Research aims To explore the perspectives and experience of respite care of married or bereaved palliative care service users and carers and to establish in what ways respite care addresses their needs. The research is located in a professional doctorate study.
Background There are clear indications that over the coming years, as more people live longer into old age and die as a consequence of chronic disease, an increasing amount of support for carers of patients with palliative care needs will be required. In UK policy and guidance, respite care is frequently mentioned as a key factor in supporting carers. However, little is known about respite care for people in this group and the study addresses this gap in knowledge.
Methods The approach was qualitative, the methodology was interpretive and the method used was constructivist Grounded Theory. Data collection was carried out by unstructured informal interview with couples who had experienced hospice respite care. Social network circle activity was undertaken as part of theoretical sampling.
Results 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.
Conclusions The articulation of respite care needs and the insights gained in this study have the potential to influence hospice practice and provide a platform for innovative service development and improvement which is sensitive to the needs and capacity of local communities.
Application to hospice practice 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 trajectory is acknowledged.
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