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.
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
{"title":"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.","authors":"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","doi":"10.1002/msc.1805","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusion: </strong>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.</p>","PeriodicalId":46945,"journal":{"name":"Musculoskeletal Care","volume":null,"pages":null},"PeriodicalIF":1.5000,"publicationDate":"2023-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Musculoskeletal Care","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1002/msc.1805","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2023/8/19 0:00:00","PubModel":"Epub","JCR":"Q3","JCRName":"RHEUMATOLOGY","Score":null,"Total":0}
引用次数: 0
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.
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.