Caregiver Experiences Helping Children with Down Syndrome Use Positive Airway Pressure to Treat Obstructive Sleep Apnea

Details

• Alternative Title:
  Sleep Med
• Personal Author:
  Xanthopoulos, Melissa S. ; Nelson, Maria N. ; Eriksen, Whitney ; Barg, Frances K. ; Byars, Kelly C. ; Ishman, Stacey L. ; Esbensen, Anna J. ; Meinzen-Derr, Jareen ; Heubi, Christine H. ; Gurbani, Neepa S. ; Bradford, Ruth ; Hicks, Suzanna ; Tapia, Ignacio E.
• Description:
  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.
  
  
• Subjects:
  Caregivers Child Continuous Positive Airway Pressure Down Syndrome Humans Patient Compliance Sleep Apnea, Obstructive
• Keywords:
  Adherence Down Syndrome Obstructive Sleep Apnea Syndrome Pediatric Positive Airway Pressure
• Source:
  Sleep Med. 107:179-186
• Pubmed ID:
  37196396
• Pubmed Central ID:
  PMC10330846
• Document Type:
  Journal Article
• Funding:
  R61 HD100934/HD/NICHD NIH HHSUnited States/ ; P50 MH113840/MH/NIMH NIH HHSUnited States/ ; U01 DD001279/DD/NCBDD CDC HHSUnited States/ ; R33 HL151253/HL/NHLBI NIH HHSUnited States/ ; U01 DE029750/DE/NIDCR NIH HHSUnited States/ ; R01 HD099150/HD/NICHD NIH HHSUnited States/ ; UL1 TR001425/TR/NCATS NIH HHSUnited States/ ; P30 MH097488/MH/NIMH NIH HHSUnited States/ ; R21 HD101003/HD/NICHD NIH HHSUnited States/ ; R01 HL147915/HL/NHLBI NIH HHSUnited States/ ; R01 HD093754/HD/NICHD NIH HHSUnited States/ ; K01 HL130719/HL/NHLBI NIH HHSUnited States/ ; R01 HL152454/HL/NHLBI NIH HHSUnited States/ ; K24 AI146137/AI/NIAID NIH HHSUnited States/ ; R61 HL151253/HL/NHLBI NIH HHSUnited States/ ; R01 MH108548/MH/NIMH NIH HHSUnited States/ ; R01 HD093654/HD/NICHD NIH HHSUnited States/
• Volume:
  107
• Collection(s):
  CDC Public Access
• Main Document Checksum:
  urn:sha256:8ba4536bc892b5c95f99aba89262cfd5133ee0910f4525b577baa93bcedd757f
• Download URL:
  https://stacks.cdc.gov/view/cdc/130850/cdc_130850_DS1.pdf
• File Type:
  [PDF - 355.89 KB ]