ORIGINAL ARTICLE

Life experiences among obstructive sleep apnoea patients receiving continuous positive airway pressure therapy Shui-Tao Hu, Chung-Chieh Yu, Pei-Shan Lee and Lee-Ing Tsao Aims and objectives. To generate a descriptive theoretical framework for experiences among obstructive sleep apnoea (OSA) patients undergoing continuous positive airway pressure (CPAP) therapy. Background. Insufficient information is available about subjective experiences among OSA patients undergoing CPAP therapy. This study aims to address that lack of insight into patients’ feelings. Design. A qualitative study using the grounded theory method to establish a descriptive theory. Methods. Twenty-two Taiwanese OSA patients undergoing CPAP therapy participated in comprehensive interviews. Results. The patients, aged 37–68 years, participated in wide-ranging interviews. ‘Living with CPAP’ was the core theme describing the life experiences of OSA patients undergoing CPAP. Health warnings were identified as the antecedent condition, with subcategories including the following: severe snoring, choking and feelings of a terrible death during sleep, day and night sleepiness, easy tiredness, decreased memory, poor sleep, dry mouth, dry throat, headache, high blood pressure, poor blood sugar level control and falling asleep while driving. Analyses indicated seven subcategories of OSA patients with CPAP: (1) seeking medical information, (2) difficulties with CPAP, (3) trial and error for the ‘right’ CPAP, (4) long scheduled waiting times, (5) wondering, (6) high expectations, and (7) getting back good health. Conclusions. The results will assist healthcare providers with references for OSA health care based on patients’ subjective perspectives. Relevance to clinical practice. After interpreting and analysing results, suggestions include the following: (1) provide medical resource education for outpatients and inpatients to access self-care knowledge regarding OSA; (2) institute professional personnel for providing OSA health education in sleep clinics or sleep centres; (3) develop hospital standards for sleep examination processes to shorten waiting times; (4) establish case management for pursuing OSA patients receiving CPAP; (5) arrange regular forums for patients to share their experiences; and (6) provide community health education to promote awareness of snoring issues.

What does this study contribute to the wider global clinical community?

• This study generated a descrip-

•

tive theoretical framework for experiences among obstructive sleep apnoea patients undergoing continuous positive airway pressure therapy. The study results will assist healthcare providers with references for OSA health care based on patients’ subjective perspectives.

Authors: Shui-Tao Hu, MSN, RN, Nursing Supervisor, PhD Candidate and Part-time Instructor, Department of Nursing, Chang Gung Memorial Hospital, Keelung, College of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, and College of Nursing, Chang Gung University of Science and Technology, Taoyuan; Chung-Chieh Yu, MD, Medical Physician and Part-time Instructor, Division of Pulmonary, Critical Care, Sleep Medicine, Chang Gung Memorial Hospital, Keelung, and College of Medicine, Chang Gung University, Taoyuan; Pei-Shan Lee, MSN, RN, Nurse Practitioner and PhD Candidate, Department of

Nursing, Chang Gung Memorial Hospital, Linkou and College of Nursing, National Taipei University of Nursing and Health Sciences, Taipei; Lee-Ing Tsao, DNSc, RN, Professor, College of Nursing, National Taipei University of Nursing and Health Sciences, Taipei, Taiwan Correspondence: Lee-Ing Tsao, Professor, Dean, College of Nursing & Vice President, National Taipei University of Nursing and Health Sciences, No. 365, Ming Te Road, Peitou 112, Taipei, Taiwan. Telephone: +886-2-2822-7101 ext. 3000. E-mails: [email protected]; [email protected]

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© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 268–278, doi: 10.1111/jocn.12414

Original article

Obstructive sleep apnoea, life experiences

Key words: continuous positive airway pressure, grounded theory, obstructive sleep apnoea Accepted for publication: 29 April 2013

