Mapping the Instruments Used to Measure Well-Being on Children With Disabilities: A Scoping Review

Objective

To describe the self-report instruments used to measure well-being in children with disabilities, investigate their psychometric quality, cognitive accessibility and alignment with Keyes's operationalization of well-being, including emotional, psychological and social aspects.

Methods

MEDLINE, ProQuest, PubMed and CINAHL were searched for articles published from 2011 to March 2023, identifying 724 studies. Synonyms provided by thesaurus on the main constructs: ‘children’, ‘measure’, ‘disability’ and ‘mental health’ were employed in the search strategy. Two reviewers independently screened articles using criteria following the SPIDER framework, resulting in the inclusion of 13 articles. From these, 10 instruments were extracted and critically appraised using the COSMIN checklist, evaluating their psychometric properties. The cognitive accessibility and alignment to Keyes's dual continua model of mental health were analysed.

Results

The included instruments had fair to excellent psychometric properties. Instruments designed for children with disabilities demonstrated greater cognitive accessibility compared with those for the general child population. Well-being was primarily identified as hedonic, with social aspects of positive functioning underrepresented. Five of the 10 instruments measured quality of life but were used as well-being measures in studies. While most items aligned with the dual continua model, no single instrument encompassed all three aspects of well-being.

Conclusions

Although there is a growing effort to include children with disabilities in well-being research, a consensus on a comprehensive well-being self-report measure is lacking. Further research is needed to develop a multidimensional operationalization that includes psychological and social aspects of well-being for children with disabilities.

Summary

• Well-being measures focus on hedonic aspects—emotional well-being—and often exclude the social aspect of positive functioning within eudaimonia.
• There is a conceptual overlap between quality-of-life measures and well-being measures.
• There is a tendency to emphasize individual aspects of well-being over social dimensions.
• Participatory research methods reflect the ecological validity of the construct of cognitive accessibility as proposed by Kramer and Schwarts.
• Keyes' MHC-SF remains the most global proposal integrating eudemonic and hedonic aspects of well-being but has not been validated in children with disabilities.