Challenges Nurses Face in Providing Care for Patients with Juvenile Idiopathic Arthritis

Mie Fusama; Hideko Nakahara; Takako Miyamae; Masaaki Mori; Yukitomo Urata; Kimito Kawahata; Yutaka Kawahito; Masayo Kojima; Takahiko Sugihara; Motomu Hashimoto; Atsuko Murashima; Nobuyuki Yajima; Toshihiro Matsui

doi:10.1093/mr/roae041

Challenges Nurses Face in Providing Care for Patients with Juvenile Idiopathic Arthritis

Mod Rheumatol. 2024 May 6:roae041. doi: 10.1093/mr/roae041. Online ahead of print.

Authors

Affiliations

¹ Health Sciences Department of Nursing, Kansai University of International Studies, Hyogo, Japan.
² Faculty of Health Science, Osaka Yukioka College of Health Science, Osaka, Japan.
³ Department of Pediatric Rheumatology, Institute of Rheumatology, Tokyo Women's Medical University, Tokyo, Japan.
⁴ Department of Lifetime Clinical Immunology, Graduate School of Medical and Dental Sciences, Tokyo Medical and Dental University, Tokyo, Japan.
⁵ Department of Rheumatology, Tsugaru General Hospital, Aomori, Japan.
⁶ Department of Rheumatology and Allergology, St. Marianna University School of Medicine, Kawasaki, Japan.
⁷ Inflammation and Immunology, Kyoto Prefectural University of Medicine, Kyoto, Japan.
⁸ Nagoya City University Graduate School of Medical Sciences, Nagoya, Japan.
⁹ Department of Clinical Immunology, Osaka City University Graduate School of Medicine, Osaka, Japan.
¹⁰ Japan Drug Information Institute in Pregnancy, National Center for Child Health and Development, Japan.
¹¹ Division of Rheumatology, Department of Internal Medicine, Showa University School of Medicine, Tokyo, Japan.
¹² Department of Rheumatology Research, Clinical Research Center for Allergy and Rheumatology, National Hospital Organization Sagamihara National Hospital, Sagamihara, Japan.

PMID: 38722031
DOI: 10.1093/mr/roae041

Abstract

Objectives: This study aimed at identifying challenges nurses face in caring for patients with juvenile idiopathic arthritis (JIA) in Japan.

Methods: Nurses certified by the Japan Rheumatism Foundation were asked to describe their challenges with caring for JIA patients. Data was analyzed using qualitative content analysis.

Results: Responses were collected from 89 participants. 58 issues were identified from 40 participants with experience caring for JIA patients. Sixteen categories emerged, grouped into five challenges: communication, understanding, expertise, system, and collaboration. Care for JIA patients included different challenges from adult patients with rheumatoid arthritis, such as complicated patient-parent relationships, inadequate patient independence and insufficient patient information. Moreover, 76 issues from 49 participants with no experience were identified. Seven categories emerged, grouped into two challenges: expertise and opportunity. Issues included in expertise between both groups were similar. Even with no experience caring for JIA patients, nurses recognized the importance of acquiring knowledge.

Conclusion: This is the first study in Japan regarding the difficulties nurses face in caring for JIA patients. Multidisciplinary team care and a comprehensive understanding of the patient journey, including relationships with guardians, acquaintances, and healthcare providers, is crucial to improve treatment outcome and overall patient quality of life.

Keywords: collaboration; communication; independence; parent; transition.

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