Alice Virani – Exploring ethical considerations in relation to direct contact between pediatric transplant recipient and donor families
BC Transplant has recently implemented a direct contact policy between transplant donor families and recipients in the adult population. The move to allow direct contact follows years of facilitated anonymous correspondence in the adult population and was prompted by self-advocacy on the part of donor families and recipients. Concerns related to privacy, boundary setting, consent and the autonomy of individuals, beneficence and non-maleficence, as well as legislative parameters were considered in the development of this policy.
While these ethical and other considerations have been explored in the adult context, there is very limited discussion of this topic in the pediatric context. Research in this area is therefore necessary as the situation in pediatrics is complicated due to pediatric recipients’ developing autonomy and capacity to consent, as well as other pediatric specific concerns. To examine this issue further, this research will investigate the unique considerations, risks, and benefits of direct contact in the pediatric context.
Through a two-step exploratory interview process, starting with those who have graduated into the adult program and then transitioning to those still in the pediatric program, we will examine the views of recipients, their families, and of donor families in relation to pediatric direct contact. Interviews will explore whether there are perceived differences between severable contact (eg. facilitated anonymous contact through BCT) and more final direct contact (eg. the exchange of personal information). These interviews will also analyze what supports pediatric transplant participants may want moving forward.
Kathryn Armstrong – VEXT: An 8-week Virtual Exercise and Texting Program for Pediatric Solid Organ Transplant Patients
Being active is important for the health of children. Technology is now changing how children can be active. Children who have had a solid organ transplant have low activity levels. This is especially true for those with disabilities. Finding ways to increase activity levels in all children with a solid organ transplant is vital for their long-term health and development.
To date, exercise programs have been tried both in hospital and at home. Hospital-based programs are expensive to run and only allow access for local patients. Home-based programs are cheaper to run, more children are able to join in, but interest in these programs is varied.
Using our expertise in exercise and technology, we have developed a new online program that will be live streamed to provide 1-on-1 coaching to participants. Exercise classes can be done at home, are designed with input from participants, and are specific to their needs. This project builds on our previous work that used text messaging for solid organ transplant patients to communicate with their health care team. We will use the same platform to deliver the exercise program.