INSPIRE (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness

BMC Palliative Care

Volumn 14, Issue 1, 2015, Pages

  McLoughlin, Kathleen ^a,b   Rhatigan, Jim ^b   McGilloway, Sinead ^a   Kellehear, Allan ^c   Lucey, Michael ^b   Twomey, Feargal ^b   Conroy, Marian ^b   Herrera Molina, Emillio ^d   Kumar, Suresh ^e   Furlong, Mairead ^a   Callinan, Joanne ^b   Watson, Max ^f   Currow, David ^g   Bailey, Christopher ^h  

^a NATIONAL UNIVERSITY OF IRELAND   (Ireland)

^b Milford Care Centre   (Ireland)

^c UNIVERSITY OF BRADFORD   (United Kingdom)

^d New Health Foundation   (Spain)

^e Institute of Palliative Medicine   (India)

^f NORTHERN IRELAND HOSPICE   (United Kingdom)

^g FLINDERS UNIVERSITY   (Australia)

^h UNIVERSITY OF SOUTHAMPTON   (United Kingdom)

Author keywords

Adults; Carers; Community; Home; INSPIRE; Palliative care needs; Practical support; Quality of life; Randomised Controlled Trial; Social support; Volunteers

Indexed keywords

ADULT; ANXIETY; CAREGIVER BURDEN; CLINICAL TRIAL; CONTROLLED CLINICAL TRIAL; CONTROLLED STUDY; DEATH; EXPLORATORY RESEARCH; FEASIBILITY STUDY; HEALTH CARE QUALITY; HEALTH CARE UTILIZATION; HUMAN; INTERVIEW; LONELINESS; MAJOR CLINICAL STUDY; MEDICAL RESEARCH; MODEL; QUALITY OF LIFE; RANDOMIZED CONTROLLED TRIAL; RECIPIENT; SATISFACTION; SELF CONCEPT; SKILL; SOCIAL CAPITAL; SOCIAL SUPPORT; VOLUNTEER; CAREGIVER; COMMUNITY CARE; COST BENEFIT ANALYSIS; DEMOGRAPHY; FEMALE; IRELAND; MALE; METHODOLOGY; PALLIATIVE THERAPY; PILOT STUDY; PROCEDURES; QUESTIONNAIRE; UTILIZATION;

ADULT; CAREGIVERS; COMMUNITY NETWORKS; COST-BENEFIT ANALYSIS; FEMALE; HUMANS; IRELAND; MALE; PALLIATIVE CARE; PILOT PROJECTS; QUALITY OF LIFE; RESEARCH DESIGN; RESIDENCE CHARACTERISTICS; SOCIAL SUPPORT; SURVEYS AND QUESTIONNAIRES;

EID: 84948427045     PISSN: None     EISSN: 1472684X     Source Type: Journal    
DOI: 10.1186/s12904-015-0060-9     Document Type: Review

References (36)

