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

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.

Influence of transition readiness from paediatric to adult health care on quality of life in child–parent dyads with long‐term conditions

“…However, qualitative research has demonstrated that parents' positive attitude of children's self‐ and disease management may be associated with better parental QoL (Franklin et al., 2019). In some interviews, parents expressed the hope that they could transfer the primary responsibility of care to children to reduce their anxiety when facing fluctuation of children's diseases, which confirmed the actor effect (Grande et al., 2019; Melita et al., 2019).…”

“…Some reviews suggested designing a transition readiness plan that includes parents was a vital point during transition trajectory (Melita et al., 2019; Sliwinski et al., 2017). Qualitative research demonstrated children would experience loneliness due to this transition to an unfamiliar environment (Grande et al., 2019; Nicholas et al., 2018). Through peer support and parents' mental health support during transition readiness, children could reduce their fear and improved their adherence to medicine and shorten the adaptation time from paediatrics to adult department (Le Marne et al., 2019; Maslow et al., 2013).…”

“…Practically, connection and collaboration in our study's parent–child dyad should be taken into consideration in clinics because of explicit interdependence on a dyadic appraisal, dyadic management and dyadic health during long‐term care. Nevertheless, most research concerning transition readiness and QoL in childhood‐onset long‐term conditions only focused on involvement of child or caregiver in isolation (Grande et al., 2019; Smith et al., 2019). There is a need for further exploration of the dyadic perception of transition readiness and promotion of the process.…”

A Mobile Health Platform for Self-Management of Pediatric Cystic Fibrosis: Qualitative Study of Adaptation to Stakeholder Needs and Integration in Clinical Settings

“…App repositories include hundreds of apps that claim to improve disease management, health outcomes, and health-related behaviors. However, few are evidence-based solutions developed with the involvement of health care professionals, patients, caregivers, and behavioral scientists [ 33 , 34 ]. Even fewer are tailored to the components of daily CF care and the symptoms typically experienced by people with CF.…”

“…Genia supports the upload of images (eg, a patient may take a photo of their sputum and upload it via the app) and can connect to other apps or devices, such as electronic spirometers and smart medication dispensers. A proof-of-concept test of the Genia platform in juvenile idiopathic arthritis reported that it improves patient engagement, patient-centered care, and practice-based learning and recommended the uptake of the platform in other chronic conditions [ 33 , 34 ].…”