Volunteers, family caregivers and co-production in end of life care – a big ask? Exploring potential hurdles using participatory action research in the development of Cottage Hospice - a new model of care.

Hughes, Sean and Barnes, Helen Elizabeth and Turner, Mary and Walshe, Catherine Elizabeth (2019) Volunteers, family caregivers and co-production in end of life care – a big ask? Exploring potential hurdles using participatory action research in the development of Cottage Hospice - a new model of care. In: 16th World Congress of the European Association for Palliative Care, 2019-05-23 - 2019-05-25, ESTREL Congress Center.

Abstract

Background Cottage Hospice is a new model of end-of-life service where care will be provided by family members and volunteers. Volunteers will multi-task, doing domestic cleaning and providing personal care – also overnight. Family caregivers are asked to sign an agreement to provide care and remain on the premises. While these roles offer greater involvement and control, they also represent a significant increase in (unpaid) responsibility and commitment. Aims To use participatory action research (PAR) to evaluate the development of Cottage Hospice from inception to opening and to disseminate the knowledge gained to inform service innovation in the sector. Methods An embedded researcher implemented a PAR approach in a UK hospice over 29 months. Documentary analysis was conducted using strategic records, internal meeting minutes, press releases and other written materials (n=120+). Semi-structured interviews (participants: n=36) captured stakeholder views on process and progress over time. A series of action cycles led by a Core Action Group identified key areas for solution focussed change. A patient and carer advisory panel contributed to data analysis. Results The research identified enthusiasm and support for the increased autonomy offered for patients and family caregivers in the dying phase, alongside some unease about the level of commitment being sought and how sustainable this might be for the individual and their wider family. Views also varied on how appealing the volunteer roles would be, and whether sufficient people with the appropriate skills and attitudes would come forward. Conclusion Delivering this innovative model of hospice care is highly contingent upon the capacity and willingness of family members and volunteers to provide hands-on care in the final days and weeks of life. It remains to be seen to what extent the ambitious scale of co-production currently envisaged will be embraced by service users and the wider local community.