Introduction Obstructive sleep apnoea (OSA) is a sleep disorder characterised by intermittent, partial or complete airway collapse, seriously impacting sleep apnoea and respiratory insufficiency (Victor 2004). An Australian study enrolled adults aged between 34–69 years with OSA. OSA prevalence was 3
6%, with male and female prevalence rates at 5
7% and 1
2%, respectively (Olson et al. 1995). In Asia, the report shows Singaporean, Chinese, Malaysian, and Indian sufferers of OSA, with prevalence levels of 6
2%, 8
1% and 10
9%, respectively (Ng et al. 1998). The sequelae of OSA patients can be related to traffic accidents and other impacts. In the United States, traffic accidents have been connected to OSA and directly related to a seven fold increase in risks of traffic accidents in OSA patients (Findley et al. 1988). Direct impacts of OSA patients include loud snoring, poor sleep, cardiovascular disease, cardiac arrhythmia, renal disease, urinary frequency, nocturia, diabetes, hypertension, and a risk of sudden death (Benumof 2001, Merritt & Berger 2004). Up to 95
0% of OSA cases are treated with continuous positive airway pressure (CPAP), which is the most effective, commonly used, and low-risk treatment method (Sullivan et al. 1981); however, patients using CPAP therapy could face ongoing difficulties. In one study, 35 patients were enrolled with OSA, 14 in the University of Pennsylvania and 21 in Johns Hopkins University. Study results indicate that the most common initial problems of CPAP included inconvenience (54
5%), stuffy nose (46
9%), poor sleep (32
3%), disturbed sleep (31
3%), less intimacy with bed partner (31
3%), claustrophobia (28
1%), facial irritation (28
1%), and expense (27
6%) (Kribbs et al. 1993). Few studies have been conducted relating to subjective experiences of OSA patients using CPAP therapy in Taiwan; hence, patients experiencing OSA therapy difficulties have not been addressed. Consequently, one could ask: What are the self-perceived sleep qualities for OSA patients undergoing CPAP therapy? How do OSA patients perceive CPAP therapy? What issues influence OSA patients using CPAP therapy? How do patients manage CPAP therapy problems? When OSA patients suffer from extended sleep disturbances, their impaired sleep quality may become a © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 268–278

chronic condition. Subsequently, this affects OSA patients’ health statuses, lifestyles and qualities of life. Therefore, developing a descriptive theory of subjective experiences is crucial to sleep disturbance care in OSA patients using CPAP therapy.

Background Although studies indicate that CPAP is an effective treatment for OSA patients, insufficient information is available about subjective experiences among OSA patients undergoing CPAP therapy. Research is required to explore OSA patients’ feelings and perceptions in dealing with CPAP therapy.

Methods Design The study used the grounded theory method for developing a substantive theory. The grounded theory method is commonly used when discovering a new perspective on individuals experiencing a phenomenon under study (Strauss & Corbin 1990); hence, this method was used to understand the process of seeking medical help and the various life experiences among OSA patients receiving CPAP therapy. The grounded theory method design helped to generate a descriptive theory about the life experiences of OSA patients receiving CPAP therapy who were restoring their health and also living with CPAP.

Sample A convenience sample was used; specifically, all the study participants were from a teaching hospital and received CPAP therapy in an outpatient clinic. Sample size depended on the analysis of a theme, whether there were repeatedly spoken ideas or material from discussions. If no new themes were elicited, this indicated saturation. The inclusion criteria were as follows: (1) diagnosed with OSA and receiving CPAP, (2) willing to share OSA experiences with researchers, and (3) able to communicate using Mandarin, Taiwanese, or Hakka. Exclusion criteria for this study included patients who had psychiatric illnesses or other major illnesses (i.e., malignancies).

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Ethical consideration This study received approval from the hospital Institutional Review Board (IRB). The researchers explained the study purposes and obtained oral and written consent from interviewees. During the interview process, interviewees were guaranteed total privacy. Confidentiality of interview data was strictly adhered to. Each participant was informed of the right to withdraw from the study at any time during the initial interview.

