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CPAP Devices: Encouraging Patients with Sleep Apnea
Continuous positive airway pressure devices (CPAP) used at night prevent apnea, hypoxia, and sleep disturbance. Although CPAP is more effective than placebo in improving sleepiness and quality of life measures in people with obstructive sleep apnea, patients often prefer a less-effective oral appliance. This article examines help-seeking experiences in support groups of individuals with sleep apnea who use CPAP devices. To understand patients’ experiences and difficulties using CPAP, an urban medical center and a rural hospital shared data collected from 17 individuals with sleep apnea who use CPAP for treatment and attend a support group. Four related themes emerged including (a) becoming motivated to persist with help from the group, (b) accommodating to the device, (c) listening and telling stories to gain practical knowledge, and (d) implementing a support group as a caring community. Healthcare providers could recommend support groups on CPAP use while nurses guide discussion, provide technical information, and promote empowerment.
Obstructive sleep apnea (OSA) with daytime impairment occurs in 1 in 20 adults and asymptomatic OSA occurs in 1 in 5 adults (Young, Peppard, & Gottlieb, 2002). Inadequate sleep has implications for safety, job productivity, and quality of life (QOL), as well as development of hypertension and cardiovascular morbidity. Individuals diagnosed with sleep apnea are often treated with continuous positive airway pressure (CPAP) devices that are used at night to prevent apnea, hypoxia, and sleep disturbance (Likar, Panciera, Erickson, & Rounds, 1997; White, Cates, & Wright, 2004). Although CPAP is more effective than placebo in improving sleepiness and QOL measures in people with OSA, patients prefer a less-effective oral appliance to CPAP, which suggests that CPAP is not the ideal treatment for patients (Young et al., 2002).
Self-reported compliance to CPAP has been reported to be 50%–85% (Likar et al., 1997) and measured compliance rates have been reported to be 60%–70% (Verse, Pirsig, Stuck, Hormann, & Maurer, 2003). Therefore, supporting individuals with sleep apnea who use CPAP devices is an ongoing concern for healthcare providers. Support groups have been initiated to assist coping but have not been studied from the participant’s perspective. This study examines the shared support-group experiences of individuals with sleep apnea who use CPAP devices.
Review of the Literature
More than 40 million Americans suffer from inadequate sleep or lack of nonrestorative sleep that can interfere with daily activities (Flemons & Tsai, 1997). Men have a 2–3-fold greater risk than women, and prevalence appears to increase steadily with age in midlife, leveling off at age 65 (Young et al., 2002). The adult population (i.e., 2%–4%) that is affected by sleep-related breathing disorders experience snoring, mild obstructive sleep hypopnea, and severe obstructive sleep apnea that lead to cessation of respiration and SaO(2) desaturation (Ferguson & Fleetham, 1995).
Mechanisms and Management of Obstructive Sleep Apnea
OSA is defined as periodic decrease or cessation of breathing due to occlusion or narrowing of the upper airway during sleep (White et al., 2004). Clinicians rate OSA severity by the number of obstructive apnea/hypopnic episodes per hour of sleep or the Apnea-Hypopnea Index (AHI), 5/hr = mild, 15/hr = moderate, and 30/hr = severe (Young et al., 2002). OSA interrupts deep restorative sleep that leads to morning headaches and daytime sleepiness (National Institutes of Health, 1995). Daytime sleepiness and impaired cognitive function may contribute to motor-vehicle and job-related accidents (Young et al.).
The goal standard for treatment of OSA involves using CPAP devices that act as a pneumatic splint to keep the airway open (Verse et al., 2003; White et al., 2004). CPAP consists of a flow generator that is attached to tubing and a tight-fitting mask held in place by elastic headgear. By maintaining the airway, hypoxia and apnea are relieved and the patient has more restorative sleep and less sleep fragmentation. This is viewed as a life-long treatment that emphasizes the importance of patient compliance.
In a systematic review of CPAP effectiveness compared with placebo, CPAP had significant improvements in subjective and objective measures of sleepiness, oxygenation, and positive effects on QOL, health status, and mental health (White et al., 2004). Research indicates that CPAP use is effective in improving daytime function, perceived health status, and QOL in patients with moderate to severe OSA (Ballester et al., 1999; Engleman, Sascha, Deary, & Douglas, 1997; White, et al., 2004). Use of CPAP correlated with better resolution of sleepiness and greater improvement in daytime function, nocturnal symptoms, and decreased incidence of traffic accidents (Engleman et al., 1996).
