Understanding the Participation in Home, School, and Community Activities Reported by Children with Disabilities and Their Parents: A Pilot Study

Abstract

Participation has significant impact on children’s health and well-being. Knowledge is limited on how children with disabilities perceive their participation and whether their perceptions differ from their parents. This pilot study aimed to explore whether self-reported frequency of participation and prioritized activities differ between children with disabilities and their parents. Thirty children with disabilities eligible for special education in elementary school and their parents were included. Each of them were interviewed with the Chinese version of Picture My Participation (PMP), separately, to identify the child’s participation frequency in 21 activities at home, school, and community, desire-to-change activities, and the level of involvement in these activities. The results indicated that children’s ratings of participation frequency were significantly lower than parents’ ratings in home activities but not in school and community activities, as analyzed by the Wilcoxon Signed Ranked test. Nineteen (63%) child–parent pairs had selected entirely different items as their desire-to-change activities. Children selected the activities that they were somewhat to very involved in; while parents selected the activities they thought their children were less involved in. Our findings suggest that children with disabilities had unique views on life and this should be supported in their health care and individualized education plans.

Transcultural adaptation, content validity and reliability of the instrument ‘Picture My Participation’ for children and youth with and without intellectual disabilities in mainland China

“…The modified items and pictures were clear and easy to understand by the children and youth participating in this study, thus demonstrating good face validity. Related research shows that children are able to understand the meanings of items with supporting pictures measured in PMP-C (traditional) [28]. The content validity of PMP has been established by children with ID and children with TD in South Africa and Sweden [2].…”

“…In the PMP, pictures are used to present each of the activities, environmental factors, and visual scales participation frequency and level of involvement. The content validity of PMP in Sweden, like in South Africa, has been reported as satisfactory [2] when trialled on children with ID, and the cross-cultural adaptation for school-age children in Taiwan has been finished for the traditional Chinese version of 'Picture My Participation' (PMP-C; traditional) [28,29], but it is not yet available in simplified Chinese. Children and youth with ID in mainland China, like all children and youth, have the right to fully engage in everyday activities.…”

Structural Validity of an ICF-Based Measure of Activity and Participation for Children in Taiwan’s Disability Eligibility Determination System

“…However, the scores between the parent/caregiver report version and youth self-report version of the CASP or of FUNDES-Child are significantly different [ 8 , 13 , 29 , 33 , 34 ]. Children and parents do not only show differences in the perception of participation, they also identify different priorities for participation goals in the individualized educational plan [ 13 , 35 ]. Therefore, stakeholders need to consider their specific research or practice purposes in determining whether to use one or both versions.…”

“…The application of FUNDES by clinicians or social welfare service providers in order to understand what are the restrictions and to enhance the social participation for people with disabilities has also been proposed [ 4 , 5 , 13 , 34 ]. In Taiwan, the ICF framework has been applied in early intervention and special education services [ 34 , 35 , 36 , 37 ]. However, FUNDES-Child requires additional testing and validation.…”

Test-retest reliability of Picture My Participation in children with intellectual disability in South Africa

“…Letting the individuals voice be heard is especially important in clinical settings were responses may be related to the selection of intervention goals. Care provider and child perceptions on participation goals do not always overlap [21] even if ratings from care providers and children tend to be highly correlated [17].…”