Parent-to-parent recommendations for coping with congenital heart disease: a mixed-methods study

Objectives To systematically analyse parent-to-parent guidance for those receiving a diagnosis of congenital heart disease (CHD) to inform clinician counselling and advance development of support programmes. Design We asked parents of children who had CHD requiring surgery or catheterisation in infancy about their recommendations for parents receiving a new diagnosis. We analysed responses using mixed methods. Setting Stand-alone children’s hospital. Patients We interviewed 100 parents of children with CHD with a 96% participation rate. Main outcome measures Qualitative themes for primary recommendations and quantitative analysis of correlation between themes and social/clinical factors. Results Parents recommended balancing tactics for taking control with strategies for adapting to uncertainty. Parents recognised the importance of acknowledging challenges (noted by 24%) but focused primarily on imperatives to move forward: (1) empower yourself with information and support (50%), (2) take care of yourself (23%), (3) trust your medical team, your child and yourself (31%) and (4) maintain a positive outlook on improvement and believe that normalcy is possible (42%). Recommendations varied little with social or clinical factors. Conclusions Recommendations from parents provide direct advice for others facing new diagnoses and outline actionable steps for clinicians hoping to support those receiving a CHD diagnosis. Clinicians may acknowledge challenges, help parents reflect on what they can and cannot control and empower parents by providing comprehensible information and connecting them to other parents.