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Quality of Life in Childhood with Congenital Heart Disease
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The objective of this study is to identify the socio-educational needs in childhood with congenital heart disease. Our study was carried out using a multi-method, it combines quantitative and qualitative data collected in Catalonia (Spain). The results obtained from the questionnaires and interviews with education professionals, children with congenital heart disease and their families have enabled us to establish categories. Analysis of these has provided knowledge of their socio educational needs. This article highlights the need to consider this impact as well as its psychosocial and educational effect, and the need to focus school education on improving their quality of life.
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... When it comes to meeting the needs of children with CHD in relation to schooling and, therefore, social learning, it is important to consider three key aspects: (1) professionals, who must have the training needed to fulfill their pedagogical role, whether in schools or hospital classrooms (González-González et al., 2021); (2) parents, who have a central role to play in supporting their child's schooling and socialization (Dalir et al., 2020); and (3) the children themselves, with their specific individual and social needs (Farr et al., 2018;Violant et al., 2012). Consequently, the aim of this study was to explore the views of children, parents, and professionals regarding the extent to which children with CHD are afforded the same educational and social opportunities as their healthy peers. ...
... However, as Immelt points out (Immelt, 2006), participation in age-appropriate tasks and activities is essential for children's well-being and the development of self-esteem. According to Violant et al. (2012), the relationships that children with CHD establish with peers depend more on the child's personality and social skills than on the F I G U R E 1 Core category "Children with CHD experience exclusion from peer group social learning activities". CHD, congenital heart disease. ...
Educational attainment is closely associated with health. The objective is to explore the extent to which children and adolescents with congenital heart disease (CHD) are afforded the same educational and socialization opportunities as their healthy peers. We used a qualitative phenomenological design with convenience sampling. Data gathered 27 semistructured interviews: children with CHD ( n = 9), parents ( n = 10), and professionals ( n = 8) in Catalonia, Spain. Interview transcripts were coded using the constant comparative method and analyzed using ATLAS.ti software. The analysis revealed three 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 diversity needs of children with CHD; (3) Parents and teachers have low expectations regarding the academic achievement of a child with CHD. Further application of the constant comparison method yielded a core theme: (4) Children with CHD experience exclusion from peer group social learning activities. Further efforts are needed for more effective collaboration and coordination between educational and health professionals to provide support for teachers and families and enable children to be better integrated within schools.
... Personalized actions to improve communication with youth with CMC and with their caregivers are necessary to improve their perception of family well-being and help them display adaptive coping strategies [102,103]. The literature includes various studies addressing the impact of hospitalization in CMC from the youth's point of view (e.g., [104]) on their needs (e.g., [105]) and supportive care (e.g., [106]). However, a gap still exists with regard to some concrete issues, such as hospitalization and readmission [107] or isolation [104], and the same is true for suffering, spiritual pain, or emotional stress regarding further procedures-especially those involving needle procedures [108]. ...
Well-being in children with a complex medical condition (CMC) impacts the way they view and communicate with their immediate environment as well as their development, and it is thus necessary to inquire about the contextual issues and different needs that a CMC carries. This pilot study aimed to identify factors of pediatric well-being from the experience of hospitalization and convalescence of youth with CMC and their caregivers, in a cross-sectional analysis using a selective methodology complemented by an indirect observational methodology. We analyzed the quality of life and well-being of youth with CMC using a validated KINDLR questionnaire. We collected 35 surveys: 11 from youth with CMC and 24 from caregivers from Spain. We focused the analysis on sociodemographics, well-being perceptions, and coping strategies variables. The results show that children aged between 3 and 6 years and their caregivers scored physical well-being the lowest out of all dimensions of well-being, and they scored family well-being the highest. Moreover, youth between the ages of 7 and 17 years and their caregivers scored school-related well-being the lowest. Coping strategies to deal with stressful situations differ between children and caregivers. While children mainly engage in social withdrawal, caregivers engage in cognitive restructuring and expressing emotions. However, we did not find a relationship between coping strategies and well-being perceptions. These results highlight the need to facilitate communication spaces with both families and health professionals where the voice of children is considered.
