{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T17:33:13Z","timestamp":1791999193823,"version":"4.4.0"},"reference-count":52,"publisher":"Oxford University Press (OUP)","issue":"3","license":[{"start":{"date-parts":[[2026,2,23]],"date-time":"2026-02-23T00:00:00Z","timestamp":1771804800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"National Science Center, Poland","award":["2023\/49\/N\/HS1\/01023"],"award-info":[{"award-number":["2023\/49\/N\/HS1\/01023"]}]},{"DOI":"10.13039\/100009045","name":"Jagiellonian University Medical College","doi-asserted-by":"publisher","award":["N43\/DBS\/000306"],"award-info":[{"award-number":["N43\/DBS\/000306"]}],"id":[{"id":"10.13039\/100009045","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,7,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>The meaningful engagement of Deaf people in research poses ethical challenges, yet Deaf people are systematically underrepresented in discussions on ethical research conduct. Our study explores experiences and opinions of Polish Deaf people about research through a bilingual open-ended online survey. We gathered 52 responses and analysed them in collaboration with a Deaf advisory group using an experiential approach to reflexive thematic analysis. We developed six themes, reflecting the challenges, needs and aspirations of Deaf people, embraced under one overarching theme: Dialogue matters. Our study highlights social and epistemic inequalities faced by Deaf people in research, as well as the need for greater accessibility and trust. We discuss how the Polish context both reflects and differs from the experiences of Deaf people from other countries. The findings may inform evidence-based recommendations for scientific cooperation between Deaf and hearing people.<\/jats:p>","DOI":"10.1093\/jdsade\/enag006","type":"journal-article","created":{"date-parts":[[2026,1,29]],"date-time":"2026-01-29T12:47:32Z","timestamp":1769690852000},"page":"460-470","source":"Crossref","is-referenced-by-count":1,"title":["Dialogue matters. Exploring Deaf people\u2019s research experiences in Poland"],"prefix":"10.1093","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-3093-2584","authenticated-orcid":false,"given":"Tomasz","family":"Krawczyk","sequence":"first","affiliation":[{"name":"Department of Bioethics and Health Psychology, Faculty of Health Sciences, Jagiellonian University Medical College , Michalowskiego 12, 31-126 Krakow ,","place":["Poland"]},{"name":"Doctoral School of Medical and Health Sciences, Jagiellonian University Medical College , Sw. Lazarza 16, 31-530 Krakow ,","place":["Poland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1298-736X","authenticated-orcid":false,"given":"Jan","family":"Piasecki","sequence":"additional","affiliation":[{"name":"Department of Bioethics and Health Psychology, Faculty of Health Sciences, Jagiellonian University Medical College , Michalowskiego 12, 31-126 Krakow ,","place":["Poland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rafa\u0142","family":"Bo\u0142dys","sequence":"additional","affiliation":[{"name":"independent researcher"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara","family":"Butkiewicz","sequence":"additional","affiliation":[{"name":"independent researcher"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judyta","family":"Koper","sequence":"additional","affiliation":[{"name":"Office for Persons with Disabilities, Krakow University of Economics , Rakowicka 27, 31-510 Krakow ,","place":["Poland"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bogus\u0142awa","family":"Kwoka","sequence":"additional","affiliation":[{"name":"independent researcher"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Franciszek","family":"Kwoka","sequence":"additional","affiliation":[{"name":"independent researcher"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karolina","family":"Rzadek","sequence":"additional","affiliation":[{"name":"independent