats (Dahlgren & Fallsberg 1991,
Sjostrom & Dahlgren 2002).
Resultatet visade att patienterna uppfattade att beroendet av en sjuksköterska vid
administrering av intravenös anti-TNF behandling gav trygghet, skapade delaktighet och
var energigivande. Patienterna erfor en trygghet genom kontinuitet med en kompetent
sjuksköterska som försåg patienterna med information, vilket underlättade det dagliga
livet. Insikten att sjuksköterskan behandlade dem som personer och hade ett genuint
intresse av den enskilde påverkade patienterna på ett personligt plan. De beskrev att
den individuellt utformade vården ökade deras välbefinnande och gav en trygghet.
Mötet med en kompetent och engagerad sjuksköterska skapade förtroende och tillit.
Informations- och erfarenhetsutbytet med sjuksköterskan och andra patienter gav även
67
en trygghet. Patienterna erfor att deras beroende av sjuksköterskan skapade en
delaktighet genom möjligheterna att påverka vården. Sjuksköterskan var tillgänglig och
flexibel vid administrationen samt samordnade besök med andra professioner i teamet.
Att patienterna inte behövde tänka på sin läkemedelsbehandling mellan
infusionstillfällena eller utföra behandlingen själva skapade en känsla av frihet. Mötet
med en sjuksköterska vid administrationen av intravenös biologisk läkemedels-
behandling var energigivande. Patienterna beskrev administreringen av infusionen som
avkopplande då den gavs i en lugn och vacker miljö samt de uppskattade möjligheten
att få tid för sig själva.
Patienters oberoende av en sjuksköterska för
administration av subkutan anti-TNF behandling (artikel II)
Syftet med studien var att beskriva variationer i hur patienter med reumatiska
sjukdomar uppfattar sitt oberoende av en sjuksköterska för administrering av subkutan
anti-TNF behandling. Deltagarna bestod av 20 patienter med CIA
behandlade med biologiska subkutana injektioner. Datainsamlingen skedde med
öppna intervjuer och frågor angående patienternas uppfattningar av oberoendet av en
sjuksköterska för administrering av läkemedel. Intervjuerna skrevs ut ordagrant och
analyserades i olika steg med en fenomenografisk ansats (Larsson & Holmström 2007).
Resultatet visade fyra olika sätt att förstå patienters oberoende av en sjuksköterska vid
administrering av subkutan anti-TNF behandling: den kämpande patienten, den lärande
patienten, den delaktiga patienten och den fria patienten. Den kämpande patienten beskrev
hur patienter begränsades av injektionerna och hur de saknade relationen med en
sjuksköterska. Patienterna strävade efter ett oberoende och injektionerna gav upphov
till oro och smärta, vilket påverkade motivationen. Den goda effekten som
injektionerna hade gjorde att de kämpade vidare trots obehaget som injektionerna gav.
Det var en kamp mellan känsla och förnuft. Den lärande patienten beskrev hur
självadministreringen var en inlärningsprocess, vilken gav ökad kunskap och
kompetens. Lärandet blev ett medel för att uppnå oberoende. Patienterna erfor en
trygghet med behandlingen och deras oberoende av andra gjorde att de växte som
människor. De kontaktade en sjuksköterska när frågor uppkom och
självadministrationen blev en vana och rutin. Den delaktiga patienten beskrev att
patienterna hade kontroll över livet genom att själva administrera de subkutana
injektionerna. Patientdelaktighet i behandlingen gav ett oberoende och beskrevs som
en möjlighet att påverka livet samt följa instruktioner och ta kontroll över
administrationen. Delaktighet gav en trygghet och flexibilitet i behandlingen och i
andra beslut. Den fria patienten beskrev att patienterna kunde hantera livet och leva
oberoende. Oberoendet av andra människor och att inte behöva planera livet efter
behandlingstillfällena gav en frihet.
68
En sjuksköterskeledd reumatologimottagning för
monitorering av biologisk läkemedelsbehandling (artikel III)
Syftet med studien var att jämföra och utvärdera behandlingsresultat från en
sjuksköterskeledd reumatologimottagning och en reumatologmottagning för patienter
med biologisk läkemedelsbehandling som hade låg sjukdomsaktivitet eller var i
remission. Deltagarna bestod av 107 patienter med CIA behandlade med biologiska
läkemedel som randomiserades till två grupper: sjuksköterskeledd
reumatologimottagning (interventionsgrupp, n=53) och reumatologmottagning
(kontrollgrupp, n=54). En sjuksköterskeledd mottagningen baserad på
personcentrerad vård med patienters behov i fokus utformades där sjuksköterskan
bedömde patienters sjukdomsaktivitet på samma sätt som reumatologen. Patientens
berättelse utgjorde utgångspunkten i en dialog för att möta patientens behov. Avsikten
var att ersätta ett av de två årliga läkarbesöken med ett besök hos en sjuksköterska för
monitorering av den biologiska läkemedelsbehandlingen. Patienterna monitorerades av
en sjuksköterska efter 6 månader och av en reumatolog efter 12 månader. Hypotesen
var att behandlingsresultatet vid en sjuksköterskeledd mottagning skulle vara likvärdigt
med behandlingsresultatet vid en reumatologmottagning vid 12 månaders uppföljning.
Fem sjuksköterskor med lång erfarenhet inom reumatologi deltog i studien. De hade
utbildats i bedömning av patienters ömma och svullna leder baserat på 28-leds index
för att göra en evidensbaserad bedömning av sjukdomsaktiviteten. Sjukdomsaktiviteten
mättes med DAS28, begränsning i aktivitet mättes med HAQ, smärta mättes med VAS
skala och tillfredsställelse och nöjdhet mättes med NRS skala.
Resultatet visade i enlighet med vår hypotes att efter 12 månader var det ingen skillnad
i förändring i sjukdomsaktivitet, DAS28 eller i de andra utfallsmåtten mellan patienter
som monitorerades via en sjuksköterskeledd mottagning eller via en
reumatologmottagning. Patienter med biologisk läkemedelsbehandling som är lågaktiva
eller i remission kan monitoreras säkert och effektivt av en sjuksköterska.
Patienters erfarenheter av en sjuksköterskeledd
reumatologimottagning (artikel IV)
Syftet med studien var att beskriva patienters erfarenheter av en sjuksköterskeledd
reumatologimottagning för monitorering av biologisk läkemedelsbehandling.
Deltagarna bestod av 20 patienter med CIA behandlade med biologiska läkemedel.
Datainsamlingen skedde med öppna intervjuer och en ingångsfråga angående
patienternas erfarenhet av mötet med en sjuksköterska vid den sjuksköterskeledda
mottagningen. Intervjuerna skrevs ut ordagrant och analyserades i olika steg med en
induktiv kvalitativ innehållsanalys ansats (Graneheim & Lundman 2004).
69
Resultatet visade att en sjuksköterskeledd reumatologimottagning baserad på
personcentrerad vård tillförde ett mervärde i vården genom att patienterna erfor
trygghet, förtrogenhet och delaktighet. Mötet med sjuksköterskan medförde en trygghet
för patienterna genom sjuksköterskans kompetens, tillgänglighet och flexibilitet.
Patienterna beskrev att sjuksköterskans kunskaper om sjukdom, bedömning av
sjukdomsaktivitet och behandling samt att sjuksköterskan tog sig tid och var noggrann
vid undersökningen skapade en trygghet. Sjuksköterskan uttryckte en helhetssyn och
såg inte bara patienterna som en diagnos utan hade omsorg om hela människan.
Samarbetet med läkaren lyftes då sjuksköterskan kompletterade läkaren med sin
omvårdnadskunskap. Genom att möta olika professioner i vården fick patienterna sin
livssituation belyst från olika perspektiv, vilket gav en trygghet. Mötet med
sjuksköterskan medförde en förtrogenhet för patienterna genom bekräftelse och
lyhördhet. Att sjuksköterskan såg patienterna som unika personer var betydelsefullt för
att skapa ett förtroende. Sjuksköterskan uppfattades vara på samma nivå och
närmare patienterna än en läkare, vilket gjorde att en värdefull relation växte fram.
Sjuksköterskan visade medkänsla och respekt för patienternas integritet. Ett empatiskt
bemötande framställdes som en viktig pusselbit för att vården skulle bli komplett.