Data collection and analysis The recruitment period was from February 2011 until September 2011. 22 subjects were recruited to participate in comprehensive interviews and data collection. The entire interview process was anonymously recorded. The length of each interview averaged 50 minutes. The interviewees were given the opportunity to describe subjective life experiences without distraction. The interview guidance included the following prompts: 1 In what situations did you receive CPAP therapy or discontinue CPAP therapy? 2 What are your feelings regarding CPAP therapy or the discontinuance of CPAP therapy? 3 How has daily life changed after receiving CPAP therapy? 4 Do you have any memorable experiences to relate regarding CPAP therapy? If so, please explain how these experiences affected you? 5 How do you feel about the CPAP machine? Did you encounter difficulties after receiving CPAP therapy? If so, please describe these situations and when they occurred. What methods have you used to manage such problems when they occurred? 6 According to your personal experiences before receiving CPAP therapy, were any medical staff members present to provide assistance? If yes, what assistance was provided? How do you think these provisions suited your needs? What kinds of assistance did you need during CPAP therapy? Why? How do you think you would provide such assistance to yourself, and what sort of help would you hope to receive? 7 Thank you for sharing your experiences. Do you have any other ideas or feelings to share with me? During the data analysis process, data collection, coding and analysis were performed simultaneously. Interview data were continuously collected until there was data saturation and no new information was recorded. To prevent subjective perceptions of interviewers affecting the

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validity of the study content, after inviting three interviewees to read the finished text, it was found that the results of this study addressed personal experiences among OSA subjects with CPAP therapy. Furthermore, a nursing professor and nursing specialists familiar with this field were asked to analyse the meanings and concepts extracted from the original data, line-by-line and paragraph-by-paragraph. If a researcher was doubtful about contexts, the researcher returned to the original text for further clarification. The Excel software program was used to save and sort the analysed ideas and related notes to facilitate data analysis. During the process of data analysis, the lead researcher invited experts who included chest physicians, a qualitative research professor, an advisor, and co-researchers to repeat checks of the analytical data to provide the researcher with guidance and correction opportunities to increase the objectivity of the study results. Continuous data comparison and analysis were performed as follows: 1 Open coding. This indicates that open exploration was performed on the data, which was thoroughly coded. Concept categories were sought and then given designations. After a research nursing professor and nursing specialists read each transcript section, related life experiences among OSA subjects receiving CPAP therapy were identified. The transcript was thoroughly re-read to find preliminary categories related to life experiences. 2 Axial coding. By continuous comparison and analysis, the researchers identified connections between primary categories and related subcategories. 3 Determining the initial theory. Data were systematically organised and an event sequence was constructed from related concept categories. A substantive theory was constructed to explain the relationships between concept categories. The rigour of this study was evaluated based on four strict criteria used to measure content trustworthiness in qualitative studies, as proposed by Guba and Lincoln (1994). In terms of credibility, data were collected by open, thorough interviews where participants could communicate realistic and in-depth subjective experiences. Additionally, the convenience sampling method from chest physicians recommended participants from outpatient department (OPD) of sleep disorders in a teaching hospital. The method increased the interviewees’ faith in the researchers, allowing them to better express their innermost feelings, which resulted in increased credibility of data. In terms of transferability, the interviewees recruited in this study were OSA subjects who were willing to share their experiences, resulting in the accumulation of valuable © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 268–278

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Obstructive sleep apnoea, life experiences

information. Researchers transcribed the original data into text, which was thoroughly annotated. During the confirmation process, researchers performed a neutral analysis and recorded summaries of important interview content immediately after each interview. This was compiled into a volume to be used as an evaluation channel reference for future data analysis.

Results and interpretation Of the 22 subjects, 17 continued receiving CPAP therapy and 5 discontinued CPAP therapy. This comprised 18 male and four female participants, aged between 37–68 years, with body mass indexes (BMI) between 22
1~41
0 kg/m2 (mean 27
5 kg/m2), with neck circumferences between 36
0~44
5 cm (mean 39
7 cm), having Apnoea Hypopnoea Indexes (AHI) between 40~92
6/ hour (mean 60
3/hour), with 12 participants (54
6%) who had histories of hypertension and 10 participants (45
5%) who purchased CPAP apparatuses from vendors by themselves. Living with CPAP was the core theme for describing the life experiences among OSA patients using CPAP therapy (Fig. 1). During the process, health warnings were identified

Health warnings 1. Severe snoozing 2. Choking and feelings of terrible death during sleep 3. Poor sleep 4. Day and night sleepiness 5. Easy tiredness 6. Decreased memory 7. Dry mouth, dry throat and headache 8. Blood pressure, poor Blood sugar level control, and heart palpitation 9. Fall asleep while driving

as an antecedent condition, with subcategories including severe snoring, choking and feelings of a terrible death during sleep, poor sleep, feeling sleepy easily, easy tiredness, decreased memory, dry mouth, dry throat, headache, blood pressure, poor blood sugar level control, heart palpitations and falling asleep while driving. Analyses showed seven categories of OSA subjects using CPAP therapy. Results revealed seven categories and their subcategories as follows: (1) seeking medical information, (2) difficulties with CPAP, (3) trial and error for the ‘right’ CPAP, (4) long scheduled waiting times, (5) wondering, (6) high expectations, and (7) getting back good health.

