{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,2,21]],"date-time":"2025-02-21T23:16:34Z","timestamp":1740179794979,"version":"3.37.3"},"reference-count":21,"publisher":"Oxford University Press (OUP)","issue":"3","license":[{"start":{"date-parts":[[2023,12,27]],"date-time":"2023-12-27T00:00:00Z","timestamp":1703635200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000106","name":"Saskatchewan Health Research Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100000106","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,6,4]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Background and aim<\/jats:title>\n                  <jats:p>The history of colonization and its ongoing impact poses significant health disparities among Indigenous communities. We aimed to centre the voices and stories of Indigenous patients and family advocates (IPFAs\u2014Indigenous patients living with inflammatory bowel disease [IBD] and family members of Indigenous individuals with IBD) engaged in patient-oriented research projects and who are part of the IBD among Indigenous Peoples Research Team (IBD-IPRT).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>IPFAs and Indigenous and non-Indigenous researchers of the IBD-IPRT followed a storytelling research methodology to let IPFAs share their stories as research team members. Four IPFAs documented their experiences as IBD patients, advocates, and research partners. The stories were analyzed for themes. The identified themes were collaboratively verified with the IPFAs.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>The full stories shared by the IPFAs were transcribed and presented in this paper. Following a background analysis of themes in the 4 narratives, we were also able to identify 4 key themes that could be relevant to improving patient-oriented research initiatives: (1) health promotion, (2) leadership and voice, (3) community engagement, and (4) disease awareness and access to care. Trust building, strong relationships, and effective partnerships are core components for conducting patient-oriented research with Indigenous community members.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>Indigenous patient engagement in health research is crucial to ensure that lived experiences, knowledge, and cultural values are adequately adopted to improve research outcomes. Centering IPFAs in IBD research can promote cultural awareness and actionable recommendations to improve health outcomes for individuals with IBD and their families and caregivers.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/jcag\/gwad059","type":"journal-article","created":{"date-parts":[[2023,12,27]],"date-time":"2023-12-27T17:56:52Z","timestamp":1703699812000},"page":"255-260","source":"Crossref","is-referenced-by-count":0,"title":["Storytelling of Indigenous patient and family advocates engaged in patient-oriented research initiatives in the field of inflammatory bowel disease"],"prefix":"10.1093","volume":"7","author":[{"given":"Rhonda","family":"Sanderson","sequence":"first","affiliation":[{"name":"James Smith Cree Nation , Saskatchewan , Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Linda","family":"Porter","sequence":"additional","affiliation":[{"name":"One Arrow First Nation , Saskatchewan , Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert","family":"Porter","sequence":"additional","affiliation":[{"name":"York Factory First Nation , Manitoba , Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Colten","family":"Brass","sequence":"additional","affiliation":[{"name":"Muskoday First Nation , Saskatchewan , Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Derek","family":"Jennings","sequence":"additional","affiliation":[{"name":"School of Public Health, University of Washington , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michelle","family":"Johnson-Jennings","sequence":"additional","affiliation":[{"name":"School of Social Work, University of Washington , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mustafa","family":"Andkhoie","sequence":"additional","affiliation":[{"name":"School of Public Health, University Saskatchewan , Canada"},{"name":"Health Surveillance and Assessment Unit Service, Department of Indigenous Services Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Germain","family":"Bukassa-Kazadi","sequence":"additional","affiliation":[{"name":"Independent researcher"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sharyle","family":"Fowler","sequence":"additional","affiliation":[{"name":"Division of Gastroenterology, Department of Medicine, University Saskatchewan , Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jose Diego Marques","family":"Santos","sequence":"additional","affiliation":[{"name":"Department of Community Health and Epidemiology, University Saskatchewan , Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica Amankwah","family":"Osei","sequence":"additional","affiliation":[{"name":"Department of Community Health and Epidemiology, University Saskatchewan , Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carol-Lynne","family":"Quintin","sequence":"additional","affiliation":[{"name":"Crohn\u2019s and Colitis Canada , Saskatchewan , Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ulrich","family":"Teucher","sequence":"additional","affiliation":[{"name":"Department of Psychology and Health Studies, College of Arts & Science, University of Saskatchewan , Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4653-525X","authenticated-orcid":false,"given":"Juan Nicol\u00e1s","family":"Pe\u00f1a-S\u00e1nchez","sequence":"additional","affiliation":[{"name":"Department of Community Health and Epidemiology, University Saskatchewan , Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2023,12,27]]},"reference":[{"issue":"1","key":"2024060420434537600_CIT0001","first-page":"1","article-title":"Colonialism as a broader social determinant of health","volume":"2","author":"Czyzewski","year":"2011","journal-title":"Int. Indig. Policy J"},{"key":"2024060420434537600_CIT0002","first-page":"166","article-title":"A decolonizing approach to health promotion in Canada: the case of the urban aboriginal community kitchen garden project","volume-title":"Health Promot Int.","author":"Mundel","year":"2010"},{"key":"2024060420434537600_CIT0003","first-page":"54","article-title":"Growing from our roots: strategies for developing culturally grounded health promotion interventions in American Indian, Alaska Native, and Native Hawaiian communities","volume-title":"Prev Sci","author":"Walters","year":"2020"},{"issue":"12","key":"2024060420434537600_CIT0004","doi-asserted-by":"crossref","first-page":"2993","DOI":"10.1016\/j.cgh.2023.08.005","article-title":"Working with Indigenous community and patient partners is essential to advance gastroenterology and hepatology research: perspectives from Canada","volume":"21","author":"Pe\u00f1a-Sanchez","year":"2023","journal-title":"Clin Gastroenterol Hepatol."