Barbazi Neda, Shin Ji Youn, Hiremath Gurumurthy, Lauff Carlye Anne
Department of Design Innovation, College of Design, University of Minnesota, Twin Cities, Minneapolis, MN, United States.
Division of Pediatric Cardiology, Department of Pediatrics, Medical School, University of Minnesota, Twin Cities, Minneapolis, MN, United States.
JMIR Pediatr Parent. 2025 Jan 24;8:e64814. doi: 10.2196/64814.
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.
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.
Comprehensive searches were conducted in February 2024 using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) 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, and ERIC). The search covered health care, 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.
The review identified 11 studies: 9 randomized controlled trials and 2 observational studies. These used 6 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 postassessments, and all 11 studies used questionnaires, 8 of which incorporated qualitative feedback. The target participants for these interventions were children aged 13 years and older (n=3), parents (n=2), and children of various ages and their parents (n=6). Outcomes included improved children's health literacy, reduced parental burden, and increased health care provider efficiency.
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 younger than 13 years of age. It is essential to develop engaging, age-appropriate interventions that actively involve children with CHD in their health care journey. Effective health educational interventions are crucial in empowering these young patients and improving their long-term health outcomes.
先天性心脏病(CHD)是最常见的出生缺陷,在美国每年有40000例新生儿受其影响。尽管医疗护理取得了进展,但CHD通常是一种慢性病,需要持续的管理和教育。有效的护理管理取决于儿童对自身病情的理解。这凸显了有针对性的健康教育干预措施的必要性,以提高CHD患儿的健康素养。
本范围综述旨在梳理和探索现有的针对CHD患儿的健康教育干预措施。该综述确定了干预措施的类型、目标人群、实施方式以及评估结果。目标是整合零散的研究,找出差距,并确定未来的研究议程。
2024年2月,我们使用PRISMA-ScR(系统评价和Meta分析扩展的范围综述首选报告项目)框架在多个数据库中进行了全面检索:美国心理学会心理学文摘数据库(APA PsycINFO)、通过Ovid检索的医学主题词表(MedlinePlus)、科学引文索引(Web of Science)、美国计算机协会数字图书馆(ACM Digital Library)、Scopus以及EBSCOhost(护理学与健康领域数据库完整版(CINAHL Complete)及其终极版(CINAHL Ultimate)、健康源护理学/学术版数据库(Health Source: Nursing/Academic Edition)和教育资源信息中心数据库(ERIC))。此次检索涵盖了医疗保健、设计和人机交互学科,以体现CHD健康教育干预措施的跨学科性质。由于相关研究数量有限,未设定预定义的时间限制。符合条件的研究需为英文,发表在同行评审期刊上,并聚焦于有关CHD患儿教育性健康干预的原始数据。我们使用主题分析法提取和综合数据。
该综述共纳入11项研究:9项随机对照试验和2项观察性研究。这些研究采用了6种教育策略:针对特定患者的3D模型(3项)、习惯养成干预(2项)、基于赋权的健康教育项目(2项)、康复干预(2项)、网络平台(1项)以及录像演示(1项)。干预措施的时长从简短的门诊课程到为期1.5年的项目不等,随访时间从无到24个月。研究旨在改善CHD患儿及其家庭的应对能力、自我管理能力和知识水平。最常用的评估方法是用于前后评估的独立样本t检验(4项),所有11项研究均使用了问卷,其中8项纳入了定性反馈。这些干预措施的目标参与者为13岁及以上的儿童(3项)、家长(2项)以及不同年龄段的儿童及其家长(6项)。结果包括提高了儿童的健康素养、减轻了家长的负担以及提高了医疗服务提供者的效率。
本综述强调了为CHD患儿提供量身定制的教育干预措施的迫切需求。当前的研究主要集中在青少年,且严重依赖家长的参与,可能忽视了13岁以下年幼儿童的特殊需求。开发引人入胜、适合年龄的干预措施至关重要,这些措施应积极让CHD患儿参与到他们的医疗保健过程中。有效的健康教育干预措施对于增强这些年轻患者的能力以及改善他们的长期健康结果至关重要。