Patienterna erfor lyhördhet i samtalet med sjuksköterskan och de vågade öppna sig för
sjuksköterskan även kring känsliga och vardagsnära ämnen, vilka kändes för enkla för
att ”störa” läkaren med. Sjuksköterskan beskrevs ha en ”fingertoppskänsla” och
intuition. Patienterna uppfattade att sjuksköterskan kunde ”läsa” dem utan att något
sagts, vilket skapade en närhet. Mötet med sjuksköterskan medförde en delaktighet för
patienterna genom ett informations- och erfarenhetsutbyte samt engagemang.
Sjuksköterskan beskrevs som ett ”bollplank” där patienter kunde ställa frågor och fick
svar men även erhöll kunskap om hur de på egen hand kunde finna information.
Mötet mellan sjuksköterskan och patienten var ett tillfälle för bådas lärande och
bidrog till patientens delaktighet. Sjuksköterskan och patienten förde en dialog och
patienten gjordes delaktig i planering och undersökning. Dialogen med sjuksköterskan
innebar en reflektion för patienterna som fick möjlighet att analysera och själva ta mer
aktiv del i bedömning av sjukdomen. Patienterna respekterades för sina bedömningar
och sjuksköterskan tog patienternas problem på allvar. Att få bekräftelse på den egna
reflektionens värde och få stöd i beslut stärkte delaktigheten och patienterna blev en
resurs i vården. Vikten av att ha inflytande och ta del i beslut kring sjukdom och
behandling var av betydelse för att känna delaktighet vilket, ledde till att patienterna
blev medaktörer i vården.
70
Övergripande förståelse
Den reumatologiska vården och behandlingen utformas efter den enskilda patientens
sjukdomsaktivitet och patienter behandlas enligt generella riktlinjer (Furst et al. 2012,
Vliet Vlieland & Li 2009). Detta innebär en skev maktposition där patienter blir
informerad om lämpliga åtgärder och behandlingar utan större möjlighet att kunna
påverka. Denna syn på patienter håller på att förändras och vården övergår till att
överlämna mer ansvar till patienterna och uppföljningsbesök kan ske på patientens
initiativ (Hewlett et al. 2005b). Sjuksköterskans roll inom reumatologin har utvecklats
mot en holistisk syn och rekommendationer från EULAR är att sjuksköterskan bör
främja självbestämmande hos patienter för en större känsla av kontroll, självtillit och
egenmakt (van Eijk-Hustings et al. 2012). För att uppnå en jämnare maktbalans mellan
patienter och vårdpersonal krävs en personcentrerad vård där patienter ses som
medaktörer (Morgan & Yoder 2012, Sahlsten et al. 2008). I reumatologisk omvårdnad
pågår ett paradigmskifte och en personcentrerad vård börjar integreras i dagliga
vårdrutiner (Bala et al. 2012).
Avhandlingen beskriver vikten av personcentrerad vård i reumatologisk omvårdnad.
Vid monitorering av biologisk läkemedelsbehandling är en sjuksköterskeledd
mottagning, baserad på personcentrerad vård, säker och effektiv. En kompetent och
tillgänglig sjuksköterska som arbetar personcentrerat skapar en trygghet och
förtrogenhet, vilket ökar patienters delaktighet och oberoende i vården. En
personcentrerad vård bygger på ett ömsesidigt beroende mellan patient och
sjuksköterska. Patienter är beroende av sjuksköterskan och hennes professionella
kunskaper om sjukdom och behandling samt i vissa fall för administration av
intravenösa infusioner. Sjuksköterskan är beroende av patientens vilja att dela med sig
av sin sjukdomsberättelse för att kunna ge en god och säker vård. Ett ömsesidigt
beroende och en jämbördig relation mellan patient och sjuksköterska är grundläggande
för utvecklingen av ett optimalt ”partnerskap”, vilket är målet med en personcentrerad
vård (Ekman et al. 2011).
Den reumatologiska omvårdnaden kan vidareutvecklas med en personcentrerad vård
som ett förhållningssätt. En holistisk, respektfull, individanpassad och personstärkande
vård (Morgan & Yoder 2012) är viktig för att uppnå trygghet, förtrogenhet, delaktighet och oberoende i vården (Figur 5). I en holistisk vård ser sjuksköterskan
patienten som en hel människa med resurser. Att bli sedd med kunskap och
kompetens skapar ett möte mellan två jämlika personer och experter: patienten som
expert på sin sjukdom och livssituation och sjuksköterskan som expert i sin profession
(Sahlsten et al. 2007). Detta möte mellan två experter leder till känsla av trygghet och
förtrogenhet för patienten, vilket skapar delaktighet och oberoende. En respektfull vård
är också en förutsättning för en jämbördig relation baserad på ömsesidig respekt
mellan patient och sjuksköterska. När sjuksköterskan lyhört lyssnar till patienterna och
låter deras berättelser utgöra grunden för vården skapas en känsla av trygghet och
förtrogenhet, vilket leder till en delaktighet och ett oberoende för patienterna.
71
I en individanpassad vård där personens resurser och behov utgör grunden för
sjuksköterskans arbete och vårdplanering sker en ömsesidig förhandling. Den
ömsesidiga förhandlingen mellan sjuksköterska och patient leder till en känsla av
trygghet och förtrogenhet samt främjar delaktighet och oberoende (Sahlsten et al.
2007). En personstärkande vård syftar till att öka patientens kapacitet och kritiska
tänkande för att kunna ta självständiga och genomtänkta beslut i vården.
Sjuksköterskan kan genom att vara engagerad och inbjuda till dialog samt
informations- och erfarenhetsutbyte bidra till att patienten blir en medaktör. Som
medaktör erfar patienter en känsla av trygghet och förtrogenhet som även leder till
delaktighet och oberoende i vården.
Patienters trygghet och känsla av förtrogenhet samverkar och ökar med en
personcentrerad vård. När patienter erfar trygghet och förtrogenhet stärks patienter till
delaktighet i vården, vilket i sin tur ökar oberoendet. Delaktighet och oberoende
samverkar och ökar med en personcentrerad vård. När patienter erfar delaktighet och
oberoende i vården blir de trygga och känner en förtrogenhet. Detta är en pågående
process där personcentrerad vård är kärnan som bidrar till en positiv samverkan
(Figur 5). Denna avhandling visar att personcentrerad vård är kärnan i reumatologisk
omvårdnad som skapar trygghet, förtrogenhet, delaktighet och oberoende för patienter
med biologisk läkemedelsbehandling.
Figur 5. Personcentrerad vård är kärnan i reumatologisk omvårdnad som skapar
och förstärker trygghet, förtrogenhet, delaktighet och oberoende för patienter
med biologisk läkemedelsbehandling i en pågående interaktiv process.
Sjuksköterska
Patient
Trygghet
Förtrogenhet Oberoende
Delaktighet Personcentrerad
vård
72
Slutsatser
Slutsatserna från denna avhandling är:
Patienter med intravenös biologisk läkemedelsbehandling uppfattar en
regelbunden kontakt med sjuksköterskan som trygg, delaktig och energigivande
(artikel I).
Patienter med biologisk läkemedelsbehandling värdesätter att bli sedda som en
unik person av sjuksköterskan (artikel I och IV).
Patienter med subkutan biologisk läkemedelsbehandling kämpar för att bli
delaktiga och uppnå oberoende i livet (artikel II).
Sjuksköterskor kan underlätta för patienter med biologisk läkemedels-
behandling i deras strävan efter delaktighet och oberoende (artikel I, II och IV).
Patienter med biologisk läkemedelsbehandling som är lågaktiva eller i remission
kan monitoreras säkert och effektivt av en sjuksköterska (artikel III).
Uppföljning av patienter med biologisk läkemedelsbehandling kan utvecklas
genom en sjuksköterskeledd mottagning baserad på personcentrerad vård och
vara ett komplement till en reumatologmottagning (artikel III och IV).
Patienter med biologisk läkemedelsbehandling erfar att en sjuksköterskeledd
mottagning baserad på personcentrerad vård tillför ett mervärde i vården och
skapar trygghet, förtrogenhet och delaktighet (artikel IV).
Personcentrerad vård är kärnan i reumatologisk omvårdnad och skapar
trygghet, förtrogenhet, delaktighet och oberoende för patienter med biologisk
läkemedelsbehandling.
Personcentrerad vård leder till en jämbördig relation mellan patient och
sjuksköterska som stärker trygghet, förtrogenhet, delaktighet och oberoende för
patienter med biologisk läkemedelsbehandling i en pågående interaktiv process.