Results Living with CPAP Living with CPAP was defined as a process undertaken by OSA patients using CPAP therapy and attempting to alleviate difficulties associated with CPAP therapy. The OSA patients attempted seeking medical resources by themselves, including the World Wide Web; media sources, including books and magazines, family, relatives and friends; chest or

Seeking medical information 1. From media report 2. From family, friends, or relatives 3. From chest or ENT physicians

Difficulties with CPAP 1. Air leaking 2. Physical restraint 3. Asynchronous ventilation 4. Lack of consultation or supporter from medical professionals 5. Limited health knowledge

Trial and error for the ‘right’ CPAP 1. Self testing treatment models 2. Self sought information 3. A little knowledge from health providers

Living with CPAP

Figure 1 The processes of life experiences among patients with obstructive sleep apnoea.

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 268–278

Getting back good health 1. Snoring subside 2. Full sleep 3. Disturbed symptom subsidence 4. Good energy level 5. No more inconvenience to family and others 6. Revitalised memory 7. Working more efficiently 8. Depending on CPAP equipment

High expectations 1. Providing complete professional consultations and education 2. Reducing CPAP expenses 3. Arranging CAPA supporting group 4. Arranging prompt sleep examination 5. Continually developing OSA care knowledge

Wondering 1. Curing? 2. Burden? 4. Handicapping?

Long scheduled waiting times Waiting a long time to schedule an examination for sleep difficulties

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ear, nose and throat (ENT) doctors. OSA subjects searched for appropriate CPAP therapy from different sources, such as self-testing treatment models and self-sought information.

Health warnings Symptoms and signs of OSA are caused by soft tissues at the back of the throat that collapse and block the airway. Breathing pauses can last from 10 seconds to a minute or longer. These breathing pauses produce health warnings. One object of this study was to describe these health warnings, which are listed in Fig. 1 and further detailed below. Severe snoring One subject discovered his severe snoring from family and friends. Two subjects described their situations as follows: I snored loudly; I could not sleep well. My wife said my snoring was very serious and frequent, which could be heard from afar. Another subject noted that I went to my friend’s house overnight, and their family said my snoring was serious and highly pitched. Choking and feelings of a terrible death during sleep Saliva often flows back to cause choking during sleep. Two subjects described: I snored, and was, too tired to drool. I felt that I could not inhale air, then I awoke, and my sleep was interrupted, impacting my sleep quality by creating feelings of a terrible death. Poor sleep Poor sleep was defined as not getting enough sleep at night due to snoring. Three subjects described: I snored, and then I dreamed of chaotic daytime events, later awaking from my sleep. The sleep was susceptible to interference, affecting sleep quality. Another subject noted: Sometimes, I slept two hours, later having no way to sleep again due to nasal congestion or nocturia, when lying down to sleep. I was probably urinating two–three times a night. Sometimes, I awoke from 3–4 o’clock until dawn. There was no way to sleep again. Day and night sleepiness and easy tiredness One subject noted: I felt dizzy when I awoke in the morning. I slept six–seven hours at night, but still felt sleepy. Two subjects noted: I always feel like I haven’t had enough sleep during the day and night. I have felt continually tired.

