Managing juvenile idiopathic arthritis within the context of their life: What we learnt from children and youth living with juvenile idiopathic arthritis and their parents.

IF 1.5 Q3 RHEUMATOLOGY Musculoskeletal Care Pub Date : 2023-12-01 Epub Date: 2023-08-19 DOI:10.1002/msc.1805
G R Currie, B L Kennedy, Benseler S M, Yeung R S M, Swart J F, Vastert S J, Wulffraat N M, Kip M M A, Gail MacKean, D A Marshall
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Abstract

Introduction: Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease in children and causes short- and long-term disability. Optimal management requires pharmacologic and non-pharmacologic interventions. Few studies have explored the youth and family experience of the management of JIA. This study's objective was to explore the management experience of youth with JIA and their parents.

Methods: This qualitative study used semi-structured interviews with youth 12-18 years of age with JIA receiving biological medication and parents of children with JIA on biological medication. Participants were recruited in clinics using convenience sampling. A thematic analysis approach was employed for data analysis.

Results: Nine youth and 14 parents participated. Four themes were identified that encompassed an overarching theme of participants managing JIA within the context of their life: aspects of life affected by JIA and its management, lived experience with JIA management, medication decision-making, and involvement in decision-making. Juvenile idiopathic arthritis management is situated within the context of their life but is normally (outside acute events) not central.

Conclusion: Two dimensions were added to those in the literature: parents' overall approaches to health and the sense of urgency surrounding decision-making. Our findings reinforce the importance of person- and family-centred care in paediatric rheumatology. That is, identifying what matters most to youth and their parents given their current life circumstances to provide a foundation for discussions of how they want to manage their JIA.

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在生活中管理幼年特发性关节炎:我们从患有幼年特发性关节炎的儿童和青少年及其父母那里学到了什么。
导言:幼年特发性关节炎(JIA)是儿童最常见的风湿性疾病,会导致短期和长期残疾。最佳治疗需要药物和非药物干预。很少有研究探讨青少年和家庭在治疗 JIA 方面的经验。本研究的目的是探讨青少年 JIA 患者及其父母的管理经验:这项定性研究采用半结构化访谈的方式,访问了 12-18 岁正在接受生物药物治疗的 JIA 青少年以及正在接受生物药物治疗的 JIA 患儿的家长。参与者是在诊所通过方便抽样的方式招募的。数据分析采用主题分析法:结果:9 名青少年和 14 名家长参加了调查。结果:9 名青少年和 14 名家长参与了研究。研究确定了四个主题,其中包括参与者在其生活背景下管理 JIA 的总体主题:受 JIA 及其管理影响的生活方面、管理 JIA 的生活经验、用药决策以及参与决策。幼年特发性关节炎的管理与他们的生活息息相关,但通常(在急性事件之外)并不处于中心位置:在文献研究的基础上增加了两个维度:父母对健康的整体态度以及围绕决策的紧迫感。我们的研究结果加强了儿科风湿病学中以个人和家庭为中心的护理的重要性。也就是说,根据青少年及其父母目前的生活状况,确定什么对他们最重要,从而为讨论他们希望如何管理自己的JIA奠定基础。
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来源期刊
Musculoskeletal Care
Musculoskeletal Care RHEUMATOLOGY-
CiteScore
2.30
自引率
7.70%
发文量
88
期刊介绍: Musculoskeletal Care is a peer-reviewed journal for all health professionals committed to the clinical delivery of high quality care for people with musculoskeletal conditions and providing knowledge to support decision making by professionals, patients and policy makers. This journal publishes papers on original research, applied research, review articles and clinical guidelines. Regular topics include patient education, psychological and social impact, patient experiences of health care, clinical up dates and the effectiveness of therapy.
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