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Clinical researchers are now encouraged to include patient partners in all research projects. Nevertheless, published accounts of patient engagement in complex research projects, such as those involving critically ill and dying patients, are lacking. Whether this absence is due to the relatively new emergence of patient engagement research methods or fundamental challenges regarding family engagement in challenging research contexts is unclear. We describe our experiences with forming a researcher-family partnership in a deceased organ donation research project involving the prospective observation of potential and actual deceased organ donors dying in the intensive care unit.

Engaging family partners in deceased organ donation research—a reflection on one team’s experience