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.

BACKGROUND: For 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). DESIGN: The 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. DISCUSSION: The 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 REGISTRATION: ISRCTN18400594 18(th) February 2015.

OA37†Compassionate classrooms: supporting teachers to support children living with grief and loss.

BACKGROUND: Milford Care Centre's social work service is often contacted by teachers following a death within the school community. The team recognised the need to engage in a more proactive, health-promoting manner to help teachers normalise the experience of grief and loss, empowering them to provide support to pupils following bereavement. AIM: To develop and evaluate a brief intervention for teachers, as part of Milford Care Centre's Compassionate Communities programme, to support children experiencing bereavement. METHODS: A five-hour experiential workshop was developed and piloted with (1) a group of teachers and (2) staff working with early school completion programmes across the City. The teacher workshop was evaluated using a pre/post design measuring death anxiety and self-reported confidence. A qualitative evaluation, of both workshops will be presented from both the facilitator and participant perspective. RESULTS: The pilot highlighted that the intervention is acceptable and demonstrated both a significant reduction in death anxiety and improvement in self-reported confidence for teachers who participated. CONCLUSIONS: The Compassionate Classrooms: Working with Grief and Loss intervention can reduce death anxiety and improve teachers' confidence. The intervention will be shared with the audience for local adaptation.

OA38†From service delivery to community enablement: a public health approach to palliative care.

: Milford Care Centre is the only hospice in Ireland to make a strategic decision to embrace a public health approach to palliative care, through the development, implementation and evaluation of the Compassionate Communities Project. This presentation seeks to examine why Milford made the decision to move toward a community enablement model, describes the development and implementation of the Compassionate Communities Project to date, presents key findings from recent evaluations and highlights our plans for the future. The presentation uses a reflective, story telling approach to meet it's aims, coupled with data and statistics gathered from the evaluations, and includes a new short film 'Tell Me' developed by recent Computer Science graduates for the Project to use to engage with communities during Café Conversations. The presentation will highlight the relevance of Health Promoting Palliative Care theory to the development of a three-tier model of programme activity, examine the challenges in implementing such an approach and will discuss the impact of upstream intervention to downstream service provision using case studies.

WA40†The good neighbour partnership: why do we need it? who is going to do it? how on earth are we going to evaluate it?

: 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.

OA39†Digging a hole planting a seed water it and watch it start to grow, grow, grow.

BACKGROUND: Milford Care Centre's Compassionate Communities Project uses a seed grant scheme to engage with communities around illness, dying, death and bereavement. The scheme, now in it's 3(rd) cycle strives to inspire and support the work of local groups, organisations and individuals who wish to mark in some tangible way their response to the universal realities of death, dying, loss and care as lived and experienced by those living within their communities. A key requirement for the receipt of a grant is that the level of funding must be matched either in cash or in kind. AIM: This presentation will report on the projects supported, describing the short and medium term impact they have had on the local community. METHOD: A short film will showcase the projects. Qualitative interviews were conducted with all grant recipients to determine the impact of the seed grant at a community level. RESULTS: Seed grants were used in a variety of ways, for example: Supporting a community group to develop a reflection space Supporting a youth project to explore what death, dying, loss and care means to service users through the creative arts. Supporting a library to develop a bereavement information 'resource'. Supporting local groups to run a community event aimed at increasing awareness and knowledge about 'healthy' ways of coping with loss and grief. Supporting those seeking practical ways of providing support to other living with illness and loss. CONCLUSIONS: The seed grant scheme offers a low cost, high impact approach to working with communities.

OA41†How can we support people living with death, dying, loss and care using animation? social workers reflect on the compassionate communities 'let's talk' films.

BACKGROUND: Milford Care Centre's Compassionate Communities Project has developed a series of animated films - The 'Let's Talk' Series. These films are used by the project to encourage people to have think about having difficult conversations about illness and death. The films are available on the project website, via You Tube and are shown during Café Conversations as part of the Compassionate Communities Project. More recently, members of the Specialist Palliative Care Social Work department have been using the films during their direct work with patients and their families. AIM: This presentation aims to introduce participants to the Let's Talk film series and describe the learning from social workers who have used the films at home, and in the inpatient unit, with patients, their partners and their children. METHOD: Social workers were interviewed, sharing their experience and reflection on using the animated films as a practice tool. RESULTS: A number of case studies will be presented to describe the use and impact of the films in practice. CONCLUSION: The films are a very useful addition to the social work toolbox. Guidelines for their use in practice will be presented.