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Offline Clark

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The experiences of family members of deceased organ donors and suggestions to improve the donation process: a qualitative study
Aimee J. Sarti, et al.
CMAJ August 08, 2022 194 (30) E1054-E1061; DOI: https://doi.org/10.1503/cmaj.220508

Background: Decisions about organ donation are stressful for family members of potential organ donors. We sought to comprehensively explore the donation process from interviews conducted with family members of patients admitted to pediatric and adult intensive care units in Canada.
Methods: We conducted a qualitative study using semistructured, in-depth interviews with 271 family members asked to make an organ donation decision. We recruited participants from all provinces with an organ donation organization (n = 10), and analyzed themes using a modified grounded theory approach. On the basis of these interviews, suggestions were made by researchers and family members on how to improve the process of organ donation.
Results: We identified 3 main themes and 9 subthemes. Families need more comprehensive support around the time of donation, including having access to someone with shared experiences, support during specific moments as needed and better support during critical transitions (e.g., when the donor body goes to the operating room). The theme of better connection to recipient(s) included receiving information about the donation surgery (e.g., which organs were recovered), establishing connection with recipients (e.g., via social networks or letters) and planned encounters. Support after donation, such as updates on organ transplantation, early mental health checks and continued connection to donor organizations, could be improved. We derived 20 suggestions for improving the organ donation process, derived from interviews with family members of pediatric and adult organ donors.
Interpretation: We found gaps in family support during end-of-life and donation care. Feelings of abandonment, lack of support and poor-to-little follow-up provide the empirical findings needed for hospitals and organ donor organizations to provide better support to donor families.
In Canada, 2 pathways to deceased organ donation exist. Families can be approached about organ donation after either neurologic determination of death or a decision to withdraw life-sustaining therapy. Family is defined by the patient or, in the case of minors or those without decision-making capacity, by their surrogates. They are people who provide support and with whom the patient has an important relationship.1 Families in the intensive care unit (ICU) who experience sudden or traumatic loss of a loved one and then face complex decisions around organ donation have unique experiences, and they depend upon health care professionals to support them throughout the process.2
Each Canadian province has its own registry or method for indicating a person’s intent to donate organs and tissues, with variability in the practices of the different provincial organ donation organizations, particularly about policies for identifying the recipient to donor families.
We aimed to explore the organ donation journey from the perspectives of the family members of potential pediatric or adult organ donors who had consented to organ donation across Canada. We also sought to make suggestions to improve the organ donation process, informed by the data from researchers and family members.

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