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Home > RNJ > 2007 > November/December > Life Changes in Individuals Diagnosed with Sleep Apnea While Accommodating to Continuous Positive Airway Pressure (CPAP) Devices

Life Changes in Individuals Diagnosed with Sleep Apnea While Accommodating to Continuous Positive Airway Pressure (CPAP) Devices
Suzanne S. Dickerson, RN DNS Laila Akhu-Zaheya, RN PhD

Continuous positive airway pressure (CPAP) devices are effective in preventing the sequela of obstructive sleep apnea (OSA); however, compliance with the device is problematic. This study’s purpose is to longitudinally discover OSA patients experiences with CPAP. A hermeneutic phenomenological approach was used to obtain narrative stories for interpretive analysis. 20 patients were prescribed CPAP at an urban sleep center. Five themes and one constitutive pattern included (1) trouble using CPAP, (2) needing to persist through initial and recurring frustration, (3) difficulty recognizing subtle improvements, (4) accessing help and problem solving, and (5) becoming part of the routine or abandoning the device. Perseverence through tribulations by developing a positive mind-set was the constitutive pattern. The implications are that rehabilitation nurses should understand the difficulties with CPAP compliance so that they may assist patients with device issues and offer encouragement.

Approximately 40% of adults experience inadequate sleep, which has implications for safety, job productivity and quality of life (National Sleep Foundation, 2002). Individuals’ diagnosed with obstructive sleep apnea (OSA) are often treated with continuous positive airway pressure (CPAP) devices; however, self-reported compliance to CPAP has been reported to be 50%–85% (Likar, Panciera, Erickson, & Rounds, 1997; Russo-Magno, O’Brien, & Rounds, 2001; Sin, Mayers, Man, & Pawluk, 2002). The purpose of this study was to longitudinally examine the experiences of OSA patients adjusting to CPAP treatment from diagnosis through the first 3 months. CPAP treatment prevents the physiological effects of nonrestorative sleep affecting health and quality of life. Understanding of the difficulties in complying with CPAP use provides insight for rehabilitation nurses to facilitate patients with sleep apnea in accommodating to CPAP devices.

Background

Obstructive sleep apnea (OSA) is a condition whereby individuals decrease or stop breathing during sleep due to obstruction of the upper airway (White, Cates, & Wright, 2004). Prevalence of OSA is predominantly in white men and women with a two- threefold greater risk for men, and increases steadily with age until age 65 (Young, Peppard, & Gottlieb, 2002). In addition, persons at greater risk for OSA include those with excess body weight and obesity, alcohol use, smoking, nasal congestion, and estrogen depletion in menopause.

OSA is diagnosed by polysonography whereby the patient is monitored during sleep for apnea and hypoxia episodes. Criteria for rating severity of OSA include over 30 episodes per hour as severe, 15 moderate and 5 mild (Young et al., 2002). Patients with OSA suffer symptoms of sleep deprivation including daytime sleepiness and impaired cognitive function that may influence their safety at work and while driving (Young et al.).

CPAP devices are the gold standard for treatment of OSA and serve as a pneumatic splint to keep the airway open (White et al., 2004). The CPAP device is worn during sleep and includes a face mask that is fitted to the head by elastic head gear (Figure 1). The mask is connected by tubing to a flow generator to maintain the positive airway pressure. Figure 2 shows the equipment. The CPAP is a lifelong treatment that serves to maintain the airway and prevent apnea and hypoxia affording more restorative sleep. Sequela to prolonged OSA include systemic hypertension, right heart failure, cardiac ischemia and arrhythmias as well as depression, memory problems, and excessive daytime sleepiness (White et al., 2004)

Individuals with sleep apnea that are treated with CPAP devices are faced with lifestyle changes that include intrusion of technology into their lives (Dickerson & Kennedy, 2006). Research indicates CPAP is effective in improving daytime function, perceived health status, and quality of life in patients with moderate to severe OSA (Ballester et al., 1999; Engleman, Sascha, Deary, & Douglas, 1997). In a metastudy of 12 clinical trials of CPAP patients with OSA, CPAP significantly improved subjective and objective measure of sleepiness in a diverse range of patients (Patel, White, Malhotra, Stanchina, & Ayas, 2003). Engleman and colleagues (1996) also reported from the patient’s perspective that use of CPAP correlated with better resolution of sleepiness and greater improvement in daytime function and nocturnal symptoms. With these improvements, why is there a problem with continuing use?

