Developing a Process to Assess Family Experience and Satisfaction at a Pediatric Complex Care Clinic in Hawaiʻi

Abstract

AbstractChildren with medical complexity (CMC) have multisystem disease, marked impairment, technology dependence for activities of daily living, and represent a disproportionately large share of system costs. In response to the needs of local CMC, the Kapiʻiolani Women and Children Medical Center started a new Pediatric Complex Care Clinic (PC3) in 2019. A year after the clinic’s inception, no formal evaluation of services had yet been done. The purpose of this Doctor of Nursing (DNP) project was to develop a sustainable process to evaluate family experience and satisfaction with services at the PC3. The Model for Evidence-Based Practice Change guided this DNP project. The survey was based on previously validated tools and developed in collaboration with PC3 clinic leadership. From June to December 2020 all eligible families were asked to complete the online SurveyMonkey survey. Informal discussions with core PC3 staff obtained qualitative feedback about the implementation process. Fifty families received services in the PC3 during the implementation period, 34 were eligible to take the survey, and 23 families responded, resulting in a response rate of 68%. A comprehensive clinic workflow with an embedded survey workflow was created in collaboration with PC3 leadership. Before this project, the PC3 had no means of formally evaluating their services. The developed survey and clinical workflow provides the PC3 with a process to collect valuable information for quality improvement efforts, program planning, service expansion, and continued support and buy-in from hospital administration. Keywords: children with medical complexity, care coordination, pediatric complex care, family experience and satisfaction survey