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Challenges, Preparations, and Recommendations: Family Perspectives on Pediatric Cardiac Surgery Across Childhood and
Sarah E Wawrzynski1, Erica Sood1,2, Kelsey Higgins1
1Nemours Children's Health, Wilmington, DE, USA.
Insights
Families of children aged 3-17 undergoing cardiac surgery face challenges with support, communication, and emotions. Enhancing communication and providing resources can empower families during hospitalization and recovery.
Area of Science:
- Pediatric Cardiology
- Child Psychology
- Healthcare Family Support
Background:
- Congenital heart disease (CHD) is a common global birth defect requiring surgical intervention.
- While infant cardiac surgery stress is known, family experiences with older children (3-17 years) are less understood.
Purpose of the Study:
- To explore the experiences of families with children aged 3-17 hospitalized for cardiac surgery.
- To identify challenges, preparations, and recommendations for supporting these families.
Main Methods:
- Qualitative content and thematic analysis of semi-structured interviews.
- Participants included 32 parents and 14 patients (children aged 3-17).
Main Results:
- Seven themes emerged across challenges (support disruption, communication issues, emotional uncertainty), preparations (emotional and logistical planning), and recommendations (improved communication, resources, education).
- Key challenges involved disruptions in social support, unexpected events, and emotional distress.
Conclusions:
- Families require targeted interventions to address challenges related to communication, support systems, and emotional well-being.
- Empowering families through resources and education is crucial for managing hospitalization and recovery for children with CHD.
Abstract:
Congenital heart disease (CHD), the most common birth defect globally, often requires hospitalization for cardiac surgery. While the stress of infant surgery is well-documented, less is known about the experiences of families with older children. We explored the experiences of families of children aged 3-17 hospitalized for cardiac surgery. Semi-structured interviews were conducted. Data were analyzed using qualitative content and thematic analysis. Thirty-two parents (30 mothers and 2 fathers) and 14 patients (10 males and 4 females) participated. Seven themes emerged across three domains: (a) Challenges: disruptions in family and social support, unexpected events and inadequate communication, and uncertainty and strong emotions; (b) Preparations: emotionally preparing yourself, your children and your family, and planning for hospitalization and surgical recovery; and (c) Recommendations: enhance communication and connection for support, and provide resources and education for empowerment. Findings highlight opportunities for targeted interventions to support families across child development.
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