In spite of the effectiveness of CPAP in reducing symptoms, studies of patients’ self-reported compliance rates were 50%–85%, especially in the initial 1- to 3-month time period. However, objective studies in which actual registration of time on machines demonstrated overestimation of self-reported use (Likar et al., 1997; Russo-Magno et al., 2001; Sin et al., 2002). However, further study is needed to determine other factors that may improve compliance and to discover what motivates CPAP users to continue use.

Research Question, Objective, and Hypothesis

The overall purpose of this study is to longitudinally discover the experiences of individuals with sleep apnea who use CPAP devices from diagnosis to 3 months, and pilot the usefulness and appropriateness of the Calgary sleep apnea quality of life (SAQOL) measurement tool for future outcome studies. The specific aims were (1) to understand the experiences of individuals with sleep apnea using a CPAP device after diagnosis, at 1 month and 3 months; (2) to understand the experience of accommodating to the imposition of CPAP during sleep; and (3) based on the results of this project, to develop understanding of motivation for patients to maintain CPAP use during the first 3 months.

Methodology

The methodological approach for this study is Heideggerian Hermeneutics, an interpretive phenomenological approach where the researcher examines written or spoken text (language) to disclose the meanings of the experiences (Heidegger, 1927/1962). This approach is useful to discover the practical knowledge of patients using CPAP to understand meaning of experiences in a specific context such as during the first 3 months of use. Heideggerian Hermeneutics claims that humans understand and operate contextually within a set of historical and temporal relationships that are understood through interpretation of language (Heidegger, 1927/1962). By interpretation of the stories of CPAP patients, as researchers, we were able to be involved and understand the patients’ everyday lives and thus have background understandings of the individuals’ practical knowledge of their world. The approach guides the questions asked as well as the interpretative data analysis.

Sample

A purposive sample of individuals were recruited who attended the sleep center for a sleep study and were diagnosed with OSA requiring nasal CPAP treatment. Out of 22 recruited, 20 patients completed the data collection. Data were collected until meaning or understanding of the phenomenon was realized.

Data Collection

The staff at the sleep center informed newly diagnosed OSA patients (requiring nasal CPAP) of the study and invited them to participate. Staff obtained the name and phone number of interested patients. The research staff phoned the patients, explained the study, and set up an interview at a time and place convenient to the participant. In most cases, it was their home.

The initial interview was prior to initiation of CPAP (n = 17) or as near a possible to initiation (n = 3). Subsequent interviews took take place at 1 and 3 months to gather information about the subjects regarding their current experiences and use of CPAP. Each audiorecorded interview was approximately 1 hour. The interviews were transcribed, and the text was used for analysis.

The interview consisted of broad open-ended questions with the purpose of eliciting the individual’s experience in his or her own words. During the initial interview the patients were asked, “Please describe your experience of being diagnosed with sleep apnea.” During the second and third interview they were asked, “Tell us how CPAP use is for you and how your life is different or the same.” They also were asked, “What suggestions do you have for people with sleep apnea?” As they told their stories, the interviewer used probes to clarify meanings such as, “Tell me more about that” or “How did you feel about that.”

The participants described their lives before and after diagnosis and initiation of treatment with CPAP. Compliance to CPAP use was self-report hours used per night. A demographic survey described the participants age, gender, occupation, years education, date diagnosed, device used, and hours per night used. See Table 1 for demographic results. The Calgary sleep apnea quality of life (SAQLI) survey was given at the end of the interview, and the participants were asked to compare it with their own experience for future use. SAQLI was an instrument developed to measure quality of life in people with sleep apnea to describe a discriminative index between people with better and worse quality of life (QOL) and evaluative index to measure with-in subject change following intervention (Flemons, Ontonio, & Reimer, 1995). Most participants verified that the survey was appropriate in questioning their experiences, although those who had no spouse or significant other said questions related to intimate relationships were not appropriate. Symptoms mentioned in the survey were experienced by many of the patients.

