PSAU - Tese de doutoramento
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- Qualidade de vida, percepção de saúde, resiliência, auto-regulação e suporte social nos adolescentes portugueses com a doencça crónicaPublication . Santos, Teresa Cristina; Matos, Margarida Gaspar de; Simões, Maria Celeste; Machado, Maria do CéuThe impact of chronic disease on Quality of Life(QoL)/Health-related Quality of Life(HRQoL) and psychosocial functioning in adolescence is a complex phenomenon. This research work aimed to: 1) characterize QoL/HRQoL and psychosocial functioning in chronically ill adolescents at a national-representative level; 2) explore associations between chronic disease, QoL/HRQoL and psychosocial factors; and 3) characterize QoL/HRQoL and psychosocial functioning in chronically ill adolescents in a clinical context. This work comprised three phases. Phase I used cross-sectional data from the national study Health Behaviour in School-aged Children (2010), conducted in 5050 adolescents (52.3% girls, 14±1.85 years old). Comparisons between adolescents having/not having chronic disease were performed; afterwards within the chronically ill subgroup, adolescents feeling affected/not affected in school participation were compared. Individual-psychological variables (wellness perception, life satisfaction, psychological well-being) and also socio-contextual variables (satisfaction with family environment, perceived school performance, pressure with schoolwork and risk behaviours) were assessed. Phase II was a systematic review on the association between chronic disease, HRQoL and psychosocial factors. Phase III used crosssectional data collected in a clinical context in 135 adolescents (51.9% boys, 14±1.5 years old), with diabetes mellitus, allergic, or neurological diseases. Comparisons by type of chronic diseases were conducted, and then, between adolescents feeling affected/not affected in their school/social participation. HRQoL, psychosomatic health, resilience, self-regulation and social support were measured in this Phase. The main findings (set of nine scientific articles) suggested that: 1) at a national-representative level, adolescents with chronic diseases reported high risk on individual-psychological and socio-contextual outcomes, vs. healthy peers. The most vulnerable chronically ill adolescents were the older, girls, those with lower socioeconomic status and feeling affected in their school participation; 2) literature showed an association between having chronic disease in adolescence and negative HRQoL outcomes and psychosocial functioning, as well as lack of specific studies on adolescence as an independent age group; 3) in the clinical context, girls and adolescents who felt affected in their school/social participation, reported worse HRQoL outcomes and psychosocial functioning; no differences were observed by type of diseases. Considering the whole group, adolescents who felt affected in participation in school/social activities reported worse HRQoL, psychosomatic health, resilience, self-regulation and social support; girls had worse HRQoL and psychosomatic health, vs. boys. Psychosomatic health, resilience and self-regulation had a higher impact in some HRQoL’s dimensions for boys, whereas social support for girls. Overall, psychosomatic health, resilience, self-regulation and social support were positively associated with HRQoL, even when combined with clinical variables. These findings in Portuguese adolescents enhance the understanding of the impact of chronic disease on QoL/HRQoL and psychosocial functioning, underlining the role of protective factors on positive outcomes. It stressed as a current challenge for research and clinical practice, to include a routine assessment of these variables in adolescents, also suggesting a multidimensional and individualized approach, including self-reports to “give voice” to young people’s needs. Identifying impaired domains optimizes allocation of available resources and helps healthcare professionals to implement multidisciplinary and cost-effective interventions for psychosocial support. Ultimately, a wider framework with clinicians, schools, family, and peers is strongly suggested, particularly relevant for the Portuguese reality, since this assessment is not common and psychosocial interventions are still scarce.