Introduction
Children and young people living with CHD represent a growing population due to substantial advances in medical and surgical care, with survival rates now exceeding 95% into adulthood. Reference Dellborg, Giang and Eriksson1,Reference Su, Zou and Hay2 As survival has improved, there has been increasing recognition of the broader long-term consequences of living with CHD. Alongside the physical effects of their condition, many children and young people experience neurodevelopmental, cognitive, psychosocial, and educational challenges that may persist throughout childhood and adolescence. Reference Brosig, Bear and Wolfe3–Reference Marino, Cassedy, Drotar and Wray5
Children with CHD are at increased risk of difficulties relating to executive functioning, attention, memory, emotional well-being, and social adjustment. Reference Ilardi, Sanz and Cassidy4,Reference Marino, Cassedy, Drotar and Wray5,Reference Calderon and Bellinger6 Fatigue, reduced exercise tolerance, anxiety, and difficulties maintaining concentration are also commonly reported. Reference Chong, Fitzgerald and Craig7–Reference Nowak-Capobianco and Frishman9 These challenges can have a substantial impact on educational participation, attainment, and quality of life. As a result, educational experiences are increasingly recognised as an important aspect of long-term care for children and young people living with CHD. Reference Millen, Dempster and Casey10
Schools play a central role in supporting children with CHD and are often where the educational, physical, and psychosocial impacts of the condition are most evident. Educational professionals support pupils’ academic progress, inclusion, social participation, emotional well-being, and physical safety. Reference Violant-Holz, Muñoz-Violant and Rodrigo-Pedrosa11,Reference Mukherjee, Lightfoot and Sloper12 Teachers frequently make day-to-day decisions regarding participation in physical activity, management of fatigue, responses to symptoms or illness, and support for learning and concentration difficulties. For many children, schools represent a key setting in which health-related challenges can influence educational participation, social experiences, and overall well-being. Reference Brosig, Bear and Wolfe3–Reference Marino, Cassedy, Drotar and Wray5
Despite the important role schools play, relatively little attention has been paid to the experiences and support needs of educational professionals. Reference Olson, Seidler, Goodman, Gaelic and Nordgren13 Emerging evidence suggests that many teachers report limited knowledge and low confidence in supporting pupils with CHD, particularly in recognising warning signs, understanding the educational implications of the condition, and balancing safety with participation in school activities. Reference Renwick14,Reference Millen, Dempster and Casey15 Unlike conditions such as diabetes or epilepsy, CHD comprises a diverse range of cardiac conditions that vary considerably in their presentation, severity, and impact on daily functioning. Reference Violant-Holz, Muñoz-Violant and Rodrigo-Pedrosa11,Reference O’Connor, Cassedy and Wray16 This complexity may contribute to uncertainty among educational professionals and variability in school-based support.
Communication and information sharing between healthcare services, families, and schools represent a further challenge. Effective support requires educational professionals to understand not only a child’s diagnosis but also how their condition may influence learning, participation, attendance, and well-being. However, communication between healthcare and education sectors is often indirect and inconsistent. Reference Kendall, Sloper, Lewin and Parsons17 In many cases, parents act as the primary conduit of information regarding their child’s condition, resulting in variability in how information is transferred and interpreted across educational settings. Reference Barbazi, Shin, Hiremath and Lauff18,Reference McCusker, Doherty and Molloy19
Reliance on informal communication pathways may place a considerable burden on families while contributing to gaps in staff knowledge and confidence. Educational professionals may be required to make decisions regarding symptom management, participation in physical activity, or responses to health concerns without sufficient information or opportunities to seek clarification from healthcare professionals. Reference Selekman20,Reference Hinton and Kirk21 Existing training opportunities are also often limited, non-specific, or delivered as one-off sessions that may not adequately address the practical challenges encountered within school settings. Reference Millen, Dempster and Casey10,Reference Venna, d’Udekem and Figueiredo22
Recent clinical guidance has increasingly recognised the importance of multidisciplinary and family-centred approaches to CHD care, acknowledging that outcomes extend beyond physical health to include neurodevelopmental, educational, and psychosocial functioning. Reference Sood, Newburger and Anixt23 However, relatively little attention has been given to how healthcare services can work collaboratively with schools, despite the significant role educational professionals play in supporting children and young people with CHD. Greater understanding of the experiences of educational professionals may therefore help identify opportunities to strengthen communication pathways, improve collaboration between cardiac services and schools, and support more integrated approaches to care.
