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Published on: July 18, 2014
Parent-to-parent recommendations for coping with congenital heart disease: a mixed-methods study
Katharine Press Callahan1,2, Rebecca Dorner3, Magdalena Jaworski4
1The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA callahankp@chop.edu.
Insights
Parents offer guidance for congenital heart disease (CHD) diagnoses, emphasizing empowerment through information, self-care, trust, and a positive outlook. These insights can improve clinician support and patient programs.
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.
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.
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