Caregivers' outcome prioritization for home positive airway pressure in children: a mixed-methods study.

Abstract

Study objectives: To determine caregiver-reported priorities regarding the benefits, challenges, and further insights on home positive airway pressure (PAP) for children.

Methods: Mixed-method study analyzing responses to an online survey by parents/caregivers of children (<18 years) using home PAP for at least 3 months. A semi-structured anonymous survey with multiple-choice and open-ended questions was conducted asking for caregivers PAP outcome priorities and their opinion on what should be research priorities. Descriptive analysis summarized caregivers' and children's demographics, and responses to multiple-choice questions. Thematic analysis was used to synthesize the qualitative data.

Results: Seventy-three caregivers completed the survey, 82% were mothers. Over 90% of them considered improved sleep, rest, daytime energy levels, and breathing during sleep as very important/important benefits of PAP. Children becoming dependent on PAP to sleep was reported as very important/important challenge by 76% of caregivers. Among the research priorities, improvement in breathing during sleep (77%) and reduction in the frequency of respiratory illness (73%) were the preferred PAP benefits. Mask-related issues (72%) and the child becoming dependent on PAP (57%) were considered priority challenges to research. Four themes emerged from open-ended questions: 1) better nights and days, 2) adapting to home PAP, 3) finding the right mask, and 4) the importance of a team approach.

Conclusions: Caregiver's priorities regarding PAP included known respiratory benefits of this therapy, such as improved breathing, but also less reported non-respiratory outcomes, which reflected in benefits for the entire family. Potential challenges of PAP requiring further research should focus on mask-related issues.