{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,11]],"date-time":"2025-12-11T20:59:42Z","timestamp":1765486782416,"version":"3.37.3"},"reference-count":48,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2022,7,25]],"date-time":"2022-07-25T00:00:00Z","timestamp":1658707200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2022,7,25]],"date-time":"2022-07-25T00:00:00Z","timestamp":1658707200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100006801","name":"Horace H. Rackham School of Graduate Studies, University of Michigan","doi-asserted-by":"publisher","award":["The Rackham Graduate Student Research Grant"],"award-info":[{"award-number":["The Rackham Graduate Student Research Grant"]}],"id":[{"id":"10.13039\/100006801","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["BMC Med Inform Decis Mak"],"published-print":{"date-parts":[[2022,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Parents who have to make tracheostomy decisions for their critically ill child may face forecasting errors and wish to learn from peer parents. We sought to develop an intervention with peer parent narratives to help parents anticipate and prepare for future challenges before making a decision.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>To ensure that the intervention reflects parents\u2019 needs (rather than experts\u2019 opinions), we adapted a user-centered design (UCD) process to identify decision-critical information and refine the presentation format by interviewing parents who had tracheostomy decision making experience. Phase 1 (<jats:italic>n<\/jats:italic>\u2009=\u200910) presented 15 possible forecasting errors and asked participants to prioritize and justify the problematic ones. It also asked participants to comment on the draft narratives and preferred delivery mode and time of the intervention. Phase 2 (<jats:italic>n<\/jats:italic>\u2009=\u20099 additional parents and 1 previous parent) iteratively collected feedback over four waves of user interviews to guide revisions to the informational booklet.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Phase 1 revealed that parents wanted information to address all forecasting errors as soon as tracheostomy becomes an option. They also highlighted diverse family situations and the\u00a0importance of offering management strategies. The resulting prototype booklet contained five sections: introduction, child\u2019s quality of life, home care, practical challenges, and resources. Feedback from Phase 2 focused on emphasizing individualized situations, personal choice, seriousness of the decision, and caregiver health as well as presenting concrete illustrations of future challenges with acknowledgement of positive outcomes and advice. We also learned that parents preferred to use the booklet with support from the care team rather than read it alone.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>A UCD process enabled inclusion of parental perspectives that were initially overlooked and tailoring of the intervention to meet parental expectations. Similar UCD-based approaches may be valuable in the design of other types of patient communications (e.g., decision aids).<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12911-022-01911-9","type":"journal-article","created":{"date-parts":[[2022,7,25]],"date-time":"2022-07-25T14:04:02Z","timestamp":1658757842000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy"],"prefix":"10.1186","volume":"22","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9195-355X","authenticated-orcid":false,"given":"Haoyang","family":"Yan","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3861-7327","authenticated-orcid":false,"given":"Stephanie K.","family":"Kukora","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1194-8801","authenticated-orcid":false,"given":"Kenneth","family":"Pituch","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3584-3513","authenticated-orcid":false,"given":"Patricia J.","family":"Deldin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4468-1093","authenticated-orcid":false,"given":"Cynthia","family":"Arslanian-Engoren","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1637-4176","authenticated-orcid":false,"given":"Brian J.","family":"Zikmund-Fisher","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2022,7,25]]},"reference":[{"issue":"9","key":"1911_CR1","doi-asserted-by":"publisher","first-page":"882","DOI":"10.1017\/S0022215115001140","volume":"129","author":"MMC Yaneza","year":"2015","unstructured":"Yaneza MMC, James HP, Davies P, Harrison S, McAlorum L, Clement WA, et al. 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