In exploring educational interventions for children with CHD, the first emergent theme is “types of educational interventions,” with subthemes of “educational strategies and objectives” and “intervention duration.” Educational strategies and objectives refer to the strategies used to support children with CHD and how these interventions address specific objectives, like disease education. Duration presents the timing and duration of these interventions, whether they are 1-time sessions, have follow-ups, or are repeated over time. This theme and its subthemes address KQ1: What types of educational interventions are available for children with CHD?

Across the reviewed studies, 6 educational strategies were used to support children with CHD and their families (Figure 5). These strategies include the use of 3D patient-specific models, habit formation interventions, empowerment-based health education programs, rehabilitation interventions, a web-based portal, and videotape presentations.

3D patient-specific models are anatomical models created from medical imaging data like computed tomography or magnetic resonance imaging scans, providing a detailed representation of a child’s heart. They help visualize and understand complex cardiac structures and treatment plans. Three studies used these models to educate about cardiac anatomy and treatment plans. These models were accompanied by engaging discussions and supplemented with diagrams or images, clarifying complex anatomical structures and treatment options. One of these studies specifically targeted adolescent patients, combining 3D models with tele-education. These interventions offered a visual understanding of the heart’s structure and treatment procedures, including cardiac catheterization [28,33,37]. Habit formation interventions aim to instill healthy habits in children with CHD through structured programs. These interventions often involve multiple components, such as printed materials, toolkits, websites, and counseling sessions, to encourage and support the development of these beneficial habits. Two studies focused on these interventions. One aimed at promoting physical activity through a multifaceted intervention, including printed materials, a physical activity toolkit, and a website. The other focused on oral health promotion through counseling, distributing oral hygiene products, and providing written information [30,32].

Empowerment-based health education programs empower parents and family members by enhancing their knowledge, caregiving behaviors, and self-efficacy in managing a child’s CHD. They typically include face-to-face education sessions, workshops, and follow-up support such as telephone calls, helping caregivers feel more confident and competent in their roles. Two studies implemented these programs to improve the caregiving knowledge, caring behaviors, and self-efficacy of parents or family members caring for children with CHD. One offered face-to-face education sessions and follow-up telephone calls, while the other conducted workshops [34,36]. Rehabilitation interventions aim to enhance the physical and psychological well-being of children and adolescents with CHD. These include structured cardiac rehabilitation programs (center or home-based) and eHealth interventions that use technology to improve physical fitness, activity levels, and overall health-related quality of life over an extended period. Two studies explored these interventions. One evaluated the impact of a combined center- and home-based cardiac rehabilitation program on the quality of life of adolescents and young adults with CHD. The other assessed the effects of a 52-week eHealth intervention on physical fitness and health-related quality of life in adolescents with CHD [27,31].

Web-based portals are digital platforms that enhance patient education, engagement, and communication. They provide accessible information about CHD, treatment options, and self-management strategies. These portals also facilitate communication between patients, families, and health care providers, ensuring continuous support and information exchange. Only 1 study assessed the effectiveness of these interventions in improving adolescent patient knowledge and involvement and supporting physicians in communicating with their patients [29]. Videotape presentations prepare children and their families for medical procedures and hospital stays. The videos use engaging, playful, and child-friendly formats, such as fictional or animated characters and stories, to simplify complex medical concepts and make them less intimidating. In 1982, a study evaluated the impact of a 16-minute videotape presentation on children’s knowledge and coping skills during cardiac catheterization. The study featured a fictional lion who presented the videotape to guide hospitalized children through the events, sights, sounds, and sensations associated with the cardiac catheterization procedure [35].

Of the 11 studies reviewed, 7 offered disease education using the following methods: 3D patient-specific models, empowerment-based health education programs, web-based portals, and videotape presentations [28,29,33-37]. Four studies focused on improving self-management skills using 2 strategies: habit formation interventions and rehabilitation interventions [27,30-32]. Five studies aimed to teach coping strategies using 3 approaches: empowerment-based health education programs, rehabilitation interventions, and videotape presentations [27,31,34-36] (Figure 5). It is important to note that some studies addressed more than 1 aspect, which is why the numbers overlap across different categories.

