Although essential for providing optimal adolescent patient support, knowledge of the impact of Marfan syndrome in adolescence is limited. To explore adolescents’ perceived impact of Marfan syndrome on (physical) functioning (activities, participation), disability (limitations, restrictions), contextual factors and support needs, we interviewed 19 adolescents with Marfan syndrome. Audio-recordings were transcribed, coded and analysed using thematic analysis. Identified themes were “difficulties in keeping up with peers” and “being and feeling different from peers”. Furthermore, an adolescent Marfan syndrome-specific International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) model derived from the data describing the adolescent perceived impact of Marfan syndrome on functioning, disability and its contextual factors. Adolescents perceived problems in keeping up with peers in school, sports, leisure and friendships/relationships, and they could not meet work requirements. Moreover, participants perceived to differ from peers due to their appearance and disability. Contextual factors: coping with Marfan syndrome, self-esteem/image, knowledge about Marfan syndrome, support from family/friends/teachers, ability to express needs and peer-group acceptation acted individually as barrier or facilitator for identified themes.
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Background: Increasing health literacy (HL) in children could be an opportunity for a more health literate future generation. The aim of this scoping review is to provide an overview of how HL is conceptualized and described in the context of health promotion in 9–12-year-old children. Methods: A systematic and comprehensive search for ‘health literacy’ and ‘children’ and ‘measure’ was performed in accordance with PRISMA ScR in PubMed, Embase.com and via Ebsco in CINAHL, APA PsycInfo and ERIC. Two reviewers independently screened titles and abstracts and evaluated full-text publications regarding eligibility. Data was extracted systematically, and the extracted descriptions of HL were analyzed qualitatively using deductive analysis based on previously published HL definitions. Results: The search provided 5,401 original titles, of which 26 eligible publications were included. We found a wide variation of descriptions of learning outcomes as well as competencies for HL. Most HL descriptions could be linked to commonly used definitions of HL in the literature, and some combined several HL dimensions. The descriptions varied between HL dimensions and were not always relevant to health promotion. The educational setting plays a prominent role in HL regarding health promotion. Conclusion: The description of HL is truly diverse and complex encompassing a wide range of topics. We recommend adopting a comprehensive and integrated approach to describe HL dimensions, particularly in the context of health promotion for children. By considering the diverse dimensions of HL and its integration within educational programs, children can learn HL skills and competencies from an early age.
The majority of studies investigating associations between physical activity and mental health in adolescents have been cross-sectional in design. Potential associations between physical activity and mental health may be better examined longitudinally as physical activity levels tend to decrease in adolescence. Few studies have investigated these associations longitudinally in adolescents and none by measuring physical activity objectively. A total of 158 Dutch adolescents (mean age 13.6 years, 38.6 % boys, grades 7 and 9 at baseline) participated in this longitudinal study. Physical activity, depressive symptoms and self-esteem were measured at baseline and at the 1-year follow-up. Physical activity was objectively measured with an ActivPAL3™ accelerometer during one full week. Depressive symptoms were measured with the Center for Epidemiologic Studies Depression Scale (CES-D) and self-esteem was assessed with the Rosenberg Self-Esteem Scale (RSE). Results were analysed using structural equation modelling.