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

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, neonatolog...

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Bibliographic Details
Published in:Journal of perinatology 2024-07, Vol.44 (7), p.970-978
Main Authors: Harris, Melissa, Cusatis, Rachel, Malnory, Margaret, Dawson, Sara, Konduri, G. Ganesh, Lagatta, Joanne
Format: Article
Language:English
Subjects:
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Adult
Bronchopulmonary Dysplasia - therapy
Caregivers - psychology
Continuity of care
Discharge
Dysplasia
Education
Female
Health Services Accessibility
Humans
Infant, Newborn
Infant, Premature
Infants
Intensive care
Intensive Care Units, Neonatal
Interviews as Topic
Lung diseases
Male
Medicine
Medicine & Public Health
Neonatal care
Parents - psychology
Patient Discharge
Pediatric Surgery
Pediatrics
Primary care
Prospective Studies
Qualitative Research
Quality of Life
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Summary: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.
ISSN:0743-8346
1476-5543
1476-5543
DOI:10.1038/s41372-024-01880-z