Introduction
Congenital Heart Disease is the most commonly occurring congenital abnormality, affecting approximately 1 in 100 newborns in the UK. Reference Wu, He and Shao1 CHD encompasses a wide spectrum of defects, often occurring in combination, and can be broadly categorised as mild, moderate, or severe. Reference Warnes, Williams and Bashore2 Notably, 20-30% of cases involve a more severe form of CHD that requires medical intervention in the first year of life. 3 Over the past 50 years, there has been a significant increase in survival rates of CHD with survival rates after paediatric cardiac surgery over 98% 30-day survival, Reference Spector, Menk and Knight4 and >97% of children with CHD expected to reach adulthood. Reference Mandalenakis, Giang and Eriksson5 This improvement is a result of major advances in early diagnosis, surgical and therapeutic interventions and, thus, interest has shifted from survival rates to long-term impact on quality of life and developmental outcomes for these children. Reference Pfitzer, Helm and Blickle6
Over the last thirty years, a growing body of literature has focused on academic achievement, attention, executive functioning, and behaviour of school-aged children with CHD, revealing a higher likelihood of neurodevelopmental impairments influenced by both biological and environmental factors. Whilst the majority of children with CHD have intelligence scores within the normal range, they continue to face a higher risk of neurodevelopmental difficulties compared to peers with healthy hearts. Reference Gerstle, Beebe, Drotar, Cassedy and Marino7 In general, those with less severe cardiac anomalies, such as isolated ventricular septal defects, experience fewer developmental issues than those with more complex lesions. Reference Gerstle, Beebe, Drotar, Cassedy and Marino7
In school-aged children with complex CHD, a distinct neurodevelopmental and behavioural phenotype has been observed, characterised by mild cognitive impairments, difficulties with social interactions, and deficits in fundamental communication skills, especially in pragmatic language. These children are also at a heightened risk for inattention, impulsivity, and challenges with executive functioning. Reference McCusker and Casey8, Reference Marino, Lipkin and Newburger9 Approximately 30–50% of children with complex CHD experience ongoing difficulties with social cognition, language, and communication that persist into school years. Although these “late effects” can be subtle, they tend to accumulate over time, potentially leading to significant challenges—particularly as greater independence and more advanced academic reasoning are expected. These issues are often detected through assessments of facial recognition and theory of mind, both of which are critical markers of social development. Reference Marino, Lipkin and Newburger9,Reference Cassidy, Ilardi and Bowen10,Reference Razzaghi, Oster and Reefhuis11,Reference Calderon, Bonnet, Courtin, Concordet, Plumet and Angeard12,Reference Calderon, Wypij and Rofeberg13,Reference Karsdorp, Everaerd, Kindt and Mulder14
Limited research suggests that children with complex CHD may be at increased risk for autism spectrum disorders Reference Wier, Yoshida, Odouli, Grether and Croen15 compared to the general population, the estimated prevalence of which is currently 2.8% in the United States and 1% in the United Kingdom for 8-year-old children. 16 Due to this increased prevalence, the AHA recommends autism-specific screening for children with CHD between 18 and 24 months of age. Reference Cassidy, Newburger and Bellinger17,Reference Marino, Lipkin and Newburger9,Reference Razzaghi, Oster and Reefhuis11 Additional studies are needed, however, to understand the underlying mechanisms and develop possible interventions to support those diagnosed.
Attention deficit disorders, including ADHD, are also more common in children with complex CHD, compared to the general population, in which the prevalence is 5–10%. Reference Polanczyk, Salum and Sugaya18,Reference Hovels-Gurich, Konrad, Skorzenski, Herpertz-Dahlmann, Messmer and Seghaye19,Reference Kirshbom, Flynn and Clancy20,Reference McCrindle, Williams and Mitchell21,Reference Shillingford, Glanzman, Ittenbach, Clancy, Gaynor and Wernovsky22,Reference Shillingford and Wernovsky23 In fact, some studies have found that children with complex CHD are three to four times more likely to receive clinically significant scores for inattention and hyperactivity than their healthy heart peers. Reference Kirshbom, Flynn and Clancy20,Reference McCrindle, Williams and Mitchell21,Reference Shillingford, Glanzman, Ittenbach, Clancy, Gaynor and Wernovsky22,Reference Mahle, Clancy, Moss, Gerdes, Jobes and Wernovsky24 Emotional dysregulation is one of the most frequently misunderstood and under-recognised features of Attention Deficit Hyperactivity Disorder (ADHD), often leading to diagnostic confusion with other psychiatric conditions.