BACKGROUND:
Personal habits of children and adolescents related to healthy body image (BI) are influenced by various determinants in the micro- and macroenvironment. These include attitudes and behaviors about eating; exercise and physical appearance modeled by parents, teachers, and peers; as well as opportunities to learn new habits and social praise for healthy choices. The coordinated school health program (CSHP) is compatible with the 5 levels of an ecological approach to developing new health behaviors.
METHODS:
Authors systematically applied the ecological model to all 8 components of coordinated school health. Next, strategies for each of the components were developed using the professional literature as well as author expertise in the areas of health education, exercise science, and dietetics.
RESULTS:
For each strategy, applicable health and physical education standards, as well as goals for each strategy and additional Web resources, were provided to assist educators and administrators in supporting healthy BI among students.
CONCLUSIONS:
Educators may effectively use a coordinated approach to guide multiple intervention activities aimed at increasing healthy habits among adolescents and their families. The strength of the CSHP is its collaborative nature with active participation by students, faculty members, family caregivers, agency professionals, community residents, and health care providers.
To evaluate changes in cognitive and academic functioning following cardiac surgery in children with congenital heart disease.
A prospective cross sectional study in which patients were assessed immediately before treatment and 12 months later.
Three groups of children aged 3.5-17 years: a group with congenital heart disease awaiting surgery, another awaiting bone marrow transplantation, and a healthy comparison group.
Intelligence quotient and measures of academic attainment, evaluated with the British Ability Scales.
Preoperatively, children with cyanotic lesions showed deficits in comparison with those with acyanotic lesions. Postoperatively, children with cyanotic lesions showed a deterioration in performance and achieved significantly lower scores than those with acyanotic lesions. While there were significant differences between the congenital heart disease and bone marrow transplantation groups preoperatively, these were no longer apparent at follow up.
In contrast to previously published findings, the present results suggest that cardiac surgery does not result in early postoperative improvements in cognitive function for children with congenital heart disease. The nature of the cardiac lesion continues to affect cognitive and academic performance, even after surgery.
Health-related quality of life in children with congenital heart disease (CHD) was compared to that of healthy children. Furthermore, agreement between child and parent reports was examined. In addition, differences in quality of life related to the severity of CHD were evaluated. One hundred children with CHD aged between 8-18 years and their parents answered a health-related quality of life-questionnaire during their visit to the paediatric cardiology outpatient department. CHD children reported reduced motor functioning and autonomy compared to healthy children. Parents of children with CHD reported their children to have a reduced quality of life in the domains of: motor functioning, autonomy and cognitive functioning. Agreement between child and parent reports was moderate. Children systematically reported lower health related quality of life on the domain of positive emotions than did parents. Health related quality of life in children with CHD appeared not to be influenced by severity of the disease. In conclusion, regardless of the severity of the disease, children with CHD reported their health related quality of life on several domains to be lower than that of healthy children. This means that on several domains, the emotional impact of problems in health status is greater for children with CHD than for healthy children. When CHD patients visit the clinic, it is important that physicians actively ask patients as well as parents about the child's motor functioning, autonomy and cognitive functioning. Children with problems in these domains can then be identified, and psychological interventions can take place at an early stage.
To determine relationships between physical fitness and academic achievement in diverse, urban public school children.
This cross-sectional study used public school data from 2004 to 2005. Academic achievement was assessed as a passing score on Massachusetts Comprehensive Assessment System (MCAS) achievement tests in Mathematics (fourth, sixth, and eighth grade, n = 1103) and in English (fourth and seventh grade, n = 744). Fitness achievement was assessed as the number of physical fitness tests passed during physical education (PE). Multivariate logistic regression analyses were conducted to assess the probability of passing the MCAS tests, controlling for students' weight status (BMI z score), ethnicity, gender, grade, and socioeconomic status (school lunch enrollment).
