How can healthcare professionals better support family caregivers in the final days of life?
Evidence Hub
How can healthcare professionals better support family caregivers in the final days of life: Could the ‘Family’s Voice Diary’ help? A qualitative study based in an area of high socio-economic deprivation
Quick read summary
When someone is dying, their family and friends play a vital role in supporting them. However, the person’s family/friends may need support themselves. There can also be problems with communication between family and healthcare staff when someone is dying.
People living in disadvantaged areas are more likely to face inequalities in accessing support.
Developing a tool in collaboration with people living and working in a deprived area is important to try and address this problem.
With the help of bereaved carers, members of the public and healthcare professionals, the Specialist Palliative Care team at North Tees and Hartlepool NHS Foundation Trust co-produced the Family Voices diary.
This diary is offered to family/friends of someone in the final days of life. The diary is multipurpose, it has space for relatives/friends to write reflections and to communicate with healthcare staff. It also lists information such as what to expect when someone is dying, what to do after someone has died and how to access bereavement support.
This study involved looking at completed Family’s Voice Diaries and interviewing relatives and healthcare staff to see if (and how) it was helpful and what improvements could be made.
Key findings
Relatives and friends value support from healthcare staff when a loved one is dying. However, they may be reluctant to ask for help.
Some people found the family’s voice diary helpful to make their voice feel heard, especially in the hospital setting. It was also found to be helpful in communicating with staff and also between family members.
A barrier to healthcare staff giving out the family’s voice diary, was staff feeling unprepared or uncomfortable talking about dying.
It was highlighted that a simplified version is needed as many people struggle with reading.
Other findings
Feedback on the diary was positive, with no concerns of harm through its use. A simple, low-cost tool that does not require specialist knowledge or much time to introduce is something that has the potential to be rolled out more widely, with the potential to improve communication and collaboration between carers and healthcare professionals and provide support and signposting.
The study findings illustrate that giving relatives the option to engage with the diary is the most important thing. Whether or not and how they use it will be as unique as their relative’s end-of-life journey. The value of the diary is therefore not necessarily in how it is being used or it being used in a standardised way, but that it is being offered and explained in ways that are relevant and person-centred.
Conclusions and next steps
This study adds to the evidence base that there is a need for further carer support and clearer communication at the end of life. The diary appears to be valued as an optional addition to prompt communication, aid self-reflection and signpost to further support.
Clearer instructions and training on the purpose of the diary could improve its implementation. Further training for healthcare staff, to enable them to feel more comfortable discussing dying with carers and be able to offer support, would also be beneficial.
This study involved using the diary with patients dying in hospital, hospice and home across Hartlepool and Stockton. There are now plans to further refine the diary and use it more widely in areas across North East England.
The study was funded by NHS England, and supported by researchers from the ARC North East and North Cumbria.
It was led by Dr Donna Wakefield, Palliative Medicine Consultant, University Hospital of North Tees, Stockton-on-Tees.
Read the full paper
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