We included ten adherent and nine non-adherent participants. Table 4 reports socio-economic and disease-specific information for the participants. The interviews were conducted by telephone from September 2022 to November 2022. None of the interviews were conducted online or face-to-face.
Table 4
– Demographic and clinical characteristics of participants
Adherent participants |
Age (years) | Sex | Adherence to CPAP | AHI before start of CPAP | ESS | BMI | Civil status | Work situation | |
70–74 | F | 80–89% | Severe | 8 | 18,5–24,9 | Co-habitant | Retired | |
45–49 | M | 80–89% | Moderate | 6 | > 30 | Co-habitant | Full-time | |
70–74 | M | 80–89% | Severe | 12 | 25–29,9 | Co-habitant | Retired | |
50–54 | F | 90–100% | Severe | 4 | - | Single | Full-time | |
45–49 | F | 80–89% | Severe | 10 | > 30 | Single | Part-time | |
65–69 | M | 90–100% | Moderate | 3 | 25–29,9 | Co-habitant | Retired | |
60–64 | F | 90–100% | Moderate | 4 | 25–29,9 | Co-habitant | Full-time | |
35–39 | M | 70–79% | Moderate | 8 | 25–29,9 | Co-habitant | Full-time | |
35–39 | F | 80–89% | Severe | 11 | > 30 | Co-habitant | Full-time | |
65–69 | M | 80–89% | Moderate | 5 | 18,5–24,9 | Co-habitant | Retired | |
Non- or low-adherent participants |
30–34 | M | 0–9% | Severe | 17 | > 30 | Co-habitant | Full-time | |
70–74 | M | 0–9% | Moderate | 7 | 25–29,9 | Co-habitant | Retired | |
60–64 | M | 30–39% | Severe | 12 | 25–29,9 | Co-habitant | Full-time | |
45–49 | F | 30–39% | Mild | 4 | 25–29,9 | Co-habitant | Retired | |
45–49 | M | 30–39% | Severe | NA | 25–29,9 | Co-habitant | Full-time | |
60–64 | M | 10–19% | Mild | 17 | 25–29,9 | Co-habitant | Full-time | |
60–64 | M | 50–59% | Severe | 9 | 25–29,9 | Co-habitant | Full-time | |
45–49 | M | 50–59% | Severe | 2 | 25–29,9 | Co-habitant | Full-time | |
60–65 | M | 30–39% | Severe | 13 | > 30 | Co-habitant | Retired | |
F: Female; M: Male; CPAP: Continuous Positive Airway Pressure; AHI: Apnoea-hypopnoea index < 5 normal, 5–15 mild, 15–30 moderate and > 30 severe; BMI: Body Mass Index < 18,5 underweight, 18,5–24,9 normal, 25–29,9 overweight and > 30 severe overweight; ESS: Epworth Sleepiness Scale ranging from 0 to 24, the higher the score, the higher the person’s level of daytime sleepiness; NA: Not Available |
The analysis derived five themes: “Symptoms and thoughts about the diagnosis and CPAP treatment, “Expectations and personal resources are important for success”, “The experience of problems and benefit from CPAP treatment”, “Social impact of CPAP treatment” and “Information and support from the sleep clinic”. In the following, each theme is described in more detail and illustrated by selected quotes.
Symptoms and thoughts about the diagnosis and CPAP treatment
Participants described frustrations and worries after being diagnosed with OSA and before starting CPAP treatment.
“It sounded extremely dangerous despite feeling like you actually had an okay life” (male 60–64 years – low/non-adherent)
“I associated sleep apnoea with elderly overweight men, so it was tough mentally” (male 30–34 years – adherent)
However, many participants were happy to receive a diagnosis, as they learned about the reason for their current symptoms and the treatment options. It was also important for them to reduce the risks of untreated sleep apnoea.
“I was disappointed about the disease or diagnosis, but something could be done - I could come home with a solution under my arm” (male 45–47 years – adherent)
Some participants who had prior knowledge about OSA from family, friends, colleagues, and the media reported fewer frustrations/worries before treatment.
