Involving adolescents with intellectual disability in the adaptation of self-reported subjective well-being measures: participatory research and methodological considerations.
Let teens with ID co-design their own surveys—3-point scales and pictures unlock real self-report.
01Research in Context
What this study did
Teens with intellectual disability joined co-design workshops.
They helped change two standard well-being surveys into forms they could fill out themselves.
The team used drawings, short words, and one question per page.
What they found
Eight clear changes made the surveys teen-friendly.
Key tweaks were 3-point answer scales, pictures, and fewer words.
The new format let teens speak for themselves instead of using parents.
How this fits with other research
Grumi et al. (2022) did the same co-design trick for kids with visual impairment.
Syropoulou et al. (2021) and McGonigle et al. (2014) also shortened adult scales for youth with ID.
Guillemot et al. (2024) asked parents about teen well-being and got opposite views.
The new study shows teens can answer directly, so we need both voices, not just moms and dads.
Why it matters
You no longer have to guess how your teen client feels.
Use the 3-point, picture-based forms in your next intake.
You will get faster, clearer data and show respect by asking the teen first.
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02At a glance
03Original abstract
BACKGROUND: The 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. METHOD: Two 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. RESULTS: Specific 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. CONCLUSIONS: This 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.
Journal of intellectual disability research : JIDR, 2022 · doi:10.1111/jir.12936