Participation in everyday activities among children with intellectual disabilities in mainland China : The development, verification, and application of the Picture My Participation instrument

Sammanfattning: Background: Participation in everyday activities is seen as a main outcome of rehabilitation for children. ‘Picture My Participation’ (PMP) is a validated questionnaire for assessing participation in everyday activities by children with disabilities in low- and middle-income countries, but it is not yet available in simplified Chinese.Aims: The overall aims of this thesis were to validate a simplified Chinese version of Picture My Participation as a participation assessment tool, the PMP-C (simplified), and also to describe the attendance and involvement in everyday activities of children with IDs and their TD peers in rural and urban areas of mainland China as well as barriers and facilitators of participation from the perspectives of children and their primary caregivers.Methods: This thesis reports four studies conducted to carry out these aims. Studies I and II used a quantitative method with a cross-sectional instrument validation design to cross-culturally adapt the PMP-C (simplified) and explored its validity and reliability. Based on this, Study III used a cross-sectional design to compare the frequency and involvement of children with IDs and TD in everyday activities in rural and urban areas of mainland China. Meanwhile, Study IV used a descriptive and explorative design with an inductive qualitative content analysis approach to describe primary caregivers’ perceptions of barriers and facilitators related to participation in everyday activities among children with IDs in mainland China.Results: All items in the PMP-C (simplified) had excellent content and face validity. The internal consistency, reliability coefficient, and test-retest reliability of the subscale scores were excellent (Study I). The construct validity of the subscale scores extracted five subcomponents: organised activities, social activities, taking care of others, family life activities, and personal care and development activities (Study II). Children with IDs reported lower participation than children with TD in terms of their total scores for attendance and involvement but reported the same levels of involvement in the subcomponents taking care of others and family life activities as children with TD in urban areas. Concerning differences between urban and rural contexts, both children with TD and IDs in rural areas reported lower total scores for attendance and for all subcomponents except social activities than their urban counterparts. There was no significant difference in the total involvement score between rural and urban contexts for children with IDs; however, children with TD in urban areas reported higher involvement than their rural counterparts (Study III). Four categories of barriers to participation in everyday activities for children with IDs were identified: insufficient knowledge, attitudes, and skills in primary caregivers; ID-related characteristics of children; stigma and Chinese culture; and lack of societal support. Four categories describing facilitators were identified: the optimistic attitude of the primary caregiver, adequate family support; active school and policy environments, and enjoyable characteristics of children with IDs (Study IV).Conclusion: This thesis provides psychometric evidence that the PMP-C (simplified) is a valid and reliable measure of participation in mainland China and enable children with ID to have “a voice” and to report their own perspectives. The findings regarding ID–TD and urban–rural disparities in participation and the barriers and facilitators of participation among children with IDs offer important insights concerning environmental aspects when planning future intervention studies focused on promoting participation in mainland China.