OSA treatment includes behavioral approaches (weight loss, smoking cessation, and alcohol reduction), as well as surgical removal of anatomical abnormalities and oral appliances. Surgical modifications have been shown to be effective in less than 50% of patients, mostly those with less-severe sleep apnea (Sher, Schectman, & Piccirillo, 1996) and are still considered experimental (White et. al., 2004). Oral appliances or mandibular- advancement devices are used to bring forward the jaw to advance the base of the tongue, thereby increasing the diameter of the upper airway—a common site of occlusion (Lim, Lasserson, Fleetham, & Wright, 2005). Oral devices are effective in 50%–70% of patients with a 50% compliance rate yet how to predict success of the devices in particular patients is not known (Verse et al., 2003). In evidence-based reviews CPAP is still more effective than oral appliances (Lim et al., 2005; White et al., 2004). These newer management approaches are being studied with varying results indicating the need for careful evaluation and long-term follow-up of each individual’s situation (Sonnad, Moyer, Patel, Helman, Garetz, & Chervin, 2003).
Health Effects of OSA
Long-term effects of OSA have been documented. Nieto et al. (2000) reported hypertension rates between 43% to 67% in individuals with high AHI scores. There is also some evidence of a hypercoaguability state in OSA increasing the prevalence of vascular disease (von Kanel & Dimsdale, 2003). Ferguson and Fleetham (1995) identified multiple clinical consequences of OSA including systemic hypertension, pulmonary hypertension, and right-heart failure. In addition, OSA can contribute to decreased cardiac function, ischemic disease, cardiac arrhythmias, secondary polycythemia, and neurological effects (e.g. as excessive daytime sleepiness). Psychological effects include decrease in cognitive functioning, irritability, depression, sexual dysfunction and learning and memory problems that affect interpersonal relationships at work and home. Snoring and sleep apnea were highly associated with excessive daytime sleepiness and subjective work performance problems such as absenteeism, difficulties concentrating, potential for nonintentional injuries, and increased risk of traffic accidents (Ulfberg, Carter, Talback, & Edling, 1996; Wright, Johns, Watt, Melville, & Sheldon, 1997).
In spite of the effectiveness of CPAP in reducing symptoms, studies of patients’ self- reported compliance rates were 50%–85%, especially in the initial 1–3 month period. However, objective studies of compliance by actual registration of time on machines demonstrated an overestimation of self-reported use (Likar et al., 1997). Efforts to improve compliance included group-education sessions and intensive support (Hoy, Mennelle, Kingshott, Engleman, & Douglas, 1999; Hui et al., 2000; Likar et al.).
Likar et. al. (1997) studied attendance at a group clinic designed to encourage patient compliance that led to increased measurable compliance (measured by use/5 hrs per night). The pulmonary nurse instructed patients regarding diagnosis, machine use, and cleaning. Then the nurse adjusted the CPAP units and masks before the patients went home. Patients were also encouraged to contact the nurse or home-care vendors with questions. Subsequently, the 2-hr clinics were held every 6 months and included nurse assessment of symptoms, initiation of treatment plan, and resolution of equipment problems. The patients were encouraged to ask questions and compare experiences, which led to an atmosphere of encouragement and support. All participants increased the amount of CPAP usage hours per night.
Hoy and colleagues (1999) compared an intensive support group with a standard support group. The standard support included teaching about needs and benefits of CPAP, acclimation to the device, and set-up with telephone support to identify and resolve problems. The intensive support included additional home visits to encourage partner involvement. This study showed that patients in the intensive group were empowered and were more apt to comply. Self-motivated patients who had partner involvement and were proactive in seeking solutions to problems showed better compliance.
The Hui et al. (2000) study compared a basic care group with an augmented care group and found no differences in compliance between groups except the augmented group had a greater improvement in QOL during the study. In this study, the participants had an initial teaching program by the nurses and a trial CPAP of 30 min to acclimatize the patients to their unit. This was followed by frequent follow-ups. The augmented group received additional education and more frequent follow-ups to sort out technological problems and encourage use. Both groups had a high level of compliance (70%) and both programs had greater support than most typical sleep centers’ support.
