Cottage Hospice : A threat to the prevailing paradigm? Findings from a participative action research study

Hughes, Sean and Barnes, Helen Elizabeth and Turner, Mary and Walshe, Catherine Elizabeth (2019) Cottage Hospice : A threat to the prevailing paradigm? Findings from a participative action research study. 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 with care provided mainly by family caregivers and volunteers. An ageing demographic and increasing sector costs require innovative service delivery designs. This new service offers more choice, but could be viewed as a threat to existing hospice care, de-professionalising death and reducing specialist provision. 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 Participants struggled to envisage the nature of Cottage Hospice and its interactions with existing hospice services and the local healthcare economy. Stakeholder views varied. Some saw the development as an intermediate option between ‘traditional’ hospice care and death at home. Others welcomed the creative potential of a concept disruptive of the status quo, while some feared it might reduce the quality of end-of-life care, as a trade-off for cost-savings. Conclusion While once at the leading edge of innovation in UK palliative care, hospices have become an established cornerstone of end-of-life provision. Innovation may be welcomed, but can also give rise to confusion and concern among users of hospice care and the hospice workforce alike. As such, careful management of change, robust communication systems and ‘buy in’ from stakeholders at all levels will be needed.