title registration for a review proposal: community-led ... · review by the social care institute...

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Title registration for a review proposal:

Community-led practical and/or social support interventions for adults living at home with palliative and end of life care

needs.

To start a Campbell review, a title must be registered and approved by the appropriate Campbell review group. For information about the title registration and protocol and review steps, visit the Campbell website: http://www.campbellcollaboration.org/systematic_reviews/index.php Submitted to the Coordinating Group of: __ Crime and Justice __ Education x Social Welfare __ Other Plans to co-register: x No __ Yes __ Cochrane __ Other __ Maybe Instruction: Briefly address each item below. Provide enough precise information to allow us the ability to evaluate the scope of the review and its appropriateness for the Campbell Collaboration. Note the review proposal should not overlap with existing Campbell and Cochrane published reviews or registered reviews in progress.

TITLE OF THE REVIEW

Community social and practical support interventions for adults living at home with

palliative and end of life care needs

BACKGROUND

Briefly describe and define the problem For most people, home is the preferred place of care and death (DeRoo et al., 2014)

and in most developed countries this choice is supported by public policy. For

example, in Ireland national policy has, for more than 50 years, focused on trying to

ensure that older people are enabled to live in their own homes or to ‘age in place’

for as long as possible, with the help of both formal and informal services


(Interdepartmental Committee on Care of the Aged, 1968). However, only one in

four people actually die at home (CSO, 2012) and there is considerable variation in

that proportion both nationally and internationally (IHF, 2014). Furthermore, there

are myriad factors influencing the likelihood of someone dying at home, including

the person’s illness and associated symptoms, their socio-economic and

demographic status and of course, the availability of local services (SCIE, 2014).

Recent palliative care research prioritisation studies in the UK (Palliative and end of

life care Priority Setting Partnership, 2015) and in Ireland (AIIHPC, 2015) have

indicated that further studies are necessary to determine the benefits, and best ways,

of providing care in the patient’s home and to examine how can home care be

maintained for as long as possible.

Studies suggest that the single most important factor in determining whether or not

someone dies at home is the presence of a carer (usually a family member) (Murtagh

et al., 2012). However, research highlights that family carers often experience a wide

range of unmet needs, physical and emotional strain and financial burden (Pivodic

et al., 2014). Despite the development of specialist palliative care Hospice at Home

services and models of Primary Care, people who are dying, and their

families/carers, can experience great isolation and can feel excluded from social

circles and distanced from their communities (Dying Matters, 2009). A recent

review by the Social Care Institute For Excellence (Windle, 2011) highlights the

detrimental impact of such loneliness and social isolation on health and

psychosocial wellbeing and, arguably, this may impact most on the quality of life of

people with palliative care needs and their families (Sand and Strang, 2006). Social

isolation can also pose a barrier to the successful execution of instrumental activities

of daily living. For example, a UK study by Macmillan (2012) found that more than

1 in 6 (18%) people living with cancer were unable to collect a prescription for their

medication, whilst this proportion increased to 1 in 4 (24%) amongst women. This

is only one example of the many small practical, but significant needs of those who

find themselves socially isolated due to advanced and end stage illness.

Existing evidence suggests that informal support networks may help to ‘naturalise’

dying; offer better support to the person and family; reduce isolation; target

professional support more effectively and equitably; and enable choice to die at

home (Sallnow et al, 2015; Brown and Walter, 2013). Such networks are at the heart

of Health Promoting Palliative Care theory (Kellehear, 1999), one component of

which encourages communities to care for people and their families as they

encounter death and in turn build Compassionate Communities. These may be

defined as communities that recognise that “care for one another at times of health

crisis, and personal loss, is not simply a task solely for health and social services,

but is everyone’s responsibility” (Kellehear 2005, 2014).

Such community-led interventions focus on the development and delivery of a

social/practical model of care and support for people living at home with

palliative/end-of-life care needs and are usually provided and/or led by the

community. Thus, they tend to involve the use of volunteers and/or naturally

occurring personal informal networks (Kellehear, 2005; Barry and Patel, 2013). The

idea underpinning these models is that, by drawing on the resources of the

community, it is possible, not only to meet a person’s social and/or practical needs,


but also more broadly to build capacity and resilience in the community and

naturalise the process of care, dying, death and bereavement.

Community-led interventions for people with palliative care needs and their carers

have been implemented in several countries internationally and initial positive

findings/outcomes reported (Barry and Patel, 2013). A recent systematic review

(Sallnow et al., 2015) found engaging communities can lead to improved outcomes

for carers such as decreased fatigue or isolation, increase the size of caring networks

and can influence factors such as place of death and involvement of palliative care

services. In the UK, Severn Hospice has developed a Compassionate Communities

(Co-Co) befriending model where volunteers provide practical help to people facing

the end of life with day-to-day activities such as shopping, gardening and the

collection of prescribed medication. The available evidence suggests that this model

has reduced patient isolation and led to fewer unscheduled healthcare visits to

primary care and other allied health services, thereby reducing demand on NHS

staff and budgets (Cronin, 2013).