Reumatologisk omvårdnad kan utvecklas med personcentrerad vård. Denna
avhandling stöder införandet av personcentrerad vård i reumatologisk
omvårdnad för patienter med biologisk läkemedelsbehandling.
73
Kliniska implikationer och forskningsimplikationer
I den kliniska vården av patienter med CIA och biologisk läkemedelsbehandling är det
viktigt att se varje patient som en individuell person. Detta betyder att patienter får
möjlighet att berätta om sig själva som personer och att låta deras
sjukdomsberättelse utgöra grunden för vården. I reumatologisk omvårdnad är det
viktigt att ha en personcentrerad vård som en omvårdnadsfilosofi och ett arbetssätt.
Personcentrerad vård betonar vikten av att lära känna personen bakom patienten, en
unik person med egen vilja, känslor, behov och resurser, en expert på sin sjukdom och
livsituation. I klinisk vård är det viktigt att det blir en dialog och en ömsesidig
förhandling mellan två experter: patient och vårdpersonal. Ytterligare forskning behövs
för att utvärdera personcentrerad vård med validerade instrument från både
patienters och vårdpersonals perspektiv.
När tid och pengar tenderar att bli en bristvara i vården är det viktigt att göra
patienter delaktiga i sin vård och använda resurserna på bästa sätt. Ett sätt att minska
kostnaderna utan att påverka kvaliteten i vården kan vara att inrätta sjuksköterskeledda
mottagningar baserade på personcentrerad vård, vilka syftar till att främja och stärka
patienter att ta aktiv del i vård och behandling. En sjuksköterskeledd mottagning kan
spara pengar och ge ökade resurser för reumatologer att prioritera och avsätta tid till
patienter med nydebuterad sjukdom eller hög sjukdomsaktivitet, vilka kräver tätare
kontroller eller medicinjusteringar. Kostnadseffektiviteten med att ersätta reumatologer
med sjuksköterskor vid monitorering av biologisk läkemedelsbehandling för patienter
med låg sjukdomsaktivitet eller i remission bör utvärderas. Ytterligare forskning
behövs för att utvärdera de långsiktiga effekterna och kostnadseffektiviteten av en
sjuksköterskeledd mottagning i monitorering av olika behandlingar för patienter med
CIA.
För patienter med CIA och biologisk läkemedelsbehandling är livet ofta kantat av
bedömningar, administration, behandling och monitorering av både sjukdom och
biologiskt läkemedel. Det är viktigt med en kompetent och tillgänglig sjuksköterska för
att vägleda patienter i vården. Vid biologisk läkemedelsbehandling har patienter stort
förtroende för sjuksköterskans kompetens och färdigheter samt uppskattar att bli
behandlad och monitorerad av en sjuksköterska. Sjuksköterskans roll är att
individanpassa information och vård utifrån patienternas egna resurser och behov.
Inom reumatologin är sjuksköterskans roll under ständig förändring och utveckling.
Sjuksköterskor bör uppmuntras till vidareutbildning samt att utvidga sin roll i att vara
ett komplement till reumatologer och övriga professioner i teamet. Ytterligare
forskning behövs för att utveckla och utvärdera utbildningsprogram för att öka
sjuksköterskans kompetens.
74
References
Ahlstrand I., Bjork M., Thyberg I., Borsbo B. & Falkmer T. (2012) Pain and daily
activities in rheumatoid arthritis. Disability and Rehabilitation, 34(15),
1245-1253.
Aletaha D., Neogi T., Silman A.J., Funovits J., Felson D.T., Bingham C.O., 3rd,
Birnbaum N.S., Burmester G.R., Bykerk V.P., Cohen M.D., Combe B.,
Costenbader K.H., Dougados M., Emery P., Ferraccioli G., Hazes J.M.,
Hobbs K., Huizinga T.W., Kavanaugh A., Kay J., Kvien T.K., Laing T.,
Mease P., Menard H.A., Moreland L.W., Naden R.L., Pincus T., Smolen J.S.,
Stanislawska-Biernat E., Symmons D., Tak P.P., Upchurch K.S.,
Vencovsky J., Wolfe F. & Hawker G. (2010) 2010 Rheumatoid arthritis
classification criteria: an American College of Rheumatology/European
League Against Rheumatism collaborative initiative. Arthritis & Rheumatism,
62(9), 2569-2581.
Anderson R.M. & Funnell M.M. (2010) Patient empowerment: myths and
misconceptions. Patient Education and Counseling, 79(3), 277-282.
Arthur V. & Clifford C. (2004a) Rheumatology: a study of patient satisfaction with
follow-up monitoring care. Journal of Clinical Nursing, 13(3), 325-331.
Arthur V. & Clifford C. (2004b) Rheumatology: the expectations and preferences of
patients for their follow-up monitoring care: a qualitative study to determine
the dimensions of patient satisfaction. Journal of Clinical Nursing, 13(2),
234-242.
Arvidsson B., Jacobsson L. & Petersson I.F. (2003) Rheumatology care in Sweden -
the role of the nurse. Musculoskeletal Care, 1(2), 81-83.
Arvidsson S.B., Petersson A., Nilsson I., Andersson B., Arvidsson B.I., Petersson I.F.
& Fridlund B. (2006) A nurse-led rheumatology clinic’s impact on
empowering patients with rheumatoid arthritis: A qualitative study. Nursing
and Health Sciences, 8(3), 133-139.
Ash Z., Gaujoux-Viala C., Gossec L., Hensor E.M., FitzGerald O., Winthrop K., van
der Heijde D., Emery P., Smolen J.S. & Marzo-Ortega H. (2012) A systematic
literature review of drug therapies for the treatment of psoriatic arthritis:
current evidence and meta-analysis informing the EULAR recommendations
for the management of psoriatic arthritis. Annals of the Rheumatic Diseases, 71(3), 319-326.
75
Backman C.L. (2006) Arthritis and pain. Psychosocial aspects in the management of
arthritis pain. Arthritis Research & Therapy, 8(6), 221.
Bala S.V., Samuelson K., Hagell P., Svensson B., Fridlund B. & Hesselgard K. (2012)
The experience of care at nurse-led rheumatology clinics. Musculoskeletal
Care, 10(4), 202-11.
Barnard A., McCosker H. & Gerber R. (1999) Phenomenography: a qualitative
research approach for exploring understanding in health care. Qualitative
Health Research, 9(2), 212-226.
Berg G.V. & Sarvimaki A. (2003) A holistic-existential approach to health promotion.
Scandinavian Journal of Caring Sciences, 17(4), 384-391.
Bergsten U., Bergman S., Fridlund B. & Arvidsson B. (2011) "Striving for a good life"
the management of rheumatoid arthritis as experienced by patients. The Open
Nursing Journal, 5, 95-101.
Bingham C.O., 3rd, Alten R., Bartlett S.J., Bykerk V.P., Brooks P.M., Choy E.,
Christensen R., Furst D.E., Hewlett S.E., Leong A., May J.E., Montie P.,
Pohl C., Sanderson T.C., Strand V. & Woodworth T.G. (2011) Identifying
preliminary domains to detect and measure rheumatoid arthritis flares: report
of the OMERACT 10 RA Flare Workshop. The Journal of Rheumatology, 38(8), 1751-1758.
Braun J. & Sieper J. (2007) Ankylosing spondylitis. Lancet, 369(9570), 1379-1390.
Braun J., van den Berg R., Baraliakos X., Boehm H., Burgos-Vargas R., Collantes-
Estevez E., Dagfinrud H., Dijkmans B., Dougados M., Emery P., Geher P.,
Hammoudeh M., Inman R.D., Jongkees M., Khan M.A., Kiltz U., Kvien T.,
Leirisalo-Repo M., Maksymowych W.P., Olivieri I., Pavelka K., Sieper J.,
Stanislawska-Biernat E., Wendling D., Ozgocmen S., van Drogen C., van
Royen B. & van der Heijde D. (2011) 2010 update of the ASAS/EULAR
recommendations for the management of ankylosing spondylitis. Annals of the Rheumatic Diseases, 70(6), 896-904.
Breedveld F.C. & Combe B. (2011) Understanding emerging treatment paradigms in
rheumatoid arthritis. Arthritis Research & Therapy, 13 Suppl 1, S3.
Bruce B. & Fries J.F. (2003) The Stanford Health Assessment Questionnaire: a
review of its history, issues, progress, and documentation. The Journal of
Rheumatology, 30(1), 167-178.
