ResearchPDF Available

Community-led practical and/or social support interventions for adults living at home with palliative and end of life care needs: A Campbell title for review



Community-led practical and/or social support interventions for adults living at home with palliative and end of life care needs: A campbell title for review
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
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:
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.
Community-led practical and/or social support interventions for adults living at home with
palliative and end of life care needs.
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
1 The Campbell Collaboration |
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 illness 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
2 The Campbell Collaboration |
reported (Barry and Patel, 2013). For example, 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,
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-
3 The Campbell Collaboration |
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 any 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, chronic
obstructive pulmonary disorder (COPD), heart failure, acquired immune deficiency
syndrome (AIDS), dementia, frailty and motor neurone disease (MND Cancer, Dementia ,
Frailty, Neurological disease, Heart / vascular disease, Respiratory disease, kidney disease,
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,
4 The Campbell Collaboration |
facilitation of coping skills, life story work or befriending.
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, 20151).
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).
Impact on health service use e.g. admission to inpatient facilities; primary care
service visits
Secondary outcomes
Instrumental activities of daily living (e.g. as measured by the Lawton IADL Scale
(Graf, 2008)).
Physical health outcomes (e.g. pain, fatigue, tiredness and sleeping difficulties).
The perceived impact on the care received (e.g. duration of and satisfaction with
care, preferred place of care, place of death).
Cost effectiveness.
Adverse outcomes (e.g. distress from participating in the intervention; attrition).
Loneliness (e.g. as measured by UCLA Loneliness Scale (Russell et al., 1978)
5 The Campbell Collaboration |
In addition the following outcomes will be assessed for carers only:
Carer Burden (e.g. as measured by The Zarit Burden Interview (Bedard et al.,
Impact on caregiver/family bereavement.
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 and health service use. These participants will be
compared to a control group receiving standard care, other treatment, waiting list or no
What types of studies designs are to be included and excluded?
Eligible study designs will include randomised and cluster randomised controlled trials.
Quasi-experimental studies (assigned non-randomly by alternation, date, clinician judgment,
etc), involving at least one treatment and one control group, which provide evidence of
baseline equivalence of outcomes outlined above will be included..
We will exclude single-group pretest-posttest studies and treatment versus treatment studies
without a control group of standard care, no treatment, waiting list or placebo. Qualitative
studies will also be excluded.
Your method of synthesis:
Meta-analyses will be conducted where there are sufficient studies and if sufficient clinical
homogeneity across studies is demonstrated. Studies that have been coded with a very high
risk of bias (5 on the risk of bias scale) will not be included in the data synthesis. 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. Advice will be sought as necessary from Higginson et al and the EAPC regarding
which outcome measures are feasible to combine and how best to account for non-
independence among outcomes as recommended by Davis et al (2014).
In the event that there is significant heterogeneity the findings will be analysed and presented
narratively using tables where appropriate.
External funding:
6 The Campbell Collaboration |
All Ireland Institute of Hospice and Palliative Care / Irish Cancer Society Research
Fellowship (2014-2016).
The PI (Dr Kathleen McLoughlin) is the holder of the AIIHPC / ICS Research Fellowship.
We are confident that the research team has the necessary mix of skills and experience
required to complete this review.
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
Mobile: 0894667915
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
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
7 The Campbell Collaboration |
Phone: 061 485 800
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
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
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
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
Statistical analysis: Dr Kathleen McLoughlin, Dr Mairead Furlong, Dr Sinead
McGilloway, Dr. Emilio Herrera Molina
8 The Campbell Collaboration |
Information retrieval: Joanne Callinan and Dr Kathleen McLoughlin.
Approximate date for submission of Draft Protocol (please note this should be no longer than
six months after title approval. If the protocol is not submitted by then, the review area may
be opened up for other reviewers):
It is anticipated that following approval of the title, the protocol will be submitted within 10
Aaronson N,Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez N, et al. (1993). The
European Organization for Research and Treatment of Cancer QLQ-C30: a quality of-life
instrument for use in international clinical trials in oncology. JNCI Journal of the National
Cancer Institute, 85(5),365.
AIIHPC (2015). Press release (10th June 2015). Available online
Aoun, S.M., O'Connor, M., Breen, L.J., Deas, K. and Skett, K. (2013). Testing models of
care for terminally ill people who live alone at home: Is a randomised controlled trial the
best approach? Health and Social Care in the Community, 21(2), 181-190.
Barry, V. and Patel, M. (2013). An Overview of Compassionate Communities in England.