The duration of educational interventions varied across the studies, as shown in Figure 5. Some interventions were brief sessions within routine visits, while others lasted up to 1.5 years. Follow-ups also differed. Some interventions had no follow-ups, while others included assessments at intervals of 1 month, 6 months, 1 year, or 2 years.

In total, 2 of 3 studies using 3D patient-specific models were integrated into routine outpatient visits without a specified duration. Another study used digital 3D heart models during a 30-minute tele-education session instead of in person. After the session, patients received a USB drive containing a video of their 3D heart and digital files for potential self-learning, with no follow-up mentioned [28,33,37]. In contrast, habit formation interventions, such as the oral health promotion intervention and a multifaceted physical activity intervention, spanned extended periods. Oral health promotion intervention lasted 1.5 years with sessions at baseline, 6, 12, and 18 months, followed by a 24-month follow-up. The multifaceted physical activity intervention spanned 6 months, including a 3-day workshop and monthly conference calls, with a follow-up period of 6 months [30,32].

As part of the empowerment-based health education program, 1 study included a 40-minute face-to-face education session with individualized instructions on the second day after surgery. There were also 2 monthly 10-minute telephone calls after the discharge to discuss the child’s care and modify action plans. Subsequent assessments were conducted at 1 month and 3 months after surgery. Another study, the Congenital Heart Disease Intervention Program-Family intervention, involved a 1-day workshop and a 6-month follow-up session and assessment [34,36]. Using the rehabilitation interventions strategy, 1 study implemented the QUALI-REHAB cardiac rehabilitation program, consisting of a 12-week program with 5 days of hospitalization at the rehabilitation center and home-based training. Recall sessions were held every 3 weeks at the center, with a final evaluation at the end of week 12 and a 12-month follow-up period for outcome measurements. Another program, the Paediatric Rehabilitation for Vanguard in Lifeskills (PReVaiL), lasted 52 weeks, with a follow-up assessment conducted after 1 year. Patients received group-based health education sessions lasting 45 minutes and individual counseling sessions lasting 15 minutes [27,31].

Additionally, 1 study introduced a web-based portal during outpatient visits that could be used anytime, with follow-up assessments conducted 1 month after the visit [29]. Finally, 1 study conducted a 16-minute videotape presentation session 1 day before procedures, with a follow-up undertaken 4 to 6 weeks after discharge from the hospital [35]. In total, 3 studies had a 1-month follow-up timeline, while 2 had 6 months and 2 had 1 year.

The second emergent theme is “study design and stakeholder involvement,” with subthemes of “study design” and “target age groups and stakeholder involvement.” Study design focuses on the methodologies used in the studies and the size of participant samples. Target age groups and stakeholder involvement examines the target population’s age range and impact on stakeholder roles. It analyzes whether parents, caregivers, or health care providers are involved in delivering or evaluating the intervention and identifies the target population. Together, these address KQ2: What are the study designs, target populations, and the roles of various stakeholders in these educational interventions?

In total, 8 of the 11 studies used an RCT design, while 1 study included a pilot phase followed by an RCT [27-32,34-36]. The sample sizes in these RCTs ranged from 53 to 250, with a mean of 126.11 (SD 43.95). The intervention group size ranged from 31 to 125, with a mean of 63 (SD 25.20), and the control group size ranged from 22 to 125, with a mean of 62.78 (SD 24.60).

These RCTs varied in their approach, including prospective randomized clinical trials; questionnaire-based feasibility and acceptability studies; prospective clinical trials; single-center, single-blinded, randomized controlled trials; prospective, multicenter, randomized, controlled, parallel-arm studies; cluster randomized controlled trials; and multicenter stepped-wedge implementation trials. Additionally, 2 studies adopted observational study designs [33,37]. The observational studies explored a single-center cross-sectional study and a prospective pre-post study, with sample sizes of 46 and 22, respectively.

