Patient and provider views on the use of medical services by women with intellectual disabilities
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.
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Not being listened to created anxiety for some service users with intellectual disabilities and/or autism.
“Not being listened to created anxiety for some service users with intellectual disabilities and/or autism.48”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [48]
Accessible healthcare information is perceived to be a high priority by people with intellectual disabilities and/or autism.
“Accessible healthcare information is perceived to be a high priority by people with intellectual disabilities and/or autism.48–50”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [48]
Facilitators, in terms of reasonable adjustments in the clinical environment, may include easy-read information, coloured pictures, models, photos, videos, symbols, and demonstration dolls.
“Facilitators, in terms of reasonable adjustments in the clinical environment, may include easy-read information, coloured pictures, models, photos, videos, symbols, and demonstration dolls.13,36,48,65”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [48]
Additional time is often required for effective communication with people who have intellectual disabilities and/or autism.
“Additional time is often required for effective communication with people who have intellectual disabilities and/or autism.31,36,47,48”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [48]
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- Authors
- Wilkinson, J., Dreyfus, D., Bowen, D., & Bokhour, B.
- Affiliations
- Boston University (US)
- Corresponding author
- Wilkinson, J.
- Venue
- Journal of Intellectual Disability Research
- Publisher
- Wiley
- Published
- 2012-09-14
- Volume
- 57
- Issue
- 11
- Pages
- 1058-1067
- ISSN
- 0964-2633 (ISSN-L)
- 1365-2788
- OpenAlex
- W1559603700
- Cited by
- 36
- References
- 46
- Citations by year
- 2025: 3 · 2023: 2 · 2022: 9 · 2021: 1 · 2020: 1 · 2019: 5 · 2018: 4 · 2017: 4 · 2016: 2 · 2015: 1 · 2014: 4
- FWCI
- 1.54
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Intellectual Disability Research (publishedVersion)
- PubMed (publishedVersion)
- Funders
- National Cancer Institute (K07CA134547)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Social Sciences › Sociology and Political Science › Inclusion and Disability in Education and Sport
- Keywords
- intellectual disability, women with intellectual disabilities, physician-patient relationship, patient participation, general practitioners, support staff, primary care, implicit bias, clinic visits, patient communication, time constraints
- MeSH terms
- Adult, Aged, Attitude of Health Personnel, Communication, Female, Persons with Disabilities, Health Services, Humans, Male, Intellectual Disability, Middle Aged, Outpatients, Patient Participation, Physician-Patient Relations, Physicians, Primary Health Care
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