researcher"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1553-1416","authenticated-orcid":false,"given":"Marcin","family":"Waligora","sequence":"additional","affiliation":[{"name":"Department of Bioethics and Health Psychology, Faculty of Health Sciences, Jagiellonian University Medical College , Michalowskiego 12, 31-126 Krakow ,","place":["Poland"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2026,2,23]]},"reference":[{"issue":"11","key":"2026072501413056500_ref1","doi-asserted-by":"publisher","first-page":"1813","DOI":"10.1177\/1049732318779050","article-title":"Deaf qualitative Health Research: Leveraging technology to conduct linguistically and Sociopolitically appropriate methods of inquiry","volume":"28","author":"Anderson","year":"2018","journal-title":"Qualitative Health Research"},{"issue":"1","key":"2026072501413056500_ref2","doi-asserted-by":"publisher","first-page":"115","DOI":"10.1093\/DEAFED\/ENZ035","article-title":"Deaf ACCESS: Adapting consent through community engagement and state-of-the-art simulation","volume":"25","author":"Anderson","year":"2020","journal-title":"The Journal of Deaf Studies and Deaf Education"},{"issue":"1","key":"2026072501413056500_ref3","doi-asserted-by":"publisher","first-page":"15","DOI":"10.1037\/cdp0000445","article-title":"Application of the truth and reconciliation model to meaningfully engage deaf sign language users in the research process","volume":"29","author":"Anderson","year":"2023","journal-title":"Cultural Diversity and Ethnic Minority Psychology"},{"issue":"3","key":"2026072501413056500_ref4","doi-asserted-by":"publisher","first-page":"275","DOI":"10.1353\/aad.2007.0023","article-title":"Deaf and hearing partnerships: Ethical and communication considerations","volume":"152","author":"Benedict","year":"2007","journal-title":"American Annals of the Deaf"},{"key":"2026072501413056500_ref5","doi-asserted-by":"crossref","DOI":"10.4135\/9781036232078.n9","volume-title":"Thematic analysis: A practical guide","author":"Braun","year":"2021"},{"issue":"2","key":"2026072501413056500_ref6","doi-asserted-by":"publisher","first-page":"399","DOI":"10.1080\/14780887.2024.2382244","article-title":"Reporting guidelines for qualitative research: A values-based approach","volume":"22","author":"Braun","year":"2025","journal-title":"Qualitative Research in Psychology"},{"key":"2026072501413056500_ref7","doi-asserted-by":"crossref","first-page":"843","DOI":"10.1007\/978-981-10-5251-4_103","volume-title":"Handbook of research methods in health social sciences","author":"Braun","year":"2019"},{"issue":"1","key":"2026072501413056500_ref8","doi-asserted-by":"publisher","first-page":"346","DOI":"10.3102\/0091732X20985070","article-title":"Evidence-based practices in deaf education: A call to Center research and evaluation on the experiences of deaf people","volume":"45","author":"Cawthon","year":"2021","journal-title":"Review of Research in Education"},{"issue":"6","key":"2026072501413056500_ref9","doi-asserted-by":"publisher","DOI":"10.1080\/09687599.2024.2369649","article-title":"Defining hearing culture in context of deaf culture: A grounded theory examination","volume":"40","author":"Cue","year":"2025","journal-title":"Disability & Society"},{"issue":"3","key":"2026072501413056500_ref10","doi-asserted-by":"publisher","first-page":"395","DOI":"10.1353\/aad.2019.0017","article-title":"The odyssey of deaf epistemology","volume":"164","author":"Cue","year":"2019","journal-title":"American Annals of the Deaf"},{"issue":"4","key":"2026072501413056500_ref11","doi-asserted-by":"publisher","first-page":"437","DOI":"10.1080\/14780887.2017.1416802","article-title":"\u201cNothing about us without us\u201d: Navigating engagement as hearing researcher in the deaf community","volume":"15","author":"Ferndale","year":"2018","journal-title":"Qualitative Research in Psychology"},{"issue":"1","key":"2026072501413056500_ref12","doi-asserted-by":"publisher","first-page":"31","DOI":"10.1146\/annurev-anthro-010220-034545","article-title":"Deaf