Author(s): Ingleton, C., Payne, S., Nolan, M., and Carey, I.

Published In: Palliat Med; 17(7):567-75

Study Aim/Purpose: The purpose of this paper was to consider the definitions and assumptions that underpin the term respite and its impact on the physical, psychological and social outcomes of carers in palliative care contexts. 

Summary of Methods: The literature review, which involved searching five electronic databases (Web of Science, Medline, CINHAHAL, Cochrane Database System Review and Social Sciences Citation Index), identified a total of 260 peer-reviewed journal articles in English focused on adult respite services, of which 28 related directly to adult respite care in palliative care contexts. The search strategies used the following key words: ‘palliative care’ or ‘terminal care’, or ‘end-of-life care” or “hospice” or “palliative day care”, or “palliative home care” and “respite care”, and “informal carers” and “family carers.” 

Summary of Key Results (related to studies of effectiveness): The authors found “no empirical studies assessing the effects of specialist palliative respite care intervention on carer wellbeing.” They state that “what research evidence there is about carers is largely derived from those caring for older people with long term, but not immediately terminal illnesses.” 

Limitations of Studies Reviewed (as cited by the authors): The authors raise several conceptual and methodological problems with studies on the effects of palliative respite care on carer well-being. For example, they state that applying outcome indicators to evaluate the effectiveness of respite in palliative care necessitates clear definitions of the content and model of services, yet there is little known about these features beyond that respite is delivered in a wide range of settings and there are wide variations in the pattern of specialist and nonpecialist and voluntary and statutory services. Also, they note that research in the family caregiving literature has focused on the negative or pathological aspects of care to the relative while disregarding sources of satisfaction and reward. They suggest a more balanced approach “which recognizes both challenging and positive perceptions of family care giving and satisfaction with roles.” 

Authors’ Discussion/Conclusions: The authors state that “there is insufficient evidence to draw conclusions about the efficacy of offering respite care to support carers of patients with advanced disease.” They also point out that their review “indicates that little attention has been devoted to examining the impact of interventions such as respite on the carer rather than the patient. The views of carers have been frequently elicited in palliative care research, but generally as proxies for patients rather than in their own right.”