In response to these challenges, there is a growing need for accessible, evidence-based resources that support educational professionals in understanding and responding to the needs of pupils with CHD. Such resources should provide practical, child-specific guidance, and clear decision-making frameworks and strategies that support safe participation and inclusion within school environments.
This study explored educational professionals’ experiences of supporting pupils with CHD, with particular focus on communication, information sharing, and collaboration between cardiac services and schools. Findings from a teacher training webinar evaluation complemented the qualitative data by providing additional insight into teachers’ knowledge, confidence, and support needs.
Materials and methods
Study design
This qualitative interview study explored educational professionals’ experiences of supporting children and young people living with CHD in educational settings. Data were analysed using reflexive thematic analysis following Braun and Clarke’s six-phase approach. Reference Braun and Clarke24 The study is reported in accordance with the Consolidated Criteria for Reporting Qualitative Research. Reference Tong, Sainsbury and Craig25
Research team and reflexivity
Interviews and analysis were conducted by a health psychologist with experience in qualitative research with children, families, and professionals affected by chronic health conditions, including CHD. Reflexive notes were maintained throughout data collection and analysis to document methodological decisions, emerging interpretations, and potential biases. The wider research team included a paediatric cardiologist and a health psychologist, who contributed to the interpretation of the findings.
Participants and recruitment
Educational professionals were purposively recruited from mainstream primary, post-primary, and specialist schools across Northern Ireland. Eligible participants included teachers, classroom assistants, special educational needs coordinators, and senior leadership staff with experience supporting a pupil with CHD.
Recruitment took place through professional networks, school contacts, Children’s Heartbeat Trust, and direct invitations to schools using publicly available contact information. Interested individuals contacted the research team directly and received further study information. Fifteen educational professionals participated.
Informed consent
All participants received a participant information sheet outlining the study purpose, participation requirements, confidentiality, data protection, and the right to withdraw. Participants were given at least one week to consider participation before written informed consent was obtained.
Data collection
Individual semi-structured interviews were conducted between 21 May 2023 and 23 January 2025, either face-to-face or online via Microsoft Teams or Zoom. The interview guide was informed by the wider programme of research, stakeholder consultation and multidisciplinary team discussion. Interviews explored experiences of supporting pupils with CHD, communication and information-sharing practices, knowledge and training needs, confidence and uncertainty in decision-making, classroom adaptations, and recommendations for improving collaboration between healthcare services and schools.
Interviews were audio-recorded with consent and transcribed verbatim. Interviews lasted approximately 30–60 minutes. Field notes were completed after each interview to capture contextual observations and initial analytic reflections.
Webinar evaluation
As part of the wider programme of research conducted by the team, a targeted online teacher training webinar on CHD was developed and evaluated using pre- and post-webinar questionnaires. These assessed self-reported CHD knowledge, confidence in supporting pupils, and perceived usefulness and acceptability of the training. Questionnaire data were analysed descriptively and used to complement the qualitative findings.
Data analysis
Data were analysed using reflexive thematic analysis. Reference Braun and Clarke24 Transcripts were imported into NVivo (Version 14.2; Lumivero) to support organisation of the dataset. Analysis began with repeated reading of transcripts, followed by inductive coding grounded in participants’ experiences. Theme development was iterative, involving movement between transcripts, codes, and candidate themes. Themes were refined through discussion within the research team and selected to best represent participants’ experiences and address the study aims.
Ethical considerations
Ethical approval was granted by the Queen’s University Belfast Faculty of Engineering and Physical Sciences Research Ethics Committee on 9th August 2023. All data were anonymised before analysis and stored securely in accordance with institutional data protection procedures.
Findings
Qualitative findings
Fifteen educational professionals participated in the study. Fourteen were female. Ten worked in mainstream primary schools, three in post-primary schools, and two in special or specialist settings. The sample comprised 13 class teachers, one classroom assistant, and one school leader. Six participants were also parents of children with CHD.