anthropology","volume":"49","author":"Friedner","year":"2020","journal-title":"Annual Review of Anthropology"},{"key":"2026072501413056500_ref13","doi-asserted-by":"publisher","DOI":"10.4135\/9781483346489","volume-title":"The SAGE deaf studies Encyclopedia.","author":"Gertz","year":"2016"},{"issue":"4","key":"2026072501413056500_ref14","doi-asserted-by":"publisher","first-page":"785","DOI":"10.1111\/hex.12888","article-title":"Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot","volume":"22","author":"Greenhalgh","year":"2019","journal-title":"Health Expectations"},{"key":"2026072501413056500_ref15","first-page":"13","volume-title":"Representation: Cultural representations and signifying practices","author":"Hall","year":"1997"},{"issue":"2","key":"2026072501413056500_ref16","doi-asserted-by":"publisher","first-page":"104","DOI":"10.1353\/sls.0.0011","article-title":"Research ethics in sign language communities","volume":"9","author":"Harris","year":"2009","journal-title":"Sign Language Studies"},{"issue":"Supplement_2","key":"2026072501413056500_ref17","doi-asserted-by":"publisher","first-page":"ii7","DOI":"10.1093\/heapro\/daac016","article-title":"Participatory research in health promotion: A critical review and illustration of rationales","volume":"37","author":"Harting","year":"2022","journal-title":"Health Promotion International"},{"key":"2026072501413056500_ref18","doi-asserted-by":"publisher","first-page":"229","DOI":"10.4324\/9780367808686-16-19","volume-title":"Discussing bilingualism in deaf children","author":"Henner","year":"2021"},{"issue":"5","key":"2026072501413056500_ref19","doi-asserted-by":"publisher","first-page":"471","DOI":"10.1353\/aad.0.0116","article-title":"Deaf epistemology: The deaf way of knowing","volume":"154","author":"Holcomb","year":"2010","journal-title":"American Annals of the Deaf"},{"issue":"3","key":"2026072501413056500_ref20","doi-asserted-by":"publisher","first-page":"179","DOI":"10.1080\/14643154.2021.1885576","article-title":"Nothing about us without us: Deaf education and sign language access in China","volume":"23","author":"Jones","year":"2021","journal-title":"Deafness and Education International"},{"key":"2026072501413056500_ref21","first-page":"263","article-title":"Question and questionnaire design","volume":"2","author":"Krosnick","year":"2010","journal-title":"Handbook of Survey Research"},{"key":"2026072501413056500_ref22","doi-asserted-by":"publisher","DOI":"10.3389\/fpubh.2025.1655189","article-title":"Meaningful public involvement: Changing research institutions toward epistemic justice","volume":"13","author":"Krawczyk","year":"2025","journal-title":"Frontiers in Public Health"},{"key":"2026072501413056500_ref23","doi-asserted-by":"publisher","first-page":"443","DOI":"10.1093\/jdsade\/enae024","article-title":"Ethics of research engagement with deaf people. A qualitative evidence synthesis","volume":"29","author":"Krawczyk","year":"2024","journal-title":"Journal of Deaf Studies and Deaf Education"},{"issue":"3","key":"2026072501413056500_ref24","doi-asserted-by":"publisher","first-page":"279","DOI":"10.1037\/dhe0000049","article-title":"How to be a deaf scientist: Building navigational capital","volume":"11","author":"Listman","year":"2018","journal-title":"Journal of Diversity in Higher Education"},{"issue":"13","key":"2026072501413056500_ref25","doi-asserted-by":"publisher","first-page":"1753","DOI":"10.1177\/1049732315617444\/FORMAT\/EPUB","article-title":"Sample size in qualitative interview studies: Guided by information power","volume":"26","author":"Malterud","year":"2016","journal-title":"Qualitative Health Research"},{"key":"2026072501413056500_ref26","first-page":"7","volume-title":"G\u0142usi Maj\u0105 G\u0142os t. II: G\u0142usi Aktywni Obywatele","author":"Marganiec","year":"2024"},{"issue":"1","key":"2026072501413056500_ref27","doi-asserted-by":"publisher","first-page":"18","DOI":"10.1515\/ijtr-2017-0001","article-title":"Transformative research: Personal and societal","volume":"4","author":"Mertens","year":"2017","journal-title":"International