General practitioners' perception of their role in care for people with intellectual disability.
Family doctors know they should care for adults with ID but say they lack training and regular caseloads to do it well.
01Research in Context
What this study did
The team mailed a short survey to 200 general-practice doctors in one English county.
They asked: Do you care for adults with intellectual disability? How ready do you feel?
One in three doctors mailed it back.
What they found
Every GP who replied agreed: caring for adults with ID is part of their job.
Most also said they lack the right training and see these patients too rarely to stay sharp.
Low caseloads feed the cycle—fewer patients means less practice and less confidence.
How this fits with other research
Four years later Burack et al. (2004) ran a bigger survey and mapped the exact topics GPs want training on—behaviour crises and sexual-health talks top the list.
Dai et al. (2023) widened the lens to all outpatient doctors nationwide and showed most still skip talking directly to the patient, echoing the 2000 readiness gap.
Winburn et al. (2014) pulled together caregiver studies and found the same worry: everyone feels under-prepared when sexuality issues arise, so the problem stretches beyond GPs.
Why it matters
If primary doctors keep feeling unsure, adults with ID will keep facing short visits, rushed exams, and avoidable sedation.
You can help by offering brief in-service training at the clinic, sharing picture schedules for medical visits, or scripting a one-page health passport that prompts the doctor and supports the patient.
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02At a glance
03Original abstract
The present study set out to determine general practitioners' (GPs') view of their role in the care of people with intellectual disability who live in the community, and to explore the special issues which providing this care raises for them. A postal questionnaire was sent to a random sample of 250 out of the 698 GPs in the southern region. Twenty statements were presented and participants indicated the extent of their agreement with each statement on a seven-point Likert-type scale. After each scaled response, an open-ended question obtained a written expansion of the numerical response. These qualitative responses were analysed thematically, and combined with descriptive and cluster analyses of quantitative responses to provide a robust assessment of the characteristics of respondents providing contrasting replies. The role of GPs as part of the group of carers for people with intellectual disability was well recognized. Their normal practice routines may not always be adequate because of the small number of patients an individual GP might care of and their lack of explicit training in the special medical needs of such people.
Journal of intellectual disability research : JIDR, 2000 · doi:10.1046/j.1365-2788.2000.00269.x