Data Analysis

Interviews texts were analyzed by using the seven-stage interpretive phenomenological approach (Diekelmann, Allen, & Tanner, 1989; Diekelmann & Ironside, 1998). The research team included an expert in qualitative analysis and a masters and a doctoral student, both trained in qualitative analysis. Stage 1: Each researcher examined each participant’s series of interview texts (initial diagnosis, 1 and 3 months) as a whole to gain an overall understanding. Stage 2: Each researcher identified possible common themes of the texts with excerpts to support the interpretation with a focus on changes over time. Stage 3: The researchers compared their interpretations for similarities and differences at weekly meetings, reaching further clarification and consensus by returning to the original text. Stage 4: All texts were reread to uncover related themes among all the texts. Stage 5: Researchers described a constitutive pattern that showed the relationship between themes across all texts. Stage 6: Themes were validated by a group of participants from the study. Stage 7: The principal investigator produced the final summary, including verbatim quotes that allow for validation by the reader. The multiple levels of interpretation exposed conflicts and inconsistencies in the analysis and eliminated unsubstantiated meanings. Although there is no single correct interpretation, continuous examination of the whole and the parts of the texts with constant reference to the text ensure that the interpretations are grounded and focused (Diekelmann & Ironside, 1998).

Findings

Initially, 22 patients diagnosed with OSA were recruited, and two withdrew after the first interview. Two of the remaining 20 refused the third interview, stating there were no further changes. The participants comprised 9 men and 11 women. Table 1 summarizes the demographics. Of the 20, four (25%) discontinued use (one man and three women).

Initial Symptoms

In all of the participants’ stories, the worsening of OSA symptoms initiated help seeking from their physicians. The most frequent symptoms were decreased energy to do normal activities, taking frequent naps, and waking up tired.

One participant related a common story:

Well, when I woke up in the morning, I just did not feel rested. I never felt like I had a wonderful night’s sleep. I have always had to take naps … sometimes I would feel worse after taking a nap. I am going to school and I am working, and I am finding myself getting more tired, and it’s getting to the point where I can never catch [up]. And it is like my battery will never be recharged. So I got to the point where I was at the end of my rope. And I said something has to be wrong—I need help.

Other symptoms included loss of memory, not concentrating, falling asleep easily, mood changes such as irritability and not being alert, and falling asleep easily at an inappropriate place or time such as, “not being able to stay awake, falling asleep at meetings, falling asleep while driving.” Many sought help because they feared falling asleep while driving. One of the participants admitted that he had three accidents due to falling asleep while driving. Table 2 summarizes initial symptoms.

Sleep deprivation influenced their ability to function at work and at home while caring for family. They fell asleep throughout the day and at work, and each morning woke up tired. One participant summed up her troubles as, “You are very grouchy or ill-tempered when you are exhausted. Or no ambition to do things, your family suffers, you suffer … your work suffers.” Snoring was also a common complaint of the family of the participants. Participants identified symptoms of decreased energy, excessive fatigue, restless sleep, waking up tired, frequent waking during the night, falling asleep if not stimulated, and difficulty driving or reading.

All of the participants were diagnosed with OSA at a local sleep center and were prescribed CPAP. Five related themes and one constitutive pattern describe the life changes while accommodating to the device.

Theme 1: Trouble Using CPAP

Participants described the troubles they experienced when first learning to use the device and while sleeping with the device. They were already experiencing fatigue and symptoms of sleep deprivation and now had to deal with a CPAP machine. Mechanical difficulties included mechanical noise; mask-related problems including air leakage, discomfort, and marks from the mask; and physical side effects such as runny nose, sore throat, dryness of nose and throat, and headaches. To relieve the dryness symptoms, they were given a humidifier, which caused new problems: “the condensation … it grosses me out because it gets wet inside, and it drips.” And the water collects in the tubes, causing gurgling noises.

One participant commented on the air leakage problem: “It was just [the air] driving me nuts.” Another related, “It just I feel the air coming out [of the mask].”

Another complained that noise from CPAP device annoyed their bed partners, “The noise does bother my wife; even though I am not snoring anymore, it’s kind of like constant hum.” Another related, “I hated it, wow man, it was like a wind tunnel.”

