Health care transitions for adolescents with congenital heart disease: patient and family perspectives
Section snippets
Barriers to transition
According to Betz [2], “[T]he goal of transition care is to foster the achievement of responsible self-care and linkages to adult health care services.” It is expected that health care providers will assist the adolescent and family to move smoothly from pediatric to adult services, gradually preparing the young person to take on more responsibility for self-management of CHD. Unfortunately, there are many barriers to the transition process. Fragmentation of care between primary and specialty
Transition in adolescents with CHD and their families
Transition is a multifaceted process. Higgins and Tong [5] recently proposed that transition for adolescents with CHD needs to be understood from four perspectives: the patient, the parents, the pediatric cardiologist, and the adult cardiologist. However, to fully understand the patient and parent perspectives, one must fully incorporate the additional contexts of developmental progression and the impact of chronic illness on adolescent and family development.
Nursing interventions
Transition needs to be presented early in a patient's life [20]. Although CHD is still a life-threatening disease, most patients born today with CHD can expect to survive to adulthood. The concept of transition to adult care needs to be introduced early and presented to the patient and family as a normal progression of care.
Resources
Fortunately, there are several resources available to provide information and support as patients and families move through the transition process. In addition to the health passport, the Internet has a variety of websites for teens to explore in their effort to learn more about their condition, treatments, and procedures. In the study by Kools et al [4], several young adults used the Internet to learn more about their heart disease and surgery, and some even gathered information independent of
Summary
Advances in medical management and surgical treatment have improved the longevity and quality of life for patients with CHD. However, meeting the health care needs of this growing population has not kept pace with the advances in technology. Adolescents with CHD are caught between both childhood and adulthood and pediatric and adult cardiology. As health care providers develop strategies to meet the special health care transition needs of this group, patient and family perspectives must be
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Transition Readiness in Adolescents and Young Adults with Heart Disease: Can We Improve Quality of Life?
2019, Journal of PediatricsCitation Excerpt :With respect to self-management behaviors, although we observed an improvement at follow-up, potentially reflecting advancing age, self-management scores remained low and were not significantly associated with QOL at follow-up. It has been previously suggested that parental anxiety and overprotectiveness may result in parents' reluctance to shift greater responsibility for self-management to adolescents and emerging adults.22,23 In the presence of parent management, the lack of self-management may not impact QOL.
Young people with congenital heart disease — Transitioning to adult care
2018, Progress in Pediatric CardiologyCitation Excerpt :Van Deyk et al. [24] found that adolescents with CHD had poor knowledge regarding their heart condition including the name of their heart defect, reasons for follow-up, the effects of competitive sports, symptoms that reflect deterioration of their heart disease, appropriate contraceptive methods, and the risks of pregnancy. Many young adults with CHD also have misconceptions about safe, desirable levels of physical activity, and have lower activity levels than recommended for their cardiac conditions [25,26]. After completion of a transition readiness assessment, Uzark et al. [22] reported that overall 66% of 13–25 year olds requested information from a checklist, 73% of patients ≥ 18 years of age.
Transitioning from pediatric to adult care after thoracic transplantation
2017, Journal of Heart and Lung TransplantationAssessment of Transition Readiness in Adolescents and Young Adults with Heart Disease
2015, Journal of PediatricsTransfer to Adult Care-Experiences of Young Adults with Congenital Heart Disease
2015, Journal of Pediatric NursingCitation Excerpt :Some considered that they had grown as a person due to the private conversations with the cardiologist while others still felt the need for their parents' help in understanding the information provided. Research indicates that healthcare staff should encourage and facilitate young people to play a more active role from an earlier age in order to make them more independent of their parents (Hays, 2015; Knauth, Verstappen, Reiss, & Webb, 2006; Tong & Kools, 2004). Awareness of the implications of changes can facilitate responsibility and involvement in care and treatment (Heery et al., 2015; Meleis et al., 2000).
Concept Analysis of Health Care Transition in Adolescents with Chronic Conditions
2015, Journal of Pediatric NursingCitation Excerpt :These revolve around the achievement of autonomy and independence in health-related decision-making and self-care. Variations of the same theme include self-sufficiency, self-management, mastery, competence, and shared-care (AAP, 2013; Betz, 1998a, 1998b; Betz, 2000; Fleming et al., 2002; Hergenroeder, 2002; Higgins & Tong, 2003; Kelly et al., 2002; Luther, 2001; Okumura et al., 2014; Swallow et al., 2013; Tong & Kools, 2004; Towns & Bell, 2010)). Other noted consequences include normalization, reassignment of roles and responsibilities, and reintegration into a new system of adult health (Kelly et al., 2002).