Reviewed studies used diverse settings for their interventions. Three studies implemented interventions across home settings, cardiac clinics, and digital or telehealth platforms [29,32,33]. Another 3 studies implemented interventions at home and children’s hospitals [30,34,36]. One study used interventions in home settings, cardiac clinics, and rehabilitation centers [27]. Additionally, 1 study used home settings, rehabilitation centers, and digital or telehealth platforms [31]. In total, 2 studies were conducted at cardiac centers [28,37], while 1 was conducted exclusively at a hospital [35]. The study designs and settings are summarized in Figure 6.

In the reviewed studies focusing on educational interventions for children with CHD, stakeholder involvement varied depending on the participants’ age range. This variation influenced the roles played by different stakeholders, such as parents or caregivers and health care providers, within these interventions.

The primary emphasis of this review was on educational interventions tailored for children with CHD, although not all studies exclusively targeted children as participants. Several studies also included parents of children with CHD within specific age groups to enhance the overall health outcomes for these children. Among the 11 studies examined, 2 exclusively focused on parents [28,34], while 6 involved both parents and children [29,30,32,35-37]. Additionally, 3 studies specifically targeted children aged 13 to 18, 13 to 25, and 13 to 16 years [27,31,33]. The youngest participants in the studies targeting just children with CHD were aged 13 years.

In a study conducted by Uzark et al [35], the researchers assessed the impact of a videotape presentation on the knowledge and coping of children with CHD aged 3 to 12 years during hospitalization for cardiac catheterization. The study also targeted the parents of these younger children to improve outcomes for both children and parents. Another study by Biglino et al [28] investigated the effectiveness of 3D patient-specific models of CHD as a communication tool during cardiology consultations for pediatric patients aged 6 to 18 years and their parents. The age range of parents included in this study was 35 to 51 years.

Lemire et al [32] studied children with CHD aged 5 to 17 years and their parents. The intervention aimed to assess whether providing resources and protocols would enable clinicians to counsel about physical activity during every pediatric cardiology appointment. In another study, Karikoski et al [30] targeted children with CHD up to 24 months old and their parents to investigate the effectiveness of repeated counseling provided by a dental hygienist in improving oral health behavior during the first 1000 days of life. They aimed to improve parental hygiene habits with the expectation that it would also enhance young children’s hygiene habits.

Ni et al [34] evaluated the effectiveness of an empowerment-based health education program for parents caring for children aged 1 month to 5 years who had undergone corrective surgery for CHD. Their goal was to improve the health outcomes for the children and not the parents. Van der Mheen et al [36] assessed the effects of a program on parental mental health and the psychosocial well-being of children with CHD aged 4 to 7 years. This program also involved siblings to help normalize the child’s CHD position within their family dynamic.

In all 11 studies, key stakeholders—children, parents or caregivers, and health care providers—actively participated in the interventions. In total, 8 studies involved all these stakeholders [27,29-32,35-37], while 2 involved parents and health care providers [28,34], and 1 included children and health care providers [33]. The age ranges in these studies varied widely, from birth to 25 years. However, the age range for parents was not consistently provided across the studies. Only 1 study specified the age range for parents as 35 to 51 years, with children aged 6 to 18 years [28]. Figure 6 provides details of population specification, including stakeholder involvement, age ranges, and sample sizes across the reviewed studies.

Theme 3, “evaluation methods and outcome objectives,” includes 2 subthemes: “assessed outcome” and “data collection and analysis techniques.” Assessed outcomes discusses the specific objectives and goals the interventions aimed to achieve. Data collection and analysis techniques examines the methods and approaches used to gather and analyze data. Together, these subthemes address KQ3: What outcomes are assessed, and what approaches are used for assessment?

