Investigating the Experience of Living With Down Syndrome and Obstructive Sleep Apnea Syndrome (Stage 1)
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The primary objective of this study is to identify the perceptions, beliefs, and family-relevant outcomes regarding the treatment of OSAS with PAP in children with DS.
Condition or disease
Down SyndromeObstructive Sleep Apnea
Behavioral: Open-ended semi-structured interviews
This is a multi-center outpatient study to be performed at two clinical sites: Children's Hospital of Philadelphia and Cincinnati Children's Hospital. Forty Caregivers of children with DS and OSAS treated with PAP and their children will be enrolled. The study comprises one 30-minute open-ended semi-structured interview per caregiver. The duration of the interview is approximate. It will last up to 30 minutes as some families may want to include more details.
Semi-structured interviews will explore such key constructs as knowledge/belief about OSAS and PAP therapy, routines and resources that promote or limit PAP use, barriers, self-efficacy, and communication and attitudes about PAP. The interviews will be performed with the parent and that they will be audio-recorded.
Perform qualitative interviews to determine factors that impact PAP acceptability and use in youth with DS and OSAS, and identify family-centered outcomes to inform the development of an intervention to improve adherence to CPAP
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Layout table for eligibility information
Ages Eligible for Study:
6 Years to 17 Years (Child)
Sexes Eligible for Study:
Accepts Healthy Volunteers:
Inclusion Criteria -- Patients
Children with DS and OSAS treated with PAP for at least 6 months
Children aged between 6 and 17.5 years
Inclusion Criteria -- Caregivers
Parent or legal guardian of an eligible patient subject
Must live with the patient subject at least 4 nights of the week
Exclusion Criteria -- Patients
In foster care
Diagnosed with major illness, such as leukemia or severe cyanotic congenital heart disease listed for cardiac transplant as these severe diseases may add confounders