Participation in leisure activities of children and adolescents with a physical disability

Abstract

In this PhD thesis participation in leisure activities of children and youth aged 2 to 18 years with and without a physical disability in the Netherlands is described. Determinants of participation are identified. Participation is someone’s involvement in life situations (ICF-CY, WHO). This thesis focuses on leisure activities in particular. Leisure activities are those activities that are freely chosen and performed when not involved in school or work. Although there has been a growing body of literature into participation and determinants of participation in leisure activities, comparisons between children with and without physical disabilities were lacking. In order to measure participation in a valid and reliable way, two measures were translated from English into Dutch and assessed in a large group of children with and without a physical disability. For children aged 2 to 6 years of age the Assessment of Preschool Children’s Participation (APCP) was assessed. For children and adolescents aged 6 to 18 years of age the Dutch translation of the Children’s Assessment of Participation and Enjoyment (CAPE) was assessed. Both showed satisfactory psychometric properties. With these instruments a comparison between children with and without physical disabilities was made showing lower levels of participation for children with a physical disability. An extensive literature review, aimed at identifying determinants of participation in leisure activities, showed a wide range of factors being involved in the level of participation. Most important variables are gross motor function, manual ability, cognitive ability, communicative skills, age and gender. Related variables are comparable across diagnostic groups. Preference is one of the factors related to participation in leisure activities. The relation between preference for activities and actual engagement in activities is also assessed. Children with a physical disability have lower preference for physical activities, social activities and informal activities compared to their healthy peers. A prospective study looking at early determinants of participation in children with Cerebral Palsy (CP) at the age of 2, and participation at the age of 6,7 or 8 years, used multivariate regression analysis and showed that movement ability and social skills to be the best predictors of later participation in leisure activities. Another important finding is that the feeling of parents of being restricted in undertaking activities with the family when the child was 2 years of age, was also related to lower participation when the child was 6,7 or 8 years old. An international comparison study was undertaken comparing Spanish and Dutch children with CP and their non-disabled peers. Spanish children with CP showed more participation in formal activities and skill-based activities compared to Dutch peers. Looking at determinants of variance in participation between children, regression analyses showed that child related variables (age, gender, GMFCS) were related to participation in leisure activities. Country of residence was only related for participation in formal activities. Clinical implications and future research are discussed.