Rehabilitative palliative care as a health promoting approach : a participatory action research study

Clarke, Karen and Froggatt, Katherine and Brearley, Sarah (2019) Rehabilitative palliative care as a health promoting approach : a participatory action research study. PhD thesis, Lancaster University.

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Abstract

Health promoting palliative care views dying and death as a social phenomenon, with communities playing an integral role. As providers of palliative care, hospices are facing significant shifts in demography and illness and need to find innovative and sustainable ways to respond. Rehabilitation focuses on promoting optimal function, well-being and quality of life, but in the context of palliative care is misunderstood and under-utilised. This research assessed whether rehabilitative palliative care offers an opportunity to integrate a health promoting approach in a UK hospice in-patient setting. Taking a participatory worldview perspective, three inquiries were undertaken. Firstly, using participatory action research, a co-operative inquiry group was established to plan and implement ways to integrate this approach. The second inquiry used thematic analysis to examine the facilitators and barriers, and thirdly a literature review assessed whether these factors were present in other studies. Following these three inquiries, the alignment and dissonance between health promoting and rehabilitative palliative care were examined. Eight co-operative inquiry group members met 11 times between June 2015 and June 2016. Through working collaboratively, the group created a communicative space and was able to initiate change, as evidenced by a post intervention review. This was done by gaining a common understanding and developing a mutual interest in the topic, developing workshops to inform the broader multidisciplinary team and exploiting opportunities to demonstrate rehabilitative palliative care in practice. There were common facilitators and barriers in the findings from this study and the literature, many of them evident in change initiatives generally. However, some were unique including a potential conflict between a model of care focused on caring (palliative), and one based on enabling (rehabilitation). Similarities in the principles underpinning health promoting and rehabilitative palliative care were identified. The conclusions illustrate that despite its close associations with community initiatives, a health promoting approach to palliative care can be adopted in an in-patient setting.