The odds of passing both the MCAS Mathematics test and the MCAS English test increased as the number of fitness tests passed increased (p < .0001 and p < .05, respectively).
Results show statistically significant relationships between fitness and academic achievement, though the direction of causation is not known. While more research is required, promoting fitness by increasing opportunities for physical activity during PE, recess, and out of school time may support academic achievement.
With the recent dramatic decline in mortality rates of infants undergoing open-heart surgery (OHS), there is growing concern regarding neurodevelopmental sequelae. Outcome studies have primarily focused on delineating developmental impairments; however, the impact on function and family burden has not been investigated. The objective of this study was to determine the prevalence of functional limitations and burden of care of young children with congenital heart defects (CHD) after OHS.
One hundred thirty-one eligible infants with CHD undergoing their first OHS were recruited prospectively. Patients were assessed pre- and postoperatively, and again 12 to 18 months after surgery. Functional assessments included the WeeFIM (Functional Independence Measure) and the Vineland Adaptive Behavior Scale.
For the WeeFIM, mean quotients were 84.3 +/- 23.8 (self-care), 77.2 +/- 30.0 (mobility), and 92.4 +/- 27.8 (cognition), with an overall quotient of 83.8 +/- 23.4. Only 21% of the cohort was functioning within their expected age range. Moderate disability was noted in 37%, while only 6% demonstrated a severe disability. For the Vineland scale, mean score for daily living skills was 84.4 +/- 17.6, and 80.3 +/- 15.9 for socialization. Functional difficulties in daily living skills were documented in 40%, whereas >1/2 had poor socialization skills. Factors enhancing risk for functional disabilities included perioperative neurodevelopmental status, microcephaly, length of deep hypothermic circulatory arrest, length of stay in the intensive care unit, age at surgery, and maternal education.
The high prevalence of functional limitations and dependence in activities of daily living is currently underappreciated in the clinical setting, and deserves additional attention by pediatricians and developmental specialists.
We examined differences in distress (i.e., depression, anxiety, and somatisation) and hopelessness (e.g., suicide ideation) among parents of congenital heart disease (CHD) children (PCCHD, n=1092), parents of children with other diseases (PCOD, n=112), and parents of healthy children (PHC, n=293). In addition, we determined the proportion of parents in each group whose scores in distress and hopelessness, respectively, exceeded norms for psychiatric outpatients (POPN) and depressed people, and identified determinants of distress and hopelessness among all parents, and the PCCHD.
The parents completed a questionnaire about such areas as distress and hopelessness. The design was cross-sectional and data were collected during 20 consecutive days.
PCCHD were generally at higher risk of distress and hopelessness. A significant number of parents, in particular PCCHD, reported levels of distress and hopelessness within/above POPN and depressed people, respectively. Mothers within all parent groups had higher levels of distress and hopelessness than fathers, with the highest levels among mothers of children with CHD compared to mothers in the other groups. Fathers of children with CHD were doing worse than fathers belonging to the other groups. There were no differences between PCOD and PHC. Variables such as employment status and financial situation explained more of the variation in distress and hopelessness among parents than the diseases of their children.
We corroborated previous findings and provide new insights into the experiences of PCCHD that may be of importance when considering intervention. Further research concerning the parents, in particular PCCHD, at risk of developing psychosocial problems is needed.
Congenital heart disease (CHD) is often associated with intellectual, developmental, and academic late effects related to the diagnosis itself and treatment. This literature review examines what is currently understood about these intellectual and academic deficits. It appears that children with CHD, and particularly those with cyanotic CHD, are at risk for significant impairments in visual spatial skills, visual motor skills, and overall processing speed. Early neurocognitive interventions, especially with younger children, may prove beneficial for remediating some of these deficits.
