{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,4]],"date-time":"2026-11-04T17:56:22Z","timestamp":1793814982594,"version":"4.6.1"},"reference-count":42,"publisher":"BMJ","issue":"2","license":[{"start":{"date-parts":[[2024,11,7]],"date-time":"2024-11-07T00:00:00Z","timestamp":1730937600000},"content-version":"unspecified","delay-in-days":6,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"name":"GSK","award":["218747"],"award-info":[{"award-number":["218747"]}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["Lupus Sci Med"],"accepted":{"date-parts":[[2024,9,18]]},"published-print":{"date-parts":[[2024,11]]},"abstract":"<jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>Lupus nephritis (LN) is a major cause of morbidity and mortality, affecting up to 60% of patients with systemic lupus erythematosus (SLE). The perspectives of patients with SLE have been explored; however, little is known of the lived experiences of patients with LN.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>Patients aged \u226518 years with biopsy-proven pure or mixed International Society of Nephrology\/Renal Pathology Society Class III, IV or V LN were purposefully recruited from a Canadian lupus cohort to participate in a photovoice (visual\u2013narrative participatory research method) exercise. Participants took photos of what LN means to them, impacts on daily life and factors impacting LN management. Photos were shared and discussed in focus groups.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>13 individuals with LN participated (92.3% were female; mean (SD) age was 41.7 (14.0) years). The mean (SD) number of photos shared per participant was 4.2 (0.9). Photos (n=54) depicted activities\/settings that contribute to well-being (n=15), the participants themselves (n=13), healthcare experiences (n=10), home (n=4), community (n=2), friends (n=2), work (n=2) and other challenges (n=6). All participants described physical and psychosocial impacts of living with LN. Although 12 mentioned activities\/settings that contribute to well-being (eg, time in natural environments), participants were consistently reminded of limitations imposed by LN due to physical symptoms, challenges presented by the physical environment and the altered life trajectories experienced. Participants discussed the dual burden of LN and the associated medication journey; side effects and medication-related financial challenges were highlighted by ten and five participants, respectively.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>Participants reported a substantial psychosocial burden associated with altered life trajectories, the dual burden of LN and the associated medication journey, and the conflicting role of the physical environment. The need for flexibility (ie, from employers, themselves) is an essential component of navigating altered life trajectories.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1136\/lupus-2024-001265","type":"journal-article","created":{"date-parts":[[2024,11,8]],"date-time":"2024-11-08T03:05:22Z","timestamp":1731035122000},"page":"e001265","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":2,"title":["Using photovoice to investigate patient experiences of lupus nephritis in Canada"],"prefix":"10.1136","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7393-466X","authenticated-orcid":false,"given":"Francesca S","family":"Cardwell","sequence":"first","affiliation":[{"name":"Department of Geography and Environmental Management, University of Waterloo, Waterloo, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan J","family":"Elliott","sequence":"additional","affiliation":[{"name":"Department of Geography and Environmental Management, University of Waterloo, Waterloo, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Megan R W","family":"Barber","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, University of Calgary Cumming School of Medicine, Calgary, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kim","family":"Cheema","sequence":"additional","affiliation":[{"name":"Division of Nephrology, University of Calgary Cumming School of Medicine, Calgary, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sydney","family":"George","sequence":"additional","affiliation":[{"name":"Health Outcomes and Economics, GSK, Mississauga, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adrian","family":"Boucher","sequence":"additional","affiliation":[{"name":"Health Outcomes and Economics, GSK, Mississauga, Ontario, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ann Elaine","family":"Clarke","sequence":"additional","affiliation":[{"name":"Division of Rheumatology, University of Calgary Cumming School of Medicine, Calgary, Alberta, Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"239","published-online":{"date-parts":[[2024,11,7]]},"reference":[{"key":"2025091512550466000_11.2.e001265.1","doi-asserted-by":"crossref","first-page":"7","DOI":"10.1038\/s41572-019-0141-9","article-title":"Lupus nephritis","volume":"6","author":"Anders","year":"2020","journal-title":"Nat Rev Dis Primers"},{"key":"2025091512550466000_11.2.e001265.2","doi-asserted-by":"crossref","DOI":"10.1136\/lupus-2023-000982","article-title":"Canadian patient experiences of lupus nephritis: a qualitative analysis","volume":"10","author":"Cardwell","year":"2023","journal-title":"Lupus Sci Med"},{"key":"2025091512550466000_11.2.e001265.3","doi-asserted-by":"publisher","DOI":"10.1503\/cmaj.210963"},{"key":"2025091512550466000_11.2.e001265.4","doi-asserted-by":"crossref","DOI":"10.1186\/s40900-018-0102-6","article-title":"Sharpening the focus: differentiating between focus groups for patient engagement vs. qualitative research","volume":"4","author":"Doria","year":"2018","journal-title":"Res Involv Engagem"},{"key":"2025091512550466000_11.2.e001265.5","doi-asserted-by":"publisher","DOI":"10.1038\/bdj.2008.192"},{"key":"2025091512550466000_11.2.e001265.6","unstructured":"Gatrell AC , Elliott SJ . 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