In India, the Neighbourhood Network in Palliative Care (NNPC) involves the

community in providing social, spiritual and emotional support to people at home,

facing the end of life, supporting more than 2500 patients per week (Kumar, 2007;

Sallnow et al., 2010; 2013). In Spain, the SAIATU project enables the provision of

home-based social support services to complement palliative clinical services, and to

enhance the care provided to individuals living with advanced illness and their

families. An evaluation showed that those who had received this intervention had

fewer unscheduled health service visits (A&E, OPD and hospital admission) when

compared to the control group. In addition, both patients and families rated the

intervention positively, whilst the cost effectiveness of the model was also

demonstrated (Molina et al., 2013; Solinís et al., 2014).

In Ireland, Milford Care Centre, the specialist palliative care provider for the Mid-

West has developed a new model of care called the Good Neighbour Partnership in

association with the local community to provide practical and/or social support to

people living at home in their last year of life (McLoughlin, 2013). A study, led by

the first author, has just got underway to assess the impact of the model on several

key outcomes including: Instrumental Activities of Daily Living (IADLs); Quality of

Life; social connectedness; unscheduled health service utilisation; caregiver burden;

and recipient satisfaction (McLoughlin et al., in submission). This will involve an

RCT, conducted within the MRC Framework for the Evaluation of Complex

Interventions (Campbell et al., 2000; Craig et al., 2008); the study will also assess

the impact on both the volunteers’ death anxiety and their confidence

communicating with people facing the end of life.

Internationally, there is a growing policy impetus toward the increased provision of

community-led interventions as described above (Dept. of Health and Children,

2014; NCPC, 2012). However, there has not yet been a systematic review to identify,

appraise and synthesise the available evidence in order to assess the effectiveness of

community/volunteer-led, practical and social support interventions in improving

health and psychosocial outcomes for people and/or their carers, living at home with

palliative care needs. Therefore, our proposed review addresses an important gap in


the evidence base for both home-based palliative care interventions as well as

adding to the literature on health promoting palliative care.

A number of Cochrane reviews of home-based palliative and supportive care have

assessed the effectiveness of formal services specifically provided by a team of

healthcare professionals, who are qualified in the delivery of either specialist or

intermediate level palliative care (Gomes et al., 2013; Shepperd and Iliffe, 1998;

Shepperd et al., 2011). Other Cochrane reviews have focused on supporting carers

with interventions that focus on areas such as grief, sleep and pain management

(Candy et al., 2011) or the provision of specific elements of palliative care, such as

religious and spiritual support (Candy et al., 2012). One review (Mead et al., 2010)

examined the effects of befriending interventions on depressive symptoms and

distress, but unlike our proposed review, this involved multiple, non-palliative care

populations, and was health professional-led.

By contrast, the interventions of interest in our proposed review are those that: (a)

are community/volunteer/lay-person led; and (b) focus specifically on the provision

of social and practical care and support for a person and their family at home during

their last year of life. These are important, as most of the time in a person’s last year

of life is spent at home, usually within a network of family, friends and neighbours

(Grande et al., 1997). Such community-led support seeks to augment (and not

replace) formal service provision by qualified healthcare professionals in palliative

and primary care, and is at the heart of the theoretical conceptualisation of Health

Promoting Palliative Care (Kellehear, 2005; Barry and Patel, 2013).

Briefly describe and define the population Participants will include all adults (over 18 years of age) with an advanced,

progressive, life-limiting condition/illness/disease living at home, considered to be

in their last year of life and/or have palliative and end of life care needs.

We will therefore consider those who: 1) have a disease described as ‘advanced’,

’terminal’, ‘end-stage’ – this may include (but is not restricted to) diseases such as

cancer, dementia, frailty, neurological disease, heart / vascular disease, respiratory

disease, kidney disease or liver disease; (2) are considered to be ‘end-of-life’,

‘palliative’ or ‘dying’ by health care professionals or the researchers conducting the

study; (3) have a prognosis of less than a year or (4) are in receipt of palliative care.

In addition to considering the population of people who are facing the end of life, we

will include (in separate meta-analyses) the carers/family members of these adults.

In this review, carers will be defined as “an unpaid person providing physical,

practical and/or emotional care and support to a relative or friend” (Candy et al.,

2011). Family members may / may not be carers and may/may not be living in the

same place of residence as the adult with palliative care needs. Where a family

member is not directly caring for a person with palliative care needs, and does not

live directly with them, they may still benefit from the intervention (e.g. through

reduced levels of worry or concern for the person or a reduced demand on visiting

the person solely to meet their social / practical needs).


