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Why do children with severe bronchopulmonary dysplasia not attend neonatal follow‐up care? Parental views of barriers
Author(s) -
Brady Jennifer M.,
Pouppirt Nicole,
Bernbaum Judy,
D'Agostino Jo Ann,
Gerdes Marsha,
Hoffman Casey,
Cook Noah,
Hurt Hallam,
Kirpalani Haresh,
DeMauro Sara B.
Publication year - 2018
Publication title -
acta paediatrica
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.772
H-Index - 115
eISSN - 1651-2227
pISSN - 0803-5253
DOI - 10.1111/apa.14265
Subject(s) - medicine , bronchopulmonary dysplasia , pediatrics , gestational age , attendance , population , birth weight , pregnancy , genetics , environmental health , economic growth , economics , biology
Aim To assess in children with severe bronchopulmonary dysplasia at a corrected age of 18–36 months: (i) Neonatal follow‐up clinic attendance rates; (ii) Parent‐identified reasons for difficulty attending neonatal follow‐up. Methods Mixed methods study utilising semi‐structured phone interviews with parents of infants eligible for follow‐up with severe bronchopulmonary dysplasia (defined as gestational age <32 weeks and requiring ≥30% FiO 2 and/or >2 L nasal cannula at 36 weeks post‐menstrual age) at 18–36 months corrected age. Questions addressed barriers to neonatal follow‐up attendance. Enrolment continued to saturation (no new themes emerging). Results A total of 58 infants (69% male) were enrolled. Infants were 26 ± 2.1 weeks gestational age and birth weight 794 ± 262 g. At 28 ± 5.8 months corrected age, 26% had never attended neonatal follow‐up clinic, 16% stopped attending before discharge, 5% were discharged, and 53% were still followed. Longer travel distance from home to follow‐up clinic was associated with poorer attendance. Parent‐generated items related to neonatal follow‐up barriers were coded into four themes: Logistics, Time, Perceptions and Emotional Stress. Conclusion Despite high risk of developmental delay in infants with severe bronchopulmonary dysplasia, neonatal follow‐up rates are suboptimal. Careful review of parent‐identified barriers could be utilised to develop targeted strategies to improve neonatal follow‐up attendance in this high‐risk population.