Abstract
Participation, defined as 'involvement in life situations' according to the World Health Organisation, is a well-recognized concept and critical indicator of quality of life. In addition it has become an important outcome measure in child rehabilitation. However, little is known about the level of participation of young children with Developmental Disabilities. The aim of this study was to capture their subjective experiences of participation. An adapted informed consent based on a comic strip was used to get the children's assent. A Photo Elicitation study was used, in which photographs were taken by the children when they were involved in meaningful activities. The photographs were then used to facilitate communication with the children and to initiate in depth-interviews. Forty-seven interviews with 16 children between five and nine years were conducted based on their photographs. This method generated rich data, confirming that young children with Developmental Disabilities were able to inform us accurately on their experiences of participation. Data was analysed by means of an inductive thematic analysis. Results showed that children perceived their participation as satisfying when they can play, learn and join in family gatherings resulting in feelings of inclusion, recognition and belonging. When there are-on occasions-moments that their participation was obstructed, the children used two strategies to resolve it. Or they walked away from it and choose not to participate, or when autonomously motivated for the activity, they relied primarily on their context (i.e. mothers) as enabling their participation. Related to the data, children discussed themes related to their person, activities, connections and mediators between those themes. These themes fit well within earlier and current research on the subject of participation.
Highlights
The International Classification of Functioning (ICF) represents the most up-to-date international disability framework [1, 2]
Children discussed themes related to their person, activities, connections and mediators between those themes
A total of 32 middle-class parents living in the Flemish part of Belgium registered to participate in the study
Summary
The International Classification of Functioning (ICF) represents the most up-to-date international disability framework [1, 2] This framework resulted from a paradigm shift from a medical or genetic and causal approach (e.g. autism) to a focus on consequences for ‘participation’ e.g. difficulty with making friends [3,4,5,6,7,8]. King and colleagues [11] documented that participation in meaningful activities in many environments (home, school and community) was vital for children’s well-being By participating in such activities, children developed skills and capabilities, expressed creativity and enjoyment, developed their self-identity, self-esteem and emotional well-being, achieved a better mental and physical health, formed meaningful relationships and achieved a purpose and meaning in their lives [9, 12, 13]
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