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

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.