The lived experience of positive airway pressure therapy in patients with obstructive sleep apnea across the lifespan: a qualitative study.

STUDY OBJECTIVES: Although treatment of obstructive sleep apnea (OSA) with positive airway pressure (PAP) therapy is effective, adherence is often poor. Understanding the patient perspective is needed to inform adherence-promoting interventions. This qualitative study assessed the experiences, preferences, facilitators, and barriers surrounding PAP therapy for the management of OSA in patients from adolescence to older adulthood. METHODS: Eligible participants ages 19 and older were identified from administrative health care claims; adolescent participants ages 12-18 and their parents/caregivers were identified via electronic health records of a tertiary sleep specialty clinic at a large children's hospital. Forty English-speaking patients and 10 parents of adolescents diagnosed with OSA and prescribed PAP therapy completed semistructured 60-minute telephone interviews conducted by a trained facilitator. Common themes and illustrative quotes were identified. RESULTS: Themes around OSA diagnosis, initiating OSA treatment, learning about OSA/PAP, decision to start PAP, PAP benefits and challenges, and reasons for nonadherence were identified. Participants suggested design and delivery changes to improve PAP devices. Issues unique to adolescents and their parents were discussed. CONCLUSIONS: The unique perspectives of patients regarding PAP therapy should be taken into consideration when developing interventions to increase PAP adherence and improve clinical care. Based on identified themes, opportunities for intervention may exist at all stages of care, from diagnosis to treatment initiation. Involving partners, parents, and other caregivers in PAP therapy may be beneficial for optimizing adherence. CITATION: Simon SL, Stephenson JJ, Haynes K, et al. The lived experience of positive airway pressure therapy in patients with obstructive sleep apnea across the lifespan: a qualitative study. J Clin Sleep Med. 2024;20(3):407-416.

How cancer survivors provide support on cancer-related Internet mailing lists.

BACKGROUND: Internet mailing lists are an important and increasingly common way for cancer survivors to find information and support. Most studies of these mailing lists have investigated lists dedicated to one type of cancer, most often breast cancer. Little is known about whether the lessons learned from experiences with breast cancer lists apply to other cancers. OBJECTIVES: The aim of the study was to compare the structural characteristics of 10 Internet cancer-related mailing lists and identify the processes by which cancer survivors provide support. METHODS: We studied a systematic 9% sample of email messages sent over five months to 10 cancer mailing lists hosted by the Association of Cancer Online Resources (ACOR). Content analyses were used to compare the structural characteristics of the lists, including participation rates and members' identities as survivors or caregivers. We used thematic analyses to examine the types of support that list members provided through their message texts. RESULTS: Content analyses showed that characteristics of list members and subscriber participation rates varied across the lists. Thematic analyses revealed very little "off topic" discussion. Feedback from listowners indicated that they actively modeled appropriate communication on their lists and worked to keep discussions civil and focused. In all lists, members offered support much more frequently than they requested it; survivors were somewhat more likely than caregivers to offer rather than to ask for support. The most common topics in survivors' messages were about treatment information and how to communicate with health care providers. Although expressions of emotional support were less common than informational support, they appeared in all lists. Many messages that contained narratives of illness or treatment did not specifically ask for help but provided emotional support by reassuring listmates that they were not alone in their struggles with cancer. Survivors' explicit expressions of emotional support tended to be messages that encouraged active coping. Such messages also provided senders with opportunities to assume personally empowering "helper" roles that supported self-esteem. CONCLUSIONS: Many cancer survivors use the Internet to seek informational and emotional support. Across 10 lists for different cancers, informational support was the main communication style. Our finding of an emphasis on informational support is in contrast to most prior literature, which has focused on emotional support. We found the most common expressions of support were offers of technical information and explicit advice about how to communicate with health care providers. Topics and proportions of informational and emotional support differed across the lists. Our previous surveys of ACOR subscribers showed that they join the lists primarily to seek information; this qualitative study shows that they can and do find what they seek. They also find opportunities to play rewarding roles as support givers.

Methodologic challenges of e-health research.

In this article, research-based strategies used in a web-based study to assess the impact of participation in cancer-related mailing lists on cancer survivors and caregivers are highlighted. The paper presents alternative methods of measuring response rates in Internet surveys. Response rate estimation, based on American Association for Public Opinion Research guidelines, ranged between 15% and 24.9% for the study. Several strategies were implemented to increase survey participation and reduce item nonresponse. Few participants opted for a telephone survey as an alternative to a web-administered design (mixed-mode administration). Using time-stamp data to diagnose places in the questionnaire where respondents prematurely exited or broke off survey participation, we were able to decrease premature break offs. A lottery was also implemented to increase response rates. The experience of obtaining institutional review board approval for the lottery is also described. Preliminary data indicate slight increases in response rates subsequent to implementing the lottery.