Inclusion and healthcare choices: the experiences of adults with learning disabilities
Abstract
Accessible summary People with learning disabilities do not get to make as many choices as other people. This project looked at the choices people make about everyday things and about health services. We spoke to people with learning disabilities, their carers and Physiotherapy staff. We found that people with a learning disability were making choices about everyday things but felt that other people made choices about health services for them. We found that carers and healthcare staff need support to understand how difficult it can be to make choices, and how they can help people with a learning disability to make choices. Summary People with learning disabilities have fewer choice opportunities than the general population. Existing research provides some insight, but the choice‐making experiences of those who do not always utilise available healthcare remains under‐explored. This research explored the choice‐making experiences of two groups of individuals with a learning disability: (Group 1 – Irregular attenders) those who had opted out of healthcare appointments for avoidable reasons; and (Group 2 – Regular attenders) those who had attended all appointments or not attended for unavoidable reasons. Interviews were carried out with people with learning disabilities (N = 4) and/or their primary carer (N = 13). In addition to these interviews, Physiotherapy staff participated in a focus group (Group 3). The interviewed individuals with learning disabilities described experiences of and opportunities for making everyday choices but generally identified ‘others’ as being responsible for making their healthcare choices. Greater understanding of the healthcare expectations and experiences of individuals with learning disabilities, carers and healthcare staff is required to support people with learning disabilities as active healthcare decision‐makers.
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People with intellectual disabilities and/or autism value healthcare professionals, their support network, and other professionals who work closely with them and who have specialist knowledge and experience of working with people who have intellectual disabilities.
“People with intellectual disabilities and/or autism value healthcare professionals, their support network, and other professionals who work closely with them and who have specialist knowledge and experience of working with people who have intellectual disabilities.26,67–72”
From Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review (2020) · cites this paper as [68]
Cites
Using thematic analysis in psychology
Braun, V., & Clarke, V. (2006) · Qualitative Research in Psychology · doi:10.1191/1478088706qp063oa · Cited by 194,414 · see citing works
Basics of Qualitative Research
Ozanne, J. L., Strauss, A., & Corbin, J. M. (1992) · Journal of Marketing Research · doi:10.2307/3172751 · Cited by 17,852 · see citing works
Qualitative Research Methods for the Social Sciences
Wiltfang, G. L., & Berg, B. L. (1990) · Teaching Sociology · doi:10.2307/1317652 · Cited by 469 · see citing works
Bannerman, D. J., Sheldon, J. B., Sherman, J. A., & Harchik, A. E. (1990) · Journal of Applied Behavior Analysis · doi:10.1901/jaba.1990.23-79 · Cited by 327 · see citing works
Cannella, H., OâReilly, M., & Lancioni, G. E. (2004) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2004.01.006 · Cited by 223 · see citing works
The prevalence and determinants of obesity in adults with intellectual disabilities
Melville, C. A., Hamilton, S., Hankey, C. R., Miller, S. A., & Boyle, S. (2006) · Obesity Reviews · doi:10.1111/j.1467-789x.2006.00296.x · Cited by 219 · see citing works
How self-determined are people with mental retardation? The National Consumer Survey.
