The inclusion of adults with intellectual disabilities in health research – challenges, barriers and opportunities: a mixed‐method study among stakeholders in England.
Background: The study aims to understand system barriers to research participation for people with intellectual disabilities. Methods: A mixed‐methods approach examined the inclusivity of people with intellectual disabilities (IDs) in a random sample of National Institute for Health and Care Researc...
| Publicado en: | Journal of Intellectual Disability Research Vol. 68; no. 2; pp. 140 - 150 |
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| Autores principales: | , , , , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Feb2024
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=174713308&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 174713308 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09642633 EUL jtl: Journal of Intellectual Disability Research issn: 09642633 maglogo: Y pubinfo: dt: Feb2024 vid: 68 iid: 2 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 174713308 172861405 174713308 174713308 10.1111/jir.13097 174713308 ppf: 140 ppct: 10 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: The inclusion of adults with intellectual disabilities in health research – challenges, barriers and opportunities: a mixed‐method study among stakeholders in England. aug: au: Bishop, R. Laugharne, R. Shaw, N. Russell, A. M. Goodley, D. Banerjee, S. Clack, E. Shankar, R. affil: Cornwall Intellectual Disability Equitable Research (CIDER), Cornwall Partnership NHS Foundation Trust, Truro, UK sug: subj: Research Subjects Psychosocial Factors Intellectual Disability Psychosocial Factors Health Services Research Consumer Participation Human England Multimethod Studies Random Sample Questionnaires Feedback Adult Thematic Analysis Interviews Descriptive Statistics Funding Source Adult: 19-44 years ab: Background: The study aims to understand system barriers to research participation for people with intellectual disabilities. Methods: A mixed‐methods approach examined the inclusivity of people with intellectual disabilities (IDs) in a random sample of National Institute for Health and Care Research (NIHR) studies conducted in 2019–2020. An online questionnaire (stage 1) was sent to the selected studies lead investigators. An expert by experience panel of 25 people with intellectual disabilities (IDs, stage 2), discussed the stage 1 feedback. Descriptive statistics for quantitative data and thematic analysis for qualitative data was conducted. Results: Of 180 studies reviewed, 131 studies (78%) excluded people with IDs. Of these, 45 (34.3%) study researchers provided feedback. Seven (20%) of the 34 studies which included people with IDs gave feedback. Of all respondents over half felt their study had some relevance to people with IDs. A minority (7.6%) stated their study had no relevance. For a quarter of respondents (23.5%), resource issues were a challenge. Qualitative analysis of both stages produced four overarching themes of Research design and delivery, Informed consent, Resource allocation, and Knowledge and skills. Conclusion: Health research continues to exclude people with IDs. Researchers and experts by experience identified non‐accessible research design, lack of confidence with capacity and consent processes, limited resources such as time and a need for training as barriers. Ethics committees appear reluctant to include people with cognitive deficits to 'protect' them. People with IDs want to be included in research, not only as participants but also through coproduction. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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