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

Jennifer M. Brady, Nicole Pouppirt, Judy Bernbaum, Jo Ann D'Agostino, Marsha Gerdes, Casey Hoffman, Noah Cook, Hallam Hurt, Haresh Kirpalani, Sara B. DeMauro*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

6 Scopus citations

Abstract

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% 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). 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.

Original languageEnglish (US)
Pages (from-to)996-1002
Number of pages7
JournalActa Paediatrica, International Journal of Paediatrics
Volume107
Issue number6
DOIs
StatePublished - Jun 1 2018

Keywords

  • Chronic lung disease
  • Prematurity
  • Severe bronchopulmonary dysplasia

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health

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