CHD is the most common birth defect, with approximately nine in 1000 newborns being affected.Reference van der Linde, Konings and Slager 1 The life expectancy of patients with CHD has increased substantially during the past several decades.Reference Moons, Bovijn and Budts 2 Many patients, however, struggle with the medical, psychosocial, and behavioural challenges that occur from childhood to adulthood.Reference Karsdorp, Everaerd, Kindt and Mulder 3 – Reference Claessens, Moons and de Casterle 5 Therefore, problems associated with healthcare of children and adolescents with CHD have become critical.Reference Chen, Su, Chiang, Shu and Moons 6 As children and adolescents spend most of their time in school, health providers should consider school-related adjustment in children and adolescents with CHD. School-related adjustment refers to efforts for coping with stress from various aspects such as school instruction, school environment, relationships with friends and teachers, and school life.Reference Kim 7 The factors affecting adolescents’ school-related adjustment are multi-factorial and include self-concept, resilience, learning motivation, parental rearing behaviours, and attachment with teachers;Reference Bae 8 therefore, studies on various topics associated with school-related adjustment in children and adolescents with CHD are needed.
After entering school, children and adolescents with CHD realise that they differ from their peers because they may be excluded from certain physical activities such as gym class.Reference Lee and Kim 9 In addition, most children and adolescents lacked knowledge about their disease, because healthcare providers gave information about their disease only to their parents.Reference Ahn, Lee and Choi 10 Feeling different from their peers and a lack of knowledge about CHD make adolescents hesitate to disclose their disease to friends in school. However, it is important for patients with CHD to be open about their disease to effectively manage CHD because they should periodically visit hospitals for follow-up. In addition, there is limited research about school-related adjustments in children and adolescents with CHD, even though this is a very important topic. The purpose of this study was to evaluate school-related adjustment, depending on the school level and disclosure of disease, in children and adolescents with CHD.
Methods
Design
This study was designed as a descriptive and exploratory study to examine school-related adjustment in children and adolescents with CHD.
Setting and samples
Ethics approval for human database research was obtained from the Institutional Review Board of hospitals where this study was conducted. A total of 221 patients were recruited from 5 January to 27 February, 2015, and were asked to complete a self-reported questionnaire. Among all, 16 patients failed to complete the self-reported questionnaire; therefore, a total of 205 patients were included in this study. A total of 205 children and adolescents, 7–18 years of age, who were followed-up at two different paediatric cardiology clinics at university-affiliated tertiary medical centres, were enrolled in this study. Our questionnaire was explained by two research assistants to the participating children and adolescents, as well as their parents. After acquiring consent from patients and their families, we obtained self-reported questionnaires from the patients.
Instruments
Children and adolescents with CHD completed a self-reported questionnaire, which included standardised instruments to measure school-related adjustment and general characteristics.
School-related adjustment
School-related adjustment was measured using a scale developed by Kim.Reference Kim 7 The school-related adjustment scale was developed targeting 650 elementary-, middle-, and high-school students, and the reliability coefficient of that study was 0.95. It is comprised of 41 items and five subscales. The subscales consist of school environment-related adjustment (nine items), school teacher-related adjustment (nine items), school instruction-related adjustment (eight items), school friends-related adjustment (eight items), and school life-related adjustment (seven items). Factor analysis was used to verify the validity of school-related adjustment.Reference Kim 7 The percentage of variance for evaluating the validity of the five subscales was 36.2, 15.1, 11.0, 9.6, and 7.3%, respectively, as listed above, which indicates that this scale had power of explanation.Reference Kim 7 This self-report instrument uses a five-point Likert scale (1: strongly disagree, 5: strongly agree), and the scores range from 41 to 205. The reliability coefficient in this study was 0.96. Higher scores indicate the students’ better adjustment to school.
General characteristics
Patient age, sex, school level, birth order, religion, experience of being bullied, perceived economic status, NYHA class, type of CHD, and disclosure of disease were assessed. Disclosure of disease was measured using the question “do your friends know that you have a congenital heart disease?”, and the corresponding responses were categorised as nobody (no one knows it besides my family), anybody (some of the best friends know it), and everybody (most people know it). Types of CHD were categorised as simple, moderate severity, and great complexity using the Task Force 1 of the 32nd Bethesda Conference of the American College of Cardiology classification.Reference Warnes, Liberthson and Danielson 11 Marital status and parental level of education were also assessed as parental characteristics.