Children with CHD are more likely to require special education services compared to the general population due to the increased risk of neurodevelopmental deficits. Reference Shillingford, Glanzman, Ittenbach, Clancy, Gaynor and Wernovsky22,Reference Dunbar-Masterson, Wypij and Bellinger25 The percentage varies depending on the severity of the condition and the specific needs of the child, but estimates suggest that around 25–50% of children with complex CHD receive special education services to support academic or developmental needs. Reference Riehle-Colarusso, Autry and Razzaghi26 For children with less severe CHD, the rate of special education services is lower, but they still have a higher likelihood of receiving support compared to typically developing peers. Reference Shillingford, Glanzman, Ittenbach, Clancy, Gaynor and Wernovsky22 In comparison, around 15% of all children in the general population of the United States Reference Hussar, Zhang and Hein27 and United Kingdom 28 are enrolled in a special education programme. Reference McCusker and Casey8,Reference Shillingford, Glanzman, Ittenbach, Clancy, Gaynor and Wernovsky22,Reference Bellinger, Wypij, Rappaport, Jonas, Wernovsky and Newburger29
Factors such as medical burden, social and academic challenges, limited friendships, and obesity can negatively impact the educational experiences of children with CHD, thereby increasing the risk for mental health disorders, including anxiety, depression, and post-traumatic stress. Reference Gonzalez, Kimbro and Cutitta30 Evidence suggests that with appropriate interventions, many children with CHD can overcome developmental delays and achieve positive outcomes. Reference Pfitzer, Buchdunger and Helm31,Reference Bellinger, Wypij and Rivkin32 Early identification of learning and behavioural challenges is therefore crucial, as it allows for the implementation of individualised educational interventions and specialised services designed to address each child’s specific needs and optimise their academic performance.
Despite the rising number of school-aged children with CHD, limited research has focused on teachers’ perspectives regarding how they support these students in the classroom. Given the crucial role teachers play in fostering the healthy development of children with CHD, it is essential to explore how best to equip them to provide effective support. This includes examining the educational challenges faced by these children and understanding the broader impact of CHD on their learning experience. This systematic scoping review aimed to offer a comprehensive understanding of existing research in this area and identify any knowledge gaps. The primary research question guiding this review is: What is the nature and scope of literature exploring the educational experience of children with congenital heart disease?
Methods
This review employed the methodological framework for scoping reviews developed by Arksey and O’Malley (2005), Reference Arksey and O’Malley33 consisting of a streamlined five-step process. In the initial step, the focus was on formulating the research question, with the recommendation to commence with broad questions and refine them as the research scope becomes clearer. Step two entailed the identification of relevant studies through database searches. Moving to step three, the screening and study selection phase provided the opportunity to establish post hoc inclusion and exclusion criteria based on the gained familiarity with the research. Step four encompassed the systematic charting of data, involving the extraction of relevant information such as study objectives, methodology, outcome measures, and significant results. The final step involved the comprehensive collection, summarisation, and reporting of the review results, following the methodological framework. Reference Arksey and O’Malley33
For the purpose of this review, educational challenges have been categorised into the following domains: (i) Cognitive Functioning, (ii) Psychomotor Functioning, (iii) Behavioural Functioning, (iv) School Attendance, and (v) Affective Functioning (See Table 1):
Table 1. Educational challenges faced by school children living with CHD
Eligibility criteria:
In order to be included in this review, papers needed to include primary research with a focus on specific educational challenges facing school children with CHD as outlined in the operational definition above. They need to explicitly state that the sample population included children or young people of school age with CHD (4–18 years) or teachers or parents of children living with CHD.
Only papers written in English were included as this was the only language spoken by the reviewers. There were no restrictions on the type of academic paper eligible for inclusion, aiming for a comprehensive overview of the research landscape. This encompassed quantitative, qualitative, mixed methods studies, and review articles.
