Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.
ADVANCED SEARCH
Log in
Top
BMC Palliative Care
Published in: BMC Palliative Care 1/2016

Open Access 01-12-2016 | Study protocol

Protocol for the End-of-Life Social Action Study (ELSA): a randomised wait-list controlled trial and embedded qualitative case study evaluation assessing the causal impact of social action befriending services on end of life experience

Authors: Catherine Walshe, Guillermo Perez Algorta, Steven Dodd, Matthew Hill, Nick Ockenden, Sheila Payne, Nancy Preston

Published in: BMC Palliative Care | Issue 1/2016

Login to get access

Abstract

Background

Compassionate support at the end of life should not be the responsibility of health and social care professionals alone and requires a response from the wider community. Volunteers, as community members, are a critical part of many end-of-life care services. The impact of their services on important outcomes such as quality of life is currently poorly understood. The purpose of this study is to evaluate a series of social action initiatives which use volunteers to deliver befriending services to people anticipated to be in their last year of life. The aim is to determine if receiving care from a social action volunteer befriending service plus usual care significantly improves quality of life in the last year of life.

Methods/design

The research questions will be addressed through a wait-list randomised controlled trial (WLRCT) and qualitative case study evaluation across 12 sites in England. Participants will be randomly allocated to either receive the social action volunteer befriending service straight away or receive the intervention after a four week wait (wait-list arm). The impact of the intervention on end-of-life experience (quality of life as primary outcome, loneliness, social support) will be measured. Repeated assessments will be carried out at baseline and weeks 4 and 8 for the intervention arm and weeks 4, 8 and 12 for the wait-list arm. For selected sites case study evaluation will include interviews, observation and documentary analysis to understand the mechanisms underpinning any found impact.

