Core Outcome Measures in Effectiveness Trials

Parental Experience of Sleep-Disordered Breathing in Infants With Cleft Palate: Comparing Parental and Clinical Priorities

General Information

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 3 specialist cleft centers in the United Kingdom, with study conducted in parents' homes.

PARTICIPANTS:
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.

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 "apnea."

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.

Authors:
Karen Davies, PhD
Yin-Ling Lin, PhD
Anne-Marie Glenny, PhD
Peter Callery, BA (Hons), RN, MSc, PhD
Iain A. Bruce, MD, FRCS (ORL-HNS)

Publication

Journal:
The Cleft Palate-Craniofacial Journal
Volume:
Issue:
Pages:
-
Year:
2018
DOI:
Further Study Information

Date:
Not stated
Funding source(s):
National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Ref- erence Number PB-PG-0213-30058)

Health Area

Disease Category
Child health
Ear, nose, & throat

Disease Name
Cleft palate
Obstructive sleep disordered breathing

Target Population

Age Range
0 - 1

Sex
Either


Nature / type of Intervention
N/A

Method(s)

Interview
Systematic review

Stakeholders Involved

Consumers (caregivers)

Study Type

Patient perspectives
Systematic review of outcomes measured in trials

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