Buch M.H. & Emery P. (2011) New therapies in the management of rheumatoid
arthritis. Current Opinion in Rheumatology, 23(3), 245-251.
76
Burmester G.-R., Pratt A.G., Scherer H.U. & van Laar J.M. (2012) Rheumatoid
Arthritis: Pathogenesis and Clinical Features. In EULAR Textbook on Rheumatic Diseases (Bijlsma J.W. ed.) BMJ Group, London, pp. 206-231.
Chenoweth L., King M.T., Jeon Y.H., Brodaty H., Stein-Parbury J., Norman R.,
Haas M. & Luscombe G. (2009) Caring for Aged Dementia Care Resident
Study (CADRES) of person-centred care, dementia-care mapping, and usual
care in dementia: a cluster-randomised trial. Lancet Neurology, 8(4), 317-325.
Dahlgren L.O. & Fallsberg M. (1991) Phenomenography as a qualitative approach in
social pharmacy research. Journal of Social and Administrative Pharmacy, 8(4), 150-156.
Delmar C., Boje T., Dylmer D., Forup L., Jakobsen C., Moller M., Sonder H. &
Pedersen B.D. (2006) Independence/dependence--a contradictory relation-
ship? Life with a chronic illness. Scandinavian Journal of Caring Sciences, 20(3), 261-268.
Downe-Wamboldt B. (1992) Content analysis: method, applications, and issues. Health
Care for Women International, 13(3), 313-321.
Edwards C. (2002) A proposal that patients be considered honorary members of the
healthcare team. Journal of Clinical Nursing, 11(3), 340-348.
Edvardsson D., Fetherstonhaugh D. & Nay R. (2010) Promoting a continuation of self
and normality: person-centred care as described by people with dementia,
their family members and aged care staff. Journal of Clinical Nursing, 19(17-18), 2611-2618.
Edvardsson D., Winblad B. & Sandman P.O. (2008) Person-centred care of people
with severe Alzheimer's disease: current status and ways forward. Lancet Neurology, 7(4), 362-367.
Ek K., Sahlberg-Blom E., Andershed B. & Ternestedt B.M. (2011) Struggling to retain
living space: patients' stories about living with advanced chronic obstructive
pulmonary disease. Journal of Advanced Nursing, 67(7), 1480-1490.
Ekdahl C., Eberhardt K., Andersson S.I. & Svensson B. (1988) Assessing disability in
patients with rheumatoid arthritis. Use of a Swedish version of the Stanford
Health Assessment Questionnaire. Scandinavian Journal of Rheumatology, 17(4), 263-271.
Ekman I., Swedberg K., Taft C., Lindseth A., Norberg A., Brink E., Carlsson J.,
Dahlin-Ivanoff S., Johansson I.L., Kjellgren K., Liden E., Ohlen J.,
Olsson L.E., Rosen H., Rydmark M. & Sunnerhagen K.S. (2011) Person-
centered care - ready for prime time. European Journal of Cardiovascular Nursing, 10(4), 248-251.
77
Ekman I., Wolf A., Olsson L.E., Taft C., Dudas K., Schaufelberger M. & Swedberg K.
(2012) Effects of person-centred care in patients with chronic heart failure:
the PCC-HF study. European Heart Journal, 33(9), 1112-1119.
Englund M., Joud A., Geborek P., Felson D.T., Jacobsson L.T. & Petersson I.F.
(2010) Prevalence and incidence of rheumatoid arthritis in southern Sweden
2008 and their relation to prescribed biologics. Rheumatology (Oxford), 49(8), 1563-1569.
Eriksen K., Rochester R.P. & Hurwitz E.L. (2011) Symptomatic reactions, clinical
outcomes and patient satisfaction associated with upper cervical chiropractic
care: a prospective, multicenter, cohort study. BMC Musculoskeletal Disorders,
12, 219.
Eriksson M. & Andershed B. (2008) Care dependence: a struggle toward moments of
respite. Clinical Nursing Research, 17(3), 220-236.
Firth J. & Critchley S. (2011) Treating to target in rheumatoid arthritis: biologic
therapies. British Journal of Nursing, 20(20), 1284, 1287-1288, 1290-1291.
FitzGerald O. (2006) Multidisciplinary Team Care of the Rheumatic Patient. In
Rheumatology Nursing: A Creative Approach. 2nd edition (Hill J. ed.), John
Wiley & Sons Ltd, West Sussex, pp. 311-335.
Fransen J., Antoni C., Mease P.J., Uter W., Kavanaugh A., Kalden J.R. & Van Riel P.L.
(2006) Performance of response criteria for assessing peripheral arthritis in
patients with psoriatic arthritis: analysis of data from randomised controlled
trials of two tumour necrosis factor inhibitors. Annals of the Rheumatic Diseases, 65(10), 1373-1278.
Fransen J., Creemers M.C. & Van Riel P.L. (2004) Remission in rheumatoid arthritis:
agreement of the disease activity score (DAS28) with the ARA preliminary
remission criteria. Rheumatology (Oxford), 43(10), 1252-1255.
Fries J.F., Spitz P., Kraines R.G. & Holman H.R. (1980) Measurement of patient
outcome in arthritis. Arthritis & Rheumatism, 23(2), 137-145.
Furst D.E., Keystone E.C., Braun J., Breedveld F.C., Burmester G.R., De Benedetti F.,
Dorner T., Emery P., Fleischmann R., Gibofsky A., Kalden J.R.,
Kavanaugh A., Kirkham B., Mease P., Sieper J., Singer N.G., Smolen J.S.,
Van Riel P.L., Weisman M.H. & Winthrop K. (2012) Updated consensus
statement on biological agents for the treatment of rheumatic diseases, 2011.
Annals of the Rheumatic Diseases, 71 Suppl 2, i2-45.
78
Glintborg B., Ostergaard M., Dreyer L., Krogh N.S., Tarp U., Hansen M.S., Rifbjerg-
Madsen S., Lorenzen T. & Hetland M.L. (2011) Treatment response, drug
survival, and predictors thereof in 764 patients with psoriatic arthritis treated
with anti-tumor necrosis factor alpha therapy: results from the nationwide
Danish DANBIO registry. Arthritis & Rheumatism, 63(2), 382-390.
Goh L. & Samanta A. (2012) Update on biologic therapies in ankylosing spondylitis: a
literature review. International Journal of Rheumatic Diseases, 15(5), 445-454.
Gossec L., Smolen J.S., Gaujoux-Viala C., Ash Z., Marzo-Ortega H.,
van der Heijde D., FitzGerald O., Aletaha D., Balint P., Boumpas D.,
Braun J., Breedveld F.C., Burmester G., Canete J.D., de Wit M.,
Dagfinrud H., de Vlam K., Dougados M., Helliwell P., Kavanaugh A.,
Kvien T.K., Landewe R., Luger T., Maccarone M., McGonagle D.,
McHugh N., McInnes I.B., Ritchlin C., Sieper J., Tak P.P., Valesini G.,
Vencovsky J., Winthrop K.L., Zink A. & Emery P. (2012) European League
Against Rheumatism recommendations for the management of psoriatic
arthritis with pharmacological therapies. Annals of the Rheumatic Diseases, 71(1), 4-12.
Graneheim U.H. & Lundman B. (2004) Qualitative content analysis in nursing
research: concepts, procedures and measures to achieve trustworthiness.
Nurse Education Today, 24(2), 105-112.
Gronning K., Lomundal B., Koksvik H.S. & Steinsbekk A. (2011) Coping with
arthritis is experienced as a dynamic balancing process. A qualitative study.
Clinical Rheumatology, 30(11), 1425-1432.
Gulfe A., Kristensen L.E., Saxne T., Jacobsson L.T., Petersson I.F. & Geborek P.
(2010) Rapid and sustained health utility gain in anti-tumour necrosis factor-
treated inflammatory arthritis: observational data during 7 years in southern
Sweden. Annals of the Rheumatic Diseases, 69(2), 352-357.
Haglund E., Bremander A.B., Petersson I.F., Strombeck B., Bergman S.,
Jacobsson L.T., Turkiewicz A., Geborek P. & Englund M. (2011) Prevalence
of spondyloarthritis and its subtypes in southern Sweden. Annals of the Rheumatic Diseases, 70(6), 943-948.
