Table 1:

Twenty suggestions for improving the organ donation process, derived from interviews with family members of pediatric and adult organ donors

Qualitative theme	Suggestions
Theme 1: support
Shared experiences	Have another person, who has lived a similar experience, available to provide support at the hospital. These people might be selected from a virtual donor network (e.g., donation champions). Identify opportunities to engage family members to act in this support role, for the opportunity for mutual support during their bereavement. Share resources that others have found helpful, including online material, books and information from national and international organizations.
Specific moments	Clarity of information from health care professionals, including: Early and clear education about the distinction between brain death and coma Advance notification about testing and test-based time requirements Provide more support after difficult decisions (e.g., decisions about the withdrawal of life support and organ donation). Provide more support at critical transitions (e.g., during and after the withdrawal of life support, after a donation attempt is unsuccessful and when the body is taken to the operating room), so that the family is not left alone. Offer the family an opportunity to walk with the body to the operating room door and let them know of any hospital-based recognition rituals (e.g., moments of silence before surgery).
Theme 2: connection to recipient(s)
Awareness of recipient(s) status	Routinely offer updates to family members about the status of the transplanted organs and their recipient(s). Ensure the provision of information in a manner that is easily accessible to family members.
Mutual connection	Provide the opportunity for contact with recipient(s), if both parties are mutually agreeable. Remove mandatory wait times for connection between donor families and recipient(s). Remove barriers to connecting donor families with recipient(s), when mutually agreed upon.
Planned encounters	Facilitate meetings between donor families and recipient(s), when mutually agreeable.
Theme 3: follow-up
Organ recovery update	Provide information after the donation surgery on the outcome of the surgery, what organs were recovered and, if applicable, when and why certain organs were not recovered. Identify who will provide information on the donation surgery, which could be provided by the transplant surgeon, organ tissue donation coordinator or another team member.
Early mental health checks	Offer a mental health appointment shortly after donation, as there are substantial difficulties in accessing needed mental health services for family members.
Continued connection	Increase follow-up opportunities from the organ donation organization, hospital or another organization working with bereaved people, both immediate and long term (i.e., 3 or more yr after death of the donor). Present different modalities for continued connection, which are easily accessible by family members at their own time and pace (e.g., support line or virtual connection). Include tailored follow-up, not only for the main contact person, but also for the broader family (e.g., siblings of pediatric donors). Continue to invite family members to donor ceremonies, so that they can choose to attend when they are ready.