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Meeting in the middle: improving communication in primary health care consultations with people with an intellectual disability
Abstract
The increased presence and participation in Australian society of people with an intellectual disability provides challenges for the provision of primary health care. General practitioners (GPs) identify themselves as ill equipped to provide for this heterogeneous population. A major obstacle to the provision of appropriate health care is seen as inadequate communication between the GP and the person with an intellectual disability, who may or may not be accompanied by a carer or advocate. This qualitative study in which five GPs, three people with intellectual disability, seven carers and two advocates (parent and friend) were interviewed was conducted in Brisbane, Australia. The aim was to better understand the factors that have an impact upon the success of communication in a medical consultation. Findings suggested that GPs were concerned with the aspects of communication difficulties which influenced their ability to adequately diagnose, manage and inform patients. Implications for practice management were also identified. People with intellectual disability reported frustration when they felt that they could not communicate adequately with the GP and annoyance when they were not included in the communication exchange. Carers were strong advocates for the person with intellectual disability, but indicated insufficient skill and knowledge to provide the level of assistance required in the consultation. The outcome was a model of cooperation that outlined the responsibilities of all players in the medical encounter, prior to, during and after the event.
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“Healthcare practitioners may rely on communicating with a carer, family member, or support worker rather than with the service user directly.23,25,36,45,47”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [36]
In the citing paper
“A warm, friendly, and caring attitude from healthcare providers enables service users to access healthcare facilities and discuss sensitive health concerns.22,34–37”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [36]
In the citing paper
“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 [36]
In the citing paper
“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 [36]
In the citing paper
“This notion is also shared by healthcare professionals themselves, with suggestions that this would provide the opportunity to gain a better understanding of the medical history and communication style of the service user.36”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [36]
In the citing paper
“A joined-up approach, in which the sharing of inter-agency information is key, may help alleviate service users’ healthcare fears.26,36”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [36]
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“For individuals with cognitive impairment, imparting health information and teaching health management skills to their caregivers are recommended.(53)”
BackgroundDoherty, A. J., Jones, S. P., Chauhan, U., & Gibson, J. M. E. (2019) · Journal of Applied Research in Intellectual Disabilities · doi:10.1111/jar.12596 · Cited by 7
Kersten, M. L., Wilson, N. J., Pracilio, A., Howie, V. A., Trollor, J. N., Buckley, T. A., Morphet, J., Bryce, J., Griffin, K., & Cashin, A. J. (2023) · Journal of Intellectual Disabilities · doi:10.1177/17446295231174282 · Cited by 9
“…standardized questionnaires that are appropriate for non-typical thinkers and/ or communicators (Stancliffe et al., 2014) and collaborating with caregivers to better understand communication from individuals with intellectual disability and/or autism (Foley and Trollor, 2015; Ziviani et al., 2004).”
Selick, A., Durbin, J., Salonia, C., Volpe, T., Orr, E., Hermans, H., Zaretsky, L., Malhas, M., & Lunsky, Y. (2022) · Journal of Applied Research in Intellectual Disabilities · doi:10.1111/jar.12975 · Cited by 6
The use of AI in epilepsy and its applications for people with intellectual disabilities: commentary
Milne‐Ives, M., Brownson-Smith, R., Ananthakrishnan, A., Wang, Y., Cong, C., Winston, G. P., & Meinert, E. (2025) · Acta Epileptologica · doi:10.1186/s42494-025-00205-7 · Cited by 6
van den Bemd, M., Leensen, M. C. J., Cuypers, M., Leusink, G. L., Schalk, B. W. M., & Bischoff, E. W. M. A. (2024) · BMC Health Services Research · doi:10.1186/s12913-024-11155-0 · Cited by 6
Rinaldi, R., Duplat, J., & Haelewyck, M.-C. (2021) · Journal of Intellectual Disabilities · doi:10.1177/17446295211009660 · Cited by 6
“the informant and not the person herself) (Ineichen and Russell, 1987; Krahn et al., 2015; Lennox et al., 1997, 2000; May and Kennedy, 2010; Ziviani et al., 2004).”
BackgroundWigham, S., Melvin, E., Lester, J., Bourne, J., Harris, M., McKinnon, I., & Hackett, S. (2023) · British Journal of Learning Disabilities · doi:10.1111/bld.12544 · Cited by 5
Golub-Victor, A. C., Peterson, B., Calderón, J. L. R., et al. (2022) · Intellectual and developmental disabilities · doi:10.1352/1934-9556-60.5.477 · Cited by 4
Northrup, R. A., Jacobson, L. A., & Pritchard, A. E. (2023) · Patient Education and Counseling · doi:10.1016/j.pec.2023.108020 · Cited by 4
Chou, Y., Chen, B., Pu, C., et al. (2025) · Journal of Intellectual Disability Research · doi:10.1111/jir.13220 · Cited by 4
“Communication problems with healthcare professionals are a major obstacle to equitable care (Ziviani et al. 2004; Wullink et al. 2009; ).”
Metadata
- Authors
- Ziviani, J., Lennox, N., Allison, H., Lyons, M., & Del Mar, C.
- Affiliations
- The University of Queensland (AU)
- University of Newcastle Australia (AU)
- Centre for General Practice, University of Queensland, Australia
- Venue
- Journal of Intellectual & Developmental Disability
- Publisher
- Informa UK Limited
- Published
- 2004-09
- Volume
- 29
- Issue
- 3
- Pages
- 211-225
- ISSN
- 0045-0634 (ISSN-L)
- 1366-8250
- 1469-9532
- OpenAlex
- W1990912406
- Cited by
- 132
- References
- 0
- Citations by year
- 2026: 5 · 2025: 7 · 2024: 7 · 2023: 8 · 2022: 14 · 2021: 3 · 2020: 6 · 2019: 9 · 2018: 4 · 2017: 10 · 2016: 12 · 2015: 5 · 2014: 10 · 2013: 7 · 2012: 9
- FWCI
- 5.75
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Intellectual & Developmental Disability (publishedVersion)
- Topics
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Health Sciences › Health Professions › General Health Professions › Interpreting and Communication in Healthcare
- Keywords
- intellectual disability, primary care, physician-patient communication, general practitioners, caregivers, patient advocates, medical consultation, communication difficulties, diagnosis and management, patient inclusion, practice management, cooperation models
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