Journal for Transformative Research"},{"issue":"1","key":"2026072501413056500_ref28","doi-asserted-by":"publisher","first-page":"26","DOI":"10.1080\/08873631.2019.1677293","article-title":"Negotiating academic environments: Using Lefebvre to conceptualise deaf spaces and disabling\/enabling environments","volume":"37","author":"O\u2019Brien","year":"2020","journal-title":"Journal of Cultural Geography"},{"issue":"9","key":"2026072501413056500_ref29","doi-asserted-by":"publisher","first-page":"1245","DOI":"10.1097\/ACM.0000000000000388","article-title":"Standards for reporting qualitative research: A synthesis of recommendations","volume":"89","author":"O\u2019Brien","year":"2014","journal-title":"Academic Medicine\u00a0: Journal of the Association of American Medical Colleges"},{"key":"2026072501413056500_ref30","volume-title":"Qualitative research & evaluation methods","author":"Patton","year":"2002","edition":"3rd"},{"key":"2026072501413056500_ref31","volume-title":"G\u0142usi: Emancypacje","author":"Podg\u00f3rska-Jachnik","year":"2013"},{"issue":"15","key":"2026072501413056500_ref32","doi-asserted-by":"publisher","first-page":"2091","DOI":"10.4236\/psych.2019.1015135","article-title":"To deaf or not to deaf: That is the question","volume":"10","author":"Pudans-Smith","year":"2019","journal-title":"Psychology"},{"issue":"4","key":"2026072501413056500_ref33","doi-asserted-by":"publisher","first-page":"459","DOI":"10.55016\/ojs\/ajer.v69i4.72904","article-title":"Considerations for best practice when conducting qualitative research with deaf and hard of hearing (D\/HH) participants","volume":"69","author":"Rohatyn-Martin","year":"2023","journal-title":"Alberta Journal of Educational Research"},{"issue":"3","key":"2026072501413056500_ref34","doi-asserted-by":"publisher","first-page":"59","DOI":"10.1177\/1556264614540589","article-title":"Toward ethical research practice with deaf participants","volume":"9","author":"Singleton","year":"2014","journal-title":"Journal of Empirical Research on Human Research Ethics"},{"key":"2026072501413056500_ref35","first-page":"75","volume-title":"Research in deaf education: Contexts, challenges, and considerations","author":"Singleton","year":"2017"},{"issue":"15","key":"2026072501413056500_ref36","first-page":"1","article-title":"Aesthetics, culture, power: Critical deaf pedagogy and ASL video-publications as resistance-to-audism in deaf education and research","volume":"11","author":"Skyer","year":"2020","journal-title":"Critical Education"},{"issue":"1","key":"2026072501413056500_ref37","doi-asserted-by":"publisher","first-page":"30","DOI":"10.1186\/s40900-020-00188-4","article-title":"Designing a tool to support patient and public involvement in research projects: The involvement matrix","volume":"6","author":"Smits","year":"2020","journal-title":"Research Involvement and Engagement"},{"key":"2026072501413056500_ref38","first-page":"375","volume-title":"Nauka i szkolnictwo wy\u017csze w przededniu wej\u015bcia w \u017cycie Ustawy 2.0. Tom II: Aspekty teorytyczne i ustrojowe","author":"Talipska","year":"2019"},{"key":"2026072501413056500_ref39","first-page":"163","volume-title":"G\u0142usi Maj\u0105 G\u0142os t. II: G\u0142usi Aktywni Obywatele","author":"Talipska","year":"2024"},{"key":"2026072501413056500_ref40","first-page":"15","volume-title":"Collecting qualitative data: A practical guide to textual, media and virtual techniques","author":"Terry","year":"2017"},{"issue":"2","key":"2026072501413056500_ref41","doi-asserted-by":"publisher","first-page":"97","DOI":"10.26485\/PS\/2025\/74.2\/9","article-title":"Deafhood \u2013 Rekonceptualizacja poj\u0119cia g\u0142uchoty","volume":"74","author":"Tomaszewski","year":"2025","journal-title":"Przegl\u0105d Socjologiczny"},{"key":"2026072501413056500_ref42","volume-title":"Kultura a zdrowie i niepe\u0142nosprawno\u015b\u0107","author":"Tomaszewski","year":"2018"},{"key":"2026072501413056500_ref43","doi-asserted-by":"publisher","first-page":"281","DOI":"10.14746\/se.2018.49.17","article-title":"W