The assessment of emotional distress experienced by people with an intellectual disability: a study of different methodologies.
Expect poor agreement when you measure emotional distress in clients with ID—always collect self-report plus another source.
01Research in Context
What this study did
The researchers compared three ways to measure anger, depression and stress in adults with mild to moderate intellectual disability. They used self-report forms, caregiver interviews and staff ratings. The goal was to see how well the three sources agreed.
Each method asked similar questions but used different wording. The team wanted to know which method best told the three emotions apart.
What they found
Agreement across the three tools was low. Self-report forms did the best job at separating anger, depression and stress. Staff and caregiver answers often blurred together.
In short, if you ask only one person, you may miss the real emotional picture.
How this fits with other research
Emerson et al. (2013) extends this warning. They say self-report and proxy data in ID carry built-in validity limits. Treat every source with caution and flag limits in your reports.
Bassett-Gunter et al. (2017) seems to contradict the low-agreement rule, but the topic differs. For substance use in mild-borderline ID, self- plus staff questionnaires matched urine and hair tests. Agreement can be high when the behavior is concrete and recent.
Spriggs et al. (2015) and Schmidt et al. (2010) echo the same pattern for quality of life. Adults with ID rate their own lives higher than proxies do. Expect gaps and collect both views.
Why it matters
Low cross-informant agreement is the norm, not the exception. Plan to gather self-report plus at least one other source before you write goals for emotional wellbeing. State each source's limits in your assessment report so teams do not over-interpret any single score.
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02At a glance
03Original abstract
The assessment of emotional disorders such as anger, depression and stress among people with an intellectual disability has traditionally used one of three methodologies: ratings by a significant other, a clinical interview or self-report. Despite the widespread use of all three methodologies, there is little research into their equivalence. This paper assesses the convergence among these three approaches for 147 people with a mild or moderate intellectual disability across the affective domains of anger, depression and stress. The results showed the overlap among the three methods to be consistently low, although limited convergence was found between self-report and clinical interview. Ratings by work supervisors discriminated least clearly between anger, depression and stress while self-report was the most discriminating between these three overlapping but conceptually distinct states. Suggestions are made for ongoing research into the methodologies of assessing affective states among people with an intellectual disability.
Research in developmental disabilities, 2000 · doi:10.1016/s0891-4222(00)00054-8