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Decreased memory Sleep is interrupted by snoring, dreaming and frequent urination during the night. Two subjects noted: I felt groggy and my memory had declined during the daytime. Another subject mentioned: When I sat during meetings, I fell asleep easily. My memory and spirit have decreased. Dry mouth, dry throat and headache The subjects showed dry mouth, dry throat and headache when they awoke. Three subjects noted: I may snore. My mouth and throat are dry whenever I awake. I felt headaches during sleep due to poor sleep at night. Blood pressure, poor blood sugar level control and heart palpitations A subject with a history of hypertension, diabetes mellitus, heart disease, blood pressure and poor blood sugar level control showed heart palpitations. Two subjects noted: My sleep was very bad. Blood pressure and blood sugar control were not good, and usually high. Another subject mentioned: I found that my heartbeats were quicker during sleep. I often suddenly awoke; this probably happen once or twice a night. I knew this may be a warning sign for me. Falling asleep while driving Whenever subjects drove a car, stopping at traffic signs or parking, they fell asleep due to poor night-time sleep. Two subjects noted: I drove a car and instantly fell asleep after one to two seconds. I am usually frightened to be asleep. The other subject mentioned: I am a truck driver. When I drove cars, I was not more than three seconds at a steering wheel before falling asleep. I know that is dangerous for me. Another subject described: I have fallen asleep during the past five–six years, whenever I drove a car and while stopping at traffic signs or parking.

Seeking medical information The subjects’ symptoms were due to OSA. These participants tried seeking treatment for symptoms, from media reports, family, friends, relatives or doctors. One subject mentioned: I snored loudly, and I couldn’t sleep well. I tried searching the World Wide Web to find information for my situation. My husband helped me arrange to visit the sleep disorder center, and I was diagnosed with sleep apnoea. Another subject noted: I thought that the snoring was unimportant, but it influenced my sleep. My friend suggested that I visit a sleep apnoea center for a consultation,

© 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 268–278

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because her husband had the same symptoms as I had. When I later visited an ENT physician, he suggested visiting a sleep center for treatment. Media reports One subject mentioned: I think my illness and media reports of sleep apnoea were like how my wife feels. I searched the World Wide Web and newspapers for information regarding his snoring, sleepiness, and fatigue. I probably saw some written report, and became aware of sleep apnoea symptoms that I have. Family, friends or relatives One subject noted: I snore and cannot sleep well. My husband helped me visit the sleep center and receive a diagnosis of OSA. I think snoring is unimportant, but it influences my sleep. Another subject mentioned: My friend suggested that I go to a sleep center for consultation, because her husband had the same symptoms as I have. Chest or ENT physician One subject noted: I went to see ENT clinics, and an ENT physician said my sleep situation wasn’t an ENT problem; therefore, the ENT physician referred me to a sleep clinic to examine my sleeping problems.

Difficulties with CPAP The subjects encountered problems using CPAP, including the following: (1) CPAP mask leakage, pipe slippage, a tight pressure feeling or a foreign body sensation resulting in subjects feeling uncomfortable, (2) unavailability of medical staff to teach cleaning and maintenance procedures of CPAP equipment, (3) unavailability of medical professionals to specify explanations, purposes and precautions when using CPAP, or conversely, the risks and dangers of not using CPAP therapy, and (4) information related to CPAP equipment purchased for patients’ usage. Information was acquired from World Wide Web searches, hearsay, friends or salespersons. Air leakage Two subjects mentioned: I had been wearing the mask too loosely, creating air leakage, and frequently awoke at midnight. The air had been coming out from my nose edge, and later that night I did not sleep well. Another subject mentioned: I began to wear the mask too loosely, creating leakage, and wore the mask too tightly near nasal skin, which became painful and uncomfortable, causing me to sleep lightly. I felt uncomfortable wearing © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 268–278

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the mask on my face, as the foreign body and pressure felt strange to me. Physical restraint Two subjects mentioned: The mask caused me discomfort. In terms of a sleeping person, it is not natural to wear something to sleep. Now, I wear this equipment, which constraints me and makes me uncomfortable. I would probably remove it during sleep. Another subject mentioned: I was wearing this mask with pipe constraints. I had difficulty in turning over my body position during sleep. Asynchronous ventilation Three subjects mentioned: I started wearing this mask and breathing was very bad. It didn’t suit my breathing. I was afraid of aspiration which I thought might stop my breath. I could not deal with the uncomfortable mask then. Now, I have adapted to the feelings of the mask for a long time. Another subject noted: The mask pressure was quite high, which could not match my breathing, and this bothers me during sleep. Lack of consultation or support Two subjects mentioned: Initially, there was no medical staff to clearly explain details or provide consultation about how I should operate CPAP equipment. There was no medical staff to explain information concerning CPAP therapy to me. I found most CPAP therapy information from hearsay, the World Wide Web, newspapers, friends, or salespersons. Until recently, I did not know if I would have an emergency if I ceased CPAP therapy. Limited health knowledge Three subjects mentioned: I lacked know-how for maintenance, and repair matters of CPAP equipment. No medical staff taught me how to clean, maintain, or use it during CPAP therapy. I used my own methods to take care of the CPAP machine. I did not know if my servicing techniques were correct or not? Mostly when I had problems, I asked my salesman, but he was unprofessional, and did not provide me specific information or precautions for CPAP therapy. One subject mentioned: When the machine malfunctioned, I worried about how I could get it serviced.

