{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T23:22:27Z","timestamp":1781652147831,"version":"3.54.5"},"reference-count":26,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2019,11,19]],"date-time":"2019-11-19T00:00:00Z","timestamp":1574121600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Journal of Renal Care"],"published-print":{"date-parts":[[2020,3]]},"abstract":"<jats:title>SUMMARY<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Little is known about health and wellbeing among patients with nephrotic syndrome (NS), despite it being a serious condition in patients with renal failure. In order to promote health, it is important that both healthcare professionals and patients are aware of the signs and symptoms of the disease.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objectives<\/jats:title><jats:p>The aim was to explore patients\u2019 experience of suffering from nephrotic syndrome.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>An inductive, qualitative method.<\/jats:p><\/jats:sec><jats:sec><jats:title>Participants<\/jats:title><jats:p>Ten adult patients with either newly diagnosed or a relapse of NS treated in a University hospital, south of Sweden from February 2016 to February 2019.<\/jats:p><\/jats:sec><jats:sec><jats:title>Measurements<\/jats:title><jats:p>Data were collected using open\u2010ended interviews and analysed by means of Lindseth and Norberg's phenomenological\u2010hermeneutical method.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Suffering from NS meant being a stranger in an unfamiliar world of symptoms, signs and medical treatment without professional guidance or piloting, illustrated by four themes: <jats:italic>Feeling ill and well at the same time, Being passively adherent, Being in uncertainty<\/jats:italic>, and <jats:italic>Trying to comprehend and cope<\/jats:italic>.<\/jats:p><\/jats:sec><jats:sec><jats:title>Implications for practice<\/jats:title><jats:p>The result provides an in\u2010depth understanding of the illness experience among patients with NS and constitutes a foundation for clinical guidelines on treatment, follow\u2010up and health promotion.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Patients with NS end up in a state of ambiguity due to a profound knowledge deficit that causes uncertainty and a lack of self\u2010management. The experienced lack of professional self\u2010management support is partly compensated for by social support from relatives, enabling those with NS to manage everyday life in a reasonable way.<\/jats:p><\/jats:sec>","DOI":"10.1111\/jorc.12307","type":"journal-article","created":{"date-parts":[[2019,11,20]],"date-time":"2019-11-20T05:18:52Z","timestamp":1574227132000},"page":"45-51","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Persons\u2019 Experiences of Suffering from Nephrotic Syndrome"],"prefix":"10.1111","volume":"46","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8555-6459","authenticated-orcid":false,"given":"Anneli","family":"J\u00f6nsson","sequence":"first","affiliation":[{"name":"Department of Clinical Sciences, Nephrology, Faculty of Medicine Lund University Lund Sweden"},{"name":"Department of Health Science, Faculty of Medicine Lund University Lund Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas","family":"Hellmark","sequence":"additional","affiliation":[{"name":"Department of Clinical Sciences, Nephrology, Faculty of Medicine Lund University Lund Sweden"},{"name":"Biomedical Centre Sk\u00e5ne University Hospital Lund Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anna","family":"Forsberg","sequence":"additional","affiliation":[{"name":"Department of Health Science, Faculty of Medicine Lund University Lund Sweden"},{"name":"The Thoracic Surgery Lund Sk\u00e5ne University Hospital Lund Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2019,11,19]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1177\/1474515116648240"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1093\/ndt\/gfw344"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1093\/ndt\/gfw404"},{"issue":"2","key":"e_1_2_8_5_1","first-page":"147","article-title":"The self\u2010management experience of people with mild to moderate chronic kidney disease","volume":"35","author":"Costantini L.","year":"2008","journal-title":"Journal of Nephrology Nurse"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2648.2001.01697.x"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1177\/0269216316647610"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1038\/ki.2010.485"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.2147\/IJGM.S45156"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.39576.709711.80"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11916-009-0023-z"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.2215\/CJN.10131011"},{"issue":"6","key":"e_1_2_8_13_1","first-page":"479","article-title":"Diagnosis and management of nephrotic syndrome in adults","volume":"93","author":"Kodner C.","year":"2016","journal-title":"American Family Physician"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2702.2003.00826.x"},{"key":"e_1_2_8_15_1","volume-title":"Personcentrering inom h\u00e4lso\u2010 och sjukv\u00e5rd. Fr\u00e5n filosofi till praktik. [Person centring in healthcare. From philosophy to practice]","author":"Kristensson Uggla B.","year":"2014"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0037763"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1471-6712.2004.00258.x"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1547-5069.1988.tb00082.x"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1111\/sdi.12080"},{"key":"e_1_2_8_20_1","doi-asserted-by":"publisher","DOI":"10.1053\/j.ajkd.2017.11.022"},{"key":"e_1_2_8_21_1","volume-title":"Interpretation Theory: Discourse and the Surplus of Meaning","author":"Ricoeur P.","year":"1976"},{"key":"e_1_2_8_22_1","volume-title":"Oneself as Another","author":"Ricoeur P.","year":"1994"},{"key":"e_1_2_8_23_1","volume-title":"Homo capax: texter av Paul Ricoeur om etik och filosofisk antropologi sammanst\u00e4llda av Bengt Kristensson Uggla. [Homo Capax: Texts by Paul Ricoeur on Ethics and Philosophical Anthropology compiled by Bengt Kristensson Uggla]","author":"Ricoeur P.","year":"2011"},{"key":"e_1_2_8_24_1","volume-title":"82. Patientlag. [Patient act]","author":"SFS","year":"2014"},{"key":"e_1_2_8_25_1","doi-asserted-by":"publisher","DOI":"10.1155\/2013\/124315"},{"key":"e_1_2_8_26_1","unstructured":"World Health Organization. (2002).Innovative Care for Chronic Conditions: Building Blocks for Action. Available fromhttps:\/\/www.who.int\/chp\/knowledge\/publications\/icccreport\/en\/"},{"key":"e_1_2_8_27_1","unstructured":"World Medical Association(2018).Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. Available fromhttps:\/\/www.wma.net\/policies\u2010post\/wma\u2010declaration\u2010of\u2010helsinki\u2010ethical\u2010principles\u2010for\u2010medical\u2010research\u2010involving\u2010human\u2010subjects\/"}],"container-title":["Journal of Renal Care"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jorc.12307","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/jorc.12307","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/jorc.12307","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,7]],"date-time":"2023-09-07T18:47:13Z","timestamp":1694112433000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/jorc.12307"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,11,19]]},"references-count":26,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2020,3]]}},"alternative-id":["10.1111\/jorc.12307"],"URL":"https:\/\/doi.org\/10.1111\/jorc.12307","archive":["Portico"],"relation":{},"ISSN":["1755-6678","1755-6686"],"issn-type":[{"value":"1755-6678","type":"print"},{"value":"1755-6686","type":"electronic"}],"subject":[],"published":{"date-parts":[[2019,11,19]]},"assertion":[{"value":"2019-11-19","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}