Educational and behavioral issues in transitioning from pediatric cardiology to adult-centered health care
Section snippets
Background
Over the past decades, life expectancy of children born with congenital heart disease has increased significantly. Currently, approximately 90% of these children are expected to reach adulthood because of improved diagnostic, medical, surgical, and interventional measures. The broadened life span of patients with congenital heart disease implies that such patients present to pediatric, adolescent, and adult care facilities. The complexity of congenital heart disease requires health care
Parental knowledge
During infancy and childhood, education is appropriately provided to parents because medical professionals entrust the parents of children with congenital heart disease, not only with their care but also with the responsibility of explaining the illness to their child [8] and to other health care providers [9]. Studies [10] show that parents agree that they perceive themselves to be primarily responsible for keeping their child informed about the condition. Parents are, however, rarely advised
Children's and adolescents' understanding of illness
Research on children's and adolescents' understanding and knowledge of congenital heart disease is more limited (Table 2). In a series of studies [8], [17], [19], [27] of children ranging in age from 8 to 13 years, 30% to 69% of the children were able to name their heart defect, and 74% were knowledgeable about the medication regimen. Understanding of endocarditis and how to prevent it was extremely poor [27]. In one study [19], knowledge about prophylactic measures, for example, taking
Patient information
The evidence of children's poor (or lack of) knowledge about congenital heart disease combined with the adolescents' increasing need to take responsibility for their health care, compel us to provide these individuals with sound patient education. Topics to be included in structured patient education programs during the transitional phase of care must be adapted to fit the life stage and must include issues that become relevant in the teenage years. It is also imperative to shift the focus of
The role of advanced practice nurses
The transition from the pediatric cardiology clinic to the adult health care service is a particular challenge, requiring comprehensive care by specialized health care professionals. These health care professionals should be properly trained and educated for the management of these individuals, to be able to address the multidimensional problems experienced by the patients.
With respect to educational and behavioral issues, advanced practice nurses (clinical nurse specialist, nurse practitioner,
Summary
It is assumed that when they begin growing up, a child with congenital heart disease will take personal responsibility for his or her care. For this purpose, patients need sufficient knowledge on the heart defect, treatment, and measures to prevent complications. However, empirical studies indicated that the levels of knowledge and understanding of both parents and children with congenital heart disease are poor. Therefore, sound patient education is imperative, particularly when patients are
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Cited by (37)
Caring for a teen with congenital heart disease
2014, Pediatric Clinics of North AmericaThe Toronto congenital heart disease transition task force
2012, Progress in Pediatric CardiologyCitation Excerpt :Although adolescence is typically the focus of transitional care, the post-transfer period should not be ignored. Ongoing patient and parent education is an important element of a successful transition [1,2,4,19]. A comprehensive education curriculum includes matters related to a patient's CHD diagnosis and treatment as well as wider lifestyle implications (e.g., family and career planning).
The whole adult congenital heart disease patient
2011, Progress in Cardiovascular DiseasesCitation Excerpt :A systematic approach to education should be undertaken by the beginning of adolescence. Programs are encouraged to implement a thorough education curriculum with medical information including cardiac diagnoses, treatment history, medications, endocarditis prophylaxis, strategies to reduce complications, contraception, and family planning considerations.14,21,39 The importance of lifelong cardiac surveillance must be emphasized.
Adolescents' understanding of their congenital heart disease on transfer to adult-focused care
2010, American Journal of CardiologyCitation Excerpt :Transition programs should be implemented to prepare adolescents for this task.18–21 A critical element of these transition programs is developmentally appropriate education for patients18,22 with the aim of improving the patients' level of knowledge and increasing their awareness of adopting adequate health behaviors, while taking the transition through puberty into account. With the exception of one study that assessed bacterial endocarditis knowledge,15 studies that have specifically investigated the level of knowledge of adolescents with CHD, to the best of our knowledge, do not exist.
Congenital cardiovascular nursing: Preparing for the next decade
2009, Cardiology in the Young
This work was supported in part by the Belgian National Foundation for Research in Pediatric Cardiology.