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"It made all the difference": a qualitative study of parental experiences with pediatric obstructive sleep apnea
Sarah M Honaker1, Akila Gopalkrishnan2, Maria Brann3
1Department of Pediatrics, Indiana University School of Medicine, Indianapolis, Indiana.
Insights
Parents shared their experiences navigating the diagnosis of pediatric obstructive sleep apnea (OSA). Findings highlight healthcare system challenges and the need for better parental education on OSA detection.
Area of Science:
- Pediatric Sleep Medicine
- Qualitative Health Research
- Patient Experience
Background:
- Obstructive sleep apnea (OSA) is a common pediatric condition.
- Early detection of pediatric OSA is crucial for effective management.
- Parental experiences significantly influence the diagnostic pathway.
Purpose of the Study:
- To explore parental experiences with the diagnostic process for pediatric obstructive sleep apnea (OSA).
- To identify facilitators and barriers in OSA detection.
- To inform interventions and communication strategies for improved OSA diagnosis.
Main Methods:
- Qualitative study involving semistructured interviews with 30 parents of children (ages 3-14) diagnosed with OSA.
- Thematic analysis of interview data using NVivo 12 software.
- Assessment of parental knowledge regarding OSA.
Main Results:
- Multiple pathways to OSA detection were identified, with parental concerns often initiating referrals.
- Parents expressed strong willingness to pursue necessary diagnostic steps for their children.
- Barriers and facilitators to polysomnography (PSG) completion were noted, and parents sometimes failed to connect disparate symptoms.
Conclusions:
- Parental experiences reveal both strengths and weaknesses in the current healthcare system for pediatric OSA detection.
- There is a need for improved strategies to facilitate timely OSA diagnosis.
- Enhanced health communication is required to provide parents with accurate information about pediatric OSA.
Study Objectives:
To assess parental experience of their child's obstructive sleep apnea (OSA) detection process and inform the development of interventions and health communication strategies to improve OSA detection.
Methods:
Semistructured interviews were conducted with 30 parents of children (ages 3-14) who snored and were referred for an overnight polysomnogram (PSG). Parents (60.0% Black race, 93.3% mothers) described how their child was referred for PSG and their perceptions and feelings throughout the detection process. Parents also completed an OSA knowledge measure. Interview data were analyzed using a descriptive approach and thematic analysis was conducted using the NVivo 12 software system.
Results:
Twenty-one themes were identified across 5 categories (first steps; PSG facilitators and barriers; health information; health care experiences; parent experiences). Respondents experienced multiple pathways to OSA detection, with more than half of referrals initiated by parental concerns (vs. screening efforts). Parents reported a willingness to take any necessary steps to help their child. Both barriers and facilitators to completing a PSG were described. Parents observed both nighttime and daytime symptoms related to OSA in their child but often did not connect the symptoms to each other until later in the process. Participants had varying degrees of OSA knowledge, with a mean knowledge score of 56% correct (range 10%-90% correct).
Conclusions:
Parental experiences highlight aspects of the health care system that are both effective and ineffective in detecting children with OSA. Implications include a need for strategies to promote timely detection and to provide parents with accurate information about pediatric OSA.
Citation:
Honaker SM, Gopalkrishnan A, Brann M, Wiehe S, Clark AA, Chung A. "It made all the difference": a qualitative study of parental experiences ith pediatric obstructive sleep apnea detection. J Clin Sleep Med. 2022;18(8):1921-1931.
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