Implementation of peer support for families of children with CHD: leveraging the unique perspectives of leaders within patient/family organisations

BACKGROUND: Caregivers of children with CHD frequently experience psychological distress related to the chronic and unpredictable demands of their child's diagnosis. Peer support can mitigate distress and promote resilience, but few studies have explored factors affecting its implementation or the experiences of those who provide or facilitate peer support. This study aimed to identify barriers, facilitators, and recommendations for optimising peer support from the unique perspectives of leaders of patient/family organisations within the CHD community. METHODS: Using online crowdsourcing methods, qualitative data on the implementation of peer support was collected from 16 leaders representing five patient/family organisations. Crowdsourced data were coded and analysed using thematic analysis, with themes categorised as barriers, facilitators, and recommendations. RESULTS: Four overarching themes were constructed: 1) Training and Expertise, highlighting the value of lived experience alongside the need for structured training in mental health and bereavement; 2) Peer Mentor Wellbeing, including burnout, secondary traumatic stress, and the importance of clear role boundaries and expectations; 3) Partnerships and Collaboration, emphasising relationships with clinical care centres; and (4) Support for all Families and Family Members, including fathers, siblings, and bereaved families. DISCUSSION: The results provide insight into the implementation of peer support, with recommendations for next steps including hospital-community partnerships to improve access and intentional programme design to protect peer mentor wellbeing. Further understanding of caregiver and peer mentor needs is critical for elucidating ways to develop and implement optimal models of peer support.