%0 Journal Article
%T Parental Experience of Sleep
%A Anne-Marie Glenny
%A Iain A. Bruce
%A Karen Davies
%A Peter Callery
%A Yin-Ling Lin
%J The Cleft Palate
%@ 1545-1569
%D 2019
%R 10.1177/1055665618770196
%X 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. A qualitative study using telephone/face-to-face interviews with parents explored their understanding of breathing and respiratory effort in infants with CP. Care provided by 3 specialist cleft centers in the United Kingdom, with study conducted in parents¡¯ homes. Criteria for participation were parents of infants with isolated CP aged 12 to 16 weeks. Thirty-one 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. 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 ¡°apnea.¡± 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
%K infants
%K cleft palate
%K sleep-disordered breathing
%K outcomes
%U https://journals.sagepub.com/doi/full/10.1177/1055665618770196