Transition from child healthcare to adult healthcare for adolescents with congenital heart disease

Abstract: The life-prospects for adolescents with congenital heart disease (CHD) have improved, and today more than 90% survive to adulthood and need to continue their care into adulthood. During adolescence, the adolescents needs to step by step take over the responsibility for their care from their parents. This shift in responsibility seems to be difficult for both the adolescent and the parents. Many adolescents have described themselves as ill prepared for the transfer, and it has also been shown that adolescents often lack knowledge about their heart condition and the need for medical follow-up. Further, the parents might need support in how to hand over this responsibility to their child. The overall aim of this thesis was to examine the transition for adolescents with congenital heart disease and their parents prior to the transfer from pediatric health care to adult health care The thesis consists of four studies. The participants were adolescents 14–18 years old and their parents. The adolescents were under follow-up care at one of four university hospitals in Sweden: Gothenburg, Lund, Stockholm, and Umeå. The studies were based on individual interviews (I), focus group interviews (II), and questionnaires (III and IV). Study I. The aim was to identify and describe the needs of adolescents with CHD and their parents during the transition before transfer to adult cardiologic health care. The results revealed one theme for the adolescents, Safety and control, indicating a need for continuity and knowledge and a need of taking responsibility. The results also revealed one theme for the parents, Safety and trust, indicating a need for continuity and for shifting responsibility. Study II. The aim was to explore what adolescents with CHD view as important in the preparation for the transfer to adult care. The results revealed one main category, Becoming a manager of the condition, and the four subcategories of Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. Study III. The aim was to (i) describe the level of readiness for transition in adolescents with CHD, (ii) to compare the level of readiness for transition as assessed by the adolescents with parental assessments, and (iii) to study potential correlates of transition readiness in adolescents with CHD. The results showed that the adolescents’ level of readiness for transition increased with age. Further, there was a significant difference in adolescents’ and their parents’ scoring, where the adolescents scored higher on overall readiness compared to their parents. Additional, empowerment and illness perception (patient’s overall perception about their disease) were associated with higher transition readiness. Study IV. The aims of the study were to (i) study parents’ levels of uncertainty related to the transfer from pediatric to adult care in adolescents with CHD and (ii) to identify any factors that might correlate with parents’ levels of uncertainty. The results showed that the mothers scored significantly higher on the uncertainty scale than the fathers and that there was a negative correlation between parental uncertainty and the adolescents’ overall readiness