Caregiver experiences helping children with Down syndrome use positive airway pressure to treat obstructive sleep apnea

Affiliations

¹ Sleep Center, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. Electronic address: xanthop@chop.edu.
² Mixed Methods Research Lab, Department of Family Medicine and Community Health, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
³ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Behavioral Medicine and Clinical Psychology/Pulmonary Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁴ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pediatric Otolaryngology-Head and Neck Surgery, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA; Department of Otolaryngology-Head and Neck Surgery, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pulmonary and Sleep Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁵ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁶ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁷ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pulmonary and Sleep Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁸ Sleep Center, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
⁹ Division of Pulmonary and Sleep Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
¹⁰ Sleep Center, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.

PMID: 37196396
PMCID: PMC10330846
DOI: 10.1016/j.sleep.2023.04.022

Caregiver experiences helping children with Down syndrome use positive airway pressure to treat obstructive sleep apnea

Melissa S Xanthopoulos et al. Sleep Med. 2023 Jul.

. 2023 Jul:107:179-186.

doi: 10.1016/j.sleep.2023.04.022. Epub 2023 Apr 28.

Authors

Affiliations

¹ Sleep Center, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Child and Adolescent Psychiatry and Behavioral Sciences, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Psychiatry, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. Electronic address: xanthop@chop.edu.
² Mixed Methods Research Lab, Department of Family Medicine and Community Health, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.
³ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Behavioral Medicine and Clinical Psychology/Pulmonary Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁴ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pediatric Otolaryngology-Head and Neck Surgery, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA; Department of Otolaryngology-Head and Neck Surgery, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pulmonary and Sleep Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁵ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Developmental and Behavioral Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁶ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Biostatistics and Epidemiology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁷ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA; Division of Pulmonary and Sleep Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
⁸ Sleep Center, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, USA.
⁹ Division of Pulmonary and Sleep Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
¹⁰ Sleep Center, Division of Pulmonary and Sleep Medicine, Children's Hospital of Philadelphia, Philadelphia, PA, USA; Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.

PMID: 37196396
PMCID: PMC10330846
DOI: 10.1016/j.sleep.2023.04.022

Abstract

Background/objective: While positive airway pressure (PAP) is an efficacious intervention for the treatment of obstructive sleep apnea syndrome (OSAS) in children with Down syndrome (DS), implementation and consistent use can be difficult. Caregiver perspectives and experiences using PAP are described with the aim of informing clinical practice.

Methods: Qualitative semi-structured phone interviews were conducted with 40 caregivers (i.e., mothers) of children with DS and OSAS treated with PAP for at least 6 months. Content analysis was used to identify themes associated with adherence and non-adherence.

Results: Respondents indicated variability in caregiver experience with the adoption of PAP and observed benefits of PAP. Varied experiences were attributed to several themes including accessing supplies, interactions with the medical team and equipment company, and patients' unique needs and behaviors, including the child's willingness and ability to adapt to PAP, sensory sensitivities, keeping the mask on all night, and differences in daytime behavior. Many families reported that desensitization with a reward system and trust within the caregiver-patient relationship were helpful. Caregiver suggestions for improving PAP adherence for families of children with DS included improving communication with the medical team and medical equipment company, emphasizing patience, using visual supports, and social support and education for extended family.

Conclusions: Although family experiences varied, several actionable strategies by both the medical team and families emerged for improving the experience of and adherence to PAP in children with DS.

Trial registration: ClinicalTrials.gov NCT04124471.

Keywords: Adherence; Down syndrome; Obstructive sleep apnea syndrome; Pediatric; Positive airway pressure.

PubMed Disclaimer

Conflict of interest statement

Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

References

1. Presson AP, Partyka G, Jensen KM, et al. Current estimate of Down Syndrome population prevalence in the United States. J Pediatr. Oct 2013;163(4):1163–8. doi:10.1016/j.jpeds.2013.06.013 - DOI - PMC - PubMed
1. Mai CT, Kucik JE, Isenburg J, et al. Selected birth defects data from population-based birth defects surveillance programs in the United States, 2006 to 2010: featuring trisomy conditions. Birth Defects Res A Clin Mol Teratol. Nov 2013;97(11):709–25. doi:10.1002/bdra.23198 - DOI - PMC - PubMed
1. de Graaf G, Buckley F, Skotko BG. Estimates of the live births, natural losses, and elective terminations with Down syndrome in the United States. Am J Med Genet A. Apr 2015;167A(4):756–67. doi:10.1002/ajmg.a.37001 - DOI - PubMed
1. Esbensen AJ, MacLean W. Down syndrome. In: Wehmeyer ML, Brown I, Percey M, Shogren KA, Fung WLA, eds. A Comprehensive Guide to Intellectual and Developmental Disabilities. Second Ed ed. Brookes; 2017:195–208:chap 14.
1. Stein DS. Supporting positive behavior in children and teens with Down syndrome. Woodbine House; 2016.

Publication types

Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Caregiver experiences helping children with Down syndrome use positive airway pressure to treat obstructive sleep apnea

Affiliations

Caregiver experiences helping children with Down syndrome use positive airway pressure to treat obstructive sleep apnea

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Associated data

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Research Materials