40 Detailing public involvement (PI) within a study of bereavement support services for adults bereaved through advanced illness

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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.


To detail the research partners’ contribution to the study.


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


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.


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.


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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