Abstract

 Background:

It is increasingly recognised that the needs of family carers should be assessed and addressed in end-of-life (EOL) care. However, there are no evidence based measures suitable for use in routine practice to ensure comprehensive and consistent assessment of carer support needs.

Aims

To identify the key support needs of carers in end of life home care

To develop a brief, comprehensive carer support needs assessment tool suitable for use in routine practice

Methods:

Sample:75 family carers of deceased patients referred to five Hospice at Home services, six to nine months post-bereavement.

Methodology: Nine focus groups (FGs), with 4-8 participants, lasting between one and half and two hours plus 22 semi-structured telephone interviews with carers unable to attend FGs. Carers were asked to identify key aspects of support that were important to them in EOL home care. FGs and interviews were audio recorded and transcribed verbatim. Data were analysed thematically using a framework analysis approach.

Results:

Carers’ support needs fell into two main categories. The first was support that ‘enabled the carer to care’: support from health professionals that ensured they were better equipped to care for the patient. Key aspects included support with understanding the patient’s illness, knowing what to expect in the future, who to contact if concerned, as well as practical aspects of care provision. The second category involved direct support for carers themselves, particularly overnight respite, a break in the day and opportunities to talk about their own feelings. A brief Carer Support Needs Assessment Tool was developed based on the findings and is currently undergoing further testing.

 Conclusion:

Carers have considerable need for support when looking after someone at home towards the end of life. A simple but comprehensive assessment tool may facilitate the identification and communication of carer support needs.