Empowering Young People Living With Juvenile Idiopathic Arthritis to Better Communicate With Families and Care Teams: Content Analysis of Semistructured Interviews

JMIR MHealth and UHealth
Stuart W GrandeGreg Kotzbauer

Abstract

Young people living with juvenile idiopathic arthritis (JIA) face a number of communication barriers for achieving optimal health as they transition from pediatric care into adult care. Despite growing interest in mobile or wireless technologies to support health (mHealth), it is uncertain how these engagement tools might support young people, their families, and care teams to optimize preference-based treatment strategies. This study aims to examine how an mHealth patient support system (mPSS) might foster partnership between young people living with JIA, their families, and care teams. Semistructured interviews with young people (5-15 years old), their families, and JIA care teams were conducted using researcher-developed interviews guides. Transcribed data were qualitatively analyzed using conventional content analysis. We conducted semistructured interviews with 15 young people, their parents, and 4 care team members. Content analysis revealed the potential of an mPSS to support productive dialogue between families and care teams. We identified four main themes: (1) young people with JIA face communication challenges, (2) normalizing illness through shared experience may improve adherence, (3) partnership opens windows into...Continue Reading

References

Jan 16, 1999·Baillière's Clinical Rheumatology·R E Petty
Mar 25, 2004·Rheumatology·K L ShawUNKNOWN British Paediatric Rheumatology Group
Oct 6, 2005·Qualitative Health Research·Hsiu-Fang Hsieh, Sarah E Shannon
Aug 9, 2007·PLoS Medicine·Victor M MontoriAudrey J Weymiller
Aug 3, 2010·Journal of Medical Internet Research·Jennifer StinsonMeghan White
Sep 14, 2010·Journal of Evaluation in Clinical Practice·Mary C Politi, Richard L Street
Sep 14, 2011·Annals of Family Medicine·Ronald M Epstein, Richard L Street
Feb 1, 2012·Arthritis Care & Research·Esi Morgan DeWittUNKNOWN Juvenile Idiopathic Arthritis Disease-specific Research Committee of Childhood Arthritis Rheumatology and Research Alliance
May 11, 2012·Journal of Health Communication·Wendy NilsenAudie A Atienza
May 11, 2012·Journal of Health Communication·Patricia MechaelAndrew S Kanter
Nov 10, 2012·BMJ : British Medical Journal·Albert G MulleyGlyn Elwyn
Jan 8, 2013·Current Rheumatology Reports·Yvonne C Lee
Apr 9, 2013·The Journal of Adolescent Health : Official Publication of the Society for Adolescent Medicine·Ellen A LipsteinMaria T Britto
Sep 2, 2014·Patient Education and Counseling·Glyn ElwynRonald Epstein
Oct 9, 2014·The Physician and Sportsmedicine·Emily KnightRobert J Petrella
Dec 3, 2014·Journal of Pediatric Nursing·Veronica Swallow
Dec 5, 2014·International Journal of Clinical Practice·H Anglada-MartinezC Codina-Jane
Mar 25, 2015·Journal of Medical Internet Research·Saee HamineAmy Sarah Ginsburg
Jul 8, 2015·Patient Preference and Adherence·Flora TzelepisElizabeth A Fradgley
Sep 18, 2015·BMJ Quality & Safety·Maren BataldenHans Hartung
May 18, 2016·Journal of Medical Internet Research·Lisa Whitehead, Philippa Seaton
Aug 26, 2016·BMJ Quality Improvement Reports·Jeffrey R SavarinoEsther J Israel
Oct 18, 2016·Rheumatology and Therapy·Gabriella GiancaneAngelo Ravelli
Nov 4, 2016·Journal of Medical Internet Research·Jing ZhaoMu Li
Apr 6, 2017·Journal of Pediatric Oncology Nursing : Official Journal of the Association of Pediatric Oncology Nurses·Lindsay A JibbJennifer N Stinson
Apr 13, 2017·The Cochrane Database of Systematic Reviews·Dawn StaceyLyndal Trevena
May 18, 2017·Pediatric Rheumatology Online Journal·Andrea CodaDavinder Singh-Grewal
Jun 7, 2017·Pediatric Rheumatology Online Journal·William B BrinkmanEsi Morgan
Aug 3, 2017·Journal of Medical Internet Research·Aniek J LentferinkJulia Ewc van Gemert-Pijnen
Oct 29, 2017·Journal of Medical Internet Research·Teja VorugantiJacqueline L Bender
Jun 26, 2018·Quality & Quantity·Benjamin SaundersClare Jinks

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Citations

Jan 5, 2021·Expert Review of Clinical Immunology·Rodrigo Joel de OliveiraSimone Appenzeller
Jan 20, 2021·Journal of Medical Internet Research·Andreas HagerCarolina Wannheden
Nov 4, 2021·Pediatric Rheumatology Online Journal·Veronica LundbergAnncristine Fjellman-Wiklund

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Software Mentioned

ATLAS
Mom
Genia
mPSS
JIA
ti
Pain Squad +
JIApp

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