Defining Future Research Priorities in Donation and Organ and Stem Cell Transplantation With Patients, Families, Caregivers, Healthcare Providers and Researchers Within the Canadian National Transplant Research Program

Gallego, Fabian Ballesteros; Martin, Carolina Paula; Allard, Julie; Anthony, Samantha J.; Dumez, Vincent; Hartell, David; Hébert, Marie‐Josée; Knoll, Greg; West, Lori J.; Wright, Linda; Fortin, Marie-Chantal

doi:10.1097/txd.0000000000000791

Cited by 6 publications

(9 citation statements)

References 20 publications

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“…was invited as a member of the organ donation and transplantation community to participate in an initiative to set research priorities. 11 For H.T., involvement in organ donation research was an extension of her ongoing community and advocacy work.…”

Section: The Family Partnermentioning

confidence: 99%

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

Beinum

Talbot²,

Hornby

et al. 2019

Can J Anesth/J Can Anesth

Self Cite

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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

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Section: The Family Partnermentioning

confidence: 99%

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

Beinum

Talbot²,

Hornby

et al. 2019

Can J Anesth/J Can Anesth

Self Cite

View full text Add to dashboard Cite

show abstract

“…8 Research initiatives supported by the collaborative have informed the strategic direction of the ODT system in Canada and have led to the creation of patient identified research priorities. 5,6,9 This project was one that was supported through the ODTC.…”

Section: Introductionmentioning

confidence: 99%

The experiences of patients, caregivers and donors on transplant journeys in Canada: A convergent parallel mixed methods study

Fox,

Hall,

Thibodeau

et al. 2023

Evaluation Clinical Practice

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IntroductionThe organ donation and transplantation (ODT) system in Canada is complex and can be challenging for individuals to navigate. We thus aimed to illuminate the experiences of individuals on transplant journeys using a patient‐oriented convergent parallel mixed‐methods approach.MethodsWe captured data on adult patients, living donors, and caregivers on transplant journeys across Canada through an online survey (n = 935) and focus groups (n = 21). The survey was comprised of 48 questions about the individuals' experiences with the living donation and transplantation system, which were analyzed descriptively. Qualitative data were analyzed using an inductive conventional content analysis approach.ResultsMost participants were female (70.1%), English speaking (92.6%) and White (87.8%). Participants' experiences were represented across six key themes: holistic person‐centred care, accountable care, collective impact, navigating uncertainty, connection and advocacy. Quantitative and qualitative data were integrated to identify five opportunities to improve the organ donation and transplantation system in Canada: enhancing mental health support, establishing formal peer support programmes, improving continuity of care, improving knowledge acquisition, and expanding resources and support.ConclusionIt is imperative that the ODT system commits to asking, listening, and learning from individuals on transplant journeys and to provide them opportunities to help improve it.

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“…With the Advancing American Kidney Health Initiative, there is an expectation that transplantation rates will rise, alongside the increasing age and comorbidity burden in waitlisted transplant candidates, emphasizing the need for new data and new therapies for the care of these complex patients. Evidence to reduce or prevent premature death despite kidney function in the transplant population remains lacking, despite >50% of patients, caregivers, researchers, and health care providers citing “long-term medical complications of transplantation” as the highest research priority in the post-transplant period 13 . We therefore need a call to action for the entire transplant community, governmental and nongovernmental funding agencies, patient advocacy groups, federal agencies, and industry partners, to galvanize research and innovation in this area to improve the survival (especially cardiovascular) of transplant recipients.…”

mentioning

confidence: 99%

“…Evidence to reduce or prevent premature death despite kidney function in the transplant population remains lacking, despite .50% of patients, caregivers, researchers, and health care providers citing "long-term medical complications of transplantation" as the highest research priority in the post-transplant period. 13 We therefore need a call to action for the entire transplant community, governmental and nongovernmental funding agencies, patient advocacy groups, federal agencies, and industry partners, to galvanize research and innovation in this area to improve the survival (especially cardiovascular) of transplant recipients. We believe this must be a two-pronged effort.…”

mentioning

confidence: 99%

Premature Death in Kidney Transplant Recipients: The Time for Trials is Now

Vinson

Singh

Chadban

et al. 2022

JASN

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Defining Future Research Priorities in Donation and Organ and Stem Cell Transplantation With Patients, Families, Caregivers, Healthcare Providers and Researchers Within the Canadian National Transplant Research Program

Abstract: Supplemental digital content is available in the text.

Cited by 6 publications

References 20 publications

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

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

The experiences of patients, caregivers and donors on transplant journeys in Canada: A convergent parallel mixed methods study

Premature Death in Kidney Transplant Recipients: The Time for Trials is Now

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