Could Ethical Tensions in Oral Healthcare Management Revealed by Adults with Intellectual Disabilities and Caregivers Explain Unmet Oral Health Needs? Participatory Research with Focus Groups
Abstract
Background: Cognitively impaired patients often present poor oral health status that may be explained by ethical tensions in oral healthcare management. This participatory study explored such tensions among adults with intellectual disabilities and with caregivers. The second objective was to specify, with caregivers, the points that should be developed in a future study among dentists. Materials and Methods: Three focus groups involving adults with intellectual disabilities, family caregivers and professional caregivers were organized in France in 2013. Results: The thematic content analysis identified discrepancies between experiences and expectations, which were particularly marked for the dentist's competence and attitudes, the dentist's role in decisions, the dental care management and the French socio‐political context. Conclusions: These discrepancies could partly explain multiple attempts to find the ‘right’ dentist or the fact that care was abandoned, and could at least contribute to oral health needs being unmet.
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Poor attitudes held by both healthcare professionals and non-health professionals, across both primary and acute healthcare provider settings, is a recurring theme in the review's identified studies.
“Poor attitudes held by both healthcare professionals and non-health professionals, across both primary and acute healthcare provider settings, is a recurring theme in the review’s identified studies.22,31–33”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [31]
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 [31]
Fears include fears of being judged over lifestyle choices, of blood tests and vaccinations, of medical instruments, and fears associated with a lack of understanding about screening procedures.
“These include fears of being judged over lifestyle choices, of blood tests and vaccinations,38 of medical instruments,31 and fears associated with a lack of understanding about screening procedures.59”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [31]
Some people with intellectual disabilities and/or autism find the clinical environment daunting, owing to unpleasant or alarming noises, odours, and bright lights.
“Some people with intellectual disabilities and/or autism find the clinical environment daunting,63,64 owing to unpleasant or alarming noises, odours, and bright lights.31,65”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [31]
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Doherty, A. J., Atherton, H., Boland, P., Hastings, R., Hives, L., Hood, K., James-Jenkinson, L., Leavey, R., Randell, E., Reed, J., et al. (2020) · BJGP Open · doi:10.3399/bjgpopen20x101030 · Cited by 244 · see citing works
- Authors
- Blaizot, A., Hamel, O., Folliguet, M., Herve, C., Meningaud, J., & Trentesaux, T.
- Affiliations
- Université Paris Cité (FR)
- Laboratory of Medical Ethics and Forensic Medicine EA 4569 University of Paris Descartes Paris France
- Corresponding author
- Blaizot, Alessandra
- Venue
- Journal of Applied Research in Intellectual Disabilities
- Publisher
- Wiley
- Published
- 2015-11-04
- Volume
- 30
- Issue
- 1
- Pages
- 172-187
- ISSN
- 0952-9608 (ISSN-L)
- 1360-2322
- 1468-3148
- OpenAlex
- W2141347914
- Cited by
- 10
- References
- 35
- Citations by year
- 2025: 2 · 2023: 3 · 2021: 1 · 2020: 1 · 2019: 2 · 2018: 1
- FWCI
- 0.45
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Applied Research in Intellectual Disabilities (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Dentistry › Periodontics › Dental Health and Care Utilization
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- intellectual disability, oral health, unmet oral health needs, ethical conflicts, dental care management, family caregivers, professional caregivers, access to dental care
- MeSH terms
- Adult, Dental Care, Humans, Intellectual Disability, Oral Health, Caregivers, Focus Groups, Qualitative Research, Community-Based Participatory Research
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