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

被引：4

作者：

Xanthopoulos, Melissa S. ^{[1
,2
,3
,13
]}

Nelson, Maria N. ^{[4
]}

Eriksen, Whitney ^{[4
]}

Barg, Frances K. ^{[4
]}

Byars, Kelly C. ^{[5
,6
]}

Ishman, Stacey L. ^{[5
,7
,8
,9
]}

Esbensen, Anna J. ^{[5
,10
]}

Meinzen-Derr, Jareen ^{[5
,11
]}

Heubi, Christine H. ^{[5
,7
,8
,9
]}

Gurbani, Neepa S. ^{[5
,9
]}

Bradford, Ruth ^{[1
]}

Hicks, Suzanna ^{[9
]}

Tapia, Ignacio E. ^{[1
,12
]}

机构：

[1] Childrens Hosp Philadelphia, Sleep Ctr, Div Pulm & Sleep Med, Philadelphia, PA 19104 USA

[2] Childrens Hosp Philadelphia, Dept Child & Adolescent Psychiat & Behav Sci, Philadelphia, PA 19104 USA

[3] Univ Penn, Perelman Sch Med, Dept Psychiat, Philadelphia, PA USA

[4] Univ Penn, Perelman Sch Med, Dept Family Med & Community Hlth, Mixed Methods Res Lab, Philadelphia, PA USA

[5] Univ Cincinnati, Dept Pediat, Coll Med, Cincinnati, OH USA

[6] Cincinnati Childrens Hosp Med Ctr, Div Behav Med & Clin Psychol Pulm Med, Cincinnati, OH USA

[7] Cincinnati Childrens Hosp Med Ctr, Div Pediat Otolaryngol Head & Neck Surg, Cincinnati, OH USA

[8] Univ Cincinnati, Dept Otolaryngol Head & Neck Surg, Coll Med, Cincinnati, OH USA

[9] Cincinnati Childrens Hosp Med Ctr, Div Pulm & Sleep Med, Cincinnati, OH USA

[10] Cincinnati Childrens Hosp Med Ctr, Div Dev & Behav Pediat, Cincinnati, OH USA

[11] Cincinnati Childrens Hosp Med Ctr, Div Biostat & Epidemiol, Cincinnati, OH USA

[12] Univ Penn, Perelman Sch Med, Dept Pediat, Philadelphia, PA USA

[13] Childrens Hosp Philadelphia, Hub Clin Collaborat, Off 14542 3500 Civ Ctr Blvd, Philadelphia, PA 19104 USA

来源：

SLEEP MEDICINE | 2023年 / 107卷

基金：

美国国家卫生研究院;

关键词：

Down syndrome; Pediatric; Obstructive sleep apnea syndrome; Positive airway pressure; Adherence; ADHERENCE; THERAPY; CPAP; PREVALENCE; COGNITION; SUPPORT; PATIENT; TRIAL;

D O I：

10.1016/j.sleep.2023.04.022

中图分类号：

R74 [神经病学与精神病学];

学科分类号：

摘要：

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.(c) 2023 Elsevier B.V. All rights reserved.

引用

页码：179 / 186

页数：8

共 57 条

[1] A Tailored Motivational Messages Library for a Mobile Health Sleep Behavior Change Support System to Promote Continuous Positive Airway Pressure Use Among Patients With Obstructive Sleep Apnea: Development, Content Validation, and Testing [J].