No time limits were placed either. Studies were excluded if they focused on chromosomal anomalies or specific genetic syndromes associated with developmental disability. These papers are normally excluded from the literature because of a greater risk for developmental sequelae that would better explain their cognitive and behavioural profile.
Information sources:
To identify potential articles, a comprehensive search was conducted on October 11, 2023, across various databases. The search strategy, initially drafted by the reviewer, underwent further refinement in collaboration with an experienced librarian assistant. The databases included in the search were PsycINFO, Ovid Medline, CINAHL, ERIC, British Education Index, and ProQuest. The search strategy employed for Medline served as a guide for the other databases (see Supplementary Appendix S1). All retrieved articles were organised using the reference management tool EndNote, and duplicates were eliminated through an EndNote duplication search. Out of a total of 717 articles collected, 82 duplicates were removed, leaving 635 articles for screening.
The screening process occurred in two stages: title and abstract screening, followed by full-text screening and was performed by two reviewers. The title and abstract screening phase was conducted in Rayyan, Reference Ouzzani, Hammady, Fedorowicz and Elmagarmid34 a screening software tool. In this phase, the reviewers adhered to the predefined inclusion and exclusion criteria. In cases where there was uncertainty about whether to retain an article, it was advanced to the full-text screening phase. During this stage, 540 articles were excluded, resulting in 95 articles remaining for full-text screening. The full-text screening phase was completed in EndNote, where the reviewers rigorously applied the inclusion and exclusion criteria, leading to the exclusion of additional articles. The final count of included articles for the data extraction stage was 41, as illustrated in the Figure 1 below:
Figure 1. Flow chart for the inclusion and exclusion of articles and their associated reasons.
Data charting process:
A data extraction form was developed by the reviewer. The form systematically captured information including authors, year of publication, country of origin, study design, aims/purposes of the paper, target population, sample size, inclusion criteria for participants, specific educational challenges assessed, measures used for assessment, study setting, key findings, limitations of the study and any future recommendations for further research. This comprehensive form served as the tool for extracting relevant data from the identified articles.
Synthesis of results:
Papers were categorised based on the specific area or domain regarding educational challenges addressed. For each particular domain, summaries were created, encompassing details of the sample population, study design and other variables under consideration. In addition, a summary was provided for the measures employed to investigate the educational challenges and the key findings. These summaries were used to address the research question above.
Results
Paper characteristics:
Among the 41 papers reviewed, the majority adopted a cross-sectional design (n = 12, 29%). This was followed by a matched group design (n = 9, 23%), a prospective cohort design (n = 5, 12%), secondary data analysis (n = 6, 14%), qualitative design (n = 4, 10%), retrospective cohort design (n = 3, 7%), and randomised control trial (n = 2, 5%) (Table2).
Table 2. Range of study designs assessing educational challenges of school children with CHD
Data summarised from studies identified in the authors’ scoping review. Individual study references are provided in the Reference column and listed in full in the reference list.
The studies were conducted in various countries, with the United States being the most common (n = 12, 29%), followed by Switzerland (n = 5, 12%), the United Kingdom (n = 4, 9.4%, including 3 from Northern Ireland), Belgium (n = 4, 10%), Canada (n = 4, 10%), the Netherlands (n = 2, 5.2%), Germany (n = 2, 5.2%), Italy (n = 1, 2.4%), Malaysia (n = 1, 2.4%), Korea (n = 1, 2.4%), France (n = 1, 2.4%), Sweden (n = 1, 2.4%), Austria (n = 1, 2.4%), Denmark (n = 1, 2.4%), and Spain (n = 1, 2.4%). The sample sizes also varied widely, ranging from 15 to 864,159 participants, with larger samples often derived from population-based cohort studies. The year of publication for these studies ranged from 1996–2023.
In terms of how educational challenges were assessed, 24 studies included parent report, 11 included child report, 8 studies included teacher report, 2 included the views of school professionals (administrators, educational psychologists), 2 studies included healthcare provider report, 2 studies included a physical exercise test, whilst 12 included developmental assessments conducted by a trained professional. Six studies used an education register as a measure of academic achievement in population-based studies (see Supplementary Table S1).
