New publication from a CDTRP Trainee and CDTRP Family Partner on the experience of patient-researche
We are please to share a new peer reviewed publication written by a CDTRP Trainee and a CDTRP Family Partner looking at the challenges and unique opportunities of involving patients and/or family members as partners to help inform the research process and be part of the team.
Amanda van Beinum (left), a PhD student working on the DePPaRT study in Theme 2, and Heather Talbot (right), an organ donation advocate and family partner on the DePPaRT study, recently published the paper "Engaging family partners in deceased organ donation research—a reflection on one team’s experience" in Canadian Journal of Anesthesia/Journal canadien. We encourage anyone interested in the patient/family partnership experience to read this article and we are very proud to have patients/families and researchers working together to make important advances in donation and transplantation.
Here is the ABSTRACT from the paper:
Purpose - 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.
Methods - We used the Guidance for Reporting Involvement of Patients and the Public evidence-based, consensus-informed reporting guidelines to organize our narrative.
Results - We were able to initiate and sustain a research consultant relationship with the mother of a deceased organ donor for over two years. Challenges faced included: constraints on money and time, communication preferences, and the emotional stress of participating in difficult conversations. Positive outcomes included: improvement of data collection tools, new opportunities for access to research populations, and motivation to include family partnership in future grant proposals.
Conclusions - Family engagement in deceased organ donation research is feasible and contributes positively to study progress and outcomes. Patient and family engagement in challenging research contexts may require special attention to the emotional challenges of participation. We hope that our experience will encourage clinical researchers working in deceased organ donation and similarly complex domains to consider including patient partners in their projects.
READ THE FULL ARTICLE in the Journal of Anesthesia