Wehmeyer, M. L., & Metzler, C. A. (1995) · PubMed · Cited by 199 · see citing works
General practitioners’ educational needs in intellectual disability health
Phillips, A., Morrison, J., & Davis, R. W. (2004) · Journal of Intellectual Disability Research · doi:10.1111/j.1365-2788.2004.00503.x · Cited by 170 · see citing works
Hatton, C., Emerson, E., Rivers, M., Mason, H., Mason, L., Swarbrick, R., Kiernan, C., Reeves, D., & Alborz, A. (1999) · Journal of Intellectual Disability Research · doi:10.1046/j.1365-2788.1999.00208.x · Cited by 158 · see citing works
Kishi, G. S., Teelucksingh, B., Zollers, N., et al. (1988) · PubMed · Cited by 144 · see citing works
Hastings, R. P., Horne, S., & Mitchell, G. (2004) · Journal of Intellectual Disability Research · doi:10.1111/j.1365-2788.2003.00523.x · Cited by 133 · see citing works
Enabling young people with a learning disability to make choices at a time of transition
Cameron, L., & Murphy, J. (2002) · British Journal of Learning Disabilities · doi:10.1046/j.1468-3156.2002.00165.x · Cited by 119 · see citing works
Time to make up your mind: why choosing is difficult
Harris, J. (2003) · British Journal of Learning Disabilities · doi:10.1046/j.1468-3156.2003.00181.x · Cited by 84 · see citing works
Jenkinson, J. C. (1993) · Disability & Society · doi:10.1080/02674649366780351 · Cited by 81 · see citing works
The Choice Questionnaire: A scale to assess choices exercised by adults with intellectual disability
Stancliffe, R. J., & Parmenter, T. R. (1999) · Journal of Intellectual & Developmental Disability · doi:10.1080/13668259900033911 · Cited by 78 · see citing works
Health in People with Intellectual Disabilities: Current Knowledge and Gaps in Knowledge
Valk, H. M. J. V. S. L. (2005) · Journal of Applied Research in Intellectual Disabilities · doi:10.1111/j.1468-3148.2005.00265.x · Cited by 76 · see citing works
From biscuits to boyfriends: the ramifications of choice for people with learning disabilities
Smyth, C. M., & Bell, D. M. (2006) · British Journal of Learning Disabilities · doi:10.1111/j.1468-3156.2006.00402.x · Cited by 70 · see citing works
Health Needs Assessment Report: People with Learning Disabilities in Scotland
Kandel, I., Morad, M., & Merrick, J. (2004) · Journal of Policy and Practice in Intellectual Disabilities · doi:10.1111/j.1741-1130.2004.04020.x · Cited by 69 · see citing works
Consumer Choice and Empowerment in Supported Employment Services: Issues and Strategies
West, M. D., & Parent, W. S. (1992) · Research and Practice for Persons with Severe Disabilities · doi:10.1177/154079699201700109 · Cited by 67 · see citing works
Melville, C. A., Cooper, S., Morrison, J., et al. (2005) · Journal of Intellectual Disability Research · doi:10.1111/j.1365-2788.2005.00719.x · Cited by 59 · see citing works
Decision-making by community residents with an intellectual disability
Jenkinson, J., Copeland, C., Drivas, V., et al. (1992) · Journal of Intellectual & Developmental Disability · doi:10.1080/07263869200034761 · Cited by 39 · see citing works
Schalock, R. L., Brown, R., Cummins, R. G., et al. (2000) · ORCA Online Research @Cardiff (Cardiff University) · doi:10.1046/j.1365-2788.2000.d01-124.x · Cited by 6 · see citing works
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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
Bigby, C., Whiteside, M., & Douglas, J. (2019) · Journal of Intellectual & Developmental Disability · doi:10.3109/13668250.2017.1378873 · Cited by 123 · see citing works
Mac Giolla Phadraig, C., Dougall, A., Stapleton, S., McGeown, D., Nunn, J., & Guerin, S. (2016) · British Journal of Learning Disabilities · doi:10.1111/bld.12152 · Cited by 10 · see citing works
- Authors
- Ferguson, M., Jarrett, D., & Terras, M.
- Affiliations
- NHS Greater Glasgow and Clyde (GB)
- NHS Ayrshire and Arran (GB)
- ORCID
- Terras, Melody
- Venue
- British Journal of Learning Disabilities
- Publisher
- Wiley
- Published
- 2011-02-11
- Volume
- 39
- Issue
- 1
- Pages
- 73-83
- ISSN
- 0261-9997 (ISSN-L)
- 1354-4187
- 1468-3156
- OpenAlex
- W1543703962
- Cited by
- 33
- References
- 22
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 1 · 2023: 5 · 2022: 3 · 2021: 1 · 2020: 4 · 2019: 2 · 2018: 2 · 2017: 2 · 2016: 1 · 2015: 4 · 2014: 1 · 2013: 1 · 2012: 2
- FWCI
- 0.96
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- British Journal of Learning Disabilities (publishedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Down syndrome and intellectual disability research
- Social Sciences › Safety Research › Disability Rights and Representation
- Social Sciences › Sociology and Political Science › Inclusion and Disability in Education and Sport
- Keywords
- learning disabilities, patient autonomy, caregivers, physiotherapy, healthcare decision-making
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