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.