Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol

Crawshaw, Jacob; Presseau, Justin; Allen, Zack van; Carvalho, Lívia Pinheiro; Jordison, Kim; English, Shane; Fergusson, Dean; Lauzier, François; Turgeon, Alexis F.; Sarti, Aimee; Martin, Claudio M.; D’Aragon, Frédérick; Li, Alvin H.; Knoll, Greg; Ball, Ian; Brehaut, Jamie; Burns, Karen E. A.; Fortin, Marie-Chantal; Weiss, Matthew J.; Meade, Maureen O.; Marsolais, Pierre; Shemie, Sam D.; Zaabat, Sanabelle; Dhanani, Sonny; Kitto, Simon; Chassé, Michaël

doi:10.1136/bmjopen-2019-034594

Cited by 6 publications

(4 citation statements)

References 33 publications

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“…With research in this context focussing on enabling informed decisions and increasing donation rates (Ashkenazi & Cohen, 2015 ; Marck et al, 2016 ), connections between in-hospital experiences and ongoing adjustment are under-explored, especially in relation to Donation after Circulatory Determination of Death (DCDD, Dimo, 2019 ; Naef et al, 2020 ; Sque et al, 2018 ; Takaoka et al, 2020 ; Zheng et al, 2020 ). Identifying and responding to family and staff needs in this complex environment are challenging tasks for HCPs (Kerstis & Widarsson, 2020 ; Shariff et al, 2017 ; Simonsson et al, 2020 ; Walker & Sque, 2019 ; Zellweger et al, 2017 ), highlighting the need for training to improve end-of-life care and peer support (Chan et al, 2020 ; Crawshaw et al, 2019 ; Witjes et al, 2017 , 2019a , 2019b ).…”

Section: Introductionmentioning

confidence: 99%

The bereavement experiences of families of potential organ donors: a qualitative longitudinal case study illuminating opportunities for family care

Dicks

Northam

Haren

et al. 2022

International Journal of Qualitative Studies on Health and Well

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Objectives To illuminate opportunities for care in the context of deceased organ donation by exploring pre-existing family and healthcare professional characteristics, in-hospital experiences, and ongoing adjustment through the lenses of grief theory, systems theory, meaning-making, narrative, and organ donation literature. Method Qualitative longitudinal case studies explored individual and family change in five Australian families who had consented to Donation after Circulatory Determination of Death at a single centre. Participants attended semi-structured interviews at four, eight, and twelve months after the death. Findings Family values, pre-existing relationships, and in-hospital experiences influenced first responses to their changed lives, understanding of the patient’s death, and ongoing family adjustment. Novel behaviour that was conguent with family values was required at the hospital, especially if the patient had previously played a key role in family decision-making. This behaviour and emerging interactional patterns were drawn into family life over the first year of their bereavement. Recommendations Training that includes lenses introduced in this study will enable healthcare professionals to confidently respond to individual and family psychosocial needs. Conclusion The lenses of grief theory and systems thinking highlight opportunities for care tailored to the unique in-hospital context and needs that emerge in the months that follow.

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Section: Introductionmentioning

confidence: 99%

The bereavement experiences of families of potential organ donors: a qualitative longitudinal case study illuminating opportunities for family care

Dicks

Northam

Haren

et al. 2022

International Journal of Qualitative Studies on Health and Well

View full text Add to dashboard Cite

show abstract

“…As experts of their lived healthcare experiences, patients and their caregivers can also provide valuable insight into potential barriers and enablers faced throughout the care pathway and during research. Patients can provide crucial insight on ethical issues, such as providing reassurance that the study is appropriate, and feedback on how to handle difficult discussions, such as approaching and recruiting patients at sensitive times or for sensitive topics [6,7]. Recent reviews indicate patient engagement is gaining traction in clinical research [8,9].…”

Section: Introductionmentioning

confidence: 99%

Partnering with patients to get better outcomes with chimeric antigen receptor T-cell therapy: towards engagement of patients in early phase trials

