City Research Online

Abstract

Objective
To gain a better understanding of uncertainty regarding the illness experienced by parents of children with juvenile idiopathic arthritis (JIA).

Method
Parents/guardians of a child or young person (aged below 18 years) diagnosed JIA were recruited via the UK National Rheumatoid Arthritis Society JIA group (JIA-at-NRAS). Semi10 structured telephone interviews were conducted with the parents.

Results
Twenty parents took part, 19 mothers and one father. Their children with JIA were mostly female (n=15, 75%) with polyarticular arthritis (n=12, 60%), averaged eight years of age and had been diagnosed for a mean of 3.7 (SD2.3) years. Parents expressed uncertainty in five key domains: Diagnosis, cause, symptoms and prognosis; Medical management; Impact; Parenting uncertainty; Awareness of JIA. All participants expressed uncertainty in at least four of the five domains. Although parents’ 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’s future and a lack of support with managing the emotional aspects of living with JIA.

Conclusion
We found that parents’ experiences of uncertainty went beyond dealing with the purely medical aspects of JIA. Provision of information about JIA, while essential, is not sufficient to help parents manage the considerable uncertainty they experience about many aspects of their child’s 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.

Publication Type:	Article
Additional Information:	© 2021 The Authors. ACR Open Rheumatology published by Wiley Periodicals LLC on behalf of American College of Rheumatology.This is an open access article under the terms of the Creative Commons Attribution- NonCommercial- NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non- commercial and no modifications or adaptations are made.
Publisher Keywords:	juvenile idiopathic arthritis; illness uncertainty; parents
Subjects:	R Medicine > RC Internal medicine R Medicine > RJ Pediatrics
Departments:	School of Health & Psychological Sciences > Healthcare Services Research & Management
SWORD Depositor:	Symplectic Administrator

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