Four interrelated themes were identified: (1) Desire for structured communication; (2) Need for individualised information Relating to the Educational Environment; (3) Managing uncertainty in the classroom; and (4) Striving for inclusivity via flexibility. Across all themes, participants emphasised the importance of practical, child-specific information to support decision-making in schools.
Theme 1: Desire for structured communication
Communication emerged as a key factor shaping educational professionals’ experiences of supporting pupils with CHD. Across interviews, parents were consistently identified as the primary source of information about a child’s condition, treatment and day-to-day support needs.
Most of the information comes from parents. We rely heavily on parents because they know their child best. (P15)
Participants relied on parents to provide updates following medical appointments and to advise on symptom management, medication changes, and participation in school activities.
Mum even messaged me this week… to take it easier in the playground. (P2)
Although parental involvement was highly valued, many participants questioned whether responsibility for communication should rest primarily with families.
If you get any information… bring it back to us. (P3)
Teachers recognised that parents were often processing complex medical information themselves.
If [a parent has] had a very difficult conversation… it takes some time to process. (P6)
Rather than criticising parents, participants highlighted a lack of structured communication between healthcare services and schools. Many advocated standardised post-clinic updates, child-specific summaries, and greater involvement of liaison nurses or healthcare professionals.
A structured form, like a Google Doc form… to alert us to any relevant change… what to watch out for. (P10)
It would be great to have some mechanism in place in which we received updates every six months. (P9)
Several participants also valued opportunities for direct contact with healthcare teams.
A Zoom or meeting with someone from the child’s care team would probably have been beneficial. (P12)
Overall, participants wanted communication that translated clinical information into practical guidance to support learning, participation, and well-being within school.
Theme 2: Need for individualised information relating to the educational environment
Participants consistently reported limited access to CHD-specific training and frequently contrasted this with the structured support available for conditions such as epilepsy and diabetes.
There’s epilepsy, there’s diabetes, allergies - there’s training. The CHD… there doesn’t seem to be half as much information. (P14)
Most described learning through experience and communication with parents and colleagues rather than formal training. However, participants generally did not want more detailed medical information, which was often perceived as overwhelming.
Sometimes knowing lots of detailed medical stuff can be a bit overwhelming and it makes me even more anxious. (P1)
Instead, teachers wanted practical guidance on recognising symptoms, supporting participation, and knowing when concerns should be escalated.
Teachers don’t necessarily need extensive medical information, but they do need information that helps them understand what the condition means in practice. (P15)
Participants repeatedly emphasised that support should be tailored to the individual child rather than the diagnosis.
Actually, thinking about how it is going to affect X and how can I help X is what would be most beneficial. (P5)
A simple information sheet that’s generic isn’t going to work because each child’s different. (P3)
Child-specific resources that translated clinical information into practical classroom guidance were viewed as particularly valuable.
It was good to understand the reason WHY. (P5)
Theme 3: Managing uncertainty in the classroom
A recurring finding was the uncertainty experienced by educational professionals. Although they were responsible for supporting pupils’ safety, participation, and well-being, many lacked confidence in recognising symptoms, assessing potential risks and deciding when further action was needed. Many described initial anxiety when informed that a pupil with CHD would be joining their class.
Whenever you’re in the handover in August… you do feel a bit anxious about it. (P1)
This was closely linked to the responsibility of caring for a child with a potentially serious health condition.
It’s somebody else’s child that I have to make decisions for. (P6)
Participants also described uncertainty in recognising symptoms and understanding what was normal for an individual child.
I’ve never really seen this [cyanosis]—what’s it like? Is it very blue or just a slightly different colour? (P2)
The often-invisible nature of CHD added to this uncertainty.
The child who is just medical… will fall through the gap because you don’t realise… they look perfect. (P10)
Balancing safety with participation, particularly during physical activity, was another common concern.
It’s hard… you don’t know how much to encourage or… discourage… because you want to be so cautious. (P1)
Without clear guidance, it can be difficult to know where that balance lies. (P15)
Despite these challenges, confidence increased over time through experience, stronger relationships with families, and a better understanding of each child’s needs. Participants also recognised children’s own ability to monitor and communicate how they were feeling.
