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Are You Providing Family-Centered Care and Trauma-Informed Care? Concrete Definitions and Steps towards Measurement
Julia Price, PhD1,2, Lucas Butler, BA3, Charmin Gohel, MD4, Marcie Gawel, MSN3, Nancy Kassam-Adams, PhD5,6, Kristen L. Kohser, MSW, LSW5, Marc Auerbach, MD, MSci3. 1Nemours Children's Health System, Jacksonville, FL, USA, 2Sidney Kimmel Medical School of Thomas Jefferson University, Philadelphia,PA, USA, 3Yale University School of Medicine, New Haven, CT, USA, 4Icahn School of Medicine at Mount Sinai, Elmhurst Hospital Center, Elmhurst, NY, USA, 5The Children's Hospital of Philadelphia, Philadelphia, PA, USA, 6University of Pennsylvania Perelman School of Medicine, Philadelphia, PA, USA.

Background: Family-centered care (FCC) and trauma-informed care (TIC) involves engaging patients and families in care/decision-making and minimizing distress. FCC and TIC are associated with improved health outcomes and patient/family experience. Concrete definitions of relevant provider behaviors are lacking, and there is no validated tool to assess FCC/TIC. We aimed to develop a tool to evaluate FCC/TIC during acute pediatric care.

Methods: We reviewed key policy statements, guidelines, and empirical literature to identify domains of FCC/TIC and specific provider/team behaviors within each domain that comprise FCC/TIC. We further honed the list of behaviors via 1) video review of 26 in-situ simulated pediatric acute care in pediatric and general EDs, 2) iterative qualitative feedback from a multidisciplinary expert panel. We are now conducting interviews with ED providers and parents of children who were present when their child required acute care.

Results: We identified 6 domains of FCC/TIC: sharing information with patients and families, family involvement in care/decisions, addressing family needs/distress, addressing patient distress (pain, emotional distress), promoting effective emotional support for patients, and developmental and cultural competence. We identified 38 unique provider/team behaviors and incorporated these into a measurement tool for FCC/TIC.

Conclusions: Tools to assess and improve current FCC/TIC practices in pediatric acute care are needed. This work defined distinct domains and a first iteration of specific, measurable provider/team behaviors. The prototype tool can be used for educational and quality improvement efforts. Future research will assess its reliability, validity, and association with patient/family experience and outcomes.


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