Donor families have complex emotional, psychological and informational needs both during and after their donation journey.

During donation requiring clear, compassionate communication, emotional support, and time to process the gravity of their loved one’s death or impending death. Very often families may be grappling with their grief: organ donation decision making may be influenced by a variety of factors such as the deceased's known or assumed donation decisions, cultural or religious beliefs, trust in the healthcare system, and the quality of interaction with the health care professionals.
After donation, some families may need continued support, and we know that very often donation can offer comfort and meaning in the weeks and months that follow.
To help us understand and meet the needs of families a survey is routinely sent at various time intervals post organ donation, but we have continued to receive a low response rate.  Therefore, a focus group with NHS Blood and Transplants Donor Family Advisory group was held to aid understanding. This was followed up by sending a very short survey to all families via email.
Whilst it is not possible to determine the response rate as we requested all families and colleagues to forward the survey to any family who may be willing to complete, a large response was received, 367 in total.
In summary, our findings have revealed factors that influence donation decisions include- Compassionate staff, comfort in donation: families found solace in knowing their loved one’s donation helped others. Been in a supportive environment: access to private rooms, clear communication, and emotional support were noted as significant contributors to a positive experience. Support of the clinical ICU team was also cited as important. Meeting basic Individualised needs of families’ paramount.
Factors that have not influenced positively include disappointment over not hearing from organ recipients, timing of communication on the ICU which added to their emotional burden.
The emotional journey of donor families was profound and multifaceted many found comfort in knowing their loved one’s legacy lives on through donation, others struggled with the suddenness of loss, the clinical nature of the process, or the lack of closure.
A strong desire for acknowledgment and connection was evident. Legacy of their loved one’s donation, enduring pride and remembrance was significant.
Families offered thoughtful recommendations to enhance the donation experience, which included.
Increase awareness about the realities and importance of organ donation.
Timing and communication: some felt the donation conversation was raised too soon or too late, adding to their emotional burden.
Limited aftercare or bereavement support.
The complexity and emotional weight of the process, especially during sudden deaths, left some families feeling overwhelmed. Various suggestions for Improvement were made and will be taken forward.