She knows… when she needs to be careful. (P1)
X is also very good at telling us how she is feeling. (P5)
Theme 4: Striving for inclusivity via flexibility
Despite the challenges associated with CHD, participants consistently prioritised inclusion. Rather than restricting participation, teachers described making flexible adjustments that enabled pupils to participate safely in school life.
Fatigue was one of the most frequently reported challenges, affecting concentration, engagement, and participation.
Whenever he tires… his attention wouldn’t be as good as other children. (P3)
After break or after dinner… once there was outdoor time, I noticed the slump. (P14)
Teachers responded by modifying activities, allowing rest breaks, providing additional support and encouraging hydration.
If we know they’re particularly tired, we might change activities or reduce physical demands. (P15)
Participants viewed inclusion as supporting meaningful participation across learning, physical activity, friendships, and wider school experiences while avoiding unnecessary exclusion.
Trying to make sure he’s okay but not make him any different from the rest… not single him out or embarrass him. (P2)
We’re trying to keep him involved in everything but take it low-key. (P2)
When full participation was not possible, teachers created alternative roles to maintain involvement.
If there’s something she doesn’t want to do… I just gave her a wee job… like a helper… setting up the equipment… just so she feels like she’s got a role. (P1)
Frequent absences due to surgery, appointments, or illness were also described as a significant educational challenge.
It’s not the medical, it’s the absenteeism. (P10)
Teachers adopted flexible approaches to minimise disruption to learning and maintain social connection during prolonged absences.
A lot of X’s work needed to be sent to her online because she physically couldn’t be in the building. (P5)
That made a MASSIVE difference to her looking forward to coming back in. (P9)
Participants also highlighted the importance of supporting pupils’ confidence and peer relationships.
He would be a bit more anxious… quieter than some of the other boys… we’re trying to build up that confidence. (P2)
Webinar evaluation findings
Findings from the teacher training webinar complemented the qualitative data by reinforcing the need for greater support for educational professionals working with pupils with CHD. Baseline knowledge and confidence were low, particularly regarding symptom recognition and responding to health concerns. Following the webinar, participants reported improved knowledge and confidence and valued practical, school-relevant content focused on real-world classroom situations. These findings closely aligned with the interview data and support the need for accessible resources that translate clinical information into practical guidance for schools.
Discussion
The main finding of this study is that educational professionals frequently support pupils with CHD despite having limited access to condition-specific information and minimal direct communication with healthcare professionals. Although participants demonstrated a strong commitment to promoting inclusion and well-being, they often relied on parents as the primary source of information and described uncertainty regarding symptom recognition, physical activity, and decision-making. Together, these findings suggest that educational professionals require practical, child-specific guidance and stronger communication pathways with healthcare professionals to support children and young people living with CHD.
Communication and information sharing played a central role in shaping teachers’ confidence and educational practice. Participants consistently described parents as the primary conduit of information between healthcare services and schools. While these relationships were highly valued, reliance on families introduced variability in the quality, consistency, and timeliness of information available to school staff. Similar findings have been reported in other chronic childhood conditions. Reference Miller, Condin, McKellin, Shaw, Klassen and Sheps26–Reference Gall, Buchhalter and Antonelli28 Although parents are well placed to describe their child’s experiences, they should not be expected to translate complex clinical information into educational guidance. Participants instead advocated structured communication pathways, including standardised post-clinic summaries, child-specific information, and opportunities for direct communication with healthcare professionals.
Importantly, participants did not simply request more information about CHD but practical, child-specific guidance that translated clinical knowledge into educational practice. Educational professionals were less concerned with understanding diagnoses than understanding how an individual child’s condition affected participation, learning, fatigue, symptom recognition, and well-being. Generic information was perceived as considerably less useful than guidance tailored to the child’s everyday functioning.