Trying to remedy the situation, the participants encountered new problems, “So, in order to avoid that [noise], I put it on so tight that I have marks on my face, and they don’t go away.” Most participants complained about the marks that were left on their faces from the mask, either redness or facial bruising, because they needed to tighten the mask to decrease the noise caused by air leaks. As one of the participants related, “At first it was leaving a lot of marks and [was] uncomfortable.” Other problems included difficulty breathing with the device, “When I first put it on, I couldn’t breathe. I couldn’t exhale.” Another said, “I wear it, but sometimes I just feel like I’m running out of air.”

An altered sleeping pattern was another effect of the CPAP. The mask forced some patients to sleep on their backs, thus altering their usual side sleeping patterns. One participant related, “I toss and turn … I cannot sleep on my back due to a back ache.” Another acknowledged that a change in sleep position was difficult, “You can switch sides, but I got a thing in my nose and it bothers me.” Still another participant described difficulty sleeping long periods of time:

When I use it [CPAP], I wake up a lot…. There are whistling noises [from the mask], gurgling [from the humidifier] [and] you have to lift up the tube and empty that out and go back to sleep. I go back to sleep but I don’t have long periods of sleep, I would love to have that feeling of energizing, but I don’t have it yet.

As the participants began to use the CPAP, the problems began, and for some, it was not expected. One related, “After my sleep study, I couldn’t wait to get the CPAP because I was so energized that day, I wanted to feel that way again…. I never did feel like that again.” Table 3 summarizes CPAP treatment-related symptoms.

Theme 2: Needing to Persist Through Initial and Recurring Frustration

The first few weeks were difficult because it had not yet become part of their routine. Acceptance of and compliance with the CPAP device was not easy for the participants because of the discomfort associated with using the device, lack of the appropriate information to problem-solve, associated costs of the device, and lack of easily accessible support. One person said, “In the beginning, I had a kind of rough spell getting adjusted, trying different nose pieces; … I am claustrophobic and I was very leery about using something over my face.” The new users needed to use trial-and-error methods to work out the problems, and, as one described, “At first it was leaving a lot of marks and stuff; and [it was] uncomfortable, so I kind of had to play with it, make a few adjustments.” Another related, “I am using it, but … it is just rubbing a hole in the top of my nose.” One of the participants, after initially being excited about using the machine, returned frustrated, saying, “I need a new mask. I cannot use it because it makes so much noise. The whistles don’t happen right away, but when it ramps up and I am half asleep, that’s when it happens.”

For some of the participants, part of this frustration was related to the lack of support and information from the home care companies. They described the initial lack of information about how to use the machine, and complained that the companies seemed to be out to sell products rather than care about their clients’ difficulties. One of the participants was upset with the lack of follow-up care and related,

And they [healthcare companies] brush you off and say come back in 2 months. That’s just what they did. What are you supposed to go by? They are supposed to be the experts. They are the one’s that recommend. They are in control of the medications. They are in control of machine and recommend what you take. I took it and it’s not working, so what are we going to do now?

Another complained,

The woman brought it, she showed me how to put it on, but that was about it. You know, she needed to sit down here with me to see the reaction that I got from it. Well, I mean she is getting paid to come here and bring it.… I am sure they didn’t just tell her to come and drop it off and just put it on my face and leave.

Some individuals tried to contact the company, “I’ve been trying to call those people. That is not easy; I cannot get them on the phone.”

Over time, the CPAP users found additional tasks were required to maintain the machine. One participant found this troublesome, “I hate cleaning it. That is part of the problem.… You have to clean it every day … rinse it, hang it out … so maybe I am just lazy, but it is a pain in the butt.”

Some felt foolish with the device on their faces. Regardless of the frustration they had, many of them persisted to problem-solve and use the device. One participant suggested,

It is hard to get used to the machine at first, getting used to sleeping with a device like that. The next thing to get used to, I guess if you were a single person, it would be a lot easier, but if you are a married person, you are sleeping with a device on your head . If your spouse had one, then you could both look a little foolish because—you do look foolish. No doubt about that.

