Evidence map›Paper›PMID 42656965›Full record

ReviewInternational journal of developmental disabilities2026

Parent and caregiver report questionnaires for children and adolescents with intellectual disabilities: a systematic review.

Catriona Windsor, Sangwon Yoon, Tingwei Zhang, Chung Eun Lee, Åste Marie Mjelve Hagen, David Hoff, Bas J Heijnen, Renée Speyer

Abstract readReview
In one paragraph

Review in International journal of developmental disabilities, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

8 authors.

Catriona WindsorDepartment of Special Needs Education, University of Oslo, Oslo, Norway.ORCID https://orcid.org/0000-0001-5504-6370
Sangwon YoonDepartment of Special Education, Catholic University of Korea, South Korea.ORCID https://orcid.org/0000-0002-9959-3808
Tingwei ZhangDepartment of Special Needs Education, University of Oslo, Oslo, Norway.ORCID https://orcid.org/0000-0002-9557-3076
Chung Eun LeeDepartment of Education, Sungshin Women's University, Seoul, South Korea.ORCID https://orcid.org/0000-0001-8360-5985
Åste Marie Mjelve HagenDepartment of Special Needs Education, University of Oslo, Oslo, Norway.ORCID https://orcid.org/0000-0003-3868-5669
David HoffDepartment of Special Needs Education, University of Oslo, Oslo, Norway.ORCID https://orcid.org/0000-0002-8858-5431
Bas J HeijnenDepartment of Otorhinolaryngology and Head and Neck Surgery, Leiden University Medical Centre, Leiden, The Netherlands.ORCID https://orcid.org/0000-0002-8309-8773
Renée SpeyerDepartment of Special Needs Education, University of Oslo, Oslo, Norway.ORCID https://orcid.org/0000-0003-2828-8897

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objectives: Parent and caregiver questionnaires are important outcome measures in education, clinical and research practice with children with intellectual disabilities. Methods: Following PRISMA guidelines, this systematic review aimed to provide an overview of freely available caregiver report questionnaires, identified from five databases (Cinahl, Embase, Eric, PsycINFO and PubMed). Questionnaires were categorised following inductive analyses, and subscales were conceptually mapped using constructs and definitions from the International Classification of Functioning, Disability and Health-Children and Youth version (ICF-CY). Results: 3406 records were identified leading to the inclusion of 34 caregiver report questionnaires on the impact of having, or caring for a child with, intellectual disabilities. Freely available questionnaires published in English after 2000 were eligible; screening tools, interviews and surveys were excluded. Questionnaire outcome goals were categorised to: 'behaviour', 'impact of the child with intellectual disabilities on others/impact of others on the child with intellectual disabilities', 'cognitive and adaptive functioning' and 'quality of life'. From the questionnaires, 152 subscales were identified and conceptually mapped using constructs from the ICF-CY. Conclusions: Most questionnaires focused on individual child behaviours, with gaps identified in consideration of environmental factors. Future studies should analyse the psychometric properties of available questionnaires to promote evidence-based practices.

Indexed as

ICF-CYlearning disabilitiesmeasuremeasurementparental report

Identifiers

PMID42656965
PMCPMC13508537

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.