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Participation in everyday activities among children with intellectual disabilities in mainland China: The development, verification, and application of the Picture My Participation instrument
Jönköping University, School of Health and Welfare, HHJ. CHILD.ORCID iD: 0000-0001-6613-582X
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 [en]
China, child, disability, ICF, participation, self-reported
National Category
Nursing
Identifiers
URN: urn:nbn:se:hj:diva-62535ISBN: 978-91-88669-33-9 (print)ISBN: 978-91-88669-34-6 (electronic)OAI: oai:DiVA.org:hj-62535DiVA, id: diva2:1800124
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
List of papers
1. Transcultural adaptation, content validity and reliability of the instrument 'Picture My Participation' for children and youth with and without intellectual disabilities in mainland China
Open this publication in new window or tab >>Transcultural adaptation, content validity and reliability of the instrument 'Picture My Participation' for children and youth with and without intellectual disabilities in mainland China
Show others...
2021 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 28, no 2, p. 147-157Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: '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.

AIM: To describe the cross-cultural adaptation of the simplified Chinese version of 'Picture My Participation' (PMP-C; Simplified) and explore its validity and reliability.

METHODS: A cross-sectional study using convenience sampling was conducted using PMP-C (Simplified) with structured interviews supported by pictures for children and youth with and without intellectual disabilities (ID) in mainland China. The validity of the PMP-C (Simplified) was demonstrated by face validity and content validity while the reliability was evaluated for internal consistency and test-retest reliability.

RESULTS: Five items were slightly modified and eight pictures were revised to improve their fit with the culture of mainland China. All the items in PMP-C (Simplified) had excellent content validity, and face validity. The internal consistency, reliability coefficient and test-retest reliability of the subscale attendance for children and youth with and without ID were excellent.

CONCLUSION: Preliminary evidence of the content validity of PMP-C (Simplified) items and reliability of the subscale attendance for use with children and youth in mainland China has been gathered. However, psychometric properties in terms of construct validity for the whole instrument and reliability for the engagement subscale need further exploration.

Place, publisher, year, edition, pages
Taylor & Francis, 2021
Keywords
China, content validity, disabled children, participation, reliability, self-report
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-50666 (URN)10.1080/11038128.2020.1817976 (DOI)000570280500001 ()32941109 (PubMedID)2-s2.0-85091076669 (Scopus ID)HOA;intsam;1469784 (Local ID)HOA;intsam;1469784 (Archive number)HOA;intsam;1469784 (OAI)
Available from: 2020-09-22 Created: 2020-09-22 Last updated: 2023-09-25Bibliographically approved
2. Construct validity of the simplified Chinese version of the instrument ‘Picture My Participation’
Open this publication in new window or tab >>Construct validity of the simplified Chinese version of the instrument ‘Picture My Participation’
2024 (English)In: Scandinavian Journal of Occupational Therapy, ISSN 1103-8128, E-ISSN 1651-2014, Vol. 31, no 1, article id 2348816Article in journal (Refereed) Published
Abstract [en]

Background

Preliminary evidence of the content validity of the simplified Chinese version of ‘Picture My Participation’ (PMP-C; Simplified) items and reliability of the subscale attendance for the effectiveness of the use with children and youth in mainland China has been collected. However, evidence of construct validity for the instrument is not yet available.

Aim

To explore the construct validity of the attendance scale in PMP-C (Simplified).

Methods

A cross-sectional study using convenience sampling was conducted using PMP-C (Simplified) with a picture-supported interview for 290 children and youths aged 5–21 with and without ID in urban and rural areas of mainland China. Exploratory factor analysis (EFA) was performed using the principal component analysis (PCA) to analyse the resulting data.

Results

The EFA extracted five factors with eigenvalues greater than one and the cumulative contribution rate of factors accounted for 51.62% of the variance. All items had factor loadings above 0.50. The five subcomponents included: organised activities, social activities, taking care of others, family life activities and personal care and development activities.

Conclusion

The results of the factor analysis support the construct validity of the PMP-C (Simplified) attendance scale. It provides further psychometric evidence that PMP-C (Simplified) is a sound measure to assess participation for children and youths in mainland China.

Place, publisher, year, edition, pages
Taylor & Francis, 2024
Keywords
China, disabled children, participation, everyday activities, self-report
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-62533 (URN)10.1080/11038128.2024.2348816 (DOI)001217900800001 ()38728597 (PubMedID)2-s2.0-85192806825 (Scopus ID)GOA;;62533 (Local ID)GOA;;62533 (Archive number)GOA;;62533 (OAI)
Note

Included in doctoral thesis in manuscript form.

Available from: 2023-09-25 Created: 2023-09-25 Last updated: 2024-05-23Bibliographically approved
3. Participation in everyday activities – a comparison of children with and without intellectual disability in rural and urban areas of mainland China
Open this publication in new window or tab >>Participation in everyday activities – a comparison of children with and without intellectual disability in rural and urban areas of mainland China
(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-62534 (URN)
Note

Included in doctoral thesis in manuscript form.

Available from: 2023-09-25 Created: 2023-09-25 Last updated: 2023-09-25
4. Barriers and facilitators to participation in everyday activities for children with intellectual disabilities in China
Open this publication in new window or tab >>Barriers and facilitators to participation in everyday activities for children with intellectual disabilities in China
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
Keywords
China, barrier, children, facilitator, intellectual disability, participation
National Category
Psychiatry Nursing
Identifiers
urn:nbn:se:hj:diva-58389 (URN)10.1111/cch.13052 (DOI)000847821100001 ()36001483 (PubMedID)2-s2.0-85137222544 (Scopus ID)HOA;intsam;1691778 (Local ID)HOA;intsam;1691778 (Archive number)HOA;intsam;1691778 (OAI)
Available from: 2022-08-31 Created: 2022-08-31 Last updated: 2024-03-26Bibliographically approved

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