Discussion

This study will address the need to both provide services which use social action models to support end-of-life care in community settings, and to robustly evaluate these models to determine if they influence the experience of end-of-life care. Such services could work to reduce isolation, help meet emotional needs and maintain a sense of connectedness to the community. ISRCTN 12929812 Registered 20.5.15
Literature
1.
Higginson IJ, Sen-Gupta GJ. Place of care in advanced cancer: a qualitative systematic literature review of patient preferences. J Palliat Med. 2000;3(3):287–300.CrossRefPubMed
2.
Higginson IJ, Sarmento VP, Calanzani N, Benalia H, Gomes B. Dying at home is it better: a narrative appraisal of the state of the science. Palliat Med. 2013;27(10):918–24.CrossRefPubMed
3.
Gomes B, Calanzani N, Koffman J, Higginson IJ. Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Med. 2015;13:235.CrossRefPubMedPubMedCentral
4.
Addington-Hall JM, Karlsen S. A national survey of health professionals and volunteers working in voluntary hospice services in the UK. I. Attitudes to current issues affecting hospices and palliative care. Palliat Med. 2005;19:40–8.CrossRefPubMed
5.
Burbeck R, Candy B, Low J, Rees R. Understanding the role of the volunteer in specialist palliative care: a systematic review and thematic synthesis of qualitative studies. BMC Palliat Care. 2014; 13(3). doi:10.​1186/​1472-1684X-1113-1183.
6.
Burbeck R, Low J, Sampson EL, Bravery R, Hill M, Morris S, Ockenden N, Payne S, Candy B. Volunteers in specialist palliative care: a survey of adult services in the United Kingdom. J Palliat Med. 2014;17(5):568–74.CrossRefPubMedPubMedCentral
7.
Chauhan C, Eppard W. Systematic education and utilization of volunteer patient advocates for cancer clinical trial information dissemination at NCCTG community sites. J Clin Oncol. 2004;22(14S):1031.
8.
Claxton-Oldfield S. Hospice palliative care volunteers: the benefits for patients, family caregivers, and the volunteers. Palliat Support Care. 2014;FirstView:1–5.
9.
Claxton-Oldfield S, Gosselin N, Schmidt-Chamberlain K, Claxton-Oldfield J. A survey of family members’ satisfaction with the services provided by hospice palliative care volunteers. Am J Hosp Palliat Med. 2010;27(3):191–6.CrossRef
10.
Morris S, Wilmot A, Hill M, Ockenden N, Payne S. A narrative literature review of the contribution of volunteers in end-of-life care services. Palliat Med. 2013;27(5):428–36.CrossRefPubMed
11.
Woitha K, Hasselaar J, Van Beek K, Radbruch L, Jaspers B, Engels Y, Vissers K. Volunteers in palliative care a comparison of seven European countries: a descriptive study. Pain Pract. 2015;15(6):572–579.CrossRefPubMed
12.
Candy B, France R, Low J, Sampson L. Does involving volunteers in the provision of palliative care make a difference to patient and family wellbeing? A systematic review of quantitative and qualitative evidence. Int J Nurs Stud. 2015;52(3):756–68. doi:10.​1016/​j.​ijnurstu.​2014.​08.​007.
13.
Farquhar M, Prevost AT, McCrone P, Higginson I, Gray J, Brafman-Kennedy B, Booth S. Study protocol: phase III single-blinded fast-track pragmatic randomised controlled trial of a complex intervention for breathlessness in advanced disease. Trials. 2011;12(1):130.CrossRefPubMedPubMedCentral
14.
Higginson IJ, Booth S. The randomized fast-track trial in palliative care: role, utility and ethics in the evaluation of interventions in palliative care? Palliat Med. 2011;25(8):741–7.CrossRefPubMed
15.
Farquhar M, Higginson IJ, Fagan P, Booth S. The feasibility of a single-blinded fast-track pragmatic randomised controlled trial of a complex intervention for breathlessness in advanced disease. BMC Palliat Care. 2009;8:9.CrossRefPubMedPubMedCentral
16.
Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, Todd C, Booth S. Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial. BMC Med. 2014;12:194.CrossRefPubMedPubMedCentral
17.
18.
Farquhar M, Higginson IJ, Booth S. Fast-track trials in palliative care: an alternative randomized controlled trial design. J Palliat Med. 2009;12(3):213.CrossRefPubMed
19.
Preston NJ, Fayers P, Walters SJ, Pilling M, Grande GE, Short V, Owen-Jones E, Evans CJ, Benalia H, Higginson IJ, et al. Recommendations for managing missing data, attrition and response shift in palliative and end-of-life care research: part of the MORECare research method guidance on statistical issues. Palliat Med. 2013;27(10):899–907.CrossRefPubMed
20.
NICE. Improving supportive and palliative care for adults with cancer - the manual. London: National Institute for Clinical Excellence; 2004.
21.
Skevington SM, Lotfy M, O’Connell KA. The World Health Organization’s WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL Group. Qual Life Res. 2004;13:299–310.CrossRefPubMed
22.
De Jong GJ, van Tilburg T. The De Jong Gierveld short scales for emotional and social loneliness: tested on data from 7 countries in the UN generations and gender surveys. Eur J Ageing. 2010;7(2):121–30.CrossRef
23.
Moser AF, Stuck AE, Silliman RA, Ganz PA, Clough-Gorr KM. The eight-item modified Medical Outcomes Study Social Support Survey: psychometric evaluation showed excellent performance. J Clin Epidemiol. 2012;65(10):1107–16. doi:10.​1016/​j.​jclinepi.​2012.​04.​007.
24.
Dumont S, Fillion L, Gagnon P, Bernier N. A new tool to assess family caregivers’ burden during end of life care. J Palliat Care. 2008;24(3):151–61.PubMed
25.
Ritchie J, Lewis J. Qualitative research practice. A guide for social science students and researchers. London: Sage Publications; 2003.
26.
Walshe C, Chew-Graham C, Todd C, Caress A. What influences referrals within community palliative care services? A qualitative case study. Soc Sci Med. 2008;67(1):137–46.CrossRefPubMed
27.
Gysels M, Shipman C, Higginson I. “I will do it if it will help others:” motivations among patients taking part in qualitative studies in palliative care. J Pain Symptom Manag. 2008;35(4):347–55.CrossRef
28.
Terry W, Olson LG, Ravenscroft P, Wilss L, Boulton-Lewis G. Hospice patients views on research in palliative care. Intern Med J. 2006;36(7):406–13.CrossRefPubMed
29.
Emanuel EJ, Fairclough DL, Wolfe P, Emanuel L. Talking with terminally ill patients and their caregivers about death, dying and bereavement: is it stressful? Is it helpful? Arch Intern Med. 2004;164(18):1999–2004.CrossRefPubMed
30.
The AM, Hak T, Koeter G, van der Wal G. Collusion in doctor-patient communication about imminent death: an ethnographic study. West J Med. 2001;174(4):247–53.CrossRefPubMedPubMedCentral
Metadata
Title
Protocol for the End-of-Life Social Action Study (ELSA): a randomised wait-list controlled trial and embedded qualitative case study evaluation assessing the causal impact of social action befriending services on end of life experience
Authors
Catherine Walshe
Guillermo Perez Algorta
Steven Dodd
Matthew Hill
Nick Ockenden
Sheila Payne
Nancy Preston
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2016
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-016-0134-3

Other articles of this Issue 1/2016

BMC Palliative Care 1/2016 Go to the issue

Research article

A co-design process developing heuristics for practitioners providing end of life care for people with dementia

Research article

Cultural perspectives of older nursing home residents regarding signing their own DNR directives in Eastern Taiwan: a qualitative pilot study

Research article

Implementing the care programme for the last days of life in an acute geriatric hospital ward: a phase 2 mixed method study

Research article

Utilization of palliative radiotherapy for bone metastases near end of life in a population-based cohort

Research article

The ‘problematisation’ of palliative care in hospital: an exploratory review of international palliative care policy in five countries

Research article

Development of a complex intervention to support the initiation of advance care planning by general practitioners in patients at risk of deteriorating or dying: a phase 0-1 study