ArticleJournal of intellectual disability research : JIDR2022
Involving adolescents with intellectual disability in the adaptation of self-reported subjective well-being measures: participatory research and methodological considerations.
Article in Journal of intellectual disability research : JIDR, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.
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Who cites it
13 citing papers in PubMed.
- Defining and measuring emotional well-being in intellectual and developmental disabilities: A scoping review.Research in developmental disabilities · 2025Article
- Mapping the Instruments Used to Measure Well-Being on Children With Disabilities: A Scoping Review.Child: care, health and development · 2025Article
- Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skills.International journal for equity in health · 2025Article
- Engaging people with lived experience of psychological disorders: Current research and future directions for community-engaged measure development in psychological science.Clinical psychological science : a journal of the Association for Psychological Science · 2025Article
- Collaborating With Young People: Identifying the Barriers and Facilitators in Co-Designed Research.Health expectations : an international journal of public participation in health care and health policy · 2025Review
- Codesign is the zeitgeist of our time, but what do we mean by this? A scoping review of the concept of codesign in collaborative research with young people.Health research policy and systems · 2025Article
- Subjective measures of disability in children and adolescents: opportunities, challenges, and implications.Frontiers in rehabilitation sciences · 2025Article
- Oxytocin in autism: Rethinking treatment and research through a neurodivergent perspective.Psychoneuroendocrinology · 2025Article
- Anything goes for participant, patient and public involvement in youth mental health research.JCPP advances · 2024Article
- No decision about me, without me: Collaborating with young people in mental health research.JCPP advances · 2024Article
- The mental health and well-being of adolescents with/without intellectual disability in the UK.Epidemiology and psychiatric sciences · 2023Article
- Involving adolescents with intellectual disability in the adaptation of self-reported subjective well-being measures: participatory research and methodological considerations.Journal of intellectual disability research : JIDR · 2022Article
- Navigating the outcome maze: a scoping review of outcomes and instruments in clinical trials in genetic neurodevelopmental disorders and intellectual disability.Therapeutic advances in rare diseaseArticle
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Authors and funding
4 authors.
Funding
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Abstract
backgroundThe measurement of subjective well-being is challenging with samples of adolescents with intellectual disability (ID) given the cognitive and linguistic difficulties they face in comprehending standardised measures, and as such is primarily based on proxy reports. The lack of appropriate tools needs to be addressed so that adolescents with ID can self-report on their own well-being. The current study reports on the use of participatory research methods to adapt and modify two standardised self-report measures of subjective well-being suitable for completion by adolescents with ID.
methodTwo special schools were recruited for this study. At each school, staff (n = 15) and pupils aged 11-17 years (n = 35) participated. A series of co-design workshops were conducted to adapt two standardised subjective well-being measures: Kidscreen-10 and short-form Warwick-Edinburgh Mental Well-being Scale.
resultsSpecific aspects for measure adaption were identified: simplifying the item wording and phrasing; inclusion of pictorial communication symbols and visual prompts to represent the meaning of items; changing of tense of questions from past to present; asking questions rather than statements; reducing 5-point Likert scales to 3-point or dichotomous; presenting one item at a time during administration; and developing alternate formats of the survey to ensure inclusivity.
conclusionsThis paper illustrates the value of using participatory research methods when working alongside adolescents with ID and offers methodological, as well as practical, guidance in the context of adapting subjective self-report measures for this target group, serving as a guide to fellow researchers and clinicians interested in modifying or developing self-report measures for adolescents with ID.
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