Exploring Patient, Parent and Clinician Views of Outcomes for Family-Centered Care in Neonatal Settings: A Qualitative Study

Highlights: What are the main findings? Qualitative analysis of family-centered care experiences, drawn from perspectives of parents, a former neonatal patient, and healthcare professionals, identified 42 distinct outcomes which were categorized into five domains. The five domains, with distinct outcomes, highlight the multidimensional family-centered care including: emotional functioning, role functioning, delivery of care, physiological health, and hospital resources. What are the implications of the main findings? These findings show the importance of involving parents, former neonatal patients and healthcare professionals in the development of a robust core outcome set for family-centered care interventions in neonatal settings. The findings provide evidence for more consistent and meaningful evaluation of family-centered care research and practice in neonatology. Background/Objectives: A neonatal intensive care units (NICU) admission of a premature infant is lifesaving; however, it can also be emotionally devastating experiences for parents. Family-centered care (FCC) interventions are designed to support parents and infants in the NICUs by integrating families into care delivery through partnerships with healthcare professionals. Heterogeneity in outcome reporting across FCC studies limits comparability. Developing a core outcome set (COS) for FCC is essential to address this gap. Aim: The aim of this study was to explore the views of former neonatal patients, parents, and healthcare professionals who have experiences with FCC in neonatal settings and elucidate outcomes that are important to them. Methods: This study followed the Core Outcome Measures Effectiveness Trial Handbook, which suggests involving stakeholders in identifying outcomes to reflect what is important to them rather than to researchers. Nine focus group discussions were conducted with 27 international key stakeholders from multiple countries (former neonatal patient n = 1; parents n = 8; healthcare professionals n = 18), reflecting FCC experiences across different neonatal settings. Data were analyzed using a modified framework analysis. Findings: Five outcome domains were identified including 42 distinct outcomes: (1) Emotional functioning/wellbeing of parents, infants, and healthcare professionals, reflecting emotional responses to a NICU admission of an infant; (2) Role functioning of parents, healthcare professionals, and others, highlighting that FCC strengthens their roles; (3) Delivery of care, highlighting the role of staff attitudes and organizational factors in supporting FCC; (4) Physiological health, reflecting infant physical health; (5) Hospital environment and resource use, reflecting healthcare utilization outcomes. Conclusions: Participants’ experiences provide meaningful insights into outcomes that should be evaluated in neonatal research and practice. These findings will inform the development of a COS for FCC in neonatal settings.