Background: Current end-of-life care policy and guidance recognises the important contribution of family carers, recommending that their needs should be assessed to support them in their caring role. How regular carer assessment is to be achieved is unclear, particularly because there is no evidence-based tool for directly assessing carers’ support needs that is suitable for use in end-of-life home care practice.
Aims: To obtain carers’ perspectives of key aspects of support needed during provision of end-of-life care at home and to develop a carer support needs assessment tool suitable for use in everyday practice.
Design: Qualitative using focus groups and telephone interviews. Thematic analysis uses a framework approach.
Setting/participants: 75 adult bereaved carers who were family members/friends of patients referred to five Hospice at Home services in the UK.
Results: Carers’ needs fell into two distinct groupings of key support areas or ‘domains’: support to enable them to provide care for their relative and more direct personal support for themselves. Many aspects of supportive input were common across domains, for example, anticipatory information, explanations or being included in the care process. Therefore, the tool was designed as a screening measure, to identify support needs requiring further detailed assessment.
Conclusions: The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based direct measure of carers’ support needs in 14 domains. It is short but comprehensive in approach and thus suitable for both end-of-life care research and practice. Further work has been undertaken to test its psychometric properties.