Limited access to relevant information contributed to uncertainty. Teachers described concerns about recognising symptoms, responding appropriately to health concerns, and balancing safety with inclusion. Similar findings have been reported among professionals supporting pupils with other chronic health conditions. Reference Olson, Seidler, Goodman, Gaelic and Nordgren13,Reference Selekman20,Reference Hinton and Kirk21,Reference West, Denzer, Wildman and Anhalt29 Confidence appeared to increase when teachers understood a child’s usual presentation and had access to personalised information that contextualised symptoms, such as baseline oxygen saturation. These findings reinforce the importance of individualised rather than diagnosis-specific guidance.
Teachers also identified absenteeism as an important consequence of CHD, particularly for children with more complex conditions. Recurrent absences associated with surgery, hospital appointments and illness were perceived to affect not only academic progress but also peer relationships and reintegration into school. Participants emphasised maintaining children’s social connectedness during prolonged absences, consistent with previous research demonstrating the educational impact of disrupted attendance in children with CHD. Reference Chong, Fitzgerald and Craig7,Reference McCusker, Doherty and Molloy19,Reference Farr, Downing, Riehle-Colarusso and Abarbanell30
Despite these challenges, educational professionals demonstrated a strong commitment to promoting participation and inclusion. Teachers described adapting learning activities, managing fatigue and supporting participation in physical activity and wider school life. Inclusion was viewed as meaningful participation rather than simply school attendance, with many teachers emphasising the importance of fostering independence and helping pupils communicate their own needs. However, many participants reported developing these approaches through personal experience rather than structured guidance, suggesting that support may vary considerably between schools.
The webinar findings complemented the qualitative data by demonstrating low baseline knowledge and confidence, particularly regarding symptom recognition and responding to health concerns. Improvements following the webinar suggest that targeted educational interventions can address some knowledge gaps. However, participants consistently emphasised the ongoing need for child-specific information and effective communication with healthcare professionals, indicating that training alone is unlikely to overcome the challenges identified.
Clinical implications and future research
These findings highlight the importance of recognising educational participation as a component of holistic CHD care. Educational professionals require practical, child-specific guidance to support symptom recognition, fatigue management, participation in physical activity and decision-making within school settings.
The findings also identify opportunities to strengthen communication between cardiac services and schools. Standardised post-clinic information summaries, greater involvement of cardiac liaison nurses, and accessible educational resources may help translate clinical information into practical classroom guidance while reducing teacher uncertainty. Such resources should complement, rather than replace, effective collaboration between families, schools, and healthcare professionals.
Future research should evaluate interventions designed to improve communication, teacher knowledge, and confidence, including teacher e-resources and structured school information summaries. Further work should examine whether these approaches improve educational participation, psychosocial well-being, and quality of life for children and young people living with CHD.
Strengths and limitations
Participants were recruited through voluntary response methods and may therefore represent educational professionals with a particular interest in supporting pupils with CHD. The study was conducted within a single jurisdiction, and the sample consisted predominantly of female class teachers, which may limit transferability to other educational settings and professional groups.
The study explored only the perspectives of educational professionals and relied on self-reported experiences. Future research should incorporate the views of healthcare professionals to better understand opportunities for strengthening communication between healthcare and education. The webinar evaluation assessed only short-term changes in knowledge and confidence, and further research is needed to determine whether these improvements translate into changes in classroom practice and educational outcomes.
Despite these limitations, this study provides novel insights into the experiences and support needs of educational professionals and identifies practical opportunities to strengthen collaboration between healthcare services and schools.
Conclusion
Educational professionals play a central role in supporting children and young people living with CHD but often do so with limited access to practical, child-specific guidance. Improving communication between cardiac services and schools, alongside accessible educational resources, may reduce uncertainty, strengthen teacher confidence, and promote more consistent, inclusive educational support. As survival rates continue to improve, educational participation should be recognised as an important component of holistic CHD care.
Acknowledgements
The authors thank the educational professionals who participated in this study and shared their experiences. We also thank the Children’s Heartbeat Trust for supporting participant recruitment.
Financial support
The study 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.
Ethical standard
This study was approved by the Queen’s University Belfast Faculty of Engineering and Physical Sciences Research Ethics Committee (Reference: EPS 23_47) and was conducted in accordance with the Declaration of Helsinki. All participants provided informed consent.
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