Educational challenge domains:
Cognitive functioning was the most frequently evaluated domain across the studies (n = 18), followed by behavioural functioning (n = 12), psychomotor functioning (n = 6), and school attendance (n = 2). Notably, only one examined affective functioning in school children living with CHD (see Supplementary Table 2).
Within the domain of cognitive functioning, measures focused on elements of cognitive development, global intelligence, executive functioning, and language development. The Wechsler Intelligence Scale for Children – Third Edition (WISC-III), Reference Wechsler72 Wechsler Intelligence Scale for Children – Fourth Edition (WISC-IV), Reference Wechsler73 and Developmental Neuropsychological Assessment—NEPSY Reference Korkman, Kirk and Kemp74 were most commonly used to measure cognitive functioning and global intelligence, whilst the Behaviour Rating Inventory of Executive Functioning (BRIEF) - Parent Report Reference Gioia, Isquith, Guy and Kenworthy75 was the most frequently used measure for executive functioning. A range of different measures were used for language ability (see Supplementary Table S3).
In the psychomotor functioning domain, measures focused on adaptive behaviour and activities of daily living, whilst two papers assessed functional capacity using an exercise stress test (see Supplementary Table S4). In the behavioural functioning domain, measures focused on behavioural and emotional problems in school children and the diagnosis of intellectual and developmental delays as well as neuromotor development. The most commonly used measures were the Child Behaviour Checklist (CBCL) – Parent Report Reference Rey, Schrader and Morris-Yates76 , Strength and Difficulties Questionnaire (SDQ), Reference Goodman77 and Teacher’s Report Form (TRF) Reference Achenbach78 (see Supplementary Table S5). In terms of school attendance, 2 studies included measures for school absenteeism (see Supplementary Table S6). Only one study reported on affective functioning of school children with CHD (see Supplementary Table S7).
How does CHD affect the educational experiences of those school children living with the condition?
Cognitive functioning
Among the 18 studies that focused on cognitive functioning, in general, it was found that Global Intelligence scores were in the low average range with the majority stating these deficits are more significant in those children who have undergone infant open-heart surgery.
Expressive language and receptive language were found to be significantly worse than healthy controls. Reference Mahle, Clancy, Moss, Gerdes, Jobes and Wernovsky24,Reference McCusker, Armstrong, Mullen, Doherty and Casey51,Reference Mulkey, Swearingen and Melguizo57 It was also evident that those children with CHD experience significant difficulties in executive functioning when compared to peers with a healthy heart. Deficits in metacognitive functioning were found to significantly impact school performance, particularly among children with complex CHD and in fact surpassed other influencing factors such as intelligence, race, gender, or complexity of the heart lesion. Reference Olson, Seidler, Goodman, Gaelic and Nordgren41,Reference McCusker, Armstrong, Mullen, Doherty and Casey51,Reference Limbers, Emeryn and Uzark56,Reference Watkins, Isichei and Gentles60,Reference Roberts, Massie, Mortimer and Maxwell63
Psychomotor functioning
Among the six studies that focused on psychomotor functioning, all reported deficits in sensorimotor functioning. Miatton et al (2007) Reference Majnemer, Limperopoulos, Shevell, Rohlicek, Rosenblatt and Tchervenkov35 reported that children with CHD had significantly reduced skills for imitating hand and finger positions, were slower on motor tasks, demonstrated worse hand-eye coordination and showed less accuracy in fine visuomotor skills. Liamlahi (2014) Reference Omann, Kristensen, Tabor, Gaynor, Hjortdal and Nyboe58 indicated that children with CHD performed worse in all motor domains compared with the reference population.
According to Miatton et al. (2007), Reference Miatton, De Wolf, Francois, Thiery and Vingerhoets45 researchers in the field, as well as health professionals and teachers working with school-age children with CHD, should be mindful that outcome-oriented tasks that require a speeded response or are carried out under time constraints will not always adequately reflect these children’s true capabilities.
Functional limitations in socialisation, daily living skills, communication, and adaptive behaviour were noted in 4 out of 6 studies with Majnemer et al (2008a) Reference Majnemer, Limperopoulos, Shevell, Rohlicek, Rosenblatt and Tchervenkov35 stating that 20 to 22% of participants were more dependent than their peers in self-care and social interaction.