In another study of CPAP compliance in older male patients, of the 64% who were compliant, 95% attended the CPAP patient education and support group (Russo-Magno, O’Brien, Panciera, & Rounds, 2001). In this study, the patients were encouraged to attend a support group similar to the group studied in the Likar et al. study. It was noted that patients who had resolution of initial symptoms were more compliant.
QOL, including physical, emotional, and social health, is impaired by OSA; however, it is improved with CPAP treatment (D’Ambrosio, Bowman, & Mohsenin, 1999). Therefore, there is a need to encourage individuals with OSA to use CPAP devices. Expert nurses may facilitate the learning needs of CPAP patients and family members by teaching machine management and by practicing illness severity monitoring and by recognizing problems, such as depressive symptoms, oxygen deficits, and cardiovascular symptoms (Smith et al., 1998). Support-group settings offer the opportunity for nurses to provide for the educational needs of patients as well as facilitate sharing patients’ experiences. There are no studies that examine support-group experiences from a phenomenological interpretive perspective of CPAP users. This current study proposed to examine support-group experiences of individuals with sleep apnea who use CPAP devices. The goal was to determine the shared meanings of seeking help by attending a CPAP support group and to describe difficulties the group members encounter while accommodating CPAP treatment.
The support groups were held at two institutions, a general hospital in an urban area and a rural hospital. The general hospital had a sleep center where sleep studies were conducted and sleep apnea was diagnosed. The urban support group was started by a clinical nurse specialist (CNS) in May 2001 to offer education and guidance to meet the needs of individuals with sleep apnea who use CPAP. The group was marketed by ads in local newspapers and television, community billboards, personal invitations, brochures and word of mouth. The group was held monthly at the hospital, and met for 2 hours. The CNS facilitator began the meeting with an educational lecture provided by specialists in sleep apnea, physical therapy, pharmacology, respiratory therapy, and representatives of the sleep center who brought new products for evaluation. The second hour included patient sharing where the facilitator encouraged introductions of attendees, when they had been diagnosed, and how long they had been using CPAP. Open discussion and sharing followed questions and answers to facilitate problem solving. On average, 6 to 12 individuals and supporters attended the meetings.
At the rural site, the group was newly formed by two patients, one of whom was an RN. The nurse leader (also a CPAP user) recognized the need for information and support and approached a rural hospital administrator for sponsorship and access to a meeting room. This group met monthly to discuss issues regarding using the CPAP device. Invited speakers gave up-to-date information on OSA and CPAP topics. This open group was not associated with a particular sleep center.
Both support groups promoted educational exchange to support adherence (compliance) and helped with lifestyle changes (Zrebiec 2003). Support-group elements included a common bond of shared problems and needs, sharing with others’ experiences to provide models for others to consider, learning from others’ experiences, and expressing emotion (Zrebiec). The leader initiated the group process, clarifying, elaborating, and summarizing information (Napier & Gershenfeld, 1985). In addition, nurse leaders provided emotional support to assist patients in crisis and helped them develop new ways to cope (Napier & Gershenfeld). The urban support group had the advantage of a CNS leader to encourage patient sharing to make patients feel accepted while empowering patients to self-advocate. The CNS also provided technical information, corrected misconceptions after group members discussions, encouraged group cohesion, and facilitated referrals for patient problems. The rural group was a self-help format (Napier & Gershenfeld), yet the nurse leader served as a resource person.
Membership in the support groups was voluntary. The functions of the groups were to provide support, informational teaching, and empowerment (Townsend, 2000).
Research Design and Methodology
The methodology for this study was Heideggerian hermeneutics (Hiedegger, 1927/1962), a phenomenological approach whereby researchers uncover the common meanings of individuals’ experiences through analysis of semi-structured interviews. Data were collected during a 12-month period. The researchers described the study to the participants after support-group meetings and invited them to sign up for an interview. They obtained institutional review board approval and individual consent prior to the interview. A semi-structured interview was used in which open-ended questions allowed participants to describe what was most important to them. They were invited to tell a story of when the support group helped. Then they were prompted to expand on elements of their stories. Each interview lasted approximately 45 minutes to 1 hr and was audiotaped and transcribed. The research team analyzed the final edited transcripts.
