Abstract

BackgroundMobile health (mHealth) technologies have potential to improve self-management and care co-ordination of pediatric chronic diseases requiring complex care, such as cystic fibrosis (CF). Barriers to implementation include the lack of support and infrastructure to use mHealth in the clinical microsystem. Coproducing mHealth technology with patients, clinicians, and designers may increase the likelihood of successful integration into the clinical setting.ObjectiveThis study explored the development, adoption, and integration of a new, co-produced mHealth platform (Genia) for the management of pediatric CF in Sweden.MethodsA retrospective, qualitative case study approach was used. The case was defined as the process of introducing and using Genia at the Pediatric Cystic Fibrosis Center at Skåne University Hospital in Lund, Sweden. Data sources included interviews, presentations, meeting notes, and other archival documents created between 2014 and 2017. To be included, data sources must have described or reflected upon the Genia adoption process. Iterative content analysis of data source materials was conducted by 2 qualitatively trained researchers to derive themes characterizing the mHealth clinical adoption process.ResultsIn total, 4 core themes characterized successful clinical integration of Genia in Lund: cultural readiness to use mHealth; use of weekly huddles to foster momentum and rapid iteration; engagement in incremental “Genia Talk” to motivate patient adoption; and co-design approach toward pediatric chronic care.ConclusionsPrinciples of quality improvement, relational co-ordination, user-centered design, and coproduction can facilitate the integration of mHealth technology into clinical care systems for pediatric CF care.

Highlights

  • Longitudinal care of children diagnosed with cystic fibrosis (CF)—an autosomal recessive genetic disorder affecting lung capacity—is characterized by substantial personal, familial, and medical burden [1,2]

  • Principles of quality improvement, relational co-ordination, user-centered design, and coproduction can facilitate the integration of Mobile health (mHealth) technology into clinical care systems for pediatric CF care. (JMIR Pediatr Parent 2018;1(2):e11080) doi:10.2196/11080

  • Illustrative quotes are excerpted from interviews with pediatric Lund CF providers

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Summary

Introduction

Longitudinal care of children diagnosed with cystic fibrosis (CF)—an autosomal recessive genetic disorder affecting lung capacity—is characterized by substantial personal, familial, and medical burden [1,2]. The challenge to co-ordinated care impacts young people during a developmentally vulnerable time, when they move from clinician-regulated pediatric care to increasingly autonomous self-management of their illness [6]. Successful transition to adult CF care is dependent on consistent, appropriate, and increasingly independent maintenance of a care regimen [7]. Encouraging these patterns of behavior in late childhood and early adolescence fosters stability and reliability of personal management of chronic illness into adulthood [8]. Mobile health (mHealth) technologies have potential to improve self-management and care co-ordination of pediatric chronic diseases requiring complex care, such as cystic fibrosis (CF). Coproducing mHealth technology with patients, clinicians, and designers may increase the likelihood of successful integration into the clinical setting

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