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Why do children with severe bronchopulmonary dysplasia not attend neonatal follow-up care? Parental views of barriers.

Authors
  • Brady, Jennifer M1, 2
  • Pouppirt, Nicole1
  • Bernbaum, Judy3
  • D'Agostino, Jo Ann3
  • Gerdes, Marsha4
  • Hoffman, Casey4
  • Cook, Noah1
  • Hurt, Hallam1
  • Kirpalani, Haresh1
  • DeMauro, Sara B1
  • 1 Division of Neonatology, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
  • 2 Division of Neonatology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
  • 3 Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
  • 4 Department of Child and Adolescent Psychiatry and Behavior Sciences, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
Type
Published Article
Journal
Acta Paediatrica
Publisher
Wiley (Blackwell Publishing)
Publication Date
Jun 01, 2018
Volume
107
Issue
6
Pages
996–1002
Identifiers
DOI: 10.1111/apa.14265
PMID: 29420848
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

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. 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% FiO2 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). 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. 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. ©2018 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

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