The Family Voices diary
Research type
Research Study
Full title
The Family Voices diary: a tool to improve end-of-life care through capturing real-time carer experience/feedback. A mixed-methods project to enable integration across all care settings.
IRAS ID
315211
Contact name
Donna Wakefield
Contact email
Sponsor organisation
North Tees and Hartlepool NHS FT
Duration of Study in the UK
0 years, 10 months, 9 days
Research summary
Previous research has mainly focused on evaluating quality of end-of-life care received, through gathering the experiences of family members post-bereavement. In 2010, the Specialist Palliative Care team at North Tees & Hartlepool NHS Foundation Trust highlighted that it was essential to improve end of life care through amplifying the voices of family carers and empower them to share their experience and have this responded to in real-time. This led to the co-production of the Family Voices diary, a communication aid so that family at end of life are encouraged to write their experiences or concerns within the diary each day (if they wish to do so) so staff can review this and address any concerns contemporaneously. Research showed that the Family Voices diary was well received and family reported that they did not find the tool distressing or burdensome. It was felt to be an innovative tool that improved communication between family and staff contributed to high quality end-of-life care and so was rolled out across all wards in the NHS Trust.
Patients often wish to be transferred to other settings for end of life care such as home, nursing home or hospice. To improve communication between family and all healthcare providers we plan to roll out the Family Voices diary across community & hospice settings in our area. Prior to roll-out, we will invite key stakeholders (GPs, District nurses, PPI representatives) to attend focus groups to agree ways to update and improve the current Family Voices Diary. After the updated version has been launched, we will perform qualitative interviews with family carers to receive feedback on whether they feel it has supported them and their loved one to receive high quality end of life care.REC name
London - South East Research Ethics Committee
REC reference
22/LO/0372
Date of REC Opinion
27 May 2022
REC opinion
Unfavourable Opinion