poszukiwaniu eklektycznego paradygmatu edukacji g\u0142uchych","volume":"49","author":"Tomaszewski","year":"2018","journal-title":"Studia Edukacyjne"},{"issue":"1","key":"2026072501413056500_ref44","doi-asserted-by":"publisher","first-page":"99","DOI":"10.15804\/kie.2018.01.07","article-title":"Kultura tudzie\u017c rehabilitacja\u00a0: Ku zmianie paradygmatu w edukacji g\u0142uchych i s\u0142abos\u0142ysz\u0105cych w Polsce","volume":"119","author":"Tomaszewski","year":"2018","journal-title":"Kultura i Edukacja"},{"key":"2026072501413056500_ref45","doi-asserted-by":"publisher","first-page":"13","DOI":"10.12688\/wellcomeopenres.17192.1","article-title":"\u2018Working relationships\u2019 across difference - a realist review of community engagement with malaria research","volume":"7","author":"Vincent","year":"2022","journal-title":"Wellcome Open Research"},{"issue":"3","key":"2026072501413056500_ref46","doi-asserted-by":"publisher","first-page":"266","DOI":"10.1177\/1558689814527943","article-title":"Mixed methods research strategies with deaf people","volume":"8","author":"Wilson","year":"2014","journal-title":"Journal of Mixed Methods Research"},{"issue":"5","key":"2026072501413056500_ref47","doi-asserted-by":"publisher","first-page":"571","DOI":"10.1353\/aad.2017.0007","article-title":"Deaf\/hearing research partnerships","volume":"161","author":"Wolsey","year":"2017","journal-title":"American Annals of the Deaf"},{"key":"2026072501413056500_ref48","volume-title":"Community engagement: A health promotion guide for universal health coverage in the hands of the people.","author":"World Health Organization","year":"2020"},{"issue":"8","key":"2026072501413056500_ref49","doi-asserted-by":"publisher","first-page":"1221","DOI":"10.1080\/09687599.2020.1787818","article-title":"Deafnormativity: Who belongs in deaf culture?","volume":"36","author":"Wright","year":"2021","journal-title":"Disability & Society"},{"issue":"2","key":"2026072501413056500_ref50","doi-asserted-by":"publisher","first-page":"179","DOI":"10.1177\/104973230101100204","article-title":"Reflections on validity and epistemology in a study of working relations between deaf and hearing professionals","volume":"11","author":"Young","year":"2001","journal-title":"Qualitative Health Research"},{"issue":"2","key":"2026072501413056500_ref51","doi-asserted-by":"crossref","first-page":"186","DOI":"10.1093\/deafed\/5.2.186","article-title":"On creating a workable signing environment: Deaf and hearing perspectives","volume":"5","author":"Young","year":"2000","journal-title":"Journal of Deaf Studies and Deaf Education"},{"issue":"41","key":"2026072501413056500_ref52","doi-asserted-by":"publisher","first-page":"287","DOI":"10.4467\/20843860PK.19.016.11599","article-title":"Kultura G\u0142uchych\u2014Kultura oporu. Rozw\u00f3j ameryka\u0144skiej Kultury G\u0142uchych i konsekwencje jej implementacji w Polsce","volume":"3","author":"Zdrodowska","year":"2019","journal-title":"Przegl\u0105d Kulturoznawczy"}],"container-title":["Journal of Deaf Studies and Deaf Education"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/jdsde\/article-pdf\/31\/3\/460\/67076047\/enag006.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/jdsde\/article-pdf\/31\/3\/460\/67076047\/enag006.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,7,25]],"date-time":"2026-07-25T05:41:41Z","timestamp":1784958101000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jdsde\/article\/31\/3\/460\/8495058"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,2,23]]},"references-count":52,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2026,2,23]]},"published-print":{"date-parts":[[2026,7,9]]}},"URL":"https:\/\/doi.org\/10.1093\/jdsade\/enag006","relation":{},"ISSN":["1081-4159","1465-7325"],"issn-type":[{"value":"1081-4159","type":"print"},{"value":"1465-7325","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2026,7]]},"published":{"date-parts":[[2026,2,23]]}}}