Data were analyzed according to the 7-stage hermeneutical process described below (Diekelmann, Allen, & Tanner, 1989; Diekelmann & Ironsides, 1998). The research team consisted of the principal investigator and three researchers with masters level preparation in qualitative research procedures. Stage one: Each interview transcript was read as a whole and each researcher wrote an interpretive summary. Stage two: Themes were identified with excerpts from the text. Stage three: Themes were discussed for similarities and differences at weekly meetings. Further clarification of interpretations were reached by returning to the original text of the interview. Stage four: The researchers reread all text to link themes across texts. Group consensus on themes common to all interviews was reached during further meetings. These common themes were called relational themes. Stage five: The researchers then identified and described a constitutive pattern that showed the relationship between relational themes across all texts. Stage six: Results were presented to a participant support group for discussion and validation. Stage seven: The principal investigator produced a final summary report that was supported by verbatim quotes.
Of the 17 informants, 12 were male and 5 were female. The average age was 58.4 (SD = 11.13) with a range from 40–73 years. The average years of education was 15.32 (SD = 2.5). The informants had used CPAP an average of 2.5 years (SD = 2.3) with a range from 1 month to 7 years with the average usage of 7.2 hours per night (SD = 1.6) range of 3–11 hrs. Twelve informants attended the urban group and five attended the rural. Time attending the support group was from 1 month to 2.5 years (average 1 year). Urban and rural support group demographic comparisons are shown in Table 1. The rural group was newly established and had less veteran CPAP users, yet the stories about sharing experiences (self-help) were similar. The following four relational themes and one constitutive pattern have been identified and are summarized in Figure 1. Although the individual themes help in understanding the experience of a CPAP support group, in actuality the themes are interwoven in the actual encounter.
Motivation to persist through initial and recurring frustration with help from the support group was the first theme. Informants told stories of dealing with disruptive symptoms of sleep apnea including frightening experiences such as falling asleep while driving. They also told of the “constant fatigue,” “feeling the need to sleep,” and “awakening exhausted in the morning.” These symptoms triggered the need for seeking a diagnosis by polysomnography. With the hope for a “cure” by using the CPAP, these informants told of the difficulty of adapting to the CPAP device. These difficulties drove informants to seek help from the support group. This theme includes stories of the frustration and imposition of the device as well as the difficulty in becoming motivated to persist with using the CPAP device.
Many of the frustrations voiced during the interviews included discomfort with wearing the device. It was “really uncomfortable” and “constrictive.” The mask and machine gave them feelings of “suffocating or drowning.” One person summarized:
This is absurd, sleeping with this gear on my head, it is so unnatural.…You have all this equipment, you have to take care of it, clean it, wear it.…It’s a nuisance. I have to plug it in, fill it, and make sure it is clean. Sometimes you just want to go and jump into bed…you just can’t do it. You’ll be up in 15 minutes because you can’t breathe.
Other frustrations included minimal initial education and training, ill-fitting masks, and the struggle to stay motivated and persist in wearing the mask.
Yet some informants felt a profound change. One said, “I felt immediately better; I haven’t felt this good in years. It was like night and day; it saved my life.” Another related, “It felt like I had slept for a week, my energy improved, and each day got better.”
Others informants’ changes were subtler. “My sleep is more restful” and “I have more spurts of energy, and I am not nodding off during the day.” Most informants agreed that they felt somewhat better after beginning to use the CPAP device. One man related that he had a decrease in blood glucose readings and an increase in energy. He also hoped to decrease his stroke risk and increase his sexual function. In spite of these improvements, the informants related the struggle with using the CPAP device.
The informants’ stories often depicted this struggle to persist despite lifestyle changes, such as “not being able to sleep without it” or “not able to just go to sleep” and “not hearing the rustling of the trees on a nice summer night because the pumping cuts that out.” Another related that, “I was tired of being tired.… Just to keep your life in some kind of order because without it there is no order, no rhythm. I can’t do it. I am exhausted today. CPAP is a great thing, however not real comfortable. It is a trade off.”
