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P136 Supporting informal carers at end-of-life; a qualitative study across socio-economically deprived areas in North East England
  1. Donna Wakefield1,2,
  2. Mel McEvoy1,
  3. Zoe Booth1,
  4. Michaela Fay3,
  5. Matthew Breckons2
  1. 1Specialist Palliative Care Team, North Tees and Hartlepool NHS Foundation Trust, Stockton-On-Tees, UK
  2. 2Population Health Sciences Institute, Newcastle University, Newcastle Upon Tyne, UK


Background Informal carers (family/friends) play a vital, and unpaid, role in supporting people at end-of-life and contribute significantly to the economy (by reducing formal care costs). Extensive research has highlighted the negative impact on carers’ physical and mental health, with psychosocial burden often exceeding that of the patient. This experience can result in prolonged bereavement and impact on the person’s ability to re-enter the workforce. Inequalities exist, with disproportionate impact on women and those in deprived areas. Despite awareness of these issues, support for carers at end-of-life is lacking. This study (funded by NHS England) explores the development and evaluation of a tool to provide support to this group.

Methods Stakeholder engagement took place to collect feedback and suggest modifications to a tool (family diary) previously introduced at a local hospital 12 years ago, as a communication aid. Three focus groups of healthcare professionals (n=24) from a range of backgrounds (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 the diary could be adapted to provide support to carers across all settings. Focus groups and interviews were digitally recorded and transcribed verbatim. A thematic analysis was undertaken to identify perspectives on using the diary and any necessary changes.

Results Main areas of feedback included content of the diary, use of language and making the supportive purpose of the diary explicit to carers. There was consensus that writing down experiences could be empowering and help clarify thinking to support communication with healthcare professionals, but that there is not a ‘one-size fits all approach.’ Key design considerations included allowing plenty of space to write and reflect, providing information about what to expect after death and signposting to bereavement support. Comments on language included acknowledging ‘chosen family’ rather than assuming carers are biological family.

Conclusion The new ‘Family’s Voice Diary’ has been designed using the feedback received. One-hundred and fifty pilot diaries have been distributed to healthcare professionals across the locality for dissemination to carers at home, hospital and hospice. Diaries contain a page for optional permission to use demographic data and consent to contact carers; these will be returned to the research team. Purposeful sampling will be used to conduct interviews to evaluate impact from carers’ perspectives and explore experiences stratified by gender and deprivation. Any necessary refinements will be made prior to national rollout.

  • Carers
  • End-of-Life
  • Deprivation

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