Briefly describe and define the intervention Interventions to be included will address practical and/or social support needs for

the population described above and will be led by the community (i.e. involve

community supports and resources and/or utilise volunteers/lay people) and will be

provided in addition to usual care. Usual care may include models of healthcare-led

primary and/or palliative care such as Hospice at Home Services.

Interventions may be multi-component in nature. For example, they may include

the provision of information on issues such as advance planning, practical or

emotional support, facilitation of coping skills, life story work or befriending and can

be delivered in person directly, or via phone or electronically.

Interventions may benefit the family member/caregiver/patient directly or

indirectly (via provision of support to the other party). Interventions of any

duration will be included. Interventions delivered by healthcare professionals will

be excluded.

Comparators include standard care (e.g. healthcare professional led services that

may include primary care led palliative care or hospice led specialist palliative care

at home), wait-list control, head to head treatments, or no treatment.

Outcomes: What are the intended effects of the intervention?

The traditional RCT approach is designed to focus on mortality, morbidity and

survival but, as outlined by Aoun et al. (2013), these outcomes are not necessarily of

importance and/or relevance in the context of palliative and/or end of life care.

More important is a focus on quality of life as a primary outcome in line with

palliative care philosophy (WHO, 2015). The following primary and secondary

outcomes will be assessed:

Primary outcomes

Quality of Life. Measures of quality of life may be generic, usually

comprising of multiple domains that may be physical (for example,

symptoms and functional status), psychological (for example, cognition and

emotions), social and cultural (for example, social network, organisational

and financial), and spiritual (for example, beliefs, meaning and religion)

domains, which are all interlinked. As palliative care aims to provide holistic

care for patients and families, an outcome measure should ideally cover

several of these domains. Other measures are specific, focusing on one

domain e.g. symptom control. Potential measures include the Palliative Care

Outcome Scale (POS) (Hearn and Higginson, 1999); POS-S Symptom List;

Distress Thermometer (Roth et al., 1998); Edmonton Symptom Assessment

Scale (ESAS) (Bruera et al 1991); Memorial Symptom Assessment Scale

(MSAS) (Portenoy et al., 1994); Hospital Anxiety and Depression Scale

(HADS) (Zigmund and Snaith, 1983); EORTC-QLQ-C30 (Aaronson et al.,

1993); EORTC-QLQ-C15 PAL (Groenvold et al., 2006).

Wellbeing. We understand wellbeing is a broad category, covering several

domains and dimensions that often intersect. and will work towards a more

operationalised list of specific outcomes in the protocol and post-search


Impact on health service use e.g. admission to inpatient facilities; primary

care service visits.

Secondary outcomes

A number of outcome categories have been agreed and upon review, the outcome

measures for each will be listed and agreement reached on the most clinically

important outcome for each associated category.

Physical health outcomes (e.g. pain, fatigue, tiredness and sleeping

difficulties, ability to engage in Instrumental Activities in Daily Life (e.g. as

measured by the Lawton IADL Scale (Graf, 2008)).).

Psychological and psychosocial outcomes (i.e. coping, anxiety, depression,

burden (e.g. as measured by The Zarit Burden Interview - Bedard et al.,

2001)., loneliness (e.g. as measured by UCLA Loneliness Scale (Russell et al.,

1978)

Social support outcomes (frequency of support, type of support, change in

social network, social connectedness, social captial).

Relationship outcomes (quality of relationships).

Economic outcomes (resource use and cost).

Care outcomes (e.g. duration of and satisfaction with care, preferred place of

care, place of death).

Adverse outcomes (e.g. distress from participating in the intervention;

attrition).

Impact on bereavement outcome (for carers only)

OBJECTIVES

The objective of this review is to examine the effectiveness of community-led

practical and/or social support interventions for community dwelling adults (and

their carers/family members) with palliative and end of life care needs, in their last

year of life on palliative/quality of life outcomes, well being and health service use.

METHODOLOGY

What types of studies designs are to be included and excluded? We will include Randomised Controlled Trials (RCTs). Due to the anticipated

limited research in this area, we will also include quasi-RCTs, controlled before and

after studies (where allocation to groups occurs at both the individual and cluster

levels) and interrupted time series studies based on the inclusion criteria specified

by Ryan (2011).

