Family’s Voice Diary: supporting carers at End-of-Life
Research type
Research Study
Full title
The Family’s Voice Diary: Evaluating how we support and improve communication with the patient’s carer (family or friend) at the end-of-life
IRAS ID
319426
Contact name
Donna Wakefield
Contact email
Sponsor organisation
North Tees and Hartlepool NHS FT
Duration of Study in the UK
0 years, 6 months, 2 days
Research summary
A carer is anyone, such as a family member or friend, who provides unpaid help to someone, who needs support because of an illness. For people with progressive illnesses, demands on the caregiver can become increasingly intense, resulting in distress and impacting on their physical and mental health. At end-of-life, the psychosocial burden of the carer may exceed that of the patient.
Support for carers is often lacking, this is especially true in areas of higher socio-economic deprivation. Despite extensive research that carers have unmet needs, there is little evidence on how we can provide better support. This study (funded by NHS England) explores how we could provide better support for carers and whether a tool could be developed to help.
A tool previously developed at our hospital 12 years ago, to aid communication between carers and nursing staff was used as a starting point. Three focus groups of healthcare professionals (n=24) (including community/hospital/hospice nurses and doctors, paramedics and bereavement officers), two focus groups of PPI members (n=8) and interviews with bereaved carers (n=3) were conducted to explore how this previous tool could be adapted to provide support to carers across all settings. Based on these findings, the previous tool was extensively modified to create the new “Family’s Voice Diary”.
150 pilot diaries have been distributed to healthcare professionals who look after patients at end-of-life, to disseminate to the carers. After use, they will be returned to the research team. They contain an optional page for the carer to give their details and permission to be contacted. This study will involve interviewing the carers and healthcare professionals about; how we could better support carers, if the new diary is helpful and if further refinement is needed before planned national rollout.
REC name
East Midlands - Nottingham 2 Research Ethics Committee
REC reference
23/EM/0139
Date of REC Opinion
30 Jun 2023
REC opinion
Favourable Opinion