Academic Journal
Participation of children with autism spectrum disorder in everyday activities: self-reports and primary caregivers' proxy-reports.
| Title: | Participation of children with autism spectrum disorder in everyday activities: self-reports and primary caregivers' proxy-reports. |
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| Authors: | Li L; CHILD research Group, School of Health and Welfare, Jönköping University, Sweden; School of Nursing, Tianjin Medical University, China. Electronic address: xueyu1980.cry@163.com., Huus K; CHILD research Group, School of Health and Welfare, Jönköping University, Sweden; Department of Nursing, School of Health and Welfare, Jönköping University, Sweden; Centre for Augmentative and Alternative Communication, University of Pretoria, Pretoria, South Africa. Electronic address: Karina.Huus@ju.se., Falkmer M; CHILD research Group, School of Education and Communication, Jönköping University, Sweden. Electronic address: marita@falkmer.se., Zhao Y; School of Nursing, Tianjin Medical University, China., Christensen BM; CHILD research Group, School of Health and Welfare, Jönköping University, Sweden; Department of Clinical Diagnostic, Jönköping University, Sweden. |
| Source: | Journal of pediatric nursing [J Pediatr Nurs] 2026 Jul-Aug; Vol. 89, pp. 100-108. Date of Electronic Publication: 2026 Apr 20. |
| Publication Type: | Journal Article |
| Language: | English |
| Journal Info: | Publisher: W.B. Saunders Country of Publication: United States NLM ID: 8607529 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1532-8449 (Electronic) Linking ISSN: 08825963 NLM ISO Abbreviation: J Pediatr Nurs Subsets: MEDLINE |
| Imprint Name(s): | Publication: 1989- : Philadelphia, Pa : W.B. Saunders Original Publication: [Orlando, FL] : Grune & Stratton, [c1986- |
| MeSH Terms: | Autism Spectrum Disorder*/psychology , Autism Spectrum Disorder*/diagnosis , Caregivers*/psychology , Activities of Daily Living* , Self Report*, Humans ; Male ; Female ; Cross-Sectional Studies ; Child ; Proxy ; Child, Preschool ; Adolescent ; Surveys and Questionnaires |
| Abstract: | Purpose: This study aimed to examine the level of agreement between children with autism spectrum disorder (ASD) and their primary caregivers regarding the perceived frequency of attendance, level of involvement, and perceived importance of everyday activities. Methods: A cross-sectional design was employed, recruiting 63 ASD child-caregiver dyads and administering the simplified Chinese version of Picture My Participation (PMPC; Simplified). Results: Among the 19 items included in the PMP-C (Simplified), child-caregiver agreement on attendance and involvement was slight to fair in most domains. The most prominent discrepancies were observed in school and community-based activities, whereas higher agreement was found in home-based contexts. Caregivers tended to underestimate the child's attendance in personal care and health-related activities, with no universal systematic bias across all areas. Children and caregivers showed a moderate positive correlation in ranking important activities, yet differences remained in the distribution and focus of the rankings. Conclusion: Children with ASD and their caregivers demonstrate divergent perceptions of the child's everyday participation. Caregiver proxy reports do not fully capture children's subjective lived experiences, especially in social and community contexts, and systematically underestimate perceived independence in personal care and health-related activities. While there is moderate convergence in ranking important activities, distinct value priorities exist for specific daily occupations. Implications for Practice: Direct child self-report, supported by visual aids, is feasible and essential for capturing the subjective experiences of children with ASD. A dual-informant approach that combines child self-report and caregiver proxy data can support more person-centered, meaningful participation for children with ASD. (Copyright © 2026 The Author(s). Published by Elsevier Inc. All rights reserved.) |
| Competing Interests: | Declaration of competing interest No potential conflict of interest was reported by the authors. |
| Contributed Indexing: | Keywords: Autism Spectrum disorder; Caregivers; Child; Participation; Self report |
| Entry Date(s): | Date Created: 20260421 Date Completed: 20260714 Latest Revision: 20260714 |
| Update Code: | 20260715 |
| DOI: | 10.1016/j.pedn.2026.04.007 |
| PMID: | 42013661 |
| Database: | MEDLINE |
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