Background Family carers play a central role in supporting patients at home towards the end of life. However, they often suffer considerable adverse effects from care giving. To improve care provision for carers the authors need to understand the predominant domains of support associated with adverse effects from care giving, where lack of support may have the greatest negative impact.
Aims To investigate the relative importance of different support domains in explaining adverse effects from care giving.
Methods Six hospice home care services in the UK identified and sent a postal survey to the main carer of all patients active on their caseload. N=225 carers participated (25% response rate). Survey measures included carer Preparedness (Archbold et al), Global Health (EORC QLQ-C30), Strain and Distress (FACQ-PC). Lack of support was measured through 14 core support domains of the Carer Support Needs Assessment Tool (CSNAT). Linear regression analysis was conducted to examine the associations between the support domains and carers' perceived preparedness, global health, strain and distress. The Pratt Index was used to evaluate relative importance.
Results Lack of daytime and night-time respite and not knowing what to expect in the future, were the most important CSNAT domains in explaining adverse effects from care giving. Overall lack of support explained the greatest variance in Strain (47%) and Global Health (35%), followed by Distress (29%) and Preparedness (27%). Further details of the relative importance of each support domain on each type of adverse effect will be presented.
Conclusions While the authors know general support for carers is likely to be beneficial, our analysis demonstrates the importance of understanding the relative importance of different domains of support in preventing adverse effects, in particular respite and reducing uncertainty about what to expect in the future.
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