1. De Roo ML, Miccinesi G, Onwuteaka-Philipsen BD, Van Den Noortgate N, Van den Block L, Bonacchi A, et al. Actual and preferred place of death of home-dwelling patients in four European countries: making sense of quality indicators. PLoS One. 2014;9(4), e93762.
2. Aged I-DCotCot. The Care of the Aged. Dublin: Stationery Office; 1968.
3. Matters D. NatCen survey. 2009.
4. Windle K, Francis J, Coomber C., Preventing loneliness and social isolation: interventions and outcomes, London: Soc Care Inst Excell 2011 1-16.
5. Sand L, Strang P. Existential loneliness in a palliative home care setting. J Palliat Med. 2006;9(6):1376-87.
6. Support/ICM MC. Online survey of 155 UK health professionals treating people living with cancer. Field work conducted September 2012.
7. Brown L, Walter T. Towards a social model of end-of-life care. Br J Soc Work. 2014;44:2375-90.
8. Kellehear A. Health promoting palliative care. Melbourne: Oxford University Press; 1999.
9. Kellehear A. Compassionate Cities: Public Health and End-of-Life Care. London: Routledge; 2005.
10. Kellehear A. Compassionate cities charter. 2014.
11. Barry V, Patel M. An overview of compassionate communities in England. London: Murray Hall Community Trust and National Council for Palliative Care; 2013.
12. Cronin P. Compassionate Communities in Shropshire, West Midlands, England in Wegleitner K, Heimerl K, & Kellehear A. (Eds.). 2015. Compassionate communities: case studies from Britain and Europe. Routledge; 2015.
13. Kumar SK. Kerala, India: a regional community-based palliative care model. J Pain Symptom Manag. 2007;33(5):623-7.
14. Sallnow L, Kumar S, Kellehear A. International perspectives on Public health and palliative care. Taylor & Francis; Abingdon: Routledge; 2013.
15. Sallnow L, Kumar S, Numpeli M. Home-based palliative care in Kerala, India: the Neighbourhood Network in Palliative Care. Prog Palliat Care. 2010;18(1):14-7.
16. Molina EH, Nuño-Solinis R, Idioaga GE, Flores SL, Hasson N. Impact of a home-based social welfare program on care for palliative patients in the Basque Country (SAIATU Program). BMC Palliat Care. 2013;12(1):3.
17. Solinís RN, Hasson N, Idoiaga GE, Molina EH, Flores SL, Rodriguez C. Impact of a home-based social program in end of life care in the Basque Country: SAIATU Program. International Journal of Integrated Care. 2014(6).
18. Campbell M, Fitzpatrick R, Haines A, Kinmonth AL, Sandercock P, Spiegelhalter D, et al. Framework for design and evaluation of complex interventions to improve health. BMJ: Br Med J. 2000;321(7262):694.
19. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth, I, Petticrew M. Developing and evaluating complex interventions: the new Medical Research Council guidance. International journal of nursing studies. 2013;50(5):587-92.
20. Hall S, Edmonds P, Harding R, Chochinov H, Higginson IJ. Assessing the feasibility, acceptability and potential effectiveness of Dignity Therapy for people with advanced cancer referred to a hospital-based palliative care team: Study protocol. BMC Palliat Care. 2009;8(1):5.
21. CSO. Population by area (formerly volume one) based on Census 2011. 2012.
22. Schulz KF, Altman DG, Moher D. CONSORT 2010 statement: updated guidelines for reporting parallel group randomized trials. Ann Intern Med. 2010;152(11):726-32.
23. Altman DG, Bland JM. Statistics notes: treatment allocation by minimisation. BMJ: Br Med J. 2005;330(7495):843.
24. Scott NW, McPherson GC, Ramsay CR, Campbell MK. The method of minimization for allocation to clinical trials: a review. Control Clin Trials. 2002;23(6):662-74.
25. Higginson I, Vivat B, Silber E, Saleem T, Burman R, Hart S, et al. Study protocol: delayed intervention randomised controlled trial within the Medical Research Council (MRC) Framework to assess the effectiveness of a new palliative care service. BMC Palliat Care. 2006;5(1):7.
26. Highet G, Crawford D, Murray SA, Boyd K. Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): a mixed-methods study. BMJ Support Palliat Care. 2013;4(3):285-290.
27. Chiu L, Chiu N, Chow E, Cella D, Beaumont JL, Lam H, et al. Comparison of three shortened questionnaires for assessment of quality of life in advanced cancer. J Palliat Med. 2014;17(8):918-23.
28. Hughes ME, Waite LJ, Hawkley LC, Cacioppo JT. A short scale for measuring loneliness in large surveys results from two population-based studies. Res Aging. 2004;26(6):655-72.
29. Moser A, 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.
30. Lewis JM, DiGiacomo M, Luckett T, Davidson PM, Currow DC. A social capital framework for palliative care: supporting health and well-being for people with life-limiting illness and their carers through social relations and networks. J Pain Symptom Manag. 2013;45(1):92-103.
31. Koenig HG, Westlund RE, George LK, Hughes DC, Blazer DG, Hybels C. Abbreviating the Social Support Index for use in chronically ill elderly individuals. Psychosomatics. 1993;34(1):61-9.
32. Epstein-Lubow G, Gaudiano BA, Hinckley M, Salloway S, Miller IW. Evidence for the validity of the american medical association's caregiver self-assessment questionnaire as a screening measure for depression. J Am Geriatr Soc. 2010;58(2):387-8.
33. Greene A, Aranda S, Tieman JJ, Fazekas B, Currow DC. Can assessing caregiver needs and activating community networks improve caregiver-defined outcomes? A single-blind, quasi-experimental pilot study: Community facilitator pilot. Palliat Med. 2012;26(7):917-23.
34. Higginson IJ, Evans CJ, Grande G, Preston N, Morgan M, McCrone P, et al. Evaluating complex interventions in End of Life Care: the MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews. BMC Med. 2013;11(1):111.
35. Robbins RA. Death competency: a study of hospice volunteers. Death Stud. 1992;16(6):557-69.
36. Lester D. The Collett-Lester fear of death scale: the original version and a revision. Death Stud. 1990;14(5):451-68.