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Barriers and facilitators to participation in everyday activities for children with intellectual disabilities in China.
Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Nursing, Tianjin Medical University, Tianjin, China.ORCID iD: 0000-0001-6613-582X
Jönköping University, School of Health and Welfare, HHJ, Department of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.ORCID iD: 0000-0001-9597-039X
School of Nursing, Tianjin Medical University, Tianjin, China.
Jönköping University, School of Health and Welfare, HHJ, Department of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0003-4599-155X
2023 (English)In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 49, no 2, p. 346-356Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Children with intellectual disabilities (IDs) are vulnerable and participate less in everyday activities compared to their peers with typical development. This study aimed to identify barriers and facilitators related to the participation in everyday activities of children with IDs in China.

METHODS: Twenty semi-structured interviews were conducted with primary caregivers of children with IDs from special schools in Tianjin, China. The data was transcribed and analysed using inductive qualitative content analysis.

RESULTS: 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 support from society. Four categories describing facilitators of participation in everyday activities for children with IDs were also identified: The optimistic attitude of the primary caregiver; Adequate family support; Active environment in school and policy; and Attractive characteristics of children with IDs.

CONCLUSIONS: The findings in this study add knowledge on important barriers and facilitators affecting the participation of children with IDs in everyday activities in China. The primary caregivers' voices need to be heard by government and society. Appropriate and effective changes in family-oriented services and the legal, social, political and economic context of the child welfare management system for the scale-up of improving participation should be implemented for children with IDs.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023. Vol. 49, no 2, p. 346-356
Keywords [en]
China, barrier, children, facilitator, intellectual disability, participation
National Category
Psychiatry Nursing
Identifiers
URN: urn:nbn:se:hj:diva-58389DOI: 10.1111/cch.13052ISI: 000847821100001PubMedID: 36001483Scopus ID: 2-s2.0-85137222544Local ID: HOA;intsam;1691778OAI: oai:DiVA.org:hj-58389DiVA, id: diva2:1691778
Available from: 2022-08-31 Created: 2022-08-31 Last updated: 2023-09-25Bibliographically approved
In thesis
1. Participation in everyday activities among children with intellectual disabilities in mainland China: The development, verification, and application of the Picture My Participation instrument
Open this publication in new window or tab >>Participation in everyday activities among children with intellectual disabilities in mainland China: The development, verification, and application of the Picture My Participation instrument
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare, 2023. p. 93
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 129
Keywords
China, child, disability, ICF, participation, self-reported
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-62535 (URN)978-91-88669-33-9 (ISBN)978-91-88669-34-6 (ISBN)
Public defence
2023-11-03, Forum Humanum, School of Health and Welfare, Jönköping, 13:00 (English)
Opponent
Supervisors
Available from: 2023-09-25 Created: 2023-09-25 Last updated: 2023-09-25Bibliographically approved

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Shi, LinjunGranlund, MatsHuus, Karina

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