Behavioural functioning
All 12 studies which focused on behavioural functioning found problems with internal and external behaviours with one study stating that internalising problems were more frequent (Majnemer et al 2008b). Reference Majnemer, Mazer and Lecker40 Liamlahi (2014) Reference Liamlahi, von Rhein and Buhrer66 found behaviour to be affected in the domains “emotional symptoms” and “hyperactivity/inattention,” with over half (54%) of children with motor abnormalities also exhibiting behavioural deficits. In all 12 studies, parental reports of school children with CHD indicated these children often presented with more withdrawn behaviour, social difficulties, thought problems, attentional shortcomings, and lower competence for activities.
School attendance
Two studies focused on measuring sick days as an indicator of illness-related absence from school, which can often undermine academic achievement. McCusker et al. (2012), Reference McCusker, Doherty and Molloy69 who developed the only school-based psychosocial intervention to improve outcomes for this population, reported that children in the intervention group were perceived as “sick” less often by their mothers and missed fewer days from school. Van der Mheen et al., (2019) Reference van der Mheen, Meentken and van68 who adapted the Congenital Heart Disease Intervention Program - CHIP - School intervention to include a module specifically for the child, measured school absence using the Rotterdam Quality of Life Reference De Jeu, Pedersen, Balk, van Domburg, Vantrimpont and Erdman79 interview. Results, however, showed no significant difference in the number of days off in one month for those children in the intervention group as reported by mothers, fathers, and teachers.
Affective functioning
Only one study reported on the affective functioning of school children with CHD. This study suggested that while many of this sample of children said that they coped well with their condition, some children did experience a significant impact on their quality of life in several domains. Children and young people identified a need for improved strategies to help them communicate about their condition with peers, schoolteachers, and healthcare professionals to allow a better understanding of what they are able to achieve (Naef et al 2017). Reference Naef, Liamlahi and Beck54
What is the impact on teachers of having a child with CHD in the classroom?
The complexity of illness management and disease sequela can alter the school experience of children with CHD. However, little is known about the concerns of teachers when children with CHD are in their classroom. Olson et al (2004) Reference Olson, Seidler, Goodman, Gaelic and Nordgren41 conducted a survey to assess educators’ perceptions of the impact of having children with chronic health conditions, including CHD, in the classroom and to explore which aspects are of most concern to teachers and other school professionals. Findings indicated that, overall, school professionals had positive attitudes about children with chronic health conditions in the classroom, but concerns about specific diseases and issues existed. The aspects of relatively more concern for teachers and other school professionals were not the academic issues or the impact on peers but the extra burdens and feeling personally at risk or uncomfortable having a child with a chronic health condition in their classrooms. In addition, teachers said that they commonly receive most of their condition-specific information from parents. They felt that healthcare professionals who care for children could potentially help by providing realistic information about illness complications and the risk involved with these conditions when interacting with school personnel. Teachers also voiced their concerns about the additional time and attention required to care for a child with a chronic health condition and also the feared risk and liability. They felt that these issues could not be easily discussed with parents who were advocates for the child. Over half (53%) of teachers were concerned about an emergency occurring with a child in the classroom and over a quarter (27%) were concerned about legal liability. Teachers’ concerns of the risk of classroom emergencies or death were found to be disproportionate to the clinical risk for CHD with one-quarter fearing that a child with CHD might die in the classroom. Although, overall, more than half of the teachers felt additional training was needed, few opportunities existed to provide information and to correct misconceptions.
Violant-Holz et al (2023) Reference Violant-Holz, Munoz-Violant and Rodrigo-Pedrosa64 conducted a study involving interviews with school children living with CHD, their parents and education professionals (including both teachers and other specialists) to explore to what extent children with CHD are afforded the same educational and social opportunities as their healthy peers. The analysis revealed four themes describing the experience of schooling for children with CHD: (1) Empowering and enabling a child with CHD to achieve academically and engage socially is a challenge for parents; (2) Teachers lack the resources and specific skills necessary to meet the diverse needs of children with CHD; and (3) Parents and teachers have low expectations regarding the academic achievement of a child with CHD. Further analysis revealed a fourth theme, which was those children with CHD experience exclusion from peer group social learning activities. This was considered to be a core theme, and the initial three themes were a causal factor for social exclusion.
