Content validation of the Quality of Life Inventory—Disability

Amy Epstein, Katrina Williams, Dinah Reddihough, Nada Murphy, Helen Leonard, Andrew Whitehouse, Peter Jacoby, Jenny Downs

Research output: Contribution to journalArticle

Abstract

Background: Focus is shifting to better understand the lived experiences of children with intellectual disability in relation to their quality of life (QOL). Yet no available QOL measures are grounded in the domains important for this population. We previously conducted qualitative parent caregiver interviews identifying QOL domains in children with intellectual disability to constitute a new measure of QOL. This study describes the content validity of the Quality of Life Inventory—Disability (QI-Disability), a parent-report measure developed for children with intellectual disability. Methods and Results: Questionnaire items were extracted from a qualitative dataset of 77 parent caregiver interviews. To establish content validation, a draft of QI-Disability was administered to 16 parent caregivers of children with intellectual disability (Down syndrome, Rett syndrome, cerebral palsy, or autism spectrum disorder). Parents participated in a cognitive interviewing procedure known as the “think-aloud” method. The process of item generation, cognitive debriefing, and refinement of QI-Disability prior to its pilot testing are described. A conceptual framework is presented. Conclusions: Satisfactory content validity is reported, where ongoing consumer feedback shaped the dataset from which the final items were selected. Use of QI-Disability for children with intellectual disability will allow for greater insight into service utility and targeted intervention.

Original languageEnglish
Pages (from-to)654-659
Number of pages6
JournalChild: Care, Health and Development
Volume45
Issue number5
DOIs
Publication statusPublished - 1 Jan 2019

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Disabled Children
Intellectual Disability
Quality of Life
Caregivers
Interviews
Rett Syndrome
Cerebral Palsy
Down Syndrome
Parents
Population
Datasets

Cite this

Epstein, Amy ; Williams, Katrina ; Reddihough, Dinah ; Murphy, Nada ; Leonard, Helen ; Whitehouse, Andrew ; Jacoby, Peter ; Downs, Jenny. / Content validation of the Quality of Life Inventory—Disability. In: Child: Care, Health and Development. 2019 ; Vol. 45, No. 5. pp. 654-659.
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Content validation of the Quality of Life Inventory—Disability. / Epstein, Amy; Williams, Katrina; Reddihough, Dinah; Murphy, Nada; Leonard, Helen; Whitehouse, Andrew; Jacoby, Peter; Downs, Jenny.

In: Child: Care, Health and Development, Vol. 45, No. 5, 01.01.2019, p. 654-659.

Research output: Contribution to journalArticle

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