Trial and error for the ‘right’ CPAP Physicians provided subjects with supplier menu lists of CPAP equipment. According to the menu lists, subjects looked for their own CPAP machine from the World Wide

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Web, relatives or friends. Subjects began CPAP therapy and later could not adjust their CPAP equipment; hence, subjects had to adjust their CPAP equipment to their own needs, including temperature control, cleaning and maintenance. Subjects relied on self-testing and adjustment by trial and error for suitable CPAP therapy. Self-testing treatment models Two subjects mentioned: Initially, CPAP therapy was not easy to adapt to. I experimented extensively to obtain information. Whenever cooler weather was imminent, the CPAP machine mask and air pipe would accumulate condensation. I felt uncomfortable. The temperature controls relied on my own adjustments. Furthermore, the mask and attached pipe on my face affected my changing of body position and sleep. I adapted to the situations after adjusting the mask and pipe by myself. Self-seeking information Two subjects mentioned: I tried to find an appropriate CPAP for myself. I enquired about CPAP equipment usage, cleaning, maintenance, troubleshooting, after-sales service, and other matters of CPAP therapy by myself. This was difficult. A little knowledge from health providers Three subjects mentioned: Equipment usage, cleaning, maintenance, troubleshooting and service information of CPAP equipment was self-acquired, and lacked medical information from professional personnel.

Long scheduled waiting times Subjects needed to spend long periods waiting to scheduled sleep examination time in a hospital. Waiting for a long time to schedule a check-up for sleep problems Three subjects mentioned: I waited for a long time to check my sleeping problems, approximately three months, from December to March. I hoped to shorten the waiting period for the sleep examination. Another subject mentioned: Hospitals require long waiting times of around two– three weeks for sleep examinations. I felt powerless.

Wondering Subjects of CPAP therapy were wondering, whether their conditions were curable, a burden or a handicap. Subjects often had feelings of uncertainty toward outcomes of CPAP therapy.

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Curable? Two subjects mentioned: Did I need to wear CPAP equipment to sleep for a lifetime? If I accepted CPAP therapy, would my sleeping problems be cured? The physician said that suspension of treatment would cause ventricular hypertrophy due to sleep apnoea. This seemed intimidating. At the end of my life, I was afraid that if I had a stroke, I would become a burden to others. This was concerning. Burden? Four subjects mentioned: An automatic CPAP machine is between USD$2,400–2,800. The price to me seemed expensive. I hoped the price would suit my needs. Another subject noted: The price of a CPAP machine was between USD$1,050–1,380. The price was expensive and unaffordable. Two subjects mentioned: The CPAP machine was too expensive. The Government reimbursed me USD$691. I hoped that the government would grant more money, because the price burdened me. Handicapping Two subjects mentioned: Sleep apnoea is a disability. I was diagnosed with sleep apnoea, and was provided with an information handbook from a sleep physician. The physician introduced me to CPAP therapy. I was shocked. I admitted to myself that I must overcome my psychological barriers regarding this handicap.

High expectations The subjects faced problems from CPAP therapy, including insufficient knowledge concerning care and treatment of sleep apnoea. Common CPAP therapy information was available for subjects, who otherwise got their information from the World Wide Web, hearsay, friends or family. These people had dealt with CPAP machines, help in choosing a mask, cleaning, maintenance, care and repair matters of CPAP equipment. Consequently, information from others was incomplete; hence, high expectations resulted from subjects regarding CPAP machine usage, mask choice, cleaning, maintenance, care and repair matters – which was consequently not met. Other information should have been provided by medical staff. Providing complete professional consultations and education Three subjects mentioned: I knew about sleep apnoea from the World Wide Web, friends, family or hearsay, but this knowledge was incomplete. I would like to have known more concerning sleep apnoea treatment and care. © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 268–278