London:Murray Hall Community Trust and National Council for Palliative Care.
Bausewein C., Daveson B., Benalia H., Simon, S.T. and Higginson, I.J. Outcome
Measurement in Palliative Care: The Essentials (2013). Available online
Bédard, M., Molloy, D.W., Squire, L,. Dubois, S., Lever, J.A. and O'Donnell, M. (2001).
The Zarit Burden interview a new short version and screening version. The Gerontologist,
41(5), 652-657.
Brown, L., and Walter, T. (2013). Towards a social model of end-of-life care. British
Journal of Social Work, bct087.
Bruera, E., Kuehn, N., Miller, M., Selmser, P., Macmillan, K. (1991). The Edmonton
Symptom Assessment System (ESAS): a simple method for the assessment of palliative care
patients. Journal of Palliative Care. 7(2), 6-9.
Candy, B., Jones, L., Drake, R., Leurent, B., & King, M. (2011). Interventions for supporting
informal caregivers of patients in the terminal phase of a disease. The Cochrane Library.
Candy, B., Jones, L., Varagunam, M., Speck, P., Tookman, A., & King, M. (2012). Spiritual
and religious interventions for wellbeing of adults in the terminal phase of disease. The
Cochrane Library.
Campbell, M., Fitzpatrick, R., Haines, A., Kinmonth, A. L., Sandercock, P., Spiegelhalter,
D., & Tyrer, P. (2000). Framework for design and evaluation of complex interventions to
improve health. BMJ, 321(7262), 694-696.
Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2008).
9 The Campbell Collaboration |
Developing and evaluating complex interventions: the new Medical Research Council
guidance. Bmj, 337.
Cronin, P. (2013). Compassionate Communities in Shropshire. 3rd International Public
Health and Palliative Care Conference. Limerick, Ireland
CSO, (2012). Vital Statistics 4 quarter and yearly summary.
Davis, J., Mengersen, K., Bennett, S., & Mazerolle, L. (2014). Viewing systematic reviews
and meta-analysis in social research through different lenses. SpringerPlus, 3(1), 511.
Department of Health and Children. (2014). Report on End of Life and Palliative Care in
Ireland. In. vol. 1. Dublin, Ireland: Houses of the Oireachtas.
De Roo, M. L., Miccinesi, G., Onwuteaka-Philipsen, B. D., Van Den Noortgate, N., Van den
Block, L., Bonacchi, A., ... & Francke, A. L. (2014). Actual and preferred place of death of
home-dwelling patients in four European countries: making sense of quality indicators. PloS
one, 9(4), e93762.
Zigmond, A.S. and Snaith, R.P. (1983). The Hospital Anxiety and Depression Scale. Acta
Psychiatr. Scand. 67( 6), 361-70.
Submit the Title proposal directly to the relevant
Coordinating Group’s Managing editor (see our website for
name/address) or to <>.
10 The Campbell Collaboration |
... This meant that well-established examples of community-based support programmes, for example the Good Neighbourhood Partnership in Ireland and the Neighbourhood Network in India (Sallnow, Kumar, & Numpeli, 2013), were excluded from the review. However, models of home-based palliative care (which may or may not include facilitation of social support) are better represented than other settings in the research literature (Brereton et al., 2017), and we are aware of an ongoing systematic review of community-led support interventions for adults living at home with palliative care needs (Mcloughlin, Furlong, et al., 2015). An additional consideration is the increasing availability of different formats, for example social networking interventions (Owen, Bantum, Pagano, & Stanton, 2017). ...
Full-text available
Individuals managing the challenges of life‐limiting illness require adequate social support to maintain quality of life. Qualitative research reports that patients value highly the social support obtained in palliative care interventions such as day care and group therapies. This systematic review aims to summarise existing quantitative evidence on palliative care interventions that facilitate social support. Research literature was systematically searched using electronic databases and key journals. Searches returned a total of 6,247 unique titles of which sixteen were eligible for inclusion. Interventions include group therapies, group practical interventions and palliative day care. Outcome measures and study designs were heterogeneous. Only one study used a validated outcome measure of social support. Benefits were influenced by participant characteristics such as baseline distress. Partial economic evaluation was attempted by two studies. Methodological challenges include attrition and use of outcome measures that were insensitive to change. Statistically significant results were reported in psychological and physical domains. Evidence is limited due to methodological issues and a scarcity of quantitative research, particularly regarding long‐term benefits and cost‐effectiveness. Interventions may be more beneficial to some groups than others.
ResearchGate has not been able to resolve any references for this publication.