Objective: Understand barriers and facilitators to follow-up care for infants with bronchopulmonary dysplasia (BPD).
Methods: Qualitative study of parents and clinical stakeholders caring for infants with BPD. The interview guide was developed by a mother of a former 23-week preterm infant, neonatologist, pulmonologist, nurse, and qualitative researcher. Purposive sampling obtained a heterogenous sociodemographic and professional cohort. Subjects discussed their experience with BPD, barriers to care, caregiver quality of life and health education. Interviews were audio-recorded, transcribed and coded. Thematic analysis was used.
Results: Eighteen parents and 20 stakeholders completed interviews. Family-level themes included pragmatic barriers like transportation being multi-faceted; and caregiving demands straining mental health. System-level themes included caregiver education needing to balance process needs with future trajectories; and integration of primary care, specialty care, and community supports.
Conclusions: Individual and system barriers impact follow-up for infants with BPD. This conceptual framework can be used to measure and improve care.
Keywords: bronchopulmonary dysplasia; neonatal intensive care; prematurity; social determinants of health.