Abstract
The objective of this study was to understand the conceptualisation and development of a novel way of providing end-of-life care in a Cottage Hospice setting, with a focus on the role of family carers and volunteers within this care model. A participatory action research design enabled a situational analysis, together with change processes. The study setting was a hospice in the South of England, and its network of wider associates in the local health economy. Participants were purposively sampled to provide relevant information. Data collection (2017-2018) included documents (e.g., meeting minutes) and interviews (individual and group) with external (e.g., GPs) and internal (e.g., staff, managers, volunteers, patients, family carers) stakeholders. These were followed by action cycles conducted by a core action group which explored issues related to family and young carers, the relationship between the main and Cottage Hospices and workforce engagement with the change process. Iterative, inductive, thematic analysis was followed by axial coding facilitated within NVivo. Twenty-six individual and eight follow-up interviews, two group interviews and five discrete action cycles were completed. At the core was a focus on disruption of the norm of professionally provided and mediated care, with three main themes: imagining the future of Cottage Hospice (growing demand, a home-like space, innovative roles for families and volunteers); developing the role of family caregivers (making agreements, meeting needs, social inclusion and the 'unknown' expectations) and quality and safety issues (negative perceptions, personalised care and volunteer roles). Change was viewed as both a threat and an opportunity. Cottage Hospice represents the possibility of a truly new way of meeting the needs of dying people and their families, and could act as a template for progressive service developments elsewhere.
Highlights
Palliative care providers, and the communities they serve, are encouraged to develop new ways of providing care towards the end of life
The purpose of this paper is to focus on the central role within the developing model that family carers and volunteers are expected to play
The Core Action Group consisted of nine members and met regularly between October 2017 and September 2018 engaging in five discrete action cycles
Summary
Palliative care providers, and the communities they serve, are encouraged to develop new ways of providing care towards the end of life. The past decade or so has witnessed the development of compassionate communities as a public health response to palliative and end-of-life care (Kellehear, 2013; Sallnow, Richardson, Murray, & Kellehear, 2016). This approach roots such care in communities and social networks where the majority of us, especially when death results from progressive illness or old age, spend the last months and weeks of our lives (Abel et al, 2013; Greene, Aranda, Tieman, Fazekas, & Currow, 2012; Leonard, Horsfall, & Noonan, 2013; Reeves et al, 2014; Sampson et al, 2018). It reminds us that dying, death and bereavement are universal experiences and part of the normal life course
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