BC Transplant, in partnership with BC Children’s Hospital, have received a Venture Grant from the Transplant Research Foundation of BC (TRFBC) to engage in research with pediatric transplant recipients that explores the opportunity for direct contact with their donor families.
The research project titled "Exploring ethical considerations in relation to direct contact between pediatric transplant recipients and donor families" will begin recruiting participants by mail in the early spring.
Jordy Hermiston is the Facilitator of BC Transplant's Donor Family Services program, a role that has included supporting adult transplant recipients and their donor families to establish direct contact since the new policy was introduced in 2019.
What is direct contact in BC? Tell us more about the success you've had since introducing this policy in 2019.
For many years BC Transplant has facilitated anonymous correspondence between transplant recipients and donor families. In 2019, BC Transplant introduced a policy and process to support consenting transplant recipients and donor families to be in direct contact with each other. This could be through sharing personal email, mailing address, telephone number, or arranging an in-person meeting.
To date, BC Transplant has supported 10 transplant recipients and donor families to connect with each other directly. We've had some real success facilitating these connections through a process that values personal autonomy, an understanding of risks and benefits, informed consent, and emotional support. This relationship is one of great emotional weight and complexity. Dedicated support from BC Transplant has been important to make participants feel safe and comfortable during this huge leap forward in the relationship.
(Daryl, Carrie and Marie meet for for the first time in early 2020 after 17 years of hand- written letters)
Why is it a good time to explore adding pediatric recipients to the direct contact program?
We have a strong foundation established in the adult program. We have a good idea of the level of support that has led adult transplant recipients and donor families to feel more comfortable and more confident as they make this change in their relationship.
Our goal has always been to support transplant recipients and donor families in a way that is responsive to their unique needs. Our assumption is that pediatric transplant recipients are the experts in their own experience and they may have some different ideas than adult transplant recipients about what they need and want.
Within the pediatric transplant recipient population we want to avoid painting everyone with the same brush. I wouldn't expect a 10 year old and a 15 year old to understand direct contact in the same way.
Listening to the perspectives of children, youth and their families on direct contact is crucial for developing policy and resources that meet the support needs of the people involved.
What is the purpose of this research project?
This research has a broad goal of examining ethical questions around the relationship between pediatric transplant recipients, their families, and donor families. Is direct contact between these folks ethically permissible?
On a more practical level, we need to ask children, youth, and their families about their wants, needs, and concerns with direct contact. We need to respect what they tell us through policy and resources.
What will the two-step exploratory process look like?
In the first phase we'll be talking with pediatric transplant recipients who received their transplant as children or youth but are now young adults.
In the second phase we'll be talking with pediatric transplant recipients who are currently receiving pediatric services. We will also be talking with the parents or guardians of current pediatric transplant recipients.
When will you expect results?
The scope of this research is as a one-year project. We expect to have collected data by the early summer and then begin data analysis. Our goal is to be ready to report on the results of the study in early 2022.
