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.
: This one-hour symposium considers Milford Care Centre's Compassionate Communities Good Neighbour Partnership and it's evaluation by an international team, led by Maynooth University and funded by the All Ireland Institute of Hospice and Palliative Care, The Irish Cancer Society, The Irish Hospice Foundation and Milford Care Centre. The symposium will be divided into three sections: 1. The Good Neighbour Partnership: Why do we need it? In this section we will describe the findings from a recent scoping study to determine the social and practical needs of community dwelling adults (and their families) living with advanced life limiting illness at home. We will consider the rationale for specialist palliative care services, working with community groups, to lead the development of a volunteer-based social model of care to address unmet need. 2. The Good Neighbour Partnership: How do we recruit and train volunteers? We will share our process and experience of recruiting and training 15 Compassionate Communities Volunteers to assess unmet social and practical need, and to mobile the person's circle of community to meet those needs. An understanding of the motivating factors of volunteers will be shared. 3. The Good Neighbour Partnership: How on earth are we going to evaluate it? Here we describe the INSPIRE study - Investigating Social and Practical Supports at the End of life. An exploratory delayed intervention randomised controlled trial (framed by the MRC Framework for Complex Interventions) to assess the feasibility, acceptability and potential effectiveness of the Good Neighbour Partnership.
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