Data analysis
The data were analysed using the SPSS 21.0 software. Descriptive statistics were used to define patients’ general characteristics and their school-related adjustment. Student’s t-test, analysis of variance, and Scheffe’s tests were conducted to identify the differences in school-related adjustment according to general characteristics. A univariate general lineal model was run to analyse the school-related adjustment score, according to school level and disclosure of their disease.
Results
General characteristics of patients and their parents
The demographics and disease-related characteristics of the patients are shown in Table 1. The median age was 13 years (with a range of 7–18 years) and 114 patients (55.6%) were male. Among all, 87 patients (42.4%) were elementary-school students, 53 patients (25.9%) were middle-school students, and 65 patients were high-school students. Most of the participating adolescents lived with both parents, and 14 (6.8%) patients lived with a single parent. Among the patients’ parents, 135 (65.9%) fathers and 99 (48.3%) mothers had a college level or beyond educational status. A total of 178 patients (86.8%) self-described as having above average economic status, and 91 patients (45.9%) practised religion. In addition, 19 patients (9.3%) had the experience of being bullied and 31 (15.1%) patients reported that nobody knew about their disease, whereas 174 (84.9%) patients reported that anybody or everybody knew about their condition. Disease complexity was classified as the three categories stated earlier in this article, and 100 patients (48.8%) had greatly complex CHD. In addition, 138 patients (67.3%) were classified as the NYHA functional class I, and eight patients (3.9%) were classified as the NYHA functional class III.
General characteristics of patients and parents.
n=205
Relationships between school-related adjustment and general characteristics
The average school-related adjustment score was 151.34 and ranged from 85 to 205. Elementary-school students scored among the highest levels of school-related adjustment, and high-school students scored the lowest levels of school-related adjustment (p<0.01). Adolescents who indicated that they practised a religion scored higher levels of school-related adjustment compared with those who did not have a religion (p=0.03). The school-related adjustment scores of adolescents who had the experience of being bullied were significantly lower than those of adolescents who did not have the experience of being bullied (p<0.01). The school-related adjustment score was also significantly related to parents’ education level (p<0.01) (Table 2).
School-related adjustment according to general characteristics.
n=205
School-related adjustment according to school level and disclosure of disease
Figure 1 shows the results of the general lineal model analysis. We assigned age, religion, experience of being bullied, and parents’ education levels as covariates to investigate the relationship between school-related adjustment, school level, and disclosure of disease; this is because school-related adjustment was found to be significantly related to age, religion, experience of being bullied, and parents’ education levels. School-related adjustment scores were significantly different according to school level and disclosure of disease (p<0.001) with regard to age, religion, experience of being bullied, and parents’ education levels as covariates. In particular, the school-related adjustment scores of patients who did not disclose their disease dropped greatly in high school (Fig 1).
School-related adjustment according to school level and disclosure of disease.
Discussion
The mean score of school-related adjustment in children and adolescents with CHD in this study was 151.34. The mean score of patients in this study was higher compared with general students in another study using the same measurement for school-related adjustment.Reference Kim 7 , Reference Lee 12 The mean scores of school-related adjustment were 103.3 in a previous study on Korean elementary-school studentsReference Lee 12 and 119.43 in a study on Korean elementary-, middle-, and high-school students.Reference Kim 7 Consistent with this study, a previous study using a systematic review revealed a positive outcome from self-reported psychological functioning in children and adolescents with CHD.Reference Latal, Helfricht, Fischer, Bauersfeld and Landolt 13 In addition, school-related adjustment was not associated with type of CHD. As the majority of patients had received surgery to completely correct their CHD and reported NYHA class I or II, school-related adjustment was not related to the type of CHD. An earlier study found that children with CHD who received a palliative operation and did not undergo a complete correction were more withdrawn and had more social problems compared with general children.Reference Casey, Sykes, Craig, Power and Mulholland 14 Therefore, if children and adolescents with CHD receive total correction surgery and are continuously managed, the type of CHD would not be a predictor of school-related adjustment because of the advanced treatment and management of CHD.
