Does respite care address the needs of palliative care service users and carers? Their perspectives and experiences.

AIM: To establish whether respite care addresses the needs of palliative care service users and carers. BACKGROUND: Respite care is often described in UK policy and guidance as a key need to providing support for this group and yet little is known about it and there is a lack of research to support its efficacy. DESIGN: The approach was qualitative and the methodology was interpretive. The method used was constructivist grounded theory. METHODS: Data collection was carried out by unstructured informal interview with three couples and two bereaved carers who had experienced hospice respite care. RESULTS: 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. CONCLUSION: 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.

What does respite care mean for palliative care service users and carers? Messages from a conceptual mapping.

Over the coming years, as an ageing population with multiple chronic illnesses increases, the number of carers and paid carers is set to decrease. There is, therefore, an urgent need to understand what types of services are most supportive in helping to sustain caring relationships. Respite care is frequently mentioned as a key factor in supporting family carers and improving their quality of life but there is a lack of research to support its efficacy. This paper will present a conceptual map of respite care in order to promote a greater understanding of the multiple tensions that the palliative care respite literature reveals. As learning more about carer's needs and the complexities of the caring relationship develops, it is an appropriate time to map the key messages from the literature to help us understand what respite care does actually mean to palliative care service users and carers.