Identifying barriers and facilitators to care for infants with bronchopulmonary dysplasia after NICU discharge: a prospective study of parents and clinical stakeholders

Melissa Harris; Rachel Cusatis; Margaret Malnory; Sara Dawson; G Ganesh Konduri; Joanne Lagatta

doi:10.1038/s41372-024-01880-z

Identifying barriers and facilitators to care for infants with bronchopulmonary dysplasia after NICU discharge: a prospective study of parents and clinical stakeholders

J Perinatol. 2024 Jan 26. doi: 10.1038/s41372-024-01880-z. Online ahead of print.

Authors

Melissa Harris¹, Rachel Cusatis², Margaret Malnory³, Sara Dawson³, G Ganesh Konduri³, Joanne Lagatta⁴

Affiliations

¹ Institute for Health and Equity, Medical College of Wisconsin, Milwaukee, WI, USA.
² Department of Medicine, Medical College of Wisconsin, Milwaukee, WI, USA.
³ Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA.
⁴ Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA. jlagatta@mcw.edu.

PMID: 38278963
DOI: 10.1038/s41372-024-01880-z

Abstract

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 immediate caregiving activities with future health outcomes; and integrating primary care, specialty, 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.

Abstract

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