Autonomy in participation in cerebral palsy from childhood to adulthood

    Publication of Innovations in Care

    Marloes Gorp,van, Ann Katrin Schmidt, Leontien Wely,van, S.R. Hilberink, Marjolijn Ketelaar, M.E. Roebroeck | Article | Publication date: 02 October 2019
    AIM To determine the long-term development of autonomy in participation of individuals with cerebral palsy (CP) without intellectual disability. METHOD Individuals with CP (n=189, 117 males, 72 females; mean age [SD] 21y 11mo [4y 11mo], range 12–34y); were assessed cross-sectionally (46%) or up to four times (54%), between the ages of 12 and 34 years. Autonomy in participation was classified using phase 3 of the Rotterdam Transition Profile. A logistic generalized estimating equation regression model was used to analyse autonomy in six domains (independent variables: age, Gross Motor Function Classification System [GMFCS] level, and interaction between age and GMFCS level). Proportions of autonomy were compared to references using binomial tests (p<0.05). RESULTS In most domains, over 90% of participants (n=189, 400 observations, 80% in GMFCS levels I and II) reached autonomy in participation in their late twenties, except for intimate/ sexual relationships. Those in GMFCS levels III to V compared to those in GMFCS levels I and II had less favourable development of autonomy in the transportation, intimate relationships, employment, and housing domains, and more favourable development in the finances domain. Compared to references, fewer individuals with CP were autonomous in participation. INTERPRETATION This knowledge of autonomy may guide the expectations of young people with CP and their caregivers. Furthermore, rehabilitation professionals should address autonomy development in intimate relationships, employment, and housing, especially in individuals with lower gross motor function.

    Author(s) - affiliated with Rotterdam University of Applied Sciences

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