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“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

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Title: “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
Authors: 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
Source: urn:ISSN:1098-3600 ; urn:ISSN:1530-0366 ; Genetics in Medicine, 27, 4, 101371
Publisher Information: Elsevier
Publication Year: 2025
Collection: UNSW Sydney (The University of New South Wales): UNSWorks
Subject Terms: 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
Description: 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.
Document Type: article in journal/newspaper
Language: 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
Availability: 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/
Accession Number: edsbas.8FD7A881
Database: BASE
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  Data: “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
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  Data: <searchLink fieldCode="AR" term="%22Strnadová%2C+I%22">Strnadová, I</searchLink><br /><searchLink fieldCode="AR" term="%22Dunn%2C+M%22">Dunn, M</searchLink><br /><searchLink fieldCode="AR" term="%22Molnar%2C+C%22">Molnar, C</searchLink><br /><searchLink fieldCode="AR" term="%22Loblinzk+Refalo%2C+J%22">Loblinzk Refalo, J</searchLink><br /><searchLink fieldCode="AR" term="%22Scully%2C+JL%22">Scully, JL</searchLink><br /><searchLink fieldCode="AR" term="%22Danker%2C+J%22">Danker, J</searchLink><br /><searchLink fieldCode="AR" term="%22Tso%2C+M%22">Tso, M</searchLink><br /><searchLink fieldCode="AR" term="%22Lim%2C+TQ%22">Lim, TQ</searchLink><br /><searchLink fieldCode="AR" term="%22Cathcart-King%2C+Y%22">Cathcart-King, Y</searchLink><br /><searchLink fieldCode="AR" term="%22Jackaman%2C+KM%22">Jackaman, KM</searchLink><br /><searchLink fieldCode="AR" term="%22Hayes%2C+S%22">Hayes, S</searchLink><br /><searchLink fieldCode="AR" term="%22Willow%2C+SA%22">Willow, SA</searchLink><br /><searchLink fieldCode="AR" term="%22Boyle%2C+J%22">Boyle, J</searchLink><br /><searchLink fieldCode="AR" term="%22Hansen%2C+J%22">Hansen, J</searchLink><br /><searchLink fieldCode="AR" term="%22Sarfaraz%2C+S%22">Sarfaraz, S</searchLink><br /><searchLink fieldCode="AR" term="%22Basckin%2C+C%22">Basckin, C</searchLink><br /><searchLink fieldCode="AR" term="%22Halliburton%2C+C%22">Halliburton, C</searchLink><br /><searchLink fieldCode="AR" term="%22Sri+Ganeshan%2C+T%22">Sri Ganeshan, T</searchLink><br /><searchLink fieldCode="AR" term="%22Middleton%2C+EK%22">Middleton, EK</searchLink><br /><searchLink fieldCode="AR" term="%22Terrill%2C+B%22">Terrill, B</searchLink><br /><searchLink fieldCode="AR" term="%22Palmer%2C+EE%22">Palmer, EE</searchLink><br /><searchLink fieldCode="AR" term="%22Loblinzk%2C+Julie%22">Loblinzk, Julie</searchLink><br /><searchLink fieldCode="AR" term="%22Bromwich%2C+Sierra%22">Bromwich, Sierra</searchLink>
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  Data: 2025
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  Data: <searchLink fieldCode="DE" term="%2231+Biological+Sciences%22">31 Biological Sciences</searchLink><br /><searchLink fieldCode="DE" term="%223105+Genetics%22">3105 Genetics</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Disparities%22">Health Disparities</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+and+Developmental+Disabilities+%28IDD%29%22">Intellectual and Developmental Disabilities (IDD)</searchLink><br /><searchLink fieldCode="DE" term="%22Clinical+Research%22">Clinical Research</searchLink><br /><searchLink fieldCode="DE" term="%22Brain+Disorders%22">Brain Disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Disparities+and+Racial+or+Ethnic+Minority+Health+Research%22">Health Disparities and Racial or Ethnic Minority Health Research</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Health%22">Mental Health</searchLink><br /><searchLink fieldCode="DE" term="%22Genetics%22">Genetics</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%228%2E1+Organisation+and+delivery+of+services%22">8.1 Organisation and delivery of services</searchLink><br /><searchLink fieldCode="DE" term="%22Generic+health+relevance%22">Generic health relevance</searchLink><br /><searchLink fieldCode="DE" term="%224+Quality+Education%22">4 Quality Education</searchLink><br /><searchLink fieldCode="DE" term="%223+Good+Health+and+Well+Being%22">3 Good Health and Well Being</searchLink><br /><searchLink fieldCode="DE" term="%22Humans%22">Humans</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Physicians%22">Physicians</searchLink><br /><searchLink fieldCode="DE" term="%22Focus+Groups%22">Focus Groups</searchLink><br /><searchLink fieldCode="DE" term="%22Female%22">Female</searchLink><br /><searchLink fieldCode="DE" term="%22Male%22">Male</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+Health+Care%22">Quality of Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Surveys+and+Questionnaires%22">Surveys and Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Delivery+of+Health+Care%22">Delivery of Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Literacy%22">Health Literacy</searchLink><br /><searchLink fieldCode="DE" term="%22Adult%22">Adult</searchLink><br /><searchLink fieldCode="DE" term="%22Coproduction%22">Coproduction</searchLink><br /><searchLink fieldCode="DE" term="%22Genetic+health+care%22">Genetic health care</searchLink><br /><searchLink fieldCode="DE" term="%22Health+inequities%22">Health inequities</searchLink><br /><searchLink fieldCode="DE" term="%22Mixed-method+evaluation%22">Mixed-method evaluation</searchLink><br /><searchLink fieldCode="DE" term="%22anzsrc-for%3A+31+Biological+Sciences%22">anzsrc-for: 31 Biological Sciences</searchLink>
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  Data: 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.
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