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40 Detailing public involvement (PI) within a study of bereavement support services for adults bereaved through advanced illness
  1. Kathy Seddon1,
  2. Jim Fitzgibbon1,
  3. Barbara Harrington1,
  4. Fiona Morgan2,3,
  5. Hannah Scott2,
  6. Stephanie Sivell2,
  7. Sara Pickett4,
  8. Mirella Longo2,
  9. Anthony Byrne2,
  10. Annmarie Nelson2 and
  11. Emily Harrop2
  1. 1Patient and Public Representative, UK
  2. 2Marie Curie Palliative Care Research Centre, Cardiff University, UK
  3. 3Specialist Unit for Review Evidence, Cardiff University, UK
  4. 4Swansea Centre for Health Economics, Swansea University, UK


Introduction Adults experiencing a loss might develop complicated grief reactions which is associated with mental and physical health problems. This study included a systematic review of the evidence and the development of a core outcome set for bereavement research in palliative care. Public involvement was integral throughout. The collaborative relationship with the research partners (RPs) was fully planned and then documented through reflective log sheets.

Aim To detail the research partners’ contribution to the study.

Methodology RPs helped refine the RQ. The study protocol set out the steps needed to ensure that:

  1. Research design and methods used were appropriate for bereaved adults

  2. Study documentation and outputs were accessible to ‘lay’ readers

  3. RPs ‘experience based’ expertise was embedded in ongoing project planning outputs and future research design

  4. The experience for RPs was worthwhile leading to new skills and knowledge

Reflective log sheets were used to capture how well this was achieved. These were completed independently by the researcher and RPs. Their reflections were shared at quarterly meetings.

Results The reflective logs confirmed that steps one to five 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 collaboration was thus confirmed.

Conclusion Well planned and documented PI enhances 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.

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