Patient and provider views on the use of medical services by women with intellectual disabilities.
Doctors still talk to the helper first—train staff to redirect the doctor back to the client.
01Research in Context
What this study did
The team talked with women who have intellectual disability and their doctors.
They asked both sides what helps and what hurts during medical visits.
The goal was to see why clinic meetings feel hard and how to fix them.
What they found
Doctors said they do not have enough time.
Women said they want the doctor to look at them, not only at the support worker.
Both groups felt upset when the doctor spoke to the helper instead of the patient.
How this fits with other research
Dai et al. (2023) asked 1000s of U.S. doctors the same question.
Three out of four still talk to the caregiver first, so the 2013 story is not old news.
Smith et al. (1997) and Geckeler et al. (2000) saw the same gap years earlier, showing the problem is stuck.
Lee et al. (2022) adds that mothers with ID also get skipped in parenting services, so the pattern spreads past the doctor’s office.
Why it matters
You can train support staff to point back to the client.
Teach the staff to wait, give the client extra seconds, and prompt the doctor to ask the client first.
One small shift in who talks first can grow the client’s voice and cut frustration for everyone.
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02At a glance
03Original abstract
BACKGROUND: People with intellectual disabilities (ID) receive primary care in community-based practices and are encouraged to participate in the physician-patient relationship. However, the nature of this participation is not known. METHODS: Qualitative data were analysed to obtain perspectives from patients and providers regarding clinic visits. Patient participants were recruited from community organisations, while physician participants were recruited from emails and phone calls to local and regional practices and a national and regional list serve. Analysis methods derived from grounded theory were used. RESULTS: Twenty-seven women with ID and 22 family physicians were interviewed. Themes important to both groups included time, how the support worker should be used in the encounter and the nature of the physician-patient relationship. Patients expressed frustration at how little time they spent with their physician, and wished that physicians would speak directly to them instead of to their support worker. Physicians felt that patients with ID took too much time, and said that they preferred communicating with the support worker. The interviews also revealed unconscious biases about people with ID. CONCLUSIONS: Patient participation is encouraged for people with ID, but is limited because of both physician and patient factors. Greater awareness of these factors may improve care for patients with ID.
Journal of intellectual disability research : JIDR, 2013 · doi:10.1111/j.1365-2788.2012.01606.x