{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,23]],"date-time":"2025-11-23T15:04:58Z","timestamp":1763910298162,"version":"3.37.3"},"reference-count":167,"publisher":"Oxford University Press (OUP)","issue":"3","license":[{"start":{"date-parts":[[2023,12,22]],"date-time":"2023-12-22T00:00:00Z","timestamp":1703203200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Support for People & Patient-Oriented Research & Trials"},{"name":"Unit\u2013 Vancouver Island"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,2,16]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>Investigate how people with chronic obstructive pulmonary disease (COPD)\u2014an example of a progressive, potentially fatal illness\u2014are using digital technologies (DTs) to address illness experiences, outcomes and social connectedness.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Materials and Methods<\/jats:title>\n                  <jats:p>A transformative mixed methods study was conducted in Canada with people with COPD (n\u2009=\u200977) or with a progressive lung condition (n\u2009=\u20096). Stage-1 interviews (n\u2009=\u20097) informed the stage-2 survey. Survey responses (n\u2009=\u200980) facilitated the identification of participants for stage-3 interviews (n\u2009=\u200913). The interviews were thematically analyzed. Descriptive statistics were calculated for the survey. The integrative mixed method analysis involved mixing between and across the stages.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Most COPD participants (87.0%) used DTs. However, few participants frequently used DTs to self-manage COPD. People used DTs to seek online information about COPD symptoms and treatments, but lacked tailored information about illness progression. Few expressed interest in using DTs for self- monitoring and tracking. The regular use of DTs for intergenerational connections may facilitate leaving a legacy and passing on traditions and memories. Use of DTs for leisure activities provided opportunities for connecting socially and for respite, reminiscing, distraction and spontaneity.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Discussion and Conclusion<\/jats:title>\n                  <jats:p>We advocate reconceptualizing consumer health technologies to prioritize quality of life for people with a progressive, potentially fatal illness. \u201cQuality of life informatics\u201d should focus on reducing stigma regarding illness and disability and taboo towards death, improving access to palliative care resources and encouraging experiences to support social, emotional and mental health. For DTs to support people with fatal, progressive illnesses, we must expand informatics strategies to quality of life.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/jamia\/ocad234","type":"journal-article","created":{"date-parts":[[2023,12,23]],"date-time":"2023-12-23T00:23:54Z","timestamp":1703291034000},"page":"674-691","source":"Crossref","is-referenced-by-count":7,"title":["From illness management to quality of life: rethinking consumer health informatics opportunities for progressive, potentially fatal illnesses"],"prefix":"10.1093","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9332-8512","authenticated-orcid":false,"given":"Marcy G","family":"Antonio","sequence":"first","affiliation":[{"name":"School of Information, University of Michigan , Ann Arbor, MI 48109, United States"},{"name":"School of Health Information Science, University of Victoria , Victoria, BC V8W 2Y2, Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1200-9515","authenticated-orcid":false,"given":"Tiffany C","family":"Veinot","sequence":"additional","affiliation":[{"name":"School of Information, University of Michigan , Ann Arbor, MI 48109, United States"},{"name":"Department of Health Behavior and Health Education, School of Public Health, University of Michigan , Ann Arbor, MI 48109, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"286","published-online":{"date-parts":[[2023,12,22]]},"reference":[{"year":"2023","author":"World Health Organization","key":"2024033016160042200_ocad234-B1"},{"volume-title":"The Human and Economic Burden of COPD: A Leading Cause of Hospital Admission in Canada","year":"2010","author":"Benady","key":"2024033016160042200_ocad234-B2"},{"volume-title":"Life and Breath: Respiratory Disease in Canada (2007)","year":"2007","author":"Public Health Agency of 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