Study: Parent Provider Alliance (PPA)
Study Type: Prospective Survey Study
Study Period: January 2016 – March 2019
About 55,000 children die annually in the U.S. affecting the health and welfare of many families. Most of these deaths occur in hospitals, mainly in intensive care units. Parents whose children die in pediatric intensive care units (PICUs) are at high risk for adverse health outcomes. The Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN) previously demonstrated a high prevalence of complicated grief, a chronic debilitating disorder, among parents whose children died in PICUs. Therapeutic alliance, a key component of patient and family-centered care (PFCC), is the collaborative bond that develops between patients/families and their healthcare providers. The strength of therapeutic alliance has been shown to affect treatment outcomes for many conditions. Therapeutic alliance includes high quality communication, caring and trust, aspects of healthcare deemed essential by parents of terminally ill children. What is not known is the extent to which therapeutic alliance can reduce complicated grief and other adverse health outcomes among parents after a child’s death in a PICU.
The study is based around a multi-site longitudinal survey of parents 6 & 13 months after their child’s death in a CPCCRN-affiliated ICU. Parent characteristics and perceived therapeutic alliance will be assessed at 6 months, while parent health outcomes will be measured at 6 & 13 months. The study will determine the extent of therapeutic alliance bereaved parents perceive to have occurred between parents and their child’s physicians and other healthcare providers during the child’s PICU stay, as well as which therapeutic alliance is associated with parents’ health outcomes after their child’s death in a PICU.
- To obtain the Public Release Research Dataset follow the procedures outlined on the NICHD Data and Specimen Hub (DASH) website.