Peer Mentorship for Congenital Heart Defects
What You Need to Know Before You Apply
What is the purpose of this trial?
Adolescents and young adults (AYA) with congenital heart disease (CHD) face psychosocial stresses as they transition to adult care. Parents of AYA with CHD also experience increased caregiver burden and psychosocial stresses. Peer support provided by a person with a similar experience has been found to improve disease self-management and psychosocial health outcomes in pediatric healthcare. However, many AYA with CHD still do not have access to formal social support resources. The aim of this study is to improve pediatric to adult transitions in healthcare by evaluating peer mentorship programs for AYA with CHD and their parents.
Established, online mentorship programs, iPeer2Peer(iP2P)/iParent2Parent, will be employed through a pilot feasibility waitlist randomized controlled trial with repeated measures across four sites. Eighty mentees (AYA and parents of AYA) will be recruited and randomized into intervention and control groups. Forty mentees in the intervention group will be matched 1:1 with 30 trained mentors (young adults and parents of AYA). AYA mentees will be matched with young adult mentors and parents of AYA will be matched with other parent mentors. These pairings will connect over 12 weeks through video calls and text messaging to provide peer support to improve self-management and psychosocial health outcomes.
Are You a Good Fit for This Trial?
This trial is for adolescents and young adults with congenital heart disease, as well as their parents. Participants should be transitioning from pediatric to adult care or supporting someone who is. Both AYA and parents must be willing to engage in online peer mentorship.Inclusion Criteria
Exclusion Criteria
What Are the Treatments Tested in This Trial?
Interventions
- Peer mentorship
Trial Overview
The study tests whether a 12-week online peer mentorship program helps young people with congenital heart disease and their parents manage the transition to adult healthcare better. Participants are randomly assigned to receive mentorship now or later.
How Is the Trial Designed?
2
Treatment groups
Experimental Treatment
Active Control
In addition to their standard medical care, mentees in the experimental group will receive mentorship and support via the iP2P/iParent2Parent program. Trained mentors will provide information and support to mentee participants to encourage participation in self-management skill-building tailored to their needs. Each mentor will work with no more than two mentees at once for the study. Efforts will be made to pair mentors and mentees who share similar characteristics (e.g., similar disease severity, symptom profile, treatment regimen experiences, caregiver role, sex/gender, geographic area of residence). To ensure safety, a member of the research team will monitor all calls and messaging conversations as well as intervene in any potential safety concerns (e.g., discussion of suicidal ideation) or inappropriate behavior (e.g. bullying).
The control group will receive standard care without the iP2P/iParent2Parent intervention. The control group will be offered the iP2P/iParent2Parent intervention after completion of all outcome measures for a period of 12 weeks with the same research team support.
Find a Clinic Near You
Who Is Running the Clinical Trial?
The Hospital for Sick Children
Lead Sponsor
Heart and Stroke Foundation of Canada
Collaborator
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