Our purpose was to evaluate the impact of suspicion or confirmation of heart disease on the physical and psychosocial health of children. We utilized the Child Health Questionnaire (CHQ PF-50). Children ages 5 to 18 years attending a general cardiology clinic were eligible. Those with primary noncardiac diagnoses unrelated to heart disease were excluded. Children with similar conditions were grouped together for analysis. Group and subgroup means were compared to a U.S. population normative sample using the two-sample t test. The CHQ was administered to 321 patients (median age, 10.6 years). Overall, parents reported mean Physical and Psychosocial Summary Scores comparable to those for the normative sample (mean, 51.5 vs 53.0, p = 0.04; mean, 52.3 vs 51.2, p = 0.10). There was a trend toward worse physical health in most subgroups, especially those with cardiomyopathy (CM) (46.5; p = 0.01), and a comparable trend toward better psychosocial health except in those requiring major interventions. In subscale analyses, most subgroups reported worse Physical Functioning than the normative sample, especially CM (85.1 vs 96.1; p = 0.02). Parents of children with CM (53.2 vs 73.0; p = 0.002) and the intervention subgroups (except minor) reported worse General Health Perceptions. Parents experienced increased Parental Impact-Emotional, especially parents of children undergoing evaluations for chest pain (62.5 vs 80.3; p = 0.007). Most parents reported comparable or better health for the Family Cohesion and Bodily Pain subscales. Generally, parents of children attending a cardiology clinic report physical and psychosocial health comparable to that for the general U.S. population. However, diagnosis or confirmation of heart disease resulted in worse physical functioning and health perceptions and a significant negative emotional impact on parents.
Children with congenital heart disease (CHD) commonly experience delayed growth. Because growth and development are closely related, both should be considered when a child's progress is examined.
This paper reports a study to evaluate and compare the growth and development of preschool children with CHD to those of normal preschool children.
The heights and weights of 42 preschool children with CHD and 116 normal preschool children were compared with standard growth curves. Differences in development of personal and social skills, fine motor skills and adaptability, language, and gross motor skills were evaluated. Developmental skills were assessed using the Denver Developmental Screening Test II.
A significant difference was found in both body height (P < 0.05) and weight (P < 0.05) between the two groups. More preschoolers with congenital hear disease were below the 50th percentile in height (P < 0.05) and weight (P < 0.001). Preschoolers with CHD had more suspicious interpretations than non-CHD preschoolers, specifically in the language (P < 0.01) and gross motor sections (P < 0.001). Nevertheless, there were two items in the personal-social section and one in the language section on which the children with heart disease passed in the range of 55.6-63.2%. Problems were encountered with the Denver II test because of differences in language, culture and childrearing methods between Taiwanese and Western societies. These cultural differences must be considered when the test is used to assess development.
Learning about the growth and developmental differences between children with CHD and normal children may help parents of the former to detect problems associated with delayed growth and development earlier. These children and their families should have the opportunity to participate in a long-term, follow-up programme that provides information and encourages developmental progress. The results could serve as a reference for those in both clinical and community workers who provide nursing care to children with CHD.
The aim of this study was to evaluate and compare the self-concept of school-aged children with congenital heart disease to those of normal school-aged children. The primary objective was to analyse results of the Self-Concept Scale questionnaire administered to children with congenital heart disease aged 9-12 years. Sixty-four children with congenital heart disease (study group), and 71 without congenital heart disease (control group), completed the questionnaire.
Little attention has focused on school-aged children with congenital heart disease who are in the important stages of developing self-concept.
The mean score on the Physical self-concept of the Self-Concept Scale was significantly lower for the study group than the control group (P < 0.05). No significant differences were observed between children with congenital heart disease and normal children in terms of family self-concept, school self-concept, appearance self-concept, emotional self-concept and general self-concept for the Self-Concept Scale.
Nurses should use the study findings to encourage positive self-concept development and improve their patient education about physical activity before the child is discharged. Thus, children with congenital heart disease could leave the hospital with a clear understanding of their body and condition, and how it affects daily life.
The results of this study may provide more holistic views on self-concept for clinical nurses working with children who have congenital heart disease and their families and for school nurses working with elementary school children.