Participation in and outside school: Self-ratings by Swedish adolescents with and without impairments and long-term health conditions

Author: Frida Lygnegård, HHJ


This thesis in disability research concerns the short-term state of and changes in self-rated participation in domestic life, peer relations and to some extent, school. Participants were adolescents with and without self-reported impairments and long-term health conditions. A functional perspective on adolescents’ participation in everyday activities is applied. The thesis is one of several sub-studies in the Swedish research program LoRDIA (Longitudinal Research on Development In Adolescence). Aim: The aim was to study relationships between individual and environmental factors and participation in a two-time point longitudinal study within the framework of the ICF-CY health classification system. The aim was also to study the impact of environmental and individual factors on self-reported participation in adolescents with and without impairments or long-term health conditions. Methods: The study designs of the four studies are cross-sectional (studies I and II), and prospective longitudinal (studies III & IV). A combination of person-based (such as cluster analysis in studies II and IV) and variablebased methods (such as ANOVA, multiple regressions, and logistic regressions in studies I, II, III and IV) were used. Results: When linking items from a questionnaire designed to measure mental health in adolescents to codes in the International Classification of Functioning, Disability and Health, Children and Youth version latent coding is preferred to manifest coding. The focus should be on the underlying meaning of the item and the primary aim of the scale from which the item originated should be taken into consideration. The self-rated experience of participation was stable over time when investigated from a two-time point longitudinal perspective. Results revealed that type of impairment cannot be considered the sole predictor of experience of participation at home, with peers and in school. Factors in the microsystem, e.g., sibling support, and perceived communication within the family, is of greater importance for the level of both participation attendance and the perceived importance of participating in domestic life and peer relations. At the age of 12 or 13, adolescents with self-reported neurodevelopmental impairments had fewer factors associated with participation in domestic life, peer relations and school compared to two years later when they were 15 or 16 years of age. Conclusion: Everyday functioning in adolescents with neurodevelopmental impairments is affected by many of the same factors as for children without neurodevelopmental impairments However, the effect of neurodevelopmental impairments is particularly evident in school and decreases in importance with age. Factors in the adolescents’ environments such as experience of sibling support and communication patterns in the family must be taken into consideration when investigating influences on participation. When measuring participation, both the frequency of attendance dimension as well as the perceived importance of the relevant activity should be included as they seem to be related to partly different influences.

This research is financed by:

Swedish Research Council, FORTE, VINNOVA, Formas, Säfstaholm Foundation, Sunnerdahl Disability Foundation, Futurum Academy for Health and Care Jönköping County Council, Swedish Institute of Disability Research (SIDR) and the School of Health and Welfare, Jönköping.

Contact: Frida Lygnegård, University Lecturer, School of Health and Welfare, Jönköping.

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