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

Abstract

BackgroundFor most people, home is the preferred place of care and death. Despite the development of specialist palliative care and primary care models of community based service delivery, people who are dying, and their families/carers, can experience isolation, feel excluded from social circles and distanced from their communities. Loneliness and social isolation can have a detrimental impact on both health and quality of life. Internationally, models of social and practical support at the end of life are gaining momentum as a result of the Compassionate Communities movement. These models have not yet been subjected to rigorous evaluation. The aims of the study described in this protocol are: (1) to evaluate the feasibility, acceptability and potential effectiveness of The Good Neighbour Partnership (GNP), a new volunteer-led model of social and practical care/support for community dwelling adults in Ireland who are living with advanced life-limiting illness; and (2) to pilot the method for a Phase III Randomised Controlled Trial (RCT).DesignThe INSPIRE study will be conducted within the Medical Research Council (MRC) Framework for the Evaluation of Complex Interventions (Phases 0–2) and includes an exploratory two-arm delayed intervention randomised controlled trial. Eighty patients and/or their carers will be randomly allocated to one of two groups: (I) Intervention: GNP in addition to standard care or (II) Control: Standard Care. Recipients of the GNP will be asked for their views on participating in both the study and the intervention. Quantitative and qualitative data will be gathered from both groups over eight weeks through face-to-face interviews which will be conducted before, during and after the intervention. The primary outcome is the effect of the intervention on social and practical need. Secondary outcomes are quality of life, loneliness, social support, social capital, unscheduled health service utilisation, caregiver burden, adverse impacts, and satisfaction with intervention. Volunteers engaged in the GNP will also be assessed in terms of their death anxiety, death self efficacy, self-reported knowledge and confidence with eleven skills considered necessary to be effective GNP volunteers.DiscussionThe INSPIRE study addresses an important knowledge gap, providing evidence on the efficacy, utility and acceptability of a unique model of social and practical support for people living at home, with advanced life-limiting illness. The findings will be important in informing the development (and evaluation) of similar service models and policy elsewhere both nationally and internationally.Trial registrationISRCTN18400594 18th February 2015.

Effectiveness of palliative care interventions offering social support to people with life-limiting illness-A systematic review

“…We focussed explicitly on interventions taking place outside of the home, informed by a qualitative metasynthesis concluding that a change in scenery and getting out of the house were necessary for alleviation of both physical and psychosocial isolation (Bradley et al., ). This meant that well‐established examples of community‐based support programmes, for example the Good Neighbourhood Partnership in Ireland (McLoughlin, Rhatigan, et al., ) and the Neighbourhood Network in India (Sallnow, Kumar, & Numpeli, ), 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., ), 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., ).…”

How effective are volunteers at supporting people in their last year of life? A pragmatic randomised wait-list trial in palliative care (ELSA)

“…No other trial of the outcomes of volunteer-provided support at the end of life has been conducted, although other trials are underway of volunteers building end-of-life networks [39] or supporting people with advanced dementia [40]. Previous studies of volunteer-provided services in the last year of life have been descriptive, addressing issues such as patient and volunteer experience, acceptability, facilitators and barriers [10, 11, 16, 17, 19, 41–43].…”

“…Important service characteristics that should be studied include the role of the volunteer as a direct supporter or in mobilising networks of support [39, 58], in the frequency and amount of support provided, and the type of person supported. Further work to determine the outcome measures best used to assess volunteer interventions is also recommended.…”

‘Being with’ or ‘doing for’? How the role of an end-of-life volunteer befriender can impact patient wellbeing: interviews from a multiple qualitative case study (ELSA)

“…Our own and other volunteering trials are addressing understanding impact in terms of measurable patient outcomes [27–30], but it is also important to explore patient perspectives on impact and the mechanisms by which this may be achieved.…”