Empowering young people living with juvenile idiopathic arthritis to better communicate with families and care teams: content analysis of semistructured interviews

Stuart W. Grande, Meghan R. Longacre, Karin Palmblad, Meera V. Montan, Rikard P. Berquist, Andreas Hager, Greg Kotzbauer

Research output: Contribution to journalArticlepeer-review

17 Scopus citations

Abstract

Background: 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. Objective: 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. Methods: 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. Results: 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 illness experiences, and (4) readiness to engage appears critical for clinic implementation. Conclusions: A human-centered mPSS design that offers JIA patients the ability to track personally relevant illness concerns and needs can enhance communication, generate consensus-based treatment decisions, and improve efficiency and personalization of care. Technology that supports continuous learning and promotes better understanding of disease management may reduce practice burden while increasing patient engagement and autonomy in fostering lasting treatment decisions and ultimately supporting personalized care and improving outcomes.

Original languageEnglish (US)
Article numbere10401
JournalJMIR mHealth and uHealth
Volume7
Issue number2
DOIs
StatePublished - Feb 2019

Bibliographical note

Funding Information:
This work was funded as a collaborative research project with Genentech, Inc.

Publisher Copyright:
© Stuart W Grande, Meghan R Longacre, Karin Palmblad, Meera V Montan, Rikard P Berquist, Andreas Hager, Greg Kotzbauer.

Keywords

  • Health communication
  • Interviews
  • Juvenile arthritis
  • Patient participation

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