Academic Journal
“All doctors should be trained in that”: The coproduction and mixed-methods evaluation of an educational toolkit to enable safe, high-quality genetic health care for people with intellectual disability
| Τίτλος: | “All doctors should be trained in that”: The coproduction and mixed-methods evaluation of an educational toolkit to enable safe, high-quality genetic health care for people with intellectual disability |
|---|---|
| Συγγραφείς: | Strnadová, I, Dunn, M, Molnar, C, Loblinzk Refalo, J, Scully, JL, Danker, J, Tso, M, Lim, TQ, Cathcart-King, Y, Jackaman, KM, Hayes, S, Willow, SA, Boyle, J, Hansen, J, Sarfaraz, S, Basckin, C, Halliburton, C, Sri Ganeshan, T, Middleton, EK, Terrill, B, Palmer, EE, Loblinzk, Julie, Bromwich, Sierra |
| Πηγή: | urn:ISSN:1098-3600 ; urn:ISSN:1530-0366 ; Genetics in Medicine, 27, 4, 101371 |
| Στοιχεία εκδότη: | Elsevier |
| Έτος έκδοσης: | 2025 |
| Συλλογή: | UNSW Sydney (The University of New South Wales): UNSWorks |
| Θεματικοί όροι: | 31 Biological Sciences, 3105 Genetics, Health Disparities, Intellectual and Developmental Disabilities (IDD), Clinical Research, Brain Disorders, Health Disparities and Racial or Ethnic Minority Health Research, Mental Health, Genetics, Health Services, 8.1 Organisation and delivery of services, Generic health relevance, 4 Quality Education, 3 Good Health and Well Being, Humans, Intellectual Disability, Physicians, Focus Groups, Female, Male, Quality of Health Care, Surveys and Questionnaires, Delivery of Health Care, Health Literacy, Adult, Coproduction, Genetic health care, Health inequities, Mixed-method evaluation, anzsrc-for: 31 Biological Sciences |
| Περιγραφή: | Purpose: People with intellectual disability inequitably access high-quality genetic health care. However, they are keen to understand genetic health care and recommend that clinicians need education on delivering more inclusive care and that multimodal genetic health literacy resources should be coproduced. Methods: Our inclusive research team applied best-practice coproduction principles to deliver a suite of resources, the GeneEQUAL Toolkit. Mixed-methods evaluation, including surveys and focus group/interviews, assessed (1) clinicians’ perceived capabilities, motivation, and opportunities for providing inclusive health care for people with intellectual disability before and after exploring the Toolkit; (2) the perceptions and opinions of people with intellectual disability about the Toolkit; (3) the reach of the Toolkit components; and (4) the reflections of people with intellectual disability and clinicians on the coproduction process. Results: The Toolkit met the expectations and preferences of people with intellectual disability and clinicians, and had a global reach. Coproduction was feasible and judged as critical for the high value of the Toolkit, in motivating clinicians to change their clinical practice and empowering people with intellectual disability. Conclusion: Coproduction can be successfully applied to improve the engagement of people with intellectual disability, potentially reducing health inequity and improving the safety and quality of genetic health care. |
| Τύπος εγγράφου: | article in journal/newspaper |
| Γλώσσα: | unknown |
| Relation: | https://hdl.handle.net/1959.4/106469; https://doi.org/10.1016/j.gim.2025.101371 |
| DOI: | 10.1016/j.gim.2025.101371 |
| Διαθεσιμότητα: | https://hdl.handle.net/1959.4/106469 https://doi.org/10.1016/j.gim.2025.101371 |
| Rights: | open access ; https://purl.org/coar/access_right/c_abf2 ; CC BY ; https://creativecommons.org/licenses/by/4.0/ |
| Αριθμός Καταχώρησης: | edsbas.8FD7A881 |
| Βάση Δεδομένων: | BASE |
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