The role of people with intellectual disability in intellectual disability research: A systematic review of Delphi studies.
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| Titel: | The role of people with intellectual disability in intellectual disability research: A systematic review of Delphi studies. |
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| Autoren: | Piantedosi DK; School of Health and Social Development, Faculty of Health, Deakin University, Geelong, VIC, Australia.; School of Humanities and Social Sciences, La Trobe University, Melbourne, VIC, Australia.; Women with Disabilities Victoria (WDV), Melbourne, VIC, Australia., O'Shea A; School of Health and Social Development, Faculty of Health, Deakin University, Geelong, VIC, Australia.; Institute for Health Transformation, Deakin University, Geelong, VIC, Australia. |
| Quelle: | Journal of intellectual disabilities : JOID [J Intellect Disabil] 2025 Sep; Vol. 29 (3), pp. 727-742. Date of Electronic Publication: 2023 Dec 27. |
| Publikationsart: | Journal Article; Systematic Review |
| Sprache: | English |
| Info zur Zeitschrift: | Publisher: SAGE Publications Country of Publication: England NLM ID: 101229024 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1744-6309 (Electronic) Linking ISSN: 17446295 NLM ISO Abbreviation: J Intellect Disabil Subsets: MEDLINE |
| Imprint Name(s): | Original Publication: London : Thousand Oaks, CA : SAGE Publications, c2005- |
| MeSH-Schlagworte: | Intellectual Disability* , Delphi Technique* , Biomedical Research* , Persons with Intellectual Disabilities*, Humans ; Caregivers |
| Abstract: | Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The design of intellectual disability research warrants critical examination, as the knowledge produced through these approaches informs evidence-based practices. People with lived experience should be recognised as experts in understanding their own bodies, conditions, and treatment. This systematic review examined the design of Delphi studies to assess the extent to which people with intellectual disability are included as experts. The Delphi method, which gathers structured feedback from experts, offers insight into how lived experience is valued as a source of knowledge. Across fifty-five publications reporting on forty-nine separate Delphi studies that met our inclusion criteria, only nine involved people with intellectual disability directly. In contrast, family and informal caregivers were more frequently represented as experts, and their perspectives carried greater influence. The findings of this review include guidance for practitioners and researchers to facilitate greater participatory roles of people with intellectual disability. |
| Contributed Indexing: | Keywords: evidence-based practice; expert; inclusive research; lived experience; participatory research |
| Entry Date(s): | Date Created: 20231227 Date Completed: 20250904 Latest Revision: 20250911 |
| Update Code: | 20250911 |
| PubMed Central ID: | PMC12397557 |
| DOI: | 10.1177/17446295231225272 |
| PMID: | 38150570 |
| Datenbank: | MEDLINE |
Nájsť tento článok vo Web of Science | Abstract: | Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.<br />The design of intellectual disability research warrants critical examination, as the knowledge produced through these approaches informs evidence-based practices. People with lived experience should be recognised as experts in understanding their own bodies, conditions, and treatment. This systematic review examined the design of Delphi studies to assess the extent to which people with intellectual disability are included as experts. The Delphi method, which gathers structured feedback from experts, offers insight into how lived experience is valued as a source of knowledge. Across fifty-five publications reporting on forty-nine separate Delphi studies that met our inclusion criteria, only nine involved people with intellectual disability directly. In contrast, family and informal caregivers were more frequently represented as experts, and their perspectives carried greater influence. The findings of this review include guidance for practitioners and researchers to facilitate greater participatory roles of people with intellectual disability. |
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| ISSN: | 1744-6309 |
| DOI: | 10.1177/17446295231225272 |