Violant-Holz et al (2023) Reference Violant-Holz, Munoz-Violant and Rodrigo-Pedrosa64 concluded that the school experience of those children living with CHD falls short of being inclusive for two main reasons: (i) some parents see their child with CHD as a fragile individual and school as a hostile environment in which the child’s limitations and needs are not adequately recognised. This can lead them to be overprotective, and they may find it difficult to offer the supportive encouragement and positive reinforcement the child needs. (ii) Low expectations placed on them by both parents and teachers with regard to their academic and personal development as this can negatively affect the child’s sense of self and self-esteem. Notably, many of the teachers interviewed felt that in the absence of adequate support from the education and healthcare systems, the best they could do was to make minor adjustments to what and how they taught in an attempt to include these children beyond curricular adaptations. Overall, it was felt that further efforts are needed regarding a more effective collaboration and coordination between educational and health professionals to better support teachers and families and to enable children with CHD to become better integrated within schools.
Roberts et al (2005) Reference Roberts, Massie, Mortimer and Maxwell63 conducted a phenomenological study to identify the school experiences of children and families who live with CHD and to ascertain how these families think schools can best assist students and families affected by CHD. Across participants, themes emerged in five key areas: 1) communication, 2) social belonging, 3) living with risk and uncertainty, 4) complexity of medical condition, and 5) school experiences. The findings suggest that although numerous children and families found school to be a positive and enriching environment, others experienced ethical wrongdoings and a lack of caring support, communication, and knowledgeable school personnel. Moreover, they concluded, if school personnel considered the Five Cs of best practice (communication, confidentiality, consistency, competence, and compassion), the school experiences and quality of life of children and families could be optimised.
Discussion
There has been a significant increase in research on the neurodevelopmental outcomes of school-aged children with CHD over the past 30 years, but few studies have explored the range of educational challenges faced by some of these children throughout the school years, particularly at school entry and ways in which educational experiences of these children can be optimised. The aim of this systematic scoping review was to synthesise existing literature on the educational experiences of children with CHD, with a particular focus on identifying how CHD impacts learning and classroom participation, and to highlight gaps in current knowledge, especially regarding teachers’ perspectives and support strategies.
It is evident from this review that some children living with CHD can experience difficulties in school across cognitive, psychomotor, behavioural, and affective domains, in addition to challenges related to school attendance. Out of the 41 included studies, the most frequently assessed domain was cognitive functioning, with 18 including it as an outcome measure. The review highlighted that despite the majority of children with CHD having intelligence scores within the normal range, these children, particularly those with complex CHD, remain at higher risk for neurodevelopmental difficulties compared to their healthy peers. Children with complex CHD were found to be more likely to experience developmental challenges at school entry, with executive functioning difficulties and deficits in metacognitive functioning and often struggled with concentration, memory, communication skills, social participation, and the ability to comprehend complex lessons. Reference Sarrechia, Miatton and De Wolf48,Reference McCusker, Armstrong, Mullen, Doherty and Casey51,Reference Limbers, Emeryn and Uzark56,Reference Watkins, Isichei and Gentles60
Six studies reported psychomotor limitations in children with CHD, including sensorimotor deficits such as poor coordination, reduced hand-eye coordination, and slower task performance. Reference Miatton, De Wolf, Francois, Thiery and Vingerhoets45,Reference Liamlahi, von Rhein and Buhrer66 Miatton et al. also noted that time-limited tasks may not accurately reflect these children’s true abilities and recommended this be taken into account in the classroom.
All 12 studies examining behavioural functioning in children with CHD reported both internalising and externalising issues with parental reports consistently indicating that these children often exhibited withdrawn behaviour, social challenges, attention problems, and reduced ability for physical activities.