The outcomes assessed represent the specific objectives the reviewed studies measure to evaluate the effectiveness of their interventions. This scoping review categorized assessed outcomes into three main categories: (1) improved children’s HL and outcome, (2) reduced parental burden, and (3) improved efficiency of health care providers. Figure 7 summarizes these categories, demonstrating the varied impacts of interventions on children with CHD, their parents or caregivers, and health care providers.

Improving children’s HL involves various suboutcomes. These include understanding CHD, self-management and habits, coping and quality of life, empowerment, health care use, and health outcomes. Two studies evaluated the understanding of CHD, and both reported increased knowledge following the intervention [33,35]. Meanwhile, 3 other studies are still under investigation [29,32,36]. Three studies were conducted on self-management and habits. In total, 2 showed positive impacts [30,35], while 1 showed no change or impact [31]. Furthermore, 1 study found a relationship between the intervention and self-management and habits, indicating a need for further investigation in future studies [33]. Ongoing research is being conducted in 3 more studies under investigation [27,32,36].

Two other studies assessed coping and quality of life, one showing no change after intervention [31], and one showing improvement [35], while ongoing investigations continue in 4 studies [27,29,32,36]. Regarding empowerment, 2 studies showed improvement [33,35], with ongoing investigations in 2 more studies [29,36]. Health care use was evaluated once, with no observed difference [30]. Health outcomes were assessed in 2 studies, one indicating improvement [34] and the other showing no change [31]. Additionally, 2 studies without assessments reported a relationship between health outcomes and the intervention [30,35], while ongoing investigations are underway in 2 studies [27,36].

Reducing parental burden focused on various suboutcomes, including educational, emotional, caregiving, and financial support. In total, 4 studies assessed educational support, with 3 showing improvement [30,34,37] and 1 showing no change [28]. Two studies evaluated emotional support, both indicating improvement [34,35]. One study identified a relationship between intervention and emotional support without formal assessments [28], while 2 studies are under investigation [29,36]. Three studies assessed caregiver support, all of which showed improvement [30,34,37]. Similarly, 3 studies identified a relationship that needs further assessment [28,33,35], and 2 are still under investigation [29,36]. Financial support was not assessed in any of the reviewed studies.

Furthermore, regarding enhancing the efficiency of health care providers, one study assessed saving time and effort but found no significant time savings [28], while another study on this topic is still ongoing [32]. Treatment adherence was not directly assessed in any reviewed study, although 1 study noted a relationship without formal assessment [37]. Two studies evaluated care coordination, one indicating improvement [37] and another showing no change [30]. In total, 3 studies identified a relationship between the intervention and care coordination but did not conduct formal assessments [28,33,34], and 1 study is currently under investigation [32]. Shared decision-making and patient or family satisfaction were each assessed in 1 study, both showing improvement [33]. However, another study still investigates shared decision-making [29]. Additionally, 3 studies found a relationship between the intervention and shared decision-making [28,34,37], while 1 reported a relationship with patient or family satisfaction [28]. These findings suggest avenues for future research to assess these relationships more deeply.

Across the 11 reviewed studies, various assessment methods and statistical analyses were used to evaluate the effectiveness of interventions for children with CHD. These methods and analyses provided comprehensive insights into the outcomes measured and the statistical rigor applied.

As a statistical software, SPSS (IBM Corp) was predominantly used in 5 studies [30-32,34,37], reflecting its widespread utility for quantitative data analysis in health care research. Data collection methods varied, with all studies using questionnaires, often administered before and after the intervention. In total, 3 studies relied solely on questionnaires and quantitative methods [28,35,37], while 5 studies integrated questionnaire data with qualitative feedback from in-person or digital interviews, calls, or focus groups [29-31,33,36]. Two studies incorporated medical records or devices alongside questionnaires [27,32], and 1 used all 3 methods, including questionnaires, qualitative feedback, and medical records or devices [34].