Hewlett S., Chalder T., Choy E., Cramp F., Davis B., Dures E., Nicholls C. &
Kirwan J. (2011) Fatigue in rheumatoid arthritis: time for a conceptual model.
Rheumatology (Oxford), 50(6), 1004-1006.
Hewlett S., Cockshott Z., Byron M., Kitchen K., Tipler S., Pope D. & Hehir M.
(2005a) Patients' perceptions of fatigue in rheumatoid arthritis:
overwhelming, uncontrollable, ignored. Arthritis & Rheumatism, 53(5),
697-702.
79
Hewlett S., Kirwan J., Pollock J., Mitchell K., Hehir M., Blair P.S., Memel D. &
Perry M.G. (2005b) Patient initiated outpatient follow up in rheumatoid
arthritis: six year randomised controlled trial. BMJ, 330(7484), 171.
Hill J. (1997a) The expanding role of the nurse in rheumatology. British Journal of Rheumatology, 36(4), 410-412.
Hill J. (1997b) Patient satisfaction in a nurse-led rheumatology clinic. Journal of Advanced Nursing, 25(2), 347-354.
Hill J. (2006a) Pain and Stiffness. In Rheumatology Nursing: A Creative Approach. 2nd edition (Hill J. ed.), John Wiley & Sons Ltd, West Sussex, pp. 217-243.
Hill J. (2006b) Rheumatology Nursing: A Creative Approach. 2nd edition. John Wiley &
Sons Ltd, West Sussex.
Hill J. (2007) The role of the rheumatology nurse specialist. Rheumatology in practice, 5(2), 8-10.
Hill J., Bird H. & Thorpe R. (2003a) Effects of rheumatoid arthritis on sexual activity
and relationships. Rheumatology (Oxford), 42(2), 280-286.
Hill J., Bird H.A., Harmer R., Wright V. & Lawton C. (1994) An evaluation of the
effectiveness, safety and acceptability of a nurse practitioner in a
rheumatology outpatient clinic. British Journal of Rheumatology, 33(3),
283-288.
Hill J. & Hale C. (2004) Clinical skills: evidence-based nursing care of people with
rheumatoid arthritis. British Journal of Nursing, 13(14), 852-857.
Hill J., Thorpe R. & Bird H. (2003b) Outcomes for patients with RA: a rheumatology
nurse practitioner clinic compared to standard outpatient care.
Musculoskeletal Care, 1(1), 5-20.
Hsieh H.F. & Shannon S.E. (2005) Three approaches to qualitative content analysis.
Qualitative Health Research, 15(9), 1277-1288.
Huskisson E.C. (1974) Measurement of pain. Lancet, 2(7889), 1127-1131.
Ingadottir B. & Halldorsdottir S. (2008) To discipline a "dog": the essential structure
of mastering diabetes. Qualitative Health Research, 18(5), 606-619.
Jacobi C.E., Boshuizen H.C., Rupp I., Dinant H.J. & van den Bos G.A. (2004) Quality
of rheumatoid arthritis care: the patient's perspective. International Journal for Quality in Health Care, 16(1), 73-81.
Joos E., Peretz A., Beguin S. & Famaey J.P. (1991) Reliability and reproducibility of
visual analogue scale and numeric rating scale for therapeutic evaluation of
pain in rheumatic patients. The Journal of Rheumatology, 18(8), 1269-1270.
80
Josefsson K.A. & Gard G. (2010) Women's experiences of sexual health when living
with rheumatoid arthritis - an explorative qualitative study. BMC Musculoskeletal Disorders, 11, 240.
Klareskog L., Catrina A.I. & Paget S. (2009) Rheumatoid arthritis. Lancet, 373(9664),
659-672.
Krippendorff K. (2004) Content Analysis: An Introduction to Its Methodology, Sage,
Thousand Oaks, California.
Kristensson-Uggla B. (2011) Homo Capax. Texts by Paul Ricoeur. In Swedish:Texter av
Paul Ricoeur. Bokförlaget Daidalos AB, Göteborg.
Kvale S. & Brinkmann S. (2009) InterViews: Learning the craft of qualitative research interviewing. Sage Publications, Los Angeles.
Larrabee J.H. & Bolden L.V. (2001) Defining patient-perceived quality of nursing care.
Journal of Nursing Care Quality, 16(1), 34-60.
Larsson I.E., Sahlsten M.J., Segesten K. & Plos K.A. (2011) Patients' perceptions of
nurses’ behaviour that influence patient participation in nursing care: a critical
incident study. Nursing Research and Practice, 2011, 534060.
Larsson J. & Holmström I. (2007) Phenomenographic or phenomenological analysis:
does it matter? Examples from a study on anaesthesiologists’ work.
International Journal of Qualitative Studies on Health and Well-being, 2(1),
55-64.
Lehuluante A., Nilsson A. & Edvardsson D. (2012) The influence of a person-centred
psychosocial unit climate on satisfaction with care and work. Journal of Nursing Management, 20(3), 319-325.
Lincoln Y., S & Guba E., G (1985) Naturalistic Inquiry. Sage, Beverly Hills CA.
Lindsay B. (2004) Randomized controlled trials of socially complex nursing interven-
tions: creating bias and unreliability? Journal of Advanced Nursing, 45(1), 84-94.
Marton F. (1981) Phenomenography - describing conceptions of the world around us.
Instructional Science, 10(2), 177-200.
Marton F. & Booth S. (eds.) (1997) Learning and Awareness. Mahwah, Lawrence
Erlbaum Associates, Publishers., New Jersey.
Matheson L., Harcourt D. & Hewlett S. (2010) 'Your whole life, your whole world,
it changes': partners’ experiences of living with rheumatoid arthritis.
Musculoskeletal Care, 8(1), 46-54.
81
McCormack B., Dewing J., Breslin L., Coyne-Nevin A., Kennedy K., Manning M.,
Peelo-Kilroe L., Tobin C. & Slater P. (2010) Developing person-centred
practice: nursing outcomes arising from changes to the care environment
in residential settings for older people. International Journal of Older People Nursing, 5(2), 93-107.
McInnes I.B., Vieira-Sousa E. & Fonseca J.E. (2012) Rheumatoid Arthritis: Treatment.
In EULAR Textbook on Rheumatic Diseases (Bijlsma J.W. ed.), BMJ Group,
London, pp. 232-254.
Mercieca C., Landewé R. & Borg A.A. (2012) Spondylarthropathies: Pathogeneses and
Clinical Features. In EULAR Textbook on Rheumatic Diseases (Bijlsma J.W. ed.),
BMJ Group, London, pp. 255-275.
Moe R.H., Uhlig T., Kjeken I., Hagen K.B., Kvien T.K. & Grotle M. (2010)
Multidisciplinary and multifaceted outpatient management of patients with
osteoarthritis: protocol for a randomised, controlled trial. BMC Musculoskeletal Disorders, 11, 253.
Morgan S. & Yoder L.H. (2012) A concept analysis of person-centered care. Journal of Holistic Nursing, 30(1), 6-15.
Morse J. (1999) Qualitative generalizability. Qualitative Health Research, 9(1), 5-6.
Nam J.L., Winthrop K.L., van Vollenhoven R.F., Pavelka K., Valesini G.,
Hensor E.M., Worthy G., Landewe R., Smolen J.S., Emery P. & Buch M.H.
(2010) Current evidence for the management of rheumatoid arthritis with
biological disease-modifying antirheumatic drugs: a systematic literature
review informing the EULAR recommendations for the management of RA.
Annals of the Rheumatic Diseases, 69(6), 976-986.
Ndosi M., Vinall K., Hale C., Bird H. & Hill J. (2011) The effectiveness of nurse-led
care in people with rheumatoid arthritis: a systematic review. International Journal of Nursing Studies, 48(5), 642-654.
Neovius M., Simard J.F. & Askling J. (2011) Nationwide prevalence of rheumatoid
arthritis and penetration of disease-modifying drugs in Sweden. Annals of the
Rheumatic Diseases, 70(4), 624-629.
Nikolaus S., Bode C., Taal E. & van de Laar M.A. (2010) New insights into the
experience of fatigue among patients with rheumatoid arthritis: a qualitative
study. Annals of the Rheumatic Diseases, 69(5), 895-897.
Nolte E. & McKee M. (2008) Caring for people with chronic conditions - A health
system perspective In European Observatory on Health System and Policies
Series. WHO, Avalable from: http://www.euro.who.int/__data/assets/
pdf_file/0006/96468/E91878.pdf, pp. 259.