Theme 3: Difficulty Recognizing Subtle Improvements

Over the first 3 months, the participants sometimes had difficulty recognizing the difference or improvement in their symptoms. Early on in the interviews, the participants felt that the symptoms of sleep deprivation that they experienced as their normal. One participant said, “That was my normal, I was used to being sleepy.”

During the early interviews, participants’ responses were often short answers and unfocused. The researchers noticed a marked difference in their ability to describe their experiences after they had been using the machine for at least a month. Some had vast improvement initially even with their initial sleep study; however, for most, the changes were subtle over time.

Some found the equipment they received at home did not have the same positive effect as the equipment of the original sleep study. One related, “It is something that you have to get use to.… I wanted to keep trying because he had told me it might take a while, and then I did notice gradual changes.” One related that after a month, “it is a little better … hasn’t changed anything dramatically.” Some said, “I don’t feel any difference.”

After 1 month, one participant said,

[My sleep] is still restless, I don’t feel fantastic when I get up and I don’t feel horrible either, so it is kind of in between—not like before I would have fallen asleep in a heartbeat. I can watch TV, read the paper, and I am not going to fall asleep.

Some participants described comorbidities such as pain, asthma, and depression that obscured changes they were experiencing. Other participants thought their symptoms, such as migraines, asthma, depression, pain, and obesity, were related to fatigue and unrelated to the sleep apnea. An unintended effect of the research was when participants were asked to look at the quality of life survey for applicability to their situation. The scale increased participants’ awareness of OSA symptoms, and they were surprised at the signs and symptoms associated with OSA. It also increased their awareness of some of the subtle improvements.

Initially at 1 month, many participants were unable to notice much difference, but their families often gave them feedback about their improvement. One participant said, “They [my family] say I seem to have more energy.” Family members told them they had an improvement in mood, were “less grouchy,” and were more able to problem-solve. One participant related, “Actually, people around here are noticing it [more awake], too, which is good feedback.”

Some participants told of their own experimentation with using and not using CPAP as a method to determine if it made a difference. As one found out, “If I don’t have it on, I am just miserable, if I fall asleep on the couch it is a horrible rest.... I feel worse.” Another said,

I have tested the CPAP in my own way by not using it, just to see what the effects would be, and I do find that if I don’t use it for two or three days, I find that I am taking naps again.… I proved it, and now I can speak very intellectually about this.

Theme 4: Accessing Help and Problem Solving

There was variability in experiences in seeking assistance from the home care companies who provided the CPAP devices. For some participants, the suppliers were not always available to help them problem-solve, especially if the patient worked long hours that did not match the agency hours. One participant needed assistance with the problem of his mouth falling open when sleeping, causing a rush of air out of his mouth. This person had trouble contacting the home care provider and joked that he solved the problem by duct taping his mouth closed. He was later provided a chin strap to help the situation in a safer way. Another participant was disappointed in the home care company:

She came and showed me how to put it on, see the reaction … I just need a little help on it on trying to get what I need to work with.

For others, there was a lack of trust in the companies as a result of a perceived marketing attitude to sell products. One person said,

When I first went to get the machine, unfortunately it’s a salesman talking to you.… So I had to sit and listen to an hourlong sales spiel.... I’m going—okay just tell me how to use the machine.… I didn’t even get a manual. I called a few times, and they had to call you back because they are salespeople; you get lost and overlooked.

Others had good experiences: “Yes they [home care company] are very good about checking if I have any questions or problems.” Another said, “The girl I am dealing with is awesome; if I have an issue with anything, she has been pretty much right on top of it.”

Over time, some managed to learn how to access and work with the suppliers. One said, “I need to sit with the technician and find out why I cannot use it because it makes so much noise.” A list of potential questions for patients to ask home care companies is in Table 4.

Some participants described problems with their health insurance companies. One related, “They never did give me a straight answer.” The insurance companies monitor the devices to the displeasure of some participants, “I have to send it [compliance card] to make sure you use it like a big brother; I don’t like being watched.” Another said, “I am battling the insurance company because they are saying I shouldn’t have one [CPAP].… It is an expensive machine, and I am not sure I can afford it if the insurance doesn’t pay.” Some also had difficulties with their insurance companies not funding needed humidifier devices, which were necessary to relieve the dryness related symptoms from the CPAP.

