EXPERIENCE-Feedback Project

An estimated 698,000 children in the U.S. live with serious illness and significant care needs. A complex system of hospital and community providers and agencies supports these children and their families living at home, but families are still challenged by significant gaps in this system. Compounding these challenges are the socioeconomic and environmental (SEE) factors that excerbate the negative impact of serious illness on children and families. Families, particularly those from underserved communities, may also experience increased financial difficulties, greater household material hardships, and lower social support.

Taken together, these health system and SEE challenges have deleterious impacts on children’s and families’ wellbeing. In response to these challenges, timely and tailored clinical actions are urgently needed to support children and families living at home. Pediatric palliative care (PPC) programs are uniquely poised to support children and families, but these programs are typically based in pediatric hospitals and few offer home services. Care is thus often provided from afar, without information about families’ day-to-day care experiences and if care is aligned with families’ needs over time.

Routinely collecting and rapidly feeding back digitally-captured data about families’ home-based PPC experiences to PPC teams may a) enable tailored clinical actions to increase concordance between families’ needs and home-based PPC, b) support teams to address the health system and SEE challenges faced by children and families, and c) improve outcomes for children and families. The proposed Home-based PPC Experiences for Children with Serious Illness and Families Feedback Study (EXPERIENCE-Feedback), informed by the Chronic Care Model, the clinical decision support framework, NINR’s mission, and community-engaged research principles, will evaluate a rapid digital information feedback loop between families at home and PPC providers over time, explore longitudinal associations between home-based PPC experiences and child/family outcomes, and build a foundation for future community-engaged interventions by evaluating the feasibility and actionability of rapidly (i.e., simultaneous with family reporting) feeding back digitally-captured, family-reported experiences with home-based PPC to PPC teams over time (Aim 1), and exploring the longitudinal associations between home-based PPC experiences and child (Aim 2) and family (Aim 3) physical, mental, and social health outcomes. This award, with mentorship by an interdisciplinary research team at the University of Pennsylvania and the Children’s Hospital of Philadelphia, will support advanced training in longitudinal, community-engaged, and intervention research methods. The proposed project builds a foundation for future R01 intervention studies and supports the applicant’s career goal to advance access to high-quality care and care outcomes for all children living with serious illness and their families in homes and communities.

Grant Number: 5K23NR021042-02
NIH Institute/Center: NIH
Principal Investigator: Jackelyn Boyden