82
Northern Nurses’ Federation (2003) Ethical guidelines for nursing research in the
Nordic countries. Vård i Norden, 23(4), 1-19.
Ohman M., Soderberg S. & Lundman B. (2003) Hovering between suffering and
enduring: the meaning of living with serious chronic illness. Qualitative Health
Research, 13(4), 528-542.
Oliver S.M. (2011) The role of the clinical nurse specialist in the assessment and
management of biologic therapies. Musculoskeletal Care, 9(1), 54-62.
Olsson L.E., Karlsson J. & Ekman I. (2006) The integrated care pathway reduced the
number of hospital days by half: a prospective comparative study of patients
with acute hip fracture. Journal of Orthopaedic Surgery and Research, 1, 3.
Ovretveit J., Keller C., Forsberg H.H., Essen A., Lindblad S. & Brommels M. (2013) Continuous innovation: developing and using a clinical database with new technology for patient-centred care - the case of the Swedish quality register for arthritis. International Journal for Quality in Health Care, E-published January 29, 2013.
Palmer D. & El Miedany Y. (2010) Biological nurse specialist: goodwill to good
practice. British Journal of Nursing, 19(8), 477-480.
Polit D.F. & Beck C.T. (eds.) (2012) Nursing Research. Generating and Assessing Evidence for Nursing Practice. Ninth edition. Wolters Kluwer Health/
Lippincott Williams and Wilkins, Philadelphia PA.
Prevoo M.L., van 't Hof M.A., Kuper H.H., van Leeuwen M.A., van de Putte L.B. &
van Riel P.L. (1995) Modified disease activity scores that include twenty-
eight-joint counts. Development and validation in a prospective longitudinal
study of patients with rheumatoid arthritis. Arthritis & Rheumatism, 38(1),
44-48.
Price D.D., McGrath P.A., Rafii A. & Buckingham B. (1983) The validation of visual
analogue scales as ratio scale measures for chronic and experimental pain.
Pain, 17(1), 45-56.
Primdahl J., Wagner L., Holst R. & Horslev-Petersen K. (2012) The impact on self-
efficacy of different types of follow-up care and disease status in patients with
rheumatoid arthritis--a randomized trial. Patient Education and Counseling, 88(1), 121-128.
Rawnsley M.M. (1998) Ontology, epistemology, and methodology: a clarification.
Nursing Science Quarterly, 11(1), 2-4.
Reveille J.D., Witter J.P. & Weisman M.H. (2012) Prevalence of axial spondylarthritis
in the United States: estimates from a cross-sectional survey. Arthritis Care &
Research (Hoboken), 64(6), 905-910.
83
Rezaei H., Saevarsdottir S., Forslind K., Albertsson K., Wallin H., Bratt J.,
Ernestam S., Geborek P., Pettersson I.F. & van Vollenhoven R.F. (2012)
In early rheumatoid arthritis, patients with a good initial response to metho-
trexate have excellent 2-year clinical outcomes, but radiological progression is
not fully prevented: data from the methotrexate responders population in the
SWEFOT trial. Annals of the Rheumatic Diseases, 71(2), 186-191.
Roussou E., Iacovou C. & Georgiou L. (2012) Development of a structured on-site
nursing program for training nurse specialists in rheumatology. Rheumatology
International, 32(6), 1685-1690.
Rudwaleit M. (2010) New approaches to diagnosis and classification of axial and
peripheral spondyloarthritis. Current Opinion in Rheumatology, 22(4), 375-380.
Rudwaleit M., van der Heijde D., Landewe R., Akkoc N., Brandt J., Chou C.T.,
Dougados M., Huang F., Gu J., Kirazli Y., Van den Bosch F., Olivieri I.,
Roussou E., Scarpato S., Sorensen I.J., Valle-Onate R., Weber U., Wei J. &
Sieper J. (2011) The assessment of spondyloarthritis international society
classification criteria for peripheral spondyloarthritis and for spondyloarthritis
in general. Annals of the Rheumatic Diseases, 70(1), 25-31.
Ryan S. (1998) The essence of rheumatology nursing. Nursing Standard, 13(13-15),
52-54.
Ryan S. (2006) The psychological aspects of rheumatic disease. In Rheumatology Nursing: A Creative Approach. 2nd edition (Hill J. ed.), John Wiley & Sons Ltd,
West Sussex, pp. 151-192.
Ryan S., Hassell A., Dawes P. & Kendall S. (2003) Control perceptions in patients with
rheumatoid arthritis: the impact of the medical consultation. Rheumatology
(Oxford), 42(1), 135-140.
Ryan S., Hassell A., Thwaites C., Manley K. & Home D. (2006a) Exploring the
perceived role and impact of the nurse consultant. Musculoskeletal Care, 4(3),
167-173.
Ryan S., Hassell A.B., Lewis M. & Farrell A. (2006b) Impact of a rheumatology expert
nurse on the wellbeing of patients attending a drug monitoring clinic. Journal
of Advanced Nursing, 53(3), 277-286.
Ryan S. & Voyce A. (2007) The role of the nurse in drug therapy. In Drug therapy in
rheumatology nursing (Ryan S. ed.), John Wiley & Sons Ltd, West Sussex,
pp. 163-242.
84
Saber T.P., Ng C.T., Renard G., Lynch B.M., Pontifex E., Walsh C.A., Grier A.,
Molloy M., Bresnihan B., Fitzgerald O., Fearon U. & Veale D.J. (2010)
Remission in psoriatic arthritis: is it possible and how can it be predicted?
Arthritis Research & Therapy, 12(3), R94.
Sahlsten M.J., Larsson I.E., Sjostrom B., Lindencrona C.S. & Plos K.A. (2007) Patient
participation in nursing care: towards a concept clarification from a nurse
perspective. Journal of Clinical Nursing, 16(4), 630-637.
Sahlsten M.J., Larsson I.E., Sjostrom B. & Plos K.A. (2008) An analysis of the concept
of patient participation. Nursing Forum, 43(1), 2-11.
Schwartzman S. & Morgan G.J., Jr. (2004) Does route of administration affect the
outcome of TNF antagonist therapy? Arthritis Research & Therapy, 6 Suppl 2,
S19-23.
Scott D.L. (2012) Biologics-based therapy for the treatment of rheumatoid arthritis.
Clinical Pharmacology & Therapeutics, 91(1), 30-43.
Scott D.L., Wolfe F. & Huizinga T.W. (2010) Rheumatoid arthritis. Lancet, 376(9746),
1094-1108.
Shiu A.T., Lee D.T. & Chau J.P. (2012) Exploring the scope of expanding advanced
nursing practice in nurse-led clinics: a multiple-case study. Journal of Advanced
Nursing, 68(8), 1780-1792.
Sieper J., Carron P. & van den Bosch F. (2012) Spondylarthropathies: Treatment. In
EULAR Textbook on Rheumatic Diseases (Bijlsma J.W. ed.), BMJ Group,
London, pp. 276-300.
Simard J.F., Arkema E.V., Sundstrom A., Geborek P., Saxne T., Baecklund E.,
Coster L., Dackhammar C., Jacobsson L., Feltelius N., Lindblad S., Rantapaa-
Dahlqvist S., Klareskog L., van Vollenhoven R.F., Neovius M. & Askling J.
(2011) Ten years with biologics: to whom do data on effectiveness and safety
apply? Rheumatology (Oxford), 50(1), 204-213.
Singh J.A., Furst D.E., Bharat A., Curtis J.R., Kavanaugh A.F., Kremer J.M.,
Moreland L.W., O'Dell J., Winthrop K.L., Beukelman T., Bridges S.L., Jr.,
Chatham W.W., Paulus H.E., Suarez-Almazor M., Bombardier C.,
Dougados M., Khanna D., King C.M., Leong A.L., Matteson E.L.,
Schousboe J.T., Moynihan E., Kolba K.S., Jain A., Volkmann E.R.,
Agrawal H., Bae S., Mudano A.S., Patkar N.M. & Saag K.G. (2012)
2012 update of the 2008 American College of Rheumatology recommenda-
tions for the use of disease-modifying antirheumatic drugs and biologic
agents in the treatment of rheumatoid arthritis. Arthritis Care & Research
(Hoboken), 64(5), 625-639.
85
Sjostrom B. & Dahlgren L.O. (2002) Applying phenomenography in nursing research.
Journal of Advanced Nursing, 40(3), 339-345.