Eventually, the CPAP users learned to problem-solve; for example, one participant troubled by the gurgling sound in the tube from overhumidification said, “It dawned on me that keeping the CPAP at the level of my head caused it.” She put the CPAP device lower than the bed, and the “problem was solved” by gravity drainage. Others described the support available from their family, some accessed the Internet for information, and one accessed a support group for information and encouragement.

Theme 5: Becoming Part of the Routine or Abandoning the Device

The accommodation of the CPAP device into their lifestyle was a balancing process influenced by their motivations. If the participant noticed positive outcomes from using the device such as relief of fatigue, increased energy, ability to think more clearly, not falling asleep during the day, and feeling less grouchy, and the family gave feedback to support these changes, then the outcome of using the device was perceived as supportive to using CPAP. Table 5 summarizes motivations. In the decision to use (versus not use), there were trade-offs in which negative aspects were accepted as less important than the positive effects. One person said, “I was agitated [while sleeping with CPAP], but I knew when I woke up, I would feel better.” Another said, “There is always a give and take to everything you have to do … and pretty soon it works into your lifestyle.” Negative aspects included machine maintenance, mask discomfort, and not being able to just fall asleep with out the CPAP machine. One decided, “I got benefit immediately [from CPAP]; my [facial] marks were minor.… If I am going someplace special, I will just not wear it that night.” Another related, “It is frustrating at first, but … once it becomes a routine, it’s a part of your normal life.” Another accepted the need to go through the process of getting ready to wear the CPAP each night and said, “Now I tell everyone that going to bed is an event.”

Humor was sometimes used regarding the CPAP, given that the device was not aesthetically appealing for the bed partner. One woman related, “When grandma goes to bed, she’s an alien.” Another said, “You do look ridiculous,” and “my husband saw me, and he laughed.”

Over time, some participants adapted to CPAP use and accepted the CPAP device:

But once you get past getting used to the mask on your face at night, and you know [how to] turn and not pull the tubes, I honestly have to say I don’t notice anymore, I really don’t.

For the participants who abandoned the device, their reasons included difficulty sleeping with the CPAP (especially mask-related problems); lack of recognition of often subtle improvement in their symptoms; blaming fatigue on lifestyle, not on sleep apnea; and poor support from providers to encourage adjustment through issues such as the claustrophobic nature of the mask. One related, “It frightens me … no one came to sit with me to see the reaction… I fear that if the electric goes off, the machine would go off… I am not going to use that mask.” Another said, “I am flunking this thing, I am still tired in the morning, and I am not any less tired than not using it.… I really didn’t have to use it.” One participant was waiting and hoping for a surgical option in the future. These persons did not use the machine for any length of time to be able to notice any of the sometimes subtle changes in spite of information given on the negative consequences of sleep apnea.

Constitutive Pattern: Persevering Through Tribulations by Developing a Positive Mind-Set

The key motivator for these participants was the ability to see improvement in their fatigue and energy. Those who initially had marked improvement of initially severe symptoms had better motivation to persist. Although they recognized the negatives, they valued more the positive outcomes. Receiving positive feedback on their improvement from family and friends also helped the people to persist. One participant related, “I think it depends on the mind-set of the individual … you have to be open to use it, and you now realize that it is going to help you.… You have to realize how they felt before and how you feel after.”

For some, the improvement was subtle and harder to see, yet over time, most of the participants saw some improvement. The process of telling their story and reflecting on their experience may have served to help them recognize their improvements. An unintended consequence of the review of the SAQLI instrument was the realization of the actual symptoms and improvements gained by the participants. This may have served as motivation to continue to use the device. Many also self-experimented with the use and nonuse of the device and compared how they felt after sleeping. When participants recognized the positive outcomes of CPAP use, they were encouraged to accept the negative aspects. A trade-off was made to accept and accommodate to the CPAP to gain the positive outcomes.