},{"key":"2024060420434537600_CIT0005","first-page":"514","article-title":"Increasing prevalence and stable incidence rates of inflammatory bowel disease among first nations: population-based evidence from a western Canadian province","volume-title":"Inflamm Bowel Dis.","author":"Pe\u00f1a-S\u00e1nchez","year":"2022"},{"key":"2024060420434537600_CIT0006","first-page":"1345","article-title":"Past and future burden of inflammatory bowel diseases based on modeling of population-based data","volume-title":"Gastroenterology.","author":"Coward","year":"2019"},{"issue":"10114","key":"2024060420434537600_CIT0007","doi-asserted-by":"crossref","first-page":"2769","DOI":"10.1016\/S0140-6736(17)32448-0","article-title":"Worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: a systematic review of population-based studies","volume":"390","author":"Ng","year":"2017","journal-title":"Lancet"},{"key":"2024060420434537600_CIT0008","first-page":"615","article-title":"A population-based ecologic study of inflammatory bowel disease: searching for etiologic clues","volume-title":"Am J Epidemiol.","author":"Green","year":"2006"},{"key":"2024060420434537600_CIT0009","first-page":"328","article-title":"Low rate of inflammatory bowel disease in the Australian indigenous paediatric population","volume-title":"J Paediatr Child Health.","author":"Leach","year":"2014"},{"key":"2024060420434537600_CIT0010","first-page":"E435","article-title":"Prevalence of genetic variants associated with inflammatory bowel disease in a healthy First Nations cohort","volume-title":"CMAJ.","author":"Murdoch","year":"2012"},{"issue":"4","key":"2024060420434537600_CIT0011","first-page":"E964","article-title":"Health care utilization differences between First Nations people and the general population with inflammatory bowel disease: a retrospective cohort study from Saskatchewan, Canada","volume":"10","author":"Santos","year":"2022","journal-title":"Canad Med Associat Open Access J"},{"key":"2024060420434537600_CIT0012","doi-asserted-by":"crossref","first-page":"3","DOI":"10.4324\/9781315169811-1","article-title":"Hands back, hands forward for indigenous storywork as methodology","volume-title":"Applying Indigenous Research Methods: storying with peoples and communities","author":"Archibald","year":"2019"},{"key":"2024060420434537600_CIT0013","doi-asserted-by":"crossref","first-page":"371","DOI":"10.59962\/9780774855440","volume-title":"An Indigenous Storywork Methodology. Handbook of the Arts in Qualitative Research: Perspectives, Methodologies, Examples, and Issues","author":"Archibald","year":"2008"},{"volume-title":"Decolonizing Research: Indigenous Storywork as Methodology","year":"2019","author":"Smith","key":"2024060420434537600_CIT0014"},{"key":"2024060420434537600_CIT0015","first-page":"2333393615580764","article-title":"Indigenous storytelling and participatory action research: allies toward decolonization? Reflections from the peoples\u2019 international health tribunal","volume-title":"Glob. Qual. Nurs. Res","author":"Caxaj","year":"2015"},{"key":"2024060420434537600_CIT0016","first-page":"137","article-title":"Chaw-win-is, T\u2019lakwadzi. Indigenous Storytelling, Truth-telling and Community Approaches to Reconciliation","volume-title":"English Studies in Canada.","author":"Corntassel","year":"2009"},{"volume-title":"Decolonizing Methodologies: Research and Indigenous Peoples","year":"1999","author":"Smith","key":"2024060420434537600_CIT0017"},{"key":"2024060420434537600_CIT0018","first-page":"S40","article-title":"Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity","volume-title":"Am J Public Health.","author":"Wallerstein","year":"2010"},{"key":"2024060420434537600_CIT0019","first-page":"246","article-title":"Applying indigenous community-based participatory research principles to partnership development in health disparities research","volume-title":"Fam Community Health.","author":"Christopher","year":"2011"},{"article-title":"Truth and Reconciliation Commission of Canada: calls to action","year":"2015","author":"Truth and Reconciliation Commission of Canada","key":"2024060420434537600_CIT0020"},{"issue":"4","key":"2024060420434537600_CIT0021","first-page":"1","article-title":"Patient-oriented research competencies in health (PORCH) for researchers, patients, healthcare providers, and decision-makers: results of a scoping review","volume":"6","author":"Frisch","year":"2020","journal-title":"Res Involv Engagem."}],"container-title":["Journal of the Canadian Association of Gastroenterology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/jcag\/article-pdf\/7\/3\/255\/58083584\/gwad059.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/jcag\/article-pdf\/7\/3\/255\/58083584\/gwad059.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,6,5]],"date-time":"2024-06-05T01:24:07Z","timestamp":1717550647000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/jcag\/article\/7\/3\/255\/7502663"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,12,27]]},"references-count":21,"journal-issue":{"issue":"3","published-online":{"date-parts":[[2023,12,27]]},"published-print":{"date-parts":[[2024,6,4]]}},"URL":"https:\/\/doi.org\/10.1093\/jcag\/gwad059","relation":{},"ISSN":["2515-2084","2515-2092"],"issn-type":[{"type":"print","value":"2515-2084"},{"type":"electronic","value":"2515-2092"}],"subject":[],"published-other":{"date-parts":[[2024,6,1]]},"published":{"date-parts":[[2023,12,27]]}}}