Slater L. (2006) Person-centredness: a concept analysis. Contemporary Nurse, 23(1),
135-144.
Smolen J.S., Landewe R., Breedveld F.C., Dougados M., Emery P., Gaujoux-Viala C.,
Gorter S., Knevel R., Nam J., Schoels M., Aletaha D., Buch M., Gossec L.,
Huizinga T., Bijlsma J.W., Burmester G., Combe B., Cutolo M., Gabay C.,
Gomez-Reino J., Kouloumas M., Kvien T.K., Martin-Mola E., McInnes I.,
Pavelka K., van Riel P., Scholte M., Scott D.L., Sokka T., Valesini G.,
van Vollenhoven R., Winthrop K.L., Wong J., Zink A. & van der Heijde D.
(2010) EULAR recommendations for the management of rheumatoid
arthritis with synthetic and biological disease-modifying antirheumatic drugs.
Annals of the Rheumatic Diseases, 69(6), 964-975.
Swedish Research Council (2011) Good Research Practice, Sweden Research Council.
Report series 3:2011 Bromma, Sweden. Available from: http://www.vr.se/
download/18.3a36c20d133af0c1295800030/
Good+Research+Practice+3.2011_webb.pdf.
Temmink D., Hutten J.B., Francke A.L., Abu-Saad H.H. & van der Zee J. (2000)
Quality and continuity of care in Dutch nurse clinics for people with
rheumatic diseases. International Journal for Quality in Health Care, 12(2),
89-95.
Temmink D., Hutten J.B., Francke A.L., Rasker J.J., Abu-Saad H.H. & van der Zee J.
(2001) Rheumatology outpatient nurse clinics: a valuable addition? Arthritis &
Rheumatism, 45(3), 280-286.
Tengland P.A. (2008) Empowerment: a conceptual discussion. Health Care Analysis, 16(2), 77-96.
Ternstedt B.-M., Österlind J., Henoch I. & Andershed B. (2012) The 6 S’s. A model of
person-centred palliative care. In Swedish: De 6 S:n. En modell för person-centrerad palliativ vård. Studentlitteratur, Lund.
Tijhuis G.J., Zwinderman A.H., Hazes J.M., Breedveld F.C. & Vlieland P.M. (2003)
Two-year follow-up of a randomized controlled trial of a clinical nurse
specialist intervention, inpatient, and day patient team care in rheumatoid
arthritis. Journal of Advanced Nursing, 41(1), 34-43.
Tracey D., Klareskog L., Sasso E.H., Salfeld J.G. & Tak P.P. (2008) Tumor necrosis
factor antagonist mechanisms of action: a comprehensive review.
Pharmacology & Therapeutics, 117(2), 244-279.
86
Wahlstrom R., Dahlgren L.O., Tomson G., Diwan V.K. & Beermann B. (1997)
Changing primary care doctors' conceptions - A qualitative approach to
evaluating an intervention. Advances in Health Sciences Education: Theory and Practice, 2(3), 221-236.
Walker J. (2012) Rheumatoid arthritis: role of the nurse and multidisciplinary team.
British Journal of Nursing, 21(6), 334, 336-339.
van der Heijde D. & Boyesen P. (2012) Measuring Disease Activity and Damage in
Arthritis. In EULAR Textbook on Rheumatic Diseases (Bijlsma J.W. ed.), BMJ
Group, London, pp. 1107-1134.
van Eijk-Hustings Y., van Tubergen A., Bostrom C., Braychenko E., Buss B., Felix J.,
Firth J., Hammond A., Harston B., Hernandez C., Huzjak M., Korandova J.,
Kukkurainen M.L., Landewe R., Mezieres M., Milincovic M., Moretti A.,
Oliver S., Primdahl J., Scholte-Voshaar M., de la Torre-Aboki J., Waite-
Jones J., Westhovens R., Zangi H.A., Heiberg T. & Hill J. (2012) EULAR
recommendations for the role of the nurse in the management of chronic
inflammatory arthritis. Annals of the Rheumatic Diseases, 71(1), 13-19.
van Riel P.L., van Gestel A.M. & van de Putte L.B. (1996) Development and validation
of response criteria in rheumatoid arthritis: steps towards an international
consensus on prognostic markers. British Journal of Rheumatology, 35 Suppl
2, 4-7.
van Vollenhoven R.F. & Askling J. (2005) Rheumatoid arthritis registries in Sweden.
Clinical and Experimental Rheumatology, 23(5 Suppl 39), S195-200.
van Vollenhoven R.F., Geborek P., Forslind K., Albertsson K., Ernestam S.,
Petersson I.F., Chatzidionysiou K. & Bratt J. (2012) Conventional
combination treatment versus biological treatment in methotrexate-refractory
early rheumatoid arthritis: 2 year follow-up of the randomised, non-blinded,
parallel-group Swefot trial. Lancet, 379(9827), 1712-1720.
Vander Cruyssen B., Van Looy S., Wyns B., Westhovens R., Durez P.,
Van den Bosch F., Veys E.M., Mielants H., De Clerck L., Peretz A.,
Malaise M., Verbruggen L., Vastesaeger N., Geldhof A., Boullart L. &
De Keyser F. (2005) DAS28 best reflects the physician's clinical judgment of
response to infliximab therapy in rheumatoid arthritis patients: validation of
the DAS28 score in patients under infliximab treatment. Arthritis Research &
Therapy, 7(5), R1063-1071.
87
Wells G., Becker J.C., Teng J., Dougados M., Schiff M., Smolen J., Aletaha D. &
van Riel P.L. (2009) Validation of the 28-joint Disease Activity Score
(DAS28) and European League Against Rheumatism response criteria based
on C-reactive protein against disease progression in patients with rheumatoid
arthritis, and comparison with the DAS28 based on erythrocyte
sedimentation rate. Annals of the Rheumatic Diseases, 68(6), 954-960.
Westhoff G., Buttgereit F., Gromnica-Ihle E. & Zink A. (2008) Morning stiffness and
its influence on early retirement in patients with recent onset rheumatoid
arthritis. Rheumatology (Oxford), 47(7), 980-984.
WHO (2010) Nurses and Midwives: A force for health - Survey on the situation of
nursing and midwifery in the Member States of the European Region of the
World Health Organization 2009. Available from: http://www.euro.who.int/
__data/assets/pdf_file/0019/114157/E93980.pdf.
Vliet Vlieland T.P. & Li L.C. (2009) Rehabilitation in rheumatoid arthritis and
ankylosing spondylitis: differences and similarities. Clinical and Experimental
Rheumatology, 27(4 Suppl 55), S171-178.
Vliet Vlieland T.P. & Pattison D. (2009) Non-drug therapies in early rheumatoid
arthritis. Best Practice & Research Clinical Rheumatology, 23(1), 103-116.
WMA (2008) World Medical Association declaration of Helsinki. Ethical principles
for medical research involving human subjects. Available from:
http://www.wma.net/en/30publications/10policies/b3/17c.pdf.