Your method of synthesis:


Comparison of studies based on type of intervention, setting, participants and

delivery will be made. Based on this comparison, if we consider the studies

sufficient in number and comparable to conduct a meta-analysis, this will completed

for RCTs, cluster RCTs and quasi RCTs using a random-effects model. Descriptive

data will be provided for all other types of study to include, for example, median

effect sizes and inter-quartile ranges. We will assess and report on the

methodological risk of bias of included studies in accordance with the Cochrane

Handbook (Higgins, 2011). Outcomes will be grouped by length of follow-up (e.g.,

post-intervention, 0-12 months, 12-24 months, as appropriate (whilst taking into

account the potential challenges of attrition and the limited timeframe for follow-up

in this population due to the nature of their condition). Multiple effect sizes for

different outcomes will be listed separately to aid clarity of interpretation,

particularly if the elements within the Quality of Life domains go in different

directions.

It is anticipated however, that included studies will differ in terms of interventions,

type of illness, participants, study design and outcome measures, resulting in clinical

and methodological heterogeneity. Therefore, meta-analyses may not be

appropriate and we will present a narrative review describing differences in effects

between studies in each group.

SOURCES OF SUPPORT

External funding: All Ireland Institute of Hospice and Palliative Care / Irish Cancer Society Research Fellowship (2014-2016).

DECLARATIONS OF INTEREST

The PI (Dr Kathleen McLoughlin) is the holder of the All Ireland Institute of Hospice and Palliative Care / ICS Research Fellowship.

REQUEST SUPPORT

We are confident that the research team has the necessary mix of skills and experience required to complete this review.

AUTHOR(S) REVIEW TEAM

Include the complete name and address of reviewer(s) (can be changed later). This is the review team -- list the full names, affiliation and contact details of author’s to be cited on the final publication. Lead reviewer: Name: Dr Kathleen McLoughlin Title: AIIHPC / ICS Research Fellow and Compassionate Communities Project Co-ordinator


Affiliation: Maynooth University / Milford Care Centre Address: Department of Psychology, Maynooth University City, State, Province or County: Maynooth, Co. Kildare. Postal Code: IE Country: Ireland Phone: Mobile: 0894667915 Email: [email protected] Co-author(s): (There should be at least one co-author) Name: Dr Mairead Furlong Title: Post-doctoral research fellow Maynooth University Department of Psychology, Co-founder and Director of PRISM (recently set up in Maynooth University to develop systematic review capacity in Ireland), Associate lecturer with the UK Cochrane Centre, Co-Chair Campbell Social Welfare Group. Affiliation: Maynooth University / Milford Care Centre Address: Department of Psychology, Maynooth University City, State, Province or County: Maynooth, Co. Kildare. Postal Code: IE Country: Ireland Phone: 01 4747138 Mobile: 087 936 8199 Email: [email protected] Name: Joanne Callinan Title: Library and Information Specialist Affiliation: Milford Care Centre Address: Plassey Park Road City, State, Province or County: Castletroy, Limerick Postal Code: IE Country: Ireland Phone: 061 485 800 Mobile: Email: [email protected] Name: Dr. Emilio Herrera Molina Title: Director Affiliation: New Health Foundation Address: Avenida Menendez Pelayo 20, 4th floor, 41004 City, State, Province or County: Seville Postal Code: Country: Spain Phone: 0034699441001 Mobile: 0034954414785 Email: [email protected] Name: Dr Sinead McGilloway Title: Senior Lecturer andDirector of the Mental Health and Social Research Unit (MHSRU). Co-founder and Co-Director of PRISM (Promoting Research Innovation in Systematic Reviews and Meta-analysis) – a research and training hub recently set up in Maynooth University to develop systematic review capacity in Ireland. Affiliation: Maynooth University / Milford Care Centre Address: Department of Psychology, Maynooth University City, State, Province or County: Maynooth, Co. Kildare. Postal Code: IE Country: Ireland Phone: 01 708 4765 Mobile: 086 819 2809

mailto:[email protected]



Email: [email protected] Name: Jim Rhatigan Title: Head of Therapies and Social Care Affiliation: Milford Care Centre Address: Plassey Park Road City, State, Province or County: Castletroy, Limerick Postal Code: IE Country: Ireland Phone: 061 485 869 Mobile: Email: [email protected]

ROLES AND RESPONSIBLIITIES

Please give brief description of content and methodological expertise within the review team. The recommended optimal review team composition includes at least one person on the review team who has content expertise, at least one person who has methodological expertise and at least one person who has statistical expertise. It is also recommended to have one person with information retrieval expertise. Who is responsible for the below areas? Please list their names: • Content: Dr Kathleen McLoughlin, Jim Rhatigan, Dr. Emilio Herrera Molina • Systematic review methods: Dr Mairead Furlong, Joanne Callinan, Dr Sinead McGilloway • Statistical analysis: Dr Kathleen McLoughlin, Dr Mairead Furlong, Dr Sinead McGilloway, Dr. Emilio Herrera Molina • Information retrieval: Joanne Callinan and Dr Kathleen McLoughlin.

PRELIMINARY TIMEFRAME

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