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

Journal of Perinatology (2024)Cite this article

Subjects

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.

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Fig. 1: Conceptual framework of barriers to care for infants with bronchopulmonary dysplasia after discharge.

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Data availability

The datasets generated and analyzed are available from the corresponding author on reasonable request.

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Funding

This project is funded in part by the Advancing a Healthier Wisconsin Endowment (GGK, JL), the Children’s Research Institute (JL), and the National Institutes of Health K23HL136525 (JL), KL2 TR001438 (RC) and UL1 TR001436 (JL, RC). The content is solely the responsibility of the author(s) and does not necessarily represent the official views of the NIH.

Author information

Authors and Affiliations

  1. Institute for Health and Equity, Medical College of Wisconsin, Milwaukee, WI, USA

    Melissa Harris

  2. Department of Medicine, Medical College of Wisconsin, Milwaukee, WI, USA

    Rachel Cusatis

  3. Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA

    Margaret Malnory, Sara Dawson, G. Ganesh Konduri & Joanne Lagatta

Authors
  1. Melissa Harris
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Contributions

MH: conceptualization, methodology, formal analysis, investigation, data curation, writing – original draft, visualization, project administration. RC: conceptualization, methodology, formal analysis, data curation, writing – review and editing, funding acquisition. MM: investigation, writing- review and editing, project administration. SD: conceptualization, investigation, writing – review and editing. GK: conceptualization, resources, writing – review and editing, supervision, funding acquisition. JL: conceptualization, methodology, formal analysis, writing – review and editing, visualization, supervision, funding acquisition.

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Correspondence to Joanne Lagatta.

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Harris, M., Cusatis, R., Malnory, M. et al. 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). https://doi.org/10.1038/s41372-024-01880-z

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  • DOI: https://doi.org/10.1038/s41372-024-01880-z

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