Parental experience of sleep disordered breathing in infants with cleft palate: comparing parental and clinical priorities

Karen Davies, Yin-Ling Lin, Anne-Marie Glenny, Peter Callery, Iain Bruce

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Abstract

Objective: To identify outcomes relating to Sleep Disordered Breathing (SDB) that are relevant to parents, during the early weeks of caring for infants with cleft palate (CP) and compare these with clinical outcomes identified in a systematic search of research literature.
Design: A qualitative study using telephone/face to face interviews with parents explored their understanding of breathing and respiratory effort in infants with CP.
Setting: Care provided by three specialist cleft centres in the UK with study conducted in parents’ homes.
Participants: Criteria for participation were parents of infants with isolated cleft palate age 12-16 weeks. 31 parents of infants with CP (over 12 weeks) were invited to participate in the interview. Interviews were completed with 27 parents; 4 parents could not be contacted after completing the sleep monitoring.
Results: Parents’ description of infants’ sleep suggests that breathing is not considered as a separate priority from their principal concerns of feeding and sleeping. They observe indicators of infants’ breathing, but these are not perceived as signs of SDB. Parents’ decision to use lateral or supine sleep positioning reflects their response to advice from specialists, observation of their infants’ comfort, ease of breathing and personal experience. Outcomes, identified in published research of SDB, coincide with parents’ concerns but are expressed in medical language and fit into distinct domains of ‘snoring’, ‘sleep’ ‘gas exchange’ and ‘apnoea’.
Conclusions: Parents’ description of sleeping and respiration in infants with CP reflect their everyday experience, offering insight into their understanding, priorities and language used to describe respiration. Understanding parents’ individual priorities and how these are expressed could be fundamental to selecting meaningful outcomes for future studies of airway interventions.
Original languageEnglish
JournalCleft Palate Journal
Early online date17 Apr 2018
DOIs
Publication statusPublished - 2018

Keywords

  • Infants
  • cleft palate
  • Sleep disordered breathing
  • Outcomes

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