Synthesizing Interest-holder Perspectives and Evidence-based Potentially Better Practices to Improve High-risk Infant Follow-through Care Quality

Abstract

Introduction: Despite specialized high-risk infant follow-up (HRIF) being the standard of care for preterm and medically complex infants after hospital discharge, program participation remains low, and equity gaps persist. Little work has examined HRIF’s perceived value, or lack thereof, for families, staff, and other key interest-holders. Our objective was to examine interest-holders’ perspectives of the value of the HRIF program using qualitative methods to inform continuous quality improvement (CQI) work. Methods: Families (n = 6) and staff (n = 9) in a single, urban pediatric hospital HRIF program participated in semistructured interviews. National content experts (n = 4) did as well. All interviews explored barriers and facilitators to HRIF participation, patient experience, and program goals/operations using a grounded theory approach to thematic analysis. Finally, the resulting themes were compared to the domains of the Vermont Oxford Network’s Potentially Better Practices (PBPs) for Follow-Through. Results: A majority (≥50%) of participants highlighted each theme. Staff and family themes included HRIF staff’s care expertise for formerly preterm infants, the benefits of long-term monitoring, and the need for greater family engagement and action on social determinants of health. Families alone indicated a need for better support during transitions from the neonatal intensive care unit and HRIF. Most participants highlighted the program’s multidisciplinary nature as important. Study themes were synergistic with PBP domains. Conclusions: Interviews with key interest-holders identified benefits of HRIF program participation while offering critical insights into opportunities for CQI initiatives. Given the alignment of evidence-based PBPs with reported themes, future research should explore the clinical application of PBPs in follow-through CQI work.