Using Supporters to Increase Participation in Qualitative Research Interviews by People With Intellectual Disabilities.
Sarah A Hall, Roger J Stancliffe, Lynda Lahti Anderson
PMID 40639819WHAT IT FOUND
Supporters helped older adults with intellectual disabilities participate in interviews by simplifying questions, providing context, and affirming their responses.
Engagement varied widely, with some supporters speaking little and others co-creating answers, but no single strategy ensured equal participation.
Key findings
01Supporters assisted participation by simplifying questions, providing concrete examples, and helping participants remember events or dates.
02The level of interaction varied significantly; some supporters spoke little or not at all, while others engaged in extensive back-and-forth co-creation of answers.
03All participants chose their own supporter, and in seven of eight interviews, the participant with intellectual disabilities answered questions first.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The study analysed existing transcripts from a single topic (retirement), so findings may not apply to sensitive topics like sexuality or discrimination. All supporters were direct support professionals who had known the participants for at least one year, so results may differ with family or friend supporters. The sample included only older adults with mild to moderate intellectual disabilities, excluding those with severe disabilities or younger adults. No formal guidelines were given to supporters before the interviews, leading to variable levels of engagement.
Declared interests
The authors declare no conflicts of interest. The work was funded by the Department of Health and Human Services, Administration For Community Living, Rehabilitation Research and Training Center on Community Living and Participation Among People with Intellectual and Developmental Disabilities, and the National Institute on Disability, Independent Living, and Rehabilitation Research.
The easy way to misread this
Do not assume that having a supporter present automatically guarantees that the person with intellectual disabilities is the primary voice in the interview. In some cases, supporters spoke very little, while in others they co-created answers, and one supporter answered first more often than the participant. The quality of participation depended on the specific relationship and the participant's needs, not just the presence of a support person.