Research Award Recipients

Addressing the mental health needs of parents of pediatric kidney transplant recipients with the iParent2Parent peer support program

Lay Abstract

Addressing the mental health needs of parents of pediatric kidney transplant recipients with the iParent2Parent peer support program

Background: Caring for a child who received a kidney transplant can lead to increased and enduring levels of distress, anxiety and depression for parents. These mental health concerns, along with increased feelings of isolation and decreased access to social support, have intensified during the COVID-19 pandemic. Psychosocial interventions, such as evidence-based peer support, improve parental mental health by fostering a sense of self-worth and reducing feelings of loneliness, which ultimately positively impacts their caregiving capacity and child’s well-being.

Purpose: The iParent2Parent (iP2P) program is a new, innovative virtual mentorship program that will connect parents one-to-one with other parents of pediatric kidney transplant recipients who are trained to offer vital peer support and mentorship. The program is informed by the established iPeer2Peer program for teens, which has improved coping and self-management skills in chronic illness patient populations. This proposed study to adapt the iPeer2Peer program to the iP2P program for parents is critical, as parents have emotional, appraisal and informational support needs that are distinct from teens.

Method: This research aims to (1) determine whether the iP2P program is feasible (primary), and (2) explore the impact of the iP2P program on psychosocial outcomes (secondary), using a mixed methods pilot feasibility waitlist randomized controlled trial (RCT) design. Parents of children who received a kidney transplant at The Hospital for Sick Children will be invited to participate as peer mentors and mentees (randomized into the iP2P or control group).

Anticipated Outcomes: Virtual peer support for parents of pediatric kidney transplant recipients is a promising eHealth solution to the current mental health and social support gaps in clinical care. The iP2P program can decrease feelings of isolation and loneliness, improve parental mental health and have a long-term positive impact on patient health and quality of life. This innovative research will increase our understanding of one-to-one peer support and leverage eHealth technologies to improve the access to and acceptability of parent peer support interventions. The iP2P program may be a powerful, strategic and timely intervention for parents of pediatric kidney transplant recipients that optimizes the health, development and well-being of pediatric kidney transplant recipients by improving the mental and social health of their parents.

Patient Engagement: This intervention engages parents meaningfully throughout the research process, and focuses on explicit and overwhelming requests from parents for a peer support program. Parents expressed that the iP2P program could “offer hope to other parents just starting this journey”. Shared decision-making amongst our team, which includes parent partners, in identifying and setting research priorities, increases the quality of this proposed research as well as its relevance and value for patients and their families. Conducting research that engages parents as partners, focuses on parent-identified priorities and improves parent and patient outcomes is vital and intrinsic for this research team.

Relevance to Patients/Community: Despite the recognized value of peer support for parents in pediatric healthcare, it is currently not part of routine clinical care in pediatric kidney transplantation. This is likely due to the competing demands and complexity of clinical care for this population. Families face numerous barriers to accessing in-person support, as pediatric kidney transplantation represents a small and geographically diverse population and the implementation of in-person psychosocial group interventions is often not feasible. Personalized and tailored interventions, such as the iP2P program, aimed at reducing psychological distress and stress symptoms experienced by parents of children with specific chronic illnesses are desperately needed.

Conclusion: Given the rapid health system reform necessitated by the pandemic, the time to adopt virtual approaches is now. There is a crucial need to pilot and evaluate the iP2P program to address persistent poor mental health outcomes that would otherwise endure without this important research