Statistical analyses used in the reviewed studies to analyze the data included a wide range of methods. The most frequently used statistical analysis method was the independent samples t test, used in 4 studies primarily as pre- and postassessments [28,30,34,35]. Other common analyses included repeated measures ANOVA [32,34,36], analysis of covariance analysis [31,32,35], Mann-Whitney U test [30,32,37], and chi-square analysis [28,34,35], each used 3 times to assess various outcomes. Several studies have also applied regression analysis techniques such as stepwise regression [35], simple logistic regression [30], multiple logistic regression [30], and logistic regression [31,32].

Among the 11 studies, 2 statistical approaches were used in 3 studies [31,33,37]. Notably, 1 study in 1982 used 6 statistical techniques, including analysis of covariance analysis, independent samples t test, chi-square analysis, stepwise regression, correlation analysis (r), and cluster analysis [35]. Figure 7 provides an overview of the statistical approaches used across the studies, highlighting a range from 2 to 6 approaches per study.

The reviewed studies used various methods and statistical techniques, indicating no single approach to achieving their objectives. The frequent use of quantitative methods, primarily involving stakeholders other than children with CHD, suggests the need for tailored methods and techniques for this patient demographic.

This scoping review identified 11 studies conducted between 1982 and 2023, focusing on educational interventions for children with CHD. The studies included 9 RCTs and 2 observational studies. These studies used various intervention strategies, durations, study designs, and evaluation methods, offering a comprehensive overview of current research in this field. Six primary types of educational strategies were identified: 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). These interventions varied in duration, ranging from brief sessions during outpatient visits to programs lasting up to 1.5 years. Follow-up periods also varied, with 3 interventions having no follow-up, 2 having a 6-month follow-up period, 3 having follow-ups ranging from 4 to 6 weeks, and 1 study having a follow-up period of 24 months. The primary goals of these interventions were to improve the quality of life and coping strategies, self-management skills, and knowledge of children with CHD and their families. Among these studies, 3 interventions specifically targeted children above 13 years of age, 2 focused on parents, and 6 involved both children and parents. The primary statistical method used was the independent samples t test, used in 4 studies for pre- and postassessments. Outcome assessments focused on children’s HL, reducing parental burden, and improving the efficiency of health care providers. These findings reveal the potential and the limitations of current health educational interventions, highlighting the need for more child-centric approaches to engage younger patients with CHD.

This scoping review highlights the potential of educational interventions to significantly improve chronic care management for children with CHD and their families, aligning with previous findings [10-13,40-45]. Existing research indicates that well-informed pediatric patients can delay or prevent secondary illnesses, enhance their quality of life, and reduce health care costs [46-50]. However, many children with chronic conditions lack sufficient understanding of their illnesses, leading to confusion, anxiety, and other complications [51-54]. One contributing factor is the reliance on parents by health care providers to educate their children, assuming effective transmission of information [55,56]. Additionally, the development of interventions has mostly neglected children’s perspectives, focusing primarily on feedback from health care providers and parents. Younger children face barriers to participation due to limited attention spans, difficulty understanding abstract concepts, and challenges in expressing their needs [57,58]. As a result, interventions typically depend on parental feedback as a proxy for testing and design insights [59].

The review also found that educational materials were predominantly designed for teenagers or parental caregivers, lacking age-appropriate and engaging solutions for children younger than 13 years of age. Among the 11 studies reviewed, only 3 [27,31,33] exclusively targeted children, focusing on those aged 13 years and older, likely due to usability challenges for younger children [58,60-62]. This is the case despite the review’s specific focus on educational interventions for children with CHD. The concept that “children are not small adults” is widely acknowledged in pediatric care. It emphasizes that children represent a unique population with their own culture, norms, and complexities [63-65]. This understanding underscores the necessity for developing more inclusive and age-appropriate educational interventions for younger children with CHD.

