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Semistructured telephone interviews were conducted with the parents.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty parents took part, including 19 mothers and one father. Their children with JIA were mostly female (n = 15; 75%) with polyarticular arthritis (n = 12; 60%), averaged 8 years of age, and had been diagnosed for a mean of 3.7 (SD 2.3) years. Parents expressed uncertainty in the following five key domains: diagnosis, cause, symptoms, and prognosis; medical management; impact; parenting uncertainty; and awareness of JIA. All participants expressed uncertainty in at least four of the five domains. Although parents\u2019 uncertainty in the early stages of the disease related to lack of information and understanding of JIA, much uncertainty could not be resolved by receipt of information. These included concerns about their child\u2019s future and a lack of support with managing the emotional aspects of living with JIA.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>We found that parents\u2019 experiences of uncertainty went beyond dealing with the purely medical aspects of JIA. Provision of information about JIA, although essential, is not sufficient to help parents manage the considerable uncertainty they experience about many aspects of their child\u2019s JIA. Identifying ways to incorporate support for coping with uncertainty into routine care will be an important way of supporting parents to care for their child with JIA.<\/jats:p><\/jats:sec>","DOI":"10.1002\/acr2.11238","type":"journal-article","created":{"date-parts":[[2021,3,12]],"date-time":"2021-03-12T11:48:36Z","timestamp":1615549716000},"page":"250-259","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":14,"title":["Illness Uncertainty in Parents of Children with Juvenile Idiopathic Arthritis"],"prefix":"10.1002","volume":"3","author":[{"given":"Caroline","family":"Pearce","sequence":"first","affiliation":[{"name":"School of Health Sciences City, University of London Northampton Square London EC1V 0HB United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stanton","family":"Newman","sequence":"additional","affiliation":[{"name":"School of Health Sciences City, University of London Northampton Square London EC1V 0HB United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6003-3029","authenticated-orcid":false,"given":"Kathleen","family":"Mulligan","sequence":"additional","affiliation":[{"name":"School of Health Sciences City, University of London Northampton Square London EC1V 0HB United Kingdom"},{"name":"East London NHS Foundation Trust 9 Alie St London E1 8DE United Kingdom"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,3,12]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbspin.2013.09.003"},{"key":"e_1_2_11_3_1","first-page":"390","article-title":"International League of Associations for Rheumatology classification of juvenile idiopathic arthritis: second revision, Edmonton, 2001","volume":"31","author":"Petty RE","year":"2004","journal-title":"J Rheumatol"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/B978-0-323-24145-8.00015-6"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2012-201388"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.180168"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/annrheumdis-2014-206034"},{"issue":"23","key":"e_1_2_11_8_1","first-page":"S163","article-title":"The British version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ)","volume":"19","author":"Nugent J","year":"2001","journal-title":"Clin Exp Rheumatol"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.semarthrit.2017.05.007"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12969-015-0052-6"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1186\/1546-0096-11-23"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.2147\/OARRR.S174408"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1547-5069.1988.tb00082.x"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12969-016-0073-9"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jst049"},{"key":"e_1_2_11_16_1","doi-asserted-by":"publisher","DOI":"10.1037\/0278-6133.25.6.696"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.4037\/ajcc2008.17.3.232"},{"key":"e_1_2_11_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.hrtlng.2005.08.002"},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsj095"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsl046"},{"key":"e_1_2_11_21_1","doi-asserted-by":"publisher","DOI":"10.1080\/13854040802279683"},{"key":"e_1_2_11_22_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsw097"},{"key":"e_1_2_11_23_1","doi-asserted-by":"publisher","DOI":"10.1093\/jpepsy\/jsw004"},{"key":"e_1_2_11_24_1","doi-asserted-by":"publisher","DOI":"10.1097\/DBP.0b013e318210ff2c"},{"key":"e_1_2_11_25_1","doi-asserted-by":"publisher","DOI":"10.1080\/08870446.2012.701628"},{"key":"e_1_2_11_26_1","doi-asserted-by":"publisher","DOI":"10.1080\/08870446.2017.1283041"},{"key":"e_1_2_11_27_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_11_28_1","doi-asserted-by":"publisher","DOI":"10.1097\/00006199-198311000-00002"},{"key":"e_1_2_11_29_1","volume-title":"Unending work and care: managing chronic illness at home","author":"Corbin JM","year":"1988"},{"key":"e_1_2_11_30_1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kew021"},{"key":"e_1_2_11_31_1","unstructured":"WORD day.About WORD day. 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