Two studies examined illness-related school absenteeism. McCusker et al. (2012) Reference McCusker, Doherty and Molloy69 reported that children in a psychosocial intervention group missed fewer school days, while Van der Mheen et al. (2019) Reference van der Mheen, Meentken and van68 found no significant difference in absenteeism after adapting the CHIP-School intervention. The other studies did not measure school absences, possibly because these children typically do not miss a significant amount of time because of their heart condition, as corrective surgeries are often scheduled before school begins.
Surprisingly, only one study Reference Naef, Liamlahi and Beck54 examined affective functioning in school-aged children with CHD. It found that while many children coped well with their condition, some experienced significant impacts on their quality of life and emphasised the need for improved communication strategies with peers, teachers, and healthcare professionals.
Overall, these studies indicated that although the majority of children who undergo cardiac surgery in infancy achieve intelligence scores within the normal range, they may still encounter specific challenges, particularly in visual-spatial and visual-motor abilities, as well as executive functions such as memory and problem-solving, placing them at increased risk for developmental and educational challenges.
It is important to note, however, that some studies found those children with acyanotic forms of CHD and fewer early-life hospitalisations can achieve educational outcomes comparable to or exceeding their healthy peers. Reference Pfitzer, Helm and Blickle6,Reference Schaefer, Hoop and Schürch-Reith38 This suggests that factors beyond the medical condition—such as educational systems, support programmes, and quality of care—play significant roles in shaping these outcomes.
Resilience developed through managing CHD may also contribute to these positive academic results. Reference Lee, Lee and Choi80
This review highlights the lack of research to date on the experiences of teachers who have children with CHD in their classrooms. The few available studies indicated that teachers often lack adequate information about the specific needs of these children, leading to anxiety and uncertainty. Studies also reported that teachers preferred receiving condition-specific information from healthcare professionals rather than parents to correct misconceptions and adjust classroom activities, especially in Physical Education. These studies, however, did not explore the impact of CHD severity on educational experiences. It is crucial to provide teachers with training specifically tailored to the child’s condition and disease severity, in order to improve their understanding of the child’s educational experience and, in turn, reduce anxiety and improve their ability to support these children effectively. It is evident from the limited studies available that stronger collaboration between healthcare providers and educators is essential to optimise the educational experiences of children with CHD.
Lastly, while 37 out of 41 studies included in this review utilised a quantitative design, there is a clear need for more exploratory qualitative research to capture the rich perspectives of children and young people, parents, and educators, and to gain a more comprehensive understanding of these educational experiences.
Gaps and limitations
This scoping review is the first to examine the educational experiences of children with CHD comprehensively. However, it has some limitations. Despite an extensive search across multiple databases, some relevant articles may have been missed. Additionally, the review included studies of varying methodological quality, which could introduce selection bias. Only studies published in English were considered, which may have limited the scope of the review.
Key gaps identified in the literature include the limited number of studies that have explored teachers’ perspectives on having a child with CHD in the classroom. To date, only two studies have captured these views, and only one study specifically focused on affective difficulties as an educational challenge for children with CHD. Reference Naef, Liamlahi and Beck54
Future recommendations
Future research should focus on effective strategies to support educators and schools in working with children with CHD. Raising awareness among education professionals about the heightened risk of neurodevelopmental deficits in children with more severe forms of CHD, such as single-ventricle conditions, is crucial. Additionally, developing educational resources that provide appropriate training, information, and multidisciplinary support for teachers and schools is essential in maximising the educational experiences of these children.
Conclusion
This review highlights that children living with CHD, particularly those with more complex conditions, often experience educational challenges, especially during the early years of school. While research on neurodevelopmental outcomes in this population has expanded over the past three decades, there remains a notable lack of qualitative studies that capture the unique perspectives of children, young people, parents, and educators. Future research should prioritise exploring these viewpoints, examining the influence of disease severity, and developing targeted educational resources to better equip teachers and enhance the overall school experience for children living with CHD.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1047951125101327
Acknowledgements
We would like to thank Harshaa Vardhini Narasimhan for taking the necessary time and effort as second reviewer to review the manuscript. We sincerely appreciate your work.
Financial support
The review was funded by the Department of Health NI as part of a wider programme of work by the All-Island Congenital Heart Disease Research Network: HSC R&D Division Award SPI/5671/21.
Competing interests
None.
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