School of Health Sciences Dissertation Series
1. Linddahl, Iréne. (2007). Validity and Reliability of the Instrument DOA; A Dialogue about Working Ability. Licentiate Thesis. School of Health Sciences Dissertation Series No 1. ISBN 978-91-85835-00-3
2. Widäng, Ingrid. (2007). Patients’ Conceptions of Integrity within Health Care Illuminated from a Gender and a Personal Space Boundary Perspective. Licentiate Thesis. School of Health Sciences Dissertation Series No 2. ISBN 978-91-85835-01-0
3. Ernsth Bravell, Marie. (2007). Care Trajectories in the oldest old. Doctoral Thesis. School of Health Sciences Dissertation Series No 3. ISBN 978-91-85835-02-7
4. Almborg, Ann-Helene. (2008). Perceived Participation in Discharge Planning and Health Related Quality of Life after Stroke. Doctoral Thesis. School of Health Sciences Dissertation Series No 4. ISBN 978-91-85835-03-4
5. Rosengren, Kristina. (2008). En hälso- och sjukvårdsorganisation i förändring – från distanserat till delat ledarskap. Doctoral Thesis. School of Health Sciences Dissertation Series No 5. ISBN 978-91-85835-04-1
6. Wallin, Anne-Marie. (2009). Living with diabetes within the framework of Swedish primary health care: Somalian and professional perspectives. Doctoral Thesis. School of Health Sciences Dissertation Series No 6. ISBN 978-91-85835-05-8
7. Dahl, Anna. (2009). Body Mass Index, Cognitive Ability, and Dementia: Prospective Associations and Methodological Issues in Late Life. Doctoral Thesis. School of Health Sciences Dissertation Series No 7. ISBN 978-91-85835-06-5
8. Einarson, Susanne. (2009). Oral health-related quality of life in an adult population. Licentiate Thesis. School of Health Sciences Dissertation Series No 8. ISBN 978-91-85835-07-2
9. Harnett, Tove. (2010). The Trivial Matters. Everyday power in Swedish elder care. Doctoral Thesis. School of Health Sciences Dissertation Series No 9. ISBN 978-91-85835-08-9
10. Josefsson, Eva. (2010). Immigrant background and orthodontic treatment need - Quantitative and qualitative studies in Swedish adolescents. Doctoral Thesis. School of Health Sciences Dissertation Series No 10. ISBN 978-91-85835-09-6
11. Lindmark, Ulrika. (2010). Oral Health and Sense of Coherence - Health Behaviours, Knowledge, Attitudes and Clinical Status. Doctoral Thesis. School of Health Sciences Dissertation Series No 11. ISBN 978-91-85835-10-2
12. Pihl, Emma. (2010). The Couples’ Experiences of Patients’ Physical Limitation in Daily Life Activities and Effects of Physical Exercise in Primary Care when having Chronic Heart Failure. Doctoral Thesis. School of Health Sciences Dissertation Series No 12. ISBN 978-91-85835-11-9
13. Nilsson, Stefan. (2010). Procedural and postoperative pain management in children - experiences, assessments and possibilities to reduce pain, distress and anxiety. Doctoral Thesis. School of Health Sciences Dissertation Series No 13. ISBN 978-91-85835-12-6
14. Algurén, Beatrix. (2010). Functioning after stroke - An application of the International Classification of Functioning, Disability and Health (ICF). Doctoral Thesis. School of Health Sciences Dissertation Series No 14. ISBN 978-91-85835-13-3
15. Kvarnström, Susanne. (2011). Collaboration in Health and Social Care - Service User Participation and Teamwork in Interprofessional Clinical Microsystems. Doctoral Thesis. School of Health Sciences Dissertation Series No 15. ISBN 978-91-85835-14-0
16. Ljusegren, Gunilla. (2011). Nurses’ competence in pain management in children. Licentiate Thesis. School of Health Sciences Dissertation Series No 16. ISBN 978-91-85835-15-7
17. Arvidsson, Susann. (2011). Health promoting factors in people with chronic musculoskeletal pain or with rheumatic diseases: a descriptive and interventional study. Doctoral Thesis. School of Health Sciences Dissertation Series No 17. ISBN 978-91-85835-16-4
18. Berggren, Elisabeth. (2011) Identity construction and memory after Subarachnoid Haemorrhage - Patients’ accounts and relatives’ and patients’ statements in relation to memory tests. Licentiate Thesis. School of Health Sciences Dissertation Series No 18. ISBN 978-91-85835-17-1
19. Ericsson, Iréne. (2011) Välbefinnande och demens - Aspekter på välbefinnande hos äldre personer med måttlig till svår demenssjukdom. Doctoral Thesis. School of Health Sciences Dissertation Series No 19. ISBN 978-91-85835-18-8
20. Silén, Marit. (2011) Encountering ethical problems and moral distress as a nurse - Experiences, contributing factors and handling. Doctoral Thesis. School of Health Sciences Dissertation Series No 20. ISBN 978-91-85835-19-5
21. Munck, Berit. (2011) Medical technology and its impact on palliative home care as a secure base experienced by patients, next-of-kin and district nurses. Doctoral Thesis. School of Health Sciences Dissertation Series No 21. ISBN 978-91-85835-20-1
22. Jacobsson, Brittmarie. (2011) On Oral Health in Young Individuals with Foreign and Swedish Backgrounds. Licentiate Thesis. School of Health Sciences Dissertation Series No 22. ISBN 978-91-85835-21-8
23. Bergsten, Ulrika. (2011) Patients’ and healthcare providers’ experiences of the cause, management and interaction in the care of rheumatoid arthritis. Doctoral Thesis. School of Health Sciences Dissertation Series No 23. ISBN 978-91-85835-22-5
24. Wilińska, Monika. (2012) Spaces of (non-)ageing - A discursive study of I nequalities we live by. Doctoral Thesis. School of Health Sciences Dissertation Series No 24. ISBN 978-91-85835-23-2
25. Wagman, Petra. (2012) Conceptualizing life balance from an empirical and occupational therapy perspective. Doctoral Thesis. School of Health Sciences Dissertation Series No 25. ISBN 978-91-85835-24-9
26. Golsäter, Marie. (2012) Hälsosamtal som metod att främja barns och ungdomars hälsa – en utmanande uppgift. Doctoral Thesis. School of Health Sciences Dissertation Series No 26. ISBN 978-91-85835-25-6
27. Celsing Fåhraeus, Christina. (2012) Övervikt/fetma hos barn, ungdomar och unga vuxna i relation till vikt, viktutveckling och kariesförekomst. Licentiate Thesis. School of Health Sciences Dissertation Series No 27. ISBN 978-91-85835-26-3
28. Åhnby, Ulla. (2012) Att möjliggöra äldre människors delaktighet i vardagen - Framtidsverkstad som idé och metod. Licentiate Thesis. School of Health Sciences Dissertation Series No 28. ISBN 978-91-85835-27-0
29. Ståhl, Ylva. (2012) Documentation in Child and School Health Services Mapping health information from a biopsychosocial perspective using the ICF-CY. Doctoral Thesis. School of Health Sciences Dissertation Series No 29. ISBN 978-91-85835-28-7
30. Åkerman, Eva. (2012) Assessment and tools for follow up of patients’ recovery after intensive care. Doctoral Thesis. School of Health Sciences Dissertation Series No 30. ISBN 978-91-85835-29-4
31. Pietilä, Sirpa. (2012) Tvillingskap genom livet - individualitet och relation i äldre tvillingars livsberättelser. Doctoral Thesis. School of Health Sciences Dissertation Series No 31. ISBN 978-91-85835-30-0
32. Gimbler Berglund, Ingalill. (2012) Nurse anaesthetist’s interactions and assessment of children’s anxiety. Licentiate Thesis. School of Health Sciences Dissertation Series No 32. ISBN 978-91-85835-31-7
33. Fristedt, Sofi. (2012) Occupational participation through community mobility among older men and women. Doctoral Thesis. School of Health Sciences Dissertation Series No 33. ISBN 978-91-85835-32-4
34. Andersson, Bodil. (2012) Radiographers’ Professional Competence - Development of a context-specific instrument. Doctoral Thesis. School of Health Sciences Dissertation Series No 34. ISBN 978-91-85835-33-1
35. Siouta, Eleni. (2012) Communication Patterns in Consultations Between Patients with Atrial Fibrillation and Health Professionals. Licentiate Thesis. School of Health Sciences Dissertation Series No 35. ISBN 978-91-85835-34-8
36. Selander, Helena. (2012) Driving assessment and driving behavior. Doctoral Thesis. School of Health Sciences Dissertation Series No 36. ISBN 978-91-85835-35-5
37. Sjölander, Catarina. (2012) Consequences for family members of being informal caregivers to a person with advanced cancer. Doctoral Thesis. School of Health Sciences Dissertation Series No 37. ISBN 978-91-85835-36-2
38. Anastassaki Köhler, Alkisti. (2012) On temporomandibular disorders – Time trends, associated factors, treatment need and treatment outcome. Doctoral Thesis. School of Health Sciences Dissertation Series No 38. ISBN 978-91-85835-37-9
39. Berggren, Elisabeth. (2012) Daily life after Subarachnoid Haemorrhage – Identity construction, patients’ and relatives’ statements about patients’ memory, emotional status and activities of living. Doctoral Thesis. School of Health Sciences Dissertation Series No 39. ISBN 978-91-85835-38-6
40. Sigurðardóttir, Sigurveig H. (2013) Patterns of care and support in old age. Doctoral Thesis. School of Health Sciences Dissertation Series No 40. ISBN 978-91-85835-39-3
41. Larsson, Ingrid. (2013) Person-centred care in rheumatology nursing in patients undergoing biological therapy: An explorative and interventional study. Doctoral Thesis. School of Health Sciences Dissertation Series No 41. ISBN 978-91-85835-40-9