The support group helped CPAP users problem solve and gain hope and perspective. They also gained knowledge of the physical effects of sleep apnea. They wanted to avoid strokes and other bodily harm. As one related, “To keep myself healthy I need to follow the rules.” It was a personal decision to persist. As another individual said, “Some say they can’t stand this. I hate this, and some say, well this is what I gotta do and do it.… Once again you choose your attitude.” Another said, “The biggest thing is to stay with it. The benefits outweigh [the negatives].”
Experts relate accommodating to the device. Informants that had been using CPAP for a longer time learned how to accommodate the device into their lifestyle. The word accommodation was used instead of compliance or adherence because it implied the give and take required to integrate CPAP use into their lives and to become motivated to persist throughout the adjustment period. They became motivated to give up being able to just go to sleep, hearing the night sounds, and for some, sleeping with their partners. The expert CPAP user had experience with ongoing problem solving. For example, they persisted through problems with the mask fitting and machine maintenance. Users learned to accommodate using CPAP. Their motivations for attending the group differed from the newer users as they wanted to help others and gain information about new products. They also used techniques such as changing sleeping position to accommodate the tubing, as one person related:
I have a peculiar nasal structure that if I turn my head slightly I get this swishing sound of the air escaping, so I trained myself to sleep on my back and hold the hose with my left hand so it doesn’t move.
Informants described problem solving and modifications needed to make it work, e.g., obtaining chin guards to keep the mouth from opening and providing escape of air, or emitting loud air noises. One individual summarized, “You learn to get used to the masks, the straps, the whistles, and the air blowing in your eyes.”
The experts also knew what do with machine maintenance, “You have this hardware and you have to go through this ritual: getting hooked up, getting your nose cleared out, filling the machine, and remembering to clean it.” Experts also relayed their experience and advice regarding traveling with the CPAP device e.g., concern about differing electrical voltages in other countries, boarding an airplane, and sleeping while traveling.
One expert related his concern for lack of follow-up by the home healthcare companies. “I really wish the reimbursement system was set up so that it pays for follow-up.” The experts learned to judge when they needed a new evaluation for CPAP changes. For example, one informant described how his symptoms recurred. “My memory was starting to slide back, so I called the office to see the doctor.” Another person suggested to others, “Persevere, you’ve got to stay with it, if the mask isn’t right, change it.” This means taking ownership of the problem and realizing the need to try different masks to see what will work best. Some told how insurance companies had refused to pay for heated humidifiers and other equipment. One informant argued with his insurance company, “You could be spending $50 a month on my blood pressure medicine or $150 a year on my CPAP machine.”
Experts also learned that proper sleep hygiene promotes better sleep. They suggested bedtime rituals, avoiding watching television, and learning that “monotonous tasks help put you to sleep.” They also discussed knowledge of their own circadian rhythms when they experienced time changes or traveled in different time zones. One individual suggested using over-the-counter Melatonin supplements to help readjust body rhythm.
These experts learned to become their own healthcare advocates. They encouraged others, “Don’t be afraid to call and make complaints.” Another said, “For a long time doctors wanted to keep control over the care…that has changed, technology is different, self-monitoring is easier to do.” Support group users related, “You can’t give up… too many give up real quick. If you’ve got a problem [OSA], I’ve seen the results of tackling my problem and how it has helped me, and they can do it, too.”
Listening and telling stories to gain practical knowledge was the focus of theme three. The informants said that listening to others’ stories helped with continuing difficulties by providing ideas and practical advice. Many had little instruction from the homecare companies on machine maintenance. One admitted he felt like he “fell through the cracks” of the healthcare providers and had many unmet needs.
Others told stories of initial OSA symptoms to encourage others to keep trying and to realize that the CPAP device was something they needed to wear. One informant related this story. “One woman hit 3 cars, she fell asleep [while driving]. It was a real wake-up call because everyone is in denial; no one has anything wrong with them.” Others told of “blacking out during the day in the middle of a conversation” or “feeling like losing my memory” or “losing a job because of it.”
They shared experiences so as not to feel like they were the only one with problems, as one woman humorously told of her difficulties:
It [CPAP device] is not attractive, it is not natural, and you have all these straps on your head.… Now picture me. I’ve never worn a hat in my life, now I have this hat on my head. I am sweating. I have a strap that has to be on your face pretty tight and you wake up with marks on your face, or if it’s too loose it slips off your nose and air is blowing everywhere else and you wake up from the noise. It’s very uncomfortable.…When I first started, automatically your mouth would drop open and you have air going through your mouth—up your nose and out your mouth. They give you a chinstrap, so now you have another strap. It’s hysterical.