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I purchased a CPAP machine from a vendor, who did not provide relevant cleaning and maintenance information for CPAP equipment. When the CPAP machine was broken, I had to spend a lot of time to contact the vendor dealing with repair matters. I felt so sad and powerless. Therefore, I suggested that hospital professionals could provide some guidance and consultation. Additionally, hospital professionals could provide demonstrations for maintenance and cleaning of CPAP equipment. Reducing CPAP expenses Four subjects mentioned: A CPAP machine was valued between NT $ 70,000–80,000. The price was expensive to me. I hoped the price would compensate me for my needs. Arranging CPAP supporting group Three subjects mentioned: Some information on the World Wide Web is incorrect, and I hope OSA disease sufferers can share experiences with medical staff at hospitals. Arranging prompt sleep examinations Three subjects mentioned: The sleep examination took a long time, from two–three weeks. Waiting times were for long periods. I did recommend that the hospital shorten the waiting period for scheduling sleep examinations. Continually developing OSA care knowledge Five subjects mentioned: Sleep apnoea patients always felt that they did not sleep enough. Recently, I drove a car and felt sleepy. I knew that sleep apnoea symptoms were relatively dangerous. I did recommend that health, government or hospital authorities should promote treatment, care information and knowledge of sleep apnoea. Additionally, why should health, government or hospital authorities educate people if there were no treatment for the sequelae and affects of sleep apnoea?

Getting back good health The subjects felt the following benefits of returned good health: snoring subsidence, adequate sleep during nighttime, disturbed sleep symptoms subside, good energy levels, lessened inconvenience of family and others, revitalised memory, working more effectively, confidence and dependency on CPAP equipment after CPAP therapy. Snoring subsidence Two subjects mentioned: I was relatively stuffy and now I feel relaxed, and my breathing has improved after CPAP

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therapy. The other subject mentioned: After CPAP therapy, my wife said that my sleep was better, and that I had almost no snoring at night. My wife was willing to sleep with me. I felt pleased. Full sleep Three subjects mentioned: I didn’t have dreams and snoring at night after CPAP therapy. I could sleep through the night. My sleep quality was better and felt good. The other subject noted: The noisy car sound often went through my house at midnight. After CPAP therapy, I could sleep well and seldom heard noisy sounds. Disturbed sleep symptoms subsidence Three subjects mentioned: After accepting CPAP therapy, I felt better. When I awoke, I did not have a dry mouth, thirst, or chest pain. I no longer worried about poor sleep, resulting in pressures. Another two subjects noted: My blood pressure got better, decreasing from 150–130 mmHg after CPAP therapy. My headaches, dizziness, and sleepiness during the daytime subsided. Now, I feel relaxed and happy. Good energy levels Three subjects mentioned: After CPAP therapy, I could sleep peacefully at night. I woke up feeling in better the spirits in the morning. I did not feel sleepy during the daytime. Two subjects mentioned: Before I used the CPAP therapy, and I always needed 10 hours sleep, but I still felt that sleep was not enough. Now, I sleep about five– six hours and feel relaxed when I awake. Now whenever I drive a car, I do not feel sleepy. I wanted to say that my whole spirits were good. No more inconveniences to family and others Two subjects mentioned: After CPAP therapy, I sleep well and I no longer snore at night. Whenever I go to a meeting, traveling with colleagues or family members, I would not snore and affect them during sleep. Revitalised memory Two subjects mentioned: My sleep was good at night and I was not sleepy during the daytime after CPAP therapy. My memory returned to a normal situation. Working more efficiently Two subjects mentioned: I worked and had meetings and would not doze or feel sleepy during the day after CPAP therapy. My work returned to a normal efficiency.

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Dependency on CPAP Two subjects mentioned: When I got up I felt very comfortable, and my spirit grew after CPAP therapy. Currently, I could not live without the CPAP machine. Three subjects mentioned: Now, if I did not use the CPAP, I might not feel comfortable during sleep. I depend on it . If I visited another city or went abroad, I would use the CPAP machine.