Among the reviewed studies, 3D modeling emerged as a prominent strategy for educating pediatric patients and their families about CHD [28,33,37]. This approach offers engaging learning and improves communication between families and health care providers. However, despite its interactivity, 3D modeling and the other 5 strategies examined in this review lack engaging, playful interactions. Earlier educational tools, such as videotape presentations featuring friendly and playful characters like a fictional lion, effectively engaged young patients by making complex medical procedures more understandable and less intimidating through storytelling [35].

Playful strategies naturally engage children and facilitate learning through play. By communicating complex health information in an age-appropriate and engaging manner, they make a painful and tedious subject more approachable. In the 1920s, nurses Nightingale and Erikson first recognized the importance of systematizing play sessions to improve children’s hospitalization experience and adherence to medical procedures [66-73]. Since then, strategies like pretend play [74,75] and serious games [76,77] have been used for chronic care management, educating children about their conditions, and helping them manage their fears. However, these strategies are rarely used for children with CHD. The evolution of educational interventions from videotape presentations in 1982 to patient-specific 3D printing indicates significant technological advancements. Integrating engaging and playful approaches into current interventions could substantially boost their effectiveness by involving children directly in their health care journey through their own language: play.

The majority of the reviewed studies used RCTs [27-32,34-36], reflecting robust methodologies for evaluating educational interventions for children with CHD. However, except for 1 [33], many studies primarily assessed parental outcomes as proxies without adequately evaluating specific outcomes for pediatric patients themselves [28-30,32,34-37]. This highlights a gap in HL measures tailored for children with CHD. While parental involvement is essential, directly assessing children’s HL, coping mechanisms, and overall well-being is equally vital.

One notable strength of these studies was the involvement of various stakeholders in intervention delivery, including pediatric patients, parents or caregivers, and health care providers. Eight studies involved all stakeholders, ensuring a comprehensive approach [27,29-32,35-37]. Nevertheless, there is a need for more extensive engagement, particularly with pediatric patients, throughout the intervention’s ideation, design, and implementation phases. Early involvement of stakeholders, including children as design partners, enhances the integration of interventions into routine care, ensuring practicality, feasibility, and alignment with clinical needs [58,78-82].

While most studies used questionnaires supplemented by qualitative feedback, there is a major focus on quantitative approaches. Incorporating more qualitative studies in the initial stages could help identify challenges, barriers, and desires more effectively. Unlike quantitative methods, qualitative methods aim to explore, narrate, and explain phenomena, making sense of complex realities. Health interventions could develop as an outcome of qualitative research [83,84]. Statistical analyses were diverse, with the independent samples t test being the most commonly used method, typically involving defined objectives and pre- and postassessment measures. Despite the rigorous methodologies, there was a lack of long-term longitudinal studies to assess the sustained effectiveness of the interventions [85]. Most studies had follow-up periods ranging from 1 month to 1 year, with only 1 study extending to 24 months [30]. This highlights the need for future research to include extended follow-up periods to understand the long-term impact of educational interventions on children with CHD and their families.

By addressing these methodological gaps and expanding stakeholder engagement, particularly with pediatric patients, we can enhance the effectiveness of health educational interventions. Designers, health care providers, and policymakers should prioritize developing and implementing solutions with all stakeholders, not just for them. This collaborative approach can enhance care quality, coordination, and outcomes for children, families, and health care providers.

One effective strategy is to integrate engaging learning tools—both digital and physical—through play. For example, a playful, educational toy similar to Rufus the Bear with Diabetes (Empath Labs), used in diabetes education, can help children manage their health. A comparable toy featuring a simplified heart model allows children to explore their anatomy and medical routines through hands-on play, making complex concepts more accessible. Designed to meet developmental needs, these tools can reduce anxiety, foster independence, and help children manage fears through pretend play. By prioritizing children’s needs rather than relying on parents to convey information, we ensure that health information remains relatable and engaging. Ultimately, these child-led strategies empower families to build the knowledge and resilience necessary for effectively managing CHD. Such efforts could improve health outcomes during the transition to adulthood, enhance autonomy in managing CHD, and streamline education and health care delivery.