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P-12 Public involvement (PI) in a study of bereavement support services for adults
  1. Kathy Seddon1,
  2. Jim Fitzgibbon1,
  3. Barbara Harrington1,
  4. Fiona Morgan2,
  5. Hannah Scott1,
  6. Stephanie Sivell1,
  7. Sara Pickett3,
  8. Mirella Longo1,
  9. Anthony Byrne1,
  10. Annmarie Nelson1 and
  11. Emily Harrop1
  1. 1Marie Curie Research Centre, Cardiff, UK
  2. 2Specialist Unit for Review Evidence, Cardiff, UK
  3. 3AWTTC, Cardiff, UK


Introduction Bereaved adults may develop complicated grief reactions associated with mental and physical health problems and good support services are vital. This research included a systematic review and the development of a core outcome set for bereavement support service research in palliative care. The collaborative relationship (PI) with the Research Partners (RPs) was fully planned and then documented through reflective logs. PI was central to this research.

Aim To detail the RPs’ contribution to this study.

Methodology RPs helped refine the research question. Following this a study protocol was agreed that set out the steps needed to ensure that: (1) Research design and methods used were appropriate for bereaved adults; (2) All documentation and outputs were accessible to ‘lay’ readers; (3) RPs ‘experience based’ expertise was embedded in ongoing planning, outputs and ongoing research design; (4) The experience for RPs was worthwhile leading to new skills and knowledge detailed in the reflective logs. Reflective log sheets were used to capture how well this was achieved. Researchers and RPs completed these independently. Their reflections were shared at quarterly meetings and used to inform each stage of the research.

Results The reflective logs confirmed that steps 1 to 5 were carried out. RP inputs achieved the planned impact (e.g. the questionnaires held hardly any missing data, reflecting content and face-validity). Enhancement of the bereavement research through planned, documented RP collaboration was thus confirmed.

Conclusion Well-planned and documented PI can enhance the quality of health care research. Researchers felt that the solid collaboration with the research partner broadened their perspective and signalled a clear departure from a simple tick-box exercise. Research Partners confirmed the rich learning gained through participation.

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