By sharing stories, group members gained practical knowledge for understanding how to maintain a healthy life with CPAP. This information facilitated accommodation to the device and necessary lifestyle changes. One man liked to tell this story to encourage others to continue machine maintenance, especially to keep the filter clean.
We were out of town; the only motel that we could get was a smoking room. I had just cleaned my machine. The next day I checked my filter that is usually pure white. This thing was black, just from one night. That is how much it filters, how much it takes out of the air. You relate a story like that and people realize that this [machine maintenance] is important.
Support groups are communities that provide information and encouragement to persevere. One man said, “It’s a pep talk. After the first meeting I went right home, put the machine on, and had a good night’s sleep.” Another described the group as a “gathering of common folks with common experiences and a very uncommon resolve.”
You know other people are experiencing this and it’s not just you. You get questions answered that you don’t want to ask. What’s going to happen if I’m in a relationship, all hooked up to these wires and tubes.…What is it like to be in bed with someone with this on?
In the group, members realized the importance of the equipment. They talked about new developments and products that might solve their everyday problems with poor-fitting masks. As one said, “You’ve got to be able to change equipment.” Another said, “Try different things, keep asking, there are other options. That’s why the support group [is valuable] because everyone has tried something different, and they can talk about it.” The members also gain an awareness that some things do go wrong. One related, “You realize that there are some things that go wrong and people get through them and manage to work through it.”
The members gained hope by seeing people who had survived for years. As one informant said, “You work through it. It’s not the end of the world, so it helped a lot being with people who’ve been on it a long time.” Veteran members gained by caring for others through sharing their experiences.
The informants were from two different groups—urban and rural. Their shared experiences were similar except there were fewer experts in the rural group and they had less input on newer products. They both valued the community atmosphere to share stories and learn from each other.
A few of the informants had access to the Internet community to gather information that was similar to support-group discussions. One explained, “I had gone on the Internet, seen pictures of a CPAP machine, went to the message boards and learned an awful lot from just reading the message boards.” This informant also related that the Internet was more available and had similar information to the support group. The availability of the Internet would have helped another who did not “like to venture downtown” for the support group.
Others voiced that the support group helped them realize there were others with the same illness, difficulties, and questions. “It makes you realize that you’re not the only one. Other people’s problems are the same as mine.” Expert device users told them, “Don’t feel that it’s your fault. Get it straightened out.”
Only a few negatives were noted. One person had a negative attitude and was in denial. In another instance, the discussion was not properly moderated. As one informant said, “This one guy seemed like he had all the answers to everything. It would be nice to hear other people talk; he monopolized the discussion.”
Constitutive Pattern: Empowering Experts with Information and Support
The themes of each interview revealed a constitutive pattern regarding the need of CPAP users to have adequate information and support. This was important with regard to their diagnosis, their relationships with those involved in their care, their usage of CPAP equipment, and ongoing advances in OSA treatment. Having access to information assisted the support group members to make decisions, overcome barriers to accommodating the device into their lives, and avail themselves of all means to utilize CPAP to maintain a stable, healthful state. The information and support allowed informants to become self-advocates and learn to persevere, which assisted in their problem solving with the devices and insurance companies. They obtained information about everyday problems by hearing others’ stories. This communication between members armed them with knowledge to make informed choices and the practical means to face the barriers they encounter as OSA patients and CPAP users.
Discussion and Implications
Through hermeneutic interpretation of patients’ narratives about seeking help through CPAP support groups, new understanding of the frustrations and need for empowerment to accommodate to the CPAP device emerged. The support group assisted the informants in learning from each other, facilitating the empowerment that assisted them in problem solving, and learning to cope with the cumbersome device. Discussion is organized by themes.
