Inclusion in primary care for people with intellectual disabilities: Gaining the perspective of service user and supporting social care staff
Abstract
The aim of this study was to gain service user and social care staff perspectives on the barriers facing people with intellectual disabilities when accessing primary healthcare. A qualitative mixed methods semi-structured approach involved the use of focus groups and individual interviews within the service users' homes. A purposive sampling strategy identified people using primary healthcare in the last 6 months ( N = 6) with support from social care staff ( N = 19). Three emergent themes were common to service users and carer staff: `accessing the surgery', `communication issues' and `waiting around'. Other themes were unique to each group. Social care staff identified the `attitudes and behaviour of primary healthcare staff' as sometimes problematic, and the importance of `knowing the service user'. Service users identified `feelings about going to the doctor', `health education' and `making changes'. Gaining these views is an important first step in improving access to primary healthcare.
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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 [32]
Carers do not always allow the service user to speak for themselves or carers might try to protect them from perceived harmful communication, thereby preventing service users from exerting control over their own healthcare needs.
“Carers do not always allow the service user to speak for themselves or carers might try to protect them from perceived harmful communication,28 thereby preventing service users from exerting control over their own healthcare needs.32”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [32]
The waiting room may induce anxiety, especially if the individual is unsure of why they are there.
“The waiting room may induce anxiety, especially if the individual is unsure of why they are there.32”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [32]
Long waiting times are a major cause of anxiety and stress.
“Long waiting times are a major cause of anxiety and stress.25,32,45,78,79”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [32]
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References 36 · Cited by 30
- Authors
- Jones, M. C., McLafferty, E., Walley, R., Toland, J., & Melson, N.
- Affiliations
- University of Dundee (GB)
- NHS Lothian (GB)
- NHS Fife (GB)
- Corresponding author
- Jones, Martyn C.
- ORCID
- Jones, Martyn C.
- Venue
- Journal of Intellectual Disabilities
- Publisher
- SAGE Publications
- Published
- 2008-06
- Volume
- 12
- Issue
- 2
- Pages
- 93-109
- ISSN
- 1744-6295 (ISSN-L)
- 1744-6309
- OpenAlex
- W2096998168
- Cited by
- 30
- References
- 36
- Citations by year
- 2026: 1 · 2025: 1 · 2023: 3 · 2022: 5 · 2021: 2 · 2020: 2 · 2019: 1 · 2018: 2 · 2017: 1 · 2016: 2 · 2014: 3 · 2013: 2 · 2012: 1
- FWCI
- 0.99
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Journal of Intellectual Disabilities (publishedVersion)
- PubMed (publishedVersion)
- Discovery Research Portal (University of Dundee) (publishedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Social Sciences › Sociology and Political Science › Inclusion and Disability in Education and Sport
- Social Sciences › Safety Research › Disability Rights and Representation
- Keywords
- intellectual disability, primary care access, social inclusion, barriers to care, social care staff, service user perspectives, communication difficulties, clinician attitudes, health education, waiting time, caregivers
- MeSH terms
- Adult, Aged, Attitude of Health Personnel, Communication, Family Practice, Female, Health Education, Health Services Accessibility, Humans, Male, Middle Aged, Primary Health Care, Scotland, Social Support, Social Work, Caregivers, Focus Groups, Persons with Intellectual Disabilities
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