Barnes, Helen Elizabeth and Walshe, Catherine Elizabeth and Turner, Mary and Hughes, Sean (2019) Back to the future: Bringing family caregivers centre stage in a new Cottage Hospice model of end of life care. Considerations from an action research study. In: 16th World Congress of the European Association for Palliative Care, 2019-05-23 - 2019-05-25, ESTREL Congress Center.
Full text not available from this repository.Abstract
Background A UK hospice is launching a new model of end-of-life provision, Cottage Hospice, responding to demographic and cost challenges. Family members and volunteers will provide the majority of patient care, in a move to ‘bring death back to the community’. While presented as an innovation, this could equally be seen as a return to an emphasis on informal and unpaid care. 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 research 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 Some stakeholders embraced this vision, envisaging a constituency of people able and willing to provide end of life care for those close to them. Others remained doubtful about caregiver capacity – suggesting that older spouses might be too frail or unwell while younger family members might have domestic or work commitments – or felt that it would require too large an attitudinal shift. ‘Contracting’ with family caregivers was seen by some as potentially problematic in practice. These factors could limit take-up and threaten the viability of the initiative. Conclusion Delivering this new model of hospice care is highly contingent upon the capacity and willingness of family members to provide hands-on care in the final weeks of life. Our research suggests varied views on the proportion of people able to fulfil this role, highlighting a key risk to successful implementation.