Foster

Fergusson

Hawrysh³

et al. 2020

Res Involv Engagem

Self Cite

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Aim Though patient engagement in clinical research is growing, recent reports suggest few clinical trials report on such activities. To address this gap, we describe our approach to patient engagement in the development of a clinical trial protocol to assess a new immunotherapy for blood cancer (chimeric antigen receptor T-cell therapy, CAR-T cell therapy). Methods Our team developed a clinical trial protocol by working with patient partners from inception. Two patient partners with lived blood cancer experience were identified through referrals from our team’s professional network and patient organization contacts. Our patient partners were onboarded to the team and engaged in several studies conducted to develop the clinical trial protocol, including a systematic review of the existing literature on the therapy, patient interviews and a survey to obtain perspectives on barriers and enablers to participating in the trial, an early economic analysis, and a retrospective cohort study. Results Engaging patient partners enhanced our research in ways that would not have otherwise occurred. By selecting patient important outcomes for data collection, our partners helped flag that quality of life and health utility measures have not been reported in previous CAR-T cell therapy trials for blood cancer. Our partners also co-developed a non-technical summary of the systematic review that summarized results in an accessible manner. Our patient partners reviewed interview and survey questions, to improve the language and appropriateness; provided recruitment suggestions; and provided a patient perspective on the results, thereby confirming the importance of findings. Input was also obtained on costs for the early economic analysis. Our patient partners identified costs that may be a burden to both patients and caregivers during a trial and helped to confirm that the overall structure of the economic model reflected the patient care pathway. Our patient partners also shared their diagnosis and treatment stories, which helped to provide the research team with insight into this experience. Conclusions Contributions by our patient partners were invaluable to each component study, as well as the overall development of the trial protocol. We plan to use this approach in the future in order to meaningfully engage patients in the development of other clinical trials; we also hope that by reporting our methods this will help other research teams to do the same. Trial registration Affiliated with the development of NCT03765177.

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“…As experts of their lived healthcare experiences, patients and their caregivers can also provide valuable insight into potential barriers and enablers faced throughout the care pathway and during research. Patients can provide crucial insight on ethical issues, such as providing reassurance that the study is appropriate, and feedback on how to handle di cult discussions, such as approaching and recruiting patients at sensitive times or for sensitive topics (6,7). A recent systematic review has also shown that patient engagement is associated with modestly improved clinical trial recruitment (8).…”

Section: Introductionmentioning

confidence: 99%

Partnering with Patients to Get Better Outcomes with Chimeric Antigen Receptor T-cell Therapy: Towards Meaningful Patient Engagement in Early Phase Trials

Foster

Fergusson

Hawrysh

et al. 2020

Preprint

Self Cite

View full text Add to dashboard Cite

Aim: Though patient engagement in clinical research is growing, recent reports suggest few clinical trials report on such activities. To address this gap, we describe our approach to patient engagement in the development of a clinical trial protocol for a new immunotherapy for blood cancer (chimeric antigen receptor T-cell therapy, CAR-T cell therapy). Methods: Our team developed a clinical trial protocol by working with patient partners from inception. Two patient partners with lived blood cancer experience were identified through referrals from our team’s professional network and patient organization contacts. Our patient partners were onboarded to the team and engaged in several studies conducted to develop the clinical trial protocol, including a systematic review of the existing literature on the therapy, patient interviews and a survey to obtain perspectives on barriers and enablers to participating in the trial, an early economic analysis, and a retrospective cohort study. Results: Engaging patient partners enhanced our research in ways that would not have otherwise occurred. By selecting patient important outcomes for data collection, our partners helped flag that quality of life and health utility measures have not been reported in previous CAR-T cell therapy trials for blood cancer. Our partners also co-developed a non-technical summary of the systematic review that summarized results in an accessible manner. Our patient partners reviewed interview and survey questions, to improve the language and appropriateness; provided recruitment suggestions; and provided a patient perspective on the results, thereby confirming the importance of findings. Input was also obtained on costs for the early economic analysis. Our patient partners identified costs that may be a burden to both patients and caregivers during a trial and helped to confirm that the overall structure of the economic model reflected the patient care pathway. Our patient partners also shared their diagnosis and treatment stories, which helped to provide the research team with insight into this experience.Conclusions: Contributions by our patient partners were invaluable to each component study, as well as the overall development of the trial protocol. We plan to use this approach in the future, to meaningfully engage patients in the development of other clinical trials; we also hope that by reporting our methods this will help other research teams to do the same. Trial Registration: Affiliated with the development of NCT03765177

show abstract

Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol

Cited by 6 publications

References 33 publications

The bereavement experiences of families of potential organ donors: a qualitative longitudinal case study illuminating opportunities for family care

The bereavement experiences of families of potential organ donors: a qualitative longitudinal case study illuminating opportunities for family care

Partnering with patients to get better outcomes with chimeric antigen receptor T-cell therapy: towards engagement of patients in early phase trials

Partnering with Patients to Get Better Outcomes with Chimeric Antigen Receptor T-cell Therapy: Towards Meaningful Patient Engagement in Early Phase Trials

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