This study found that school-related adjustment scores decline over time such that high-school children with CHD have the lowest adjustment scores. The analysis indicated that these patients tended to have increasing difficulty in adjusting as they advanced through school. The majority of Korean parents think that the most important role of children and adolescents is to enter university, and they further hope that their children enter a prestigious university.Reference Ryu 15 Therefore, the aims of education for middle and high school in Korea are not focussed on developing self-identity but are instead focussed on completing requirements for entering university.Reference Yoo, Kim and Shin 16 There is a great deal of pressure for Korean children and adolescents to study for college entrance exams, which increases until students enter college. Unfortunately, children and adolescents with CHD have difficulty catching up with their studies after returning from long hospitalisations.Reference Lee and Kim 9 Accordingly, children and adolescents with CHD have difficulty adjusting as they advance through school until they enter college.
Our findings also indicate that the school-related adjustment score of patients who did not disclose their disease decreased significantly in high school. Children and adolescents with CHD begin to feel that they are different after entering school, which leads them to feel isolated.Reference Lee and Kim 9 , Reference Berghammer, Dellborg and Ekman 17 They tend to prefer not to tell others about their diseaseReference Berghammer, Dellborg and Ekman 17 because they fear being pitied.Reference Lee and Kim 9 Therefore, it is difficult to build a relationship with peers; this is a problem because establishing close and meaningful relationships with peers is an important developmental task for adolescents.Reference Steinberg and Morris 18 A lack of such intimate peer relationships may result in feelings of loneliness, defined as the negative emotional response to a discrepancy between one’s desired and actual social network.Reference Freitas, Castro and Sarmento 19 Patients who tried to hide their disease had difficulties establishing close and meaningful relationships with peers, which increased school maladjustment. Therefore, it is important for adolescents with CHD to be able to accept themselves, especially as they enter high school to prevent the significant decline in school-related adjustment.
Children and adolescents with CHD should be well informed about their disease and treatments in order to accept themselves. In addition, accurate knowledge of CHD is associated with improved resilience and health-related quality of life.Reference Lee, Kim and Choi 20 , Reference Wang, Hay, Clarke and Menahem 21 Patients with knowledge about CHD and treatment have better compliance and feel a stronger sense of responsibility for their own health.Reference Canobbio 22 However, some adolescents reported that they did not have any opportunity to obtain the necessary information about their disease, because they did not talk about their illness with their family or their healthcare provider.Reference Lee and Kim 9 Clear and accurate information about their condition, given in a developmentally appropriate manner, is a resource that will help adolescents with CHD understand their condition as well as their limitations and abilities in their lives.Reference Birks, Sloper, Lewin and Parsons 23 Knowledge and understanding of their cardiac condition needs to be addressed by health professionals using specific, age-appropriate education programmes to meet the specific psychological needs, as has been done for parents that have a newborn or infant with CHD.Reference Caldera, Ha and Menahem 24 Therefore, transition programmes that provide peer support, confidential counselling, disease knowledge, and management are important for middle-school students with CHD, in order to help them achieve self-acceptance, especially before they begin high school.
Limitations
The generalisability of this study would be limited because the instrument for measuring school-related adjustment was developed for Korean adolescents.
Conclusions
This study showed that school-related adjustment scores were significantly related to school level and disclosure of disease. School-related adjustment scores decline over time, such that high-school children with CHD have the lowest adjustment scores. The school-related adjustment score of patients who did not disclose their disease decreased significantly in high school. Therefore, it is important for healthcare providers to plan appropriate educational transition programmes for middle-school students that address health conditions and self-acceptance, especially before students enter high school.
Acknowledgements
Authors’ Contributions: Y.M., T.J., and J.Y. collected the data; Y.M. and S.L. performed the statistical analyses; Y.M. wrote the draft; S.L. obtained funding and designed the study and wrote the final version of the manuscripts. All the authors reviewed and approved the final version of the manuscript.
Financial Support
This study was supported by the Basic Science Research Program through the National Research Foundation of Korea funded by the Ministry of Education, Science, and Technology (NRF-2012R1A1A3007989).
Conflicts of Interest
None.
Ethical Standards
The authors assert that all the procedures contributing to this study comply with the ethical standards of the relevant national guidelines on human experimentation and with the Helsinki declaration, and have been approved by the institutional ethics committees at SHYU, Korea.
