Does Respite Care Address the Needs of Palliative Care Service Users and Carers? An Exploration of their Perspectives and Experience of Respite Care

Wolkowski, Anna (2012) Does Respite Care Address the Needs of Palliative Care Service Users and Carers? An Exploration of their Perspectives and Experience of Respite Care. Doctoral thesis, University of Northumbria at Newcastle.

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Abstract

There are clear indications that over the coming years, as more people live longer with life limiting illnesses an increasing amount of support for carers of service users with palliative care needs will be required. Respite care is often described in UK policy and guidance as a key need in providing this support and yet little is known about it for patients with life limiting illnesses and there is a lack of research to support its efficacy. The purpose of this research was therefore to establish whether respite care addresses the needs of palliative care service users and carers.

The approach was qualitative and the methodology was interpretive. The method used was constructivist Grounded Theory. This provided high compatibility with the theoretical underpinnings which were learning from the experiences of service users and carers, embracing the principles of critical practise and learning through relational endeavour. Data collection was carried out by unstructured informal interview with three couples and two bereaved carers who had experienced hospice respite care. The participants were interviewed on two occasions and social network circle activity was undertaken as part of theoretical sampling.

Findings showed that respite care is valued by palliative care service users and carers although there are some fundamental tensions in service models which limit its potential. A theory of vulnerability and resilience was developed which accommodated issues of needs and acceptance, choice and risk, loss and gains.

A reframing of respite care as an empathic response within a new palliative care approach is proposed. Within this the centrality of the relationship is reinforced and the need for support over a potentially long and more uncertain illness trajectory is acknowledged. The articulation of respite care needs and the insights gained in this study have the potential to influence practice and provide a platform for innovative service development and improvement.

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