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Agreement between children with long-term health conditions and their primary caregivers on reports of perceived participation
Jönköping University, School of Health and Welfare, HHJ. CHILD. School of Nursing, Tianjin Medical University, Tianjin, China.ORCID iD: 0000-0002-2054-1491
Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria, South Africa.
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.
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2023 (English)In: Frontiers in Rehabilitation Sciences, E-ISSN 2673-6861, Vol. 4, article id 1123651Article in journal (Refereed) Published
Sustainable development
00. Sustainable Development
Abstract [en]

BACKGROUND: There is limited knowledge regarding the perceived participation of children with long-term health conditions in everyday activities. Children may have perceptions that differ from those of their primary caregivers. It is unclear whether children and caregivers rate their participation in everyday situations in the same way.

OBJECTIVES: We aimed to explore the level of agreement pertaining to perceived participation (attendance and involvement) and examine whether differences exist in the rank order of activities selected as the three most important between reports from children with long-term health conditions and their primary caregivers.

METHODS: The simplified Chinese version of the Picture My Participation (PMP-C; Simplified) was used in an interview with children with long-term health conditions; meanwhile, their primary caregivers finished the questionnaire independently. Data were analyzed using Wilcoxon tests, weighted kappa values, and Spearman's rank order correlation.

RESULTS: Children with long-term health conditions reported significantly lower attendance scores for six activity items (p < 0.05) and higher involvement scores for two activity items (p < 0.05) than their primary caregivers did. An overall slight to fair agreement in perceived participation was found at the child-caregiver dyad level, though differences in dyads were observed. A strong correlation was identified between the rank order of the most important activities for both groups (r = 0.81).

CONCLUSIONS: Differences may exist between the perceived participation of children with long-term health conditions, as reported by primary caregivers and the children themselves. The findings highlight that children with long-term health conditions exhibit unique views with respect to their perceived participation and have to be asked regarding their perceptions themselves.

Place, publisher, year, edition, pages
Frontiers Media S.A., 2023. Vol. 4, article id 1123651
Keywords [en]
agreement, child reports, long-term health conditions, participation, proxy reports
National Category
Pediatrics
Identifiers
URN: urn:nbn:se:hj:diva-61663DOI: 10.3389/fresc.2023.1123651ISI: 001061649300001PubMedID: 37350849Scopus ID: 2-s2.0-85174905805Local ID: GOA;intsam;888158OAI: oai:DiVA.org:hj-61663DiVA, id: diva2:1775992
Available from: 2023-06-27 Created: 2023-06-27 Last updated: 2023-11-06Bibliographically approved

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Zheng, HongGranlund, MatsHuus, Karina

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