A research program built around children and their families.

My research sits at the intersection of pediatric chronic condition management, family informatics, and human-centered design — anchored by the theoretical framework I developed and applied across conditions.

Research program

Theory · Practice · Translation

Pediatric chronic condition research overwhelmingly focuses on parental perspectives, which can marginalize children from their own care. The Common-Sense Model of Parent-Child Shared Regulation (CSM-PC), which I published with Insel in 2016, frames management as shared management — a dynamic responsibility held by parent and child together as the child grows. It has since been adopted across pediatric cancer, epilepsy, concussion, spinal muscular atrophy, and other rare diseases by research teams in the US, Canada, Germany, Netherlands, and Portugal.

From that foundation, my work extends into family informatics — using human-centered design to build technologies that support shared management — alongside system-level pediatric nurse practitioner workforce research that has informed national position statements, federal testimony, and expanded Title VIII funding.

Theory

The CSM-PC framework.

A theoretical framework that reframes pediatric chronic condition management as a dynamic, shifting responsibility shared by parent and child as the child grows. Reformulated for sleep and asthma self-management in subsequent papers led by student mentees.

Foundational · 2016 →
Family informatics

IMPACT.

An asthma shared-management solution co-designed with children and parents. A wearable pairs with a companion app to track symptom trends and deliver tailored, gamified interventions that engage parent and child together.

PI · NIH/NINR R21
Family informatics

ReSET.

A nature-based VR stress intervention designed with and for adolescents — the first known no-contact VR study, deployed during COVID. Co-PI with E.A. Bjorling at UW Human Centered Design & Engineering.

Co-PI · NIH/NIMH
Workforce

COVID-19 PNP workforce.

National research with Dr. Jessica Peck — first to sound the alarm on COVID-19 impacts on children and the PNP workforce. Best Article 2021, INANE Hall of Fame, President's Choice 2023.

Federal testimony · Title VIII

Current projects

Active research grants & program funding

A snapshot of currently active research grants and program funding.

2025 — 2026Cystic Fibrosis Foundation
PI Mentor

TEAM-CF — Together Empowering and Managing Cystic Fibrosis

Principal Investigator Mentor on an exploratory study of pediatric empowerment and shared management for school-aged children with cystic fibrosis. PI: A. Steidl (student mentee). CFF 009647H225.

2024 — 2027Cystic Fibrosis Foundation
Site PI Multicenter RCT

STOP PEDS — Streamlined Treatment of Pulmonary Exacerbations in Pediatrics

Site Principal Investigator on a multicenter randomized controlled trial of pulmonary exacerbation management for children with cystic fibrosis. MPIs: D.B. Sanders & M. Rosenfeld. CFF 006811A124.

2023 — 2026NIH NCATS & NHLBI
Site PI Rare Diseases Network

Respiratory exacerbations in primary ciliary dyskinesia

Site Principal Investigator on a longitudinal characterization of respiratory tract exacerbations and treatment responses in primary ciliary dyskinesia, within the Genetic Disorders of Mucociliary Clearance Rare Diseases Clinical Research Network. PI: J. Hatch. NIH/NCATS & NHLBI U54HL096458.

OngoingUW · CFF · Horizon 2020
Director Methods core

Spirometry 360°

Trademarked spirometry training modules, patient and family training, and a methods core supporting spirometry in clinical research. Disseminated internationally in 13 countries through the IPCRG's Horizon 2020 Fresh Air program; Russian, Vietnamese, and Dutch translations available.

spirometry360.org →

Selected publications

Six highlights · ★ student mentee co-author

Selected publications across scholarly focal areas — theoretical foundations, family informatics, and pediatric nurse practitioner workforce.

Workforce2021 · J Pediatric Health Care
Best Article 2021 INANE Hall of Fame

Exhausted and Burned Out: COVID-19 Emerging Impacts Threaten the Health of the Pediatric Advanced Practice Registered Nursing Workforce

Peck, J.L. & Sonney, J. (2021). Journal of Pediatric Health Care, 35(4), 414–424.

View on PubMed →
Workforce2023 · J Pediatric Health Care
President's Choice 2023

The Cost of Caring During COVID-19: A Clarion Call to Action to Support the Pediatric Advanced Practice Nursing Workforce

Sonney, J. & Peck, J.L. (2023). Journal of Pediatric Health Care, 37(6), 658–672.

View on PubMed →
Family informatics2022 · JMIR Pediatrics & Parenting
NIH-funded Open access

Refinement of a Parent-Child Shared Asthma Management Mobile Health App: Human-Centered Design Study

Sonney, J., ★Cho, E., ★Zheng, Q., & Kientz, J.A. (2022). JMIR Pediatrics & Parenting, 5(1):e34117.

View on PubMed →
Family informatics2025 · J Pediatric Health Care
President's Choice 2025

Assessing Utilization of Spirometry Among Pediatric Primary Care Providers

★Taylor, Q. & Sonney, J. (2025). Journal of Pediatric Health Care.

View on PubMed →
Theory2016 · Nursing Science Quarterly
Foundational CSM-PC

Reformulating the Common Sense Model of Self-Regulation: Toward Parent-Child Shared Regulation

Sonney, J.T. & Insel, K.C. (2016). Nursing Science Quarterly, 29(2), 154–159.

View on PubMed →
Theory2024 · J Pediatric Nursing

The Pediatric Self-Management Model in Asthma: A Theory Analysis and Evaluation

★Steidl, A. & Sonney, J. (2024). Journal of Pediatric Nursing.

View on PubMed →
Complete record

Full bibliography on NIH/NCBI

Including all peer-reviewed articles, book chapters, methods papers, and conference proceedings — updated continuously as the work evolves.

Read on →