JMIR Publications

ABSTRACT

Background:

Congenital heart disease (CHD) is the most common birth defect, affecting 40,000 births annually in the United States. Despite advances in medical care, CHD is often a chronic condition requiring continuous management and education. Effective care management depends on children's understanding of their condition. This highlights the need for targeted health educational interventions to enhance health literacy among children with CHD.

Objective:

This scoping review aims to map and explore existing health educational interventions for children with CHD. The review identifies the types of interventions, target populations, delivery methods, and assessed outcomes. The goal is to consolidate fragmented research, identify gaps, and establish future research agendas.

Methods:

Comprehensive searches were conducted in February 2024 using the PRISMA-ScR framework across multiple databases: APA PsycINFO, MedlinePlus via Ovid, Web of Science, ACM Digital Library, Scopus, and EBSCOhost (CINAHL Complete, CINAHL Ultimate, Health Source: Nursing/Academic Edition, ERIC). The search covered healthcare, design, and human-computer interaction disciplines to capture the interdisciplinary nature of CHD health educational interventions. There was no predefined time limit due to the limited number of relevant studies. Eligible studies were in English, published in peer-reviewed journals, and focused on primary data about educational health interventions for children with CHD. We extracted and synthesized data using thematic analysis.

Results:

The review identified 11 studies: 9 randomized controlled trials (RCTs) and 2 observational studies. These used six educational strategies: 3D Patient-Specific Models (n=3), Habit Formation Interventions (n=2), Empowerment-Based Health Education Programs (n=2), Rehabilitation Interventions (n=2), Web-Based Portals (n=1), and Videotape Presentations (n=1). Interventions ranged from brief outpatient sessions to 1.5-year programs, with follow-up from none to 24 months. Studies aimed to improve coping, self-management, and knowledge for children with CHD and their families. The most frequently used assessment method was the Independent Samples t-test (n=4) for pre-and post-assessments, and all 11 studies used questionnaires, 8 of which incorporated qualitative feedback. The target participants for these interventions were children aged 13 and above (n=3), parents (n=2), and both children of various ages and their parents (n=6). Outcomes included improved children's health literacy, reduced parental burden, and increased healthcare provider efficiency.

Conclusions:

This review underscores the critical need for tailored educational interventions for children with CHD. Current research mainly focuses on adolescents and relies heavily on parental involvement, possibly overlooking the specific needs of younger children under the age of 13. It is essential to develop interactive, age-appropriate interventions that actively engage children with CHD in their healthcare journey. Effective health educational interventions are crucial in empowering these young patients and improving their long-term health outcomes.