Theme One: Becoming Motivated
Although the literature confirms that compliance is a problem with CPAP use, it does not relate the difficulties and the need to persevere. Focusing on patient motivation may be useful information for nurses working with CPAP patients. Research studies of CPAP influence on bed partners’ QoL indicate that CPAP use also improves the bed partners’ and patients’ QoL (Doherty, Keily, Lawless, & NcNicholas, 2003; Parish & Lyng, 2003). Unlike the results of the earlier research, this current study brings to light some of the problems that introducing the CPAP machine into the bedroom may entail (e.g., body image, machine and air noises), as well as some creative solutions.
Theme Two: Experts Accommodating to the Device
Expert users have a wealth of common-sense approaches to accommodating to the device. Nurses can encourage new users to access this information in support groups and online message boards. The patient experts also have knowledge of how to monitor their symptoms and can provide for that learning need as identified by Smith et al. (1998). New patients may gain hope by witnessing other patients living with the device and coping with the difficulties. This hope is a therapeutic benefit of support groups (Townsend, 2000).
Theme Three: Listening and Telling Stories
There is a need for practical information to provide context for understanding required changes in lifestyle. Healthcare providers need to understand this context in order to identify possible interventions. Stories of everyday life with CPAP may provide insight into understanding the issues. Nurses can listen to expert patients’ stories to gain insight into the everyday difficulties.
Theme Four: Support Group as Community
Nurses may recommend support groups to their CPAP patients, as well as refer them to Internet-based support groups. Increasing knowledge decreases obstacles and improves accommodation to the device. This information assists patients’ self-management by providing needed product information, advice on how to persist, and a forum to ask questions of expert CPAP users. The nurses’ role in the support groups was to facilitate discussions, clarify misconceptions and offer referrals. The urban group had a longer time to develop experts and had more resources (i.e., CNS) than the rural group, yet informants from each group described benefits from the group discussions.
These CPAP support groups had similar therapeutic features to Yalom’s (1985) 11 curative factors achieved through interpersonal interactions in a support group. The curative factors were the instillation of hope (being able to persist and use CPAP), universality (realizing that one is not alone and that others have similar problems), imparting information (listening to stories of daily coping), altruism (mutual sharing and concern for each other), corrective recapitulation (resolving problems with CPAP through feedback and exploration), development of socializing techniques (developing new social skills in dealing with healthcare providers and payers), interpersonal learning (learning though others’ responses to you), group cohesiveness (sense of belonging and using humor to cope), catharsis (expressing both positive and negative feelings), and existential factors (taking direction in their own lives and accepting responsibility for their QoL).
These support groups had similar features to the compliance interventions described in the literature. They had nurses as resource persons to help understand machine usage and support (Hoy et. al., 1999; Hui et. al., 2000; Likar et. al., 1997) and encouraged them to ask questions and compare experiences (Likar). The support groups encouraged patient empowerment and self-motivation (Hoy et al.) What was different in the current study was the value given to the patient experts and their stories in encouraging learning and empowerment. The patient expert was a valuable resource for new patients. Nurses can use them as allies in the learning process. Nurses can also initiate support groups by learning group leadership skills found in most psychiatric nursing texts (Townsend, 2000) or literature on group theory (Napier & Gershenfeld, 1985).
A Web site developed with the support of a local hospital or educational institution could serve as a supplementary resource for newly diagnosed patients. In this study several informants explained similarities to the CPAP support-group information and benefits of online supports. Currently 54% of the United States has Internet access (National Telecommunications and Information Administration, 2002). Nurses with computer skills could develop Web sites with content input from support-group members. This Web site could then complement the monthly support-group meetings. Nurses could then play a valuable role in assisting patients in evaluating the Internet information.
Future research could examine the motivations to persist with CPAP use and how to encourage accommodation to the device in people who do not attend a support group. An intervention could be designed implementing knowledge from support groups and features from this study to facilitate accommodation of CPAP into a person’s lifestyle.
The author thanks Judy Tomasini, MS RN, and Constance Pasternak, MS RN, on the research team for their assistance and the group members who shared their stories.
About the Authors
Suzanne Steffan Dickerson, DNS RN, is an associate professor at State University of New York at Buffalo School of Nursing. Address correspondence to her at 914 Kimball Tower, 3435 Main Street, Buffalo, NY 14214-3079 or firstname.lastname@example.org.
Mary C. Kennedy, MS RN, is a cardio/pulmonary clinical nurse specialist at Kaleida Health, Buffalo General Site, Buffalo, NY.
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