Engaging Caregivers in Patient-Oriented Research: Mindfulness-Based Stress Reduction Retreat for Mothers of Pediatric Heart Transplant Recipients
This research is driven by patient- and family-identified needs to support the quality of life and wellbeing of mothers of pediatric heart transplant recipients. It leverages Mindfulness-Based Stress Reduction (MBSR), delivered at an ecological retreat, as an innovative intervention to meaningfully address the complexities of caregiving and caregiver burden. A mixed-methods design will be employed to examine potential changes in maternal coping styles, distress tolerance, quality of life and perceived social support following the intervention – a MBSR retreat. The retreat will be comprised of mindfulness exercises such as circle sharing, deep relaxation, yoga and walking meditation. Guided by the experiential expertise of our patient partner, Joanna Mitchell, this research places a strong emphasis on patient- and family-centred care, targeting the intersection of maternal wellbeing and child health outcomes within pediatric transplantation.
Joanna Mitchell’s bio
Joanna Mitchell is the mother to 16-year-old Ryley who received a heart transplant at 7 months of age. Soon after Ryley’s transplant, the Mitchell Family became involved as volunteers with the Trillium Gift of Life Network to encourage others to consider organ donation by sharing Ryley’s story. Joanna and Ryley were presented with the TGLN Board of Directors Champion Award in 2017 for their contribution to raising awareness for organ donation.
When Ryley was 5, she participated in her first Canadian Transplant Games and the family became involved with the Canadian Transplant Association. With the CTA, Joanna has helped to organize various events to promote both organ donation and healthy active living after transplantation. Joanna has also worked as a parent liaison to bring a pediatric and family perspective to the transplant games. She encourages connections of transplant families by facilitating various social media groups and informal mentorship.
Joanna became a patient caregiver partner with Canadian Donation and Transplantation Research Program more recently with a focus on projects related to pediatrics and the mental health of not only the transplant patient but the family as a whole.
Samantha J. Anthony’s bio
Dr. Samantha J. Anthony is a Health Clinician Scientist in the Child Health Evaluative Sciences Program of the Research Institute at the Hospital for Sick Children. She has nearly 20 years of experience in the SickKids Transplant and Regenerative Medicine Centre as a Social Worker and is an Assistant Professor in the Factor-Inwentash Faculty of Social Work at the University of Toronto. Dr. Anthony is also an Investigator with the Canadian Donation and Transplantation Research Program.
Dr. Anthony has been recognized for her dedication to clinical practice and the application of research for improved patient outcomes. Her program of research centres on establishing an evidence-based foundation for successful psychosocial adaptation and enhanced quality of life for individuals with chronic disease, with a specific focus on pediatric solid-organ transplantation. Dr. Anthony has received national academic scholarships and has obtained competitive grants and research awards, including funding from Health Canada, CIHR, Canadian Child Health Clinician Scientist Program, Enduring Hearts, Kidney Foundation of Canada and The International Society for Heart and Lung Transplantation.