Discussion Living with CPAP is the core category of the present study. Subjects in the current study considered health warnings to be a part of life experiences among patients with obstructive sleep apnoea processes. The health warnings identified in this study were similar to those of Merritt and Berger (2004) and Benumof (2001). OSA treatment using CPAP is the most effective and lowrisk treatment method, but a variety of difficulties related to CPAP were identified, as detailed above. In addition, while several studies have demonstrated that CPAP in OSA is a preferred treatment method, problems with the treatment include the following: drying or irritation of nasal and pharyngeal membranes, nasal congestion, runny nose, mask air leakage. Eye irritation and discomfort are also common (Hoffstein et al. 1992, Weaver & Sawyer 2010). Furthermore, another study mentions several common problems of CPAP therapy, including the following: air leakage and uncomfortable sleep at night, inability to maintain masks in a certain position on the face and mask pressure causing discomfort (Waldhorn et al. 1990). A Scottish study of CPAP treatment indicated that a mean follow-up of 22 months was found for 20% of patients who ceased CPAP treatment due to discomfort around nasal areas, a perceived lack of benefit from the therapy, feelings of claustrophobia, weight issues and repeated nasal bleeding (McArdle et al. 1999). In Taiwan, qualitative interviews with 10 women who used CPAP, demonstrated an adaption of processes for CPAP therapy, where patients had initial adjustment problems in CPAP therapy, including the following: constrained feelings, CPAP operational problems, inconvenience, embarrassment, lack of knowledge for cleaning and maintenance of equipment and alienation of husbands (C.H. Lee, National Taipei University of Nursing and Health Sciences, Taipei, Unpublished Master Thesis, 2009). Subjects expressed various concerns about CPAP therapy, as detailed above. In Taiwan, health insurance does not cover OSA patients with CPAP therapy. An automatic and fixed value CPAP machine in Taiwan varies between USD$2,400–2,800 and USD$1,050–1,380, respectively. Expenses of CPAP machines exceed average monthly salaries

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of USD$1,470 for Taiwanese people (Directorate-General of Budget Accounting & Statistics of Taiwan 2012). Consequently, the government has created laws that assist and protect vulnerable populations in Taiwan. Meanwhile, medical teams are aggressively striving for health insurance coverage for OSA patients using CPAP therapy, and these teams ensure that patients receive good treatment. High expectations from subjects concerning CPAP machines include choosing a suitable mask, cleaning, maintenance, care and repair matters. Subjects are concerned about which information should be provided from medical professionals. Whenever subjects felt snoring subside, they felt the benefits of a full sleep during night-time, symptoms of sleep disturbance subside, good energy levels, fewer inconveniences and burdens to family and others, revitalised memory functions, working more effectively and confidence in CPAP equipment after CPAP therapy.

Conclusion Living with CPAP was the core theme for describing and guiding processes of life experiences among OSA patients using CPAP therapy. During the process, health warnings were identified as the antecedent condition, and analyses showed seven categories of OSA subjects using CPAP therapy. Through the results of this study, we can better understand the needs of OSA patients using CPAP therapy, and we hope to apply this enhanced understanding in constructing the appropriate care model, which would include integrated nursing education for OSA patients with CPAP therapy to cover areas from clinical to home care, leading to significant improvements in the antecedent condition, self-care competency and quality of life for OSA patients using CPAP therapy. In addition, the results will present patients’ subjective perspectives and function as useful references to providers of OSA health care.

Relevance to clinical practice Throughout this study, subjects demonstrated that they acquired information concerning OSA, from various sources, some unreliable. Therefore, suggestions connected to the study results are as follows: (1) provide medical resource education for outpatients and inpatients, with self-care knowledge of OSA; (2) establishing professional personnel for providing OSA health education in sleep clinics or sleep centres; (3) developing hospital standards of sleep examination processes to shorten inpatient waiting times; (4) establishing case management for pursuing OSA cases that receive CPAP; (5) arranging regular forums for support groups to © 2013 John Wiley & Sons Ltd Journal of Clinical Nursing, 23, 268–278

Original article

Obstructive sleep apnoea, life experiences

share experiences of OSA and CPAP information from medical staff; and (6) community health education for people to understand snoring issues as diagnoses are confirmed.

Acknowledgements Sincere appreciation is extended to the OSA subjects who participated in this study and to the Chang Gung Medical Research Program Grant (CMRPG2A0091) of Keelung, Taiwan, for funding this study.

Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.

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