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

Area of Science:

• Pediatric Cardiology
• Parental Support Systems
• Health Psychology

Background:

• Congenital heart disease (CHD) presents significant challenges for families.
• Effective parental support is crucial for navigating a CHD diagnosis.
• Clinician counseling can be enhanced by understanding parental experiences.

Purpose of the Study:

• To systematically analyze parent-to-parent guidance for new congenital heart disease (CHD) diagnoses.
• To inform clinician counseling strategies for families with CHD.
• To guide the development of enhanced support programs for CHD patients and families.

Main Methods:

• Interviews with 100 parents of children with CHD requiring surgery or catheterization.
• Mixed-methods analysis of parental recommendations.
• Qualitative thematic analysis and quantitative correlation with social/clinical factors.

Main Results:

• Key parental recommendations include empowering oneself with information and support (50%), self-care (23%), trusting the medical team and child (31%), and maintaining positivity (42%).
• Parents advised balancing control with adapting to uncertainty.
• Recommendations showed minimal variation across social or clinical factors.

Conclusions:

• Parental recommendations offer practical advice for families newly diagnosed with CHD.
• These insights provide actionable steps for clinicians to support families.
• Clinicians should empower parents with information, facilitate reflection on control, and foster connections with other parents.