{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,26]],"date-time":"2026-06-26T16:10:09Z","timestamp":1782490209723,"version":"3.54.5"},"reference-count":38,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2022,4,5]],"date-time":"2022-04-05T00:00:00Z","timestamp":1649116800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000024","name":"Canadian Institutes of Health Research","doi-asserted-by":"publisher","award":["1715\u2010000\u2010001"],"award-info":[{"award-number":["1715\u2010000\u2010001"]}],"id":[{"id":"10.13039\/501100000024","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2022,8]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under\u2010supported in clinical settings and research.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>This study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient\u2010led research process.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Trained patient researchers conducted this study by engaging peers via semi\u2010structured interviews and focus groups in a three\u2010step co\u2010design process. Participants (<jats:italic>n<\/jats:italic>\u2009=\u20099) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT),\u00a0refined themes and made recommendations for healthcare system change (REFLECT).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Themes that emerged included: \u2018Experimenting with Food\u2019, \u2018Evolution Over Time\u2019, \u2018Diet Changes are Emotional\u2019\u00a0and \u2018Role of Stigma\u2019. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Participants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food.<\/jats:p><\/jats:sec><jats:sec><jats:title>Patient or Public Contribution<\/jats:title><jats:p>The first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer\u2010to\u2010peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co\u2010lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hex.13488","type":"journal-article","created":{"date-parts":[[2022,4,5]],"date-time":"2022-04-05T08:45:17Z","timestamp":1649148317000},"page":"1486-1497","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["A patient\u2010led, peer\u2010to\u2010peer qualitative study on the psychosocial relationship between young adults with inflammatory bowel disease and food"],"prefix":"10.1111","volume":"25","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6754-4008","authenticated-orcid":false,"given":"Jenna","family":"Rines","sequence":"first","affiliation":[{"name":"Patient and Community Engagement Research (PaCER) Calgary Alberta Canada"},{"name":"Department of Community Health Sciences University of Calgary Calgary Alberta Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2253-6290","authenticated-orcid":false,"given":"Kim","family":"Daley","sequence":"additional","affiliation":[{"name":"Patient and Community Engagement Research (PaCER) Calgary Alberta Canada"},{"name":"Department of Community Health Sciences University of Calgary Calgary Alberta Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4862-0300","authenticated-orcid":false,"given":"Sunny","family":"Loo","sequence":"additional","affiliation":[{"name":"Patient and Community Engagement Research (PaCER) Calgary Alberta Canada"},{"name":"Department of Community Health Sciences University of Calgary Calgary Alberta Canada"},{"name":"BC Support Unit\/AHSN Vancouver British Columbia Canada"},{"name":"Vancouver Island Health Authority Victoria British Columbia Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3959-485X","authenticated-orcid":false,"given":"Kwestan","family":"Safari","sequence":"additional","affiliation":[{"name":"Patient and Community Engagement Research (PaCER) Calgary Alberta Canada"},{"name":"Department of Community Health Sciences University of Calgary Calgary Alberta Canada"},{"name":"BC Children's Hospital Research Institute Vancouver British Columbia Canada"},{"name":"Department of Pediatrics University of British Columbia Vancouver British Columbia Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8072-7781","authenticated-orcid":false,"given":"Deirdre","family":"Walsh","sequence":"additional","affiliation":[{"name":"Patient and Community Engagement Research (PaCER) Calgary Alberta Canada"},{"name":"Department of Community Health Sciences University of Calgary Calgary Alberta Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marlyn","family":"Gill","sequence":"additional","affiliation":[{"name":"Patient and Community Engagement Research (PaCER) Calgary Alberta Canada"},{"name":"Department of Community Health Sciences University of Calgary Calgary Alberta Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3616-9292","authenticated-orcid":false,"given":"Paul","family":"Moayyedi","sequence":"additional","affiliation":[{"name":"IMAGINE SPOR Chronic Disease Network Hamilton Ontario Canada"},{"name":"Faculty of Health Sciences McMaster University Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Aida","family":"Fernandes","sequence":"additional","affiliation":[{"name":"IMAGINE SPOR Chronic Disease Network Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6417-1894","authenticated-orcid":false,"given":"Nancy","family":"Marlett","sequence":"additional","affiliation":[{"name":"Patient and Community Engagement Research (PaCER) Calgary Alberta Canada"},{"name":"Department of Community Health Sciences University of Calgary Calgary Alberta Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8467-8008","authenticated-orcid":false,"given":"Deborah","family":"Marshall","sequence":"additional","affiliation":[{"name":"Department of Community Health Sciences University of Calgary Calgary Alberta Canada"},{"name":"IMAGINE SPOR Chronic Disease Network Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2022,4,5]]},"reference":[{"issue":"170","key":"e_1_2_13_2_1","first-page":"2","article-title":"Classification of inflammatory bowel disease. 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