Discussion and Implications

The original purpose of the study was to longitudinally discover the experiences of patients initiating the use of CPAP as treatment for sleep apnea. The first two aims, to understand experiences over the first 3 months and understand the experiences of accommodating to the device was explicated in the five themes and pattern. The participants described the difficulties and troubles getting acclimated to the CPAP device. They also described their need to persist through the difficulties.

The third aim of this research was to develop understanding of the motivation for patients to maintain CPAP use during the first 3 months, which were explicated in themes 3 and 4, as well as the overall pattern. The severity OSA sufferers’ symptoms and their subsequent improvement with CPAP influenced the participants to persevere . Recognizing often subtle symptom improvements helped the participants to keep positive about using the device and stick with it through the troubles. When the participants’ stories included difficulty for obtaining properly working and fitted devices, then they had more difficulty persevering. The motivations to persist are summarized in Table 5. This is a support issue that could be attended to by support from rehabilitation nurses.

 

Implications for Rehabilitation Nurses

Support and encouragement with device fit and practical advice for maintenance should be provided by nurses, as well as encouragement to persist through the early troubles. Encouraging empowerment of the patients can help them problem-solve and self-advocate with insurance companies and healthcare supply companies. Other suggestions for rehabilitation nurses are educating patients on consequences of sleep apnea, encouraging self-assessment of symptoms, documenting improvements in diaries or other online assessments, instituting feedback mechanisms to help patients identify subtle improvements and positive aspects of CPAP use, and encouraging family and friends to provide positive feedback to patients. Nurses could also provide patients with a list of questions to ask the home care companies to facilitate and empower patients to problem-solve (see Table 4). Developing a frequently asked questions (FAQ) sheet along with contact information would assist CPAP users in troubleshooting.

Rehabilitation nurses could provide an essential role in motivating CPAP patients. In this study, there was little evidence or perception of any nurses assisting the patients. Rehabilitation nurses with insight from this study could facilitate patient accommodation of the device into their lifestyle. Nurses could encourage patients to persist through the initial CPAP troubles by helping them to see the positive outcomes and decide to make it part of their routine. Patients can develop a positive outlook and mind-set with support, information, and positive feedback. Support groups can also serve to encourage CPAP users to problem-solve and persevere (Dickerson & Kennedy, 2006).

Previous research efforts to improve compliance included group education sessions and intensive support (Hoy, Mennelle, Kingshott, Engleman, & Douglas, 1999; Hui et al., 2000; Likar et al., 1997; Sin et al., 2002). Improvements in CPAP use and reduction in symptoms occurred after nurse-led intensive educational programs. An exception was in the Hui et al. (2000) study, where education and support did not increase compliance but led to greater improvement in quality of life during the study. Sin et al. (2002) found that consistent follow-up and feedback for patients and physicians improved compliance. Russo-Magno et al. (2001) found that compliance was associated with attendance at a support group and resolution of symptoms in older men. Smith et al. (1998) also supported nurses facilitating CPAP patients’ problem solving by encouraging self-management and monitoring. The current study provides more insight into the difficulties in accommodating to CPAP use and offers some suggestions to encourage persistence.

Future research to test a supportive feedback intervention is warranted. A nurse-led intervention study could be designed to implement the feedback and motivation strategies early on during patients’ initial trials with their CPAP. Suggested outcomes to be measured may include the SAQLI scale, compliance with the device, and sleepiness scales. This may improve patient empowerment and subsequent compliance with CPAP devices, which ultimately will prevent the sequela of OSA. In addition, product developers could also design more aesthetically pleasing designs that combine function and comfort.

Acknowledgment

This study was funded by the 2002 Sigma Theta Tau / Rehabilitation Nursing Foundation Grant.

Special thanks to Natalie Passmore, MS RN, and Mary Kennedy, MS RN, for their assistance on the research team, and for the people who shared their experiences with CPAP.

About the Authors

Suzanne S. Dickerson, RN DNS, is an associate professor at the University at Buffalo, State University of New York, School of Nursing. Address correspondence to her at 1033 Kimball Tower, 3435 Main Street, Buffalo, NY 14214 or at sdickers@buffalo.edu

Laila Akhu-Zaheya, RN PhD, is an assistant professor at Jordan University of Science and Technology and was a PhD candidate at the University at Buffalo.

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