Julia Price, PhD, Lucas Butler, BA, Charmin Gohel, MD, et al
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.