Introduction: Deceased organ donation is an extremely rare event. In the majority of cases donation requires someone to; 1) have suffered a traumatic brain injury (Girlanda, 2016), 2) be ventilated in an intensive care unit (Soria-Oliver et al., 2020) and, 3) be determined to be neurological brain dead (Shemie et al., 2014). Alternatively, when care is futile, a decision to withdraw life sustaining measures can initiate organ donation (Healey et al., 2020). Those supporting loved ones who suffer medical tragedy are faced with many decisions regarding patient care and when death is determined or care futile, they may be asked to consider organ donation. In 2022, a national qualitative study family donor experiences with the donation process in intensive care units (Sarti et al., 2023), the study revealed that donor families often feel abandoned, lack social support, and receive insufficient support. As a result, this current study aims to assess the literature by undertaking a scoping review to search for evidence-based family support tools.
Method: We used a scoping review using the Joanna Briggs Institute framework. With the help of a professional librarian, we searched the published literature (Ovid, MEDLINE, and PsychINFO). The search was conducted on March 24, 2024, and updated on April 10, 2024. Articles that met inclusion criteria included evidence-based peer review articles that contained or discussed family support tools used both in hospital and post hospital organ donation processes. We purposefully defined family support tools widely in an attempt to capture the breadth of existing tools (e.g., support groups, brochures, education, videos, care bundles). The first and second author screened the references, extracted and analyzed the publications.
Results: Fourteen references were included in this review, all studies were written in English (n=14), and came from a variety of countries including the United States (n=4), Israel (n=2), Australia (n=2), Belgium (n=1), Brazil (n=1), Hungary (n=1), Iran (n=1), France (n=1), United Kingdom (n=1) . The support tools identified were grouped into the following three thematic areas: support programs, family member assessment (grief and family experience), and clinical tools.
Conclusion: There is a limited number of academic studies focused on family support tools for use during and after the organ donation process. We are in the process of building a collaborative team across Canada including representatives from organ donation organizations, transplant societies, family members, and donation researchers to develop a suite of tools to be used by healthcare professionals with families as they journey through the organ donation process.