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Illness uncertainty in parents of children with juvenile idiopathic arthritis

Pearce, C., Newman, S. P. ORCID: 0000-0001-6712-6079 and Mulligan, K. ORCID: 0000-0002-6003-3029 (2021). Illness uncertainty in parents of children with juvenile idiopathic arthritis. ACR Open Rheumatology,

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: This is the peer reviewed version of the following article: Pearce, C., Newman, S. P. and Mulligan, K. (2021). Illness uncertainty in parents of children with juvenile idiopathic arthritis. ACR Open Rheumatology, which has been published in final form at https://onlinelibrary.wiley.com/journal/25785745. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions.
Publisher Keywords: juvenile idiopathic arthritis; illness uncertainty; parents
Subjects: R Medicine > RC Internal medicine
R Medicine > RJ Pediatrics
Departments: School of Health Sciences > Healthcare Services Research & Management
Date Deposited: 03 Feb 2021 11:22
URI: https://openaccess.city.ac.uk/id/eprint/25599
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