“Not really worried because I already knew a little about it from my former boss and my brother” (male 60–64 years – low/non-adherent)
The most frequent symptoms the participants described that led to diagnosis were fatigue, snoring, and breathing problems. In addition, participants had been diagnosed with OSA due to lack of energy and decreased memory - often women. Participants referred for evaluation of sleep apnoea due to snoring or breathing problems were almost all men. The participants described how a partner or others had noticed snoring and/or breathing problems. However, some participants had experienced waking up with feelings of not being able to breathe. For others, partners were alerted and nervous about the lack of breathing and were disturbed by the loud snoring.
“I snore, and my wife was nervous about my lack of breathing at night” (male 70–74 years – low/non-adherent)
“I couldn't sleep with other people because I felt like I annoyed them with my snoring” (male 30–34 years – low/non-adherent)
In addition to fatigue, snoring, and breathing pauses, several participants also described other symptoms that led to evaluation for OSA, such as headache, heart disease, and the feeling of “heavy eyelids”.
Expectations and personal resources are important for success
The participants described how their expectations and personal resources affected their motivation for treatment. The patients had positive but varying expectations for the treatment and its effect. However, a general expectation was that their fatigue and snoring would be treated/reduced. This expectation was a significant motivation for starting with CPAP.
Several participants felt that the prospect of their symptoms and comorbidities either improving or ceasing was an important motivating factor.
“If sleep apnoea has an impact on my blood pressure and CPAP can make me reduce my medication, that would be a good thing” (male 60–64 years - low/non-adherent)
Some male participants described the importance of attitude and openness to ensure CPAP treatment success. Others described that the greatest motivation was feeling the effect of the CPAP treatment and experiencing a positive change in their daily lives.
Many of the participants from both groups reported that support and conversations about CPAP treatment with their relatives, employers, and social circle positively affected their motivation for the treatment. In addition, some were motivated as CPAP treatment changed the symptoms and thus their concerns about the partner/family.
“I think it's (swear word) more or less done for my wife's sake, so she could get some proper sleep” (male 45–49 years - low/non-adherent)
Some participants described how starting CPAP treatment was a big adjustment since they could not sleep well with the equipment every night, and some nights not at all. In addition, they felt it was demotivating to continue the treatment.
“I expected to feel more rested and fresh during the day. The first night was really good, and I was so refreshed during the day. The second night was bad; I was frustrated and upset, it went up and down” (female 35–39 years - adherent)
Only one participant expressed no knowledge about CPAP treatment or support from a social network. However, several participants also described feelings of insecurity. They found it challenging with many new practical issues and worries.
“Info is difficult because there are so many new things you're dealing with and new feelings about how it's going to go if you can handle it by yourself and things like that” (male 45–49 years - adherent)
The experience of problems and benefits from CPAP treatment
It was difficult for the participants to get used to the CPAP treatment. Some needed several months of adjustment, partly due to problems with falling asleep, interrupted sleep, discomfort from mask/tube, gas in the stomach, dryness in the nose/mouth/throat, heat, and feelings of suffocation.
“For the first few months, I would wake up and press the on/off button [to reset the regulation of pressure], and it took a while before I fell asleep again. Now I give it [the button] a tap, and then I fall asleep again” (female 45–49 years - low/non-adherent)
Some described quickly experiencing better sleep, feeling more rested, and noticing a difference after the first night of treatment. These participants reported improved quality of life after initiating CPAP treatment.
“Certainly a little more complicated to fall asleep, but if it makes me feel better in the end, then that's just what it is” (male 35–39 years - adherent)
Mask problems were initially a major issue for most participants, resulting in mask changes. Many found it challenging to choose the most suitable mask because they were unfamiliar with the range available and whether they needed a nasal or full-face mask. Likewise, they lacked knowledge about what it was like to sleep with a mask on at night. They doubted whether a mask was appropriately fitted, as they had had nothing with which to compare. Mask leakage was one of the predominant complaints. The causes were, among other things, facial hair and lack of experience in adjusting the mask.
“It “farts” when you sweat and blow up your eyes” (female 45–49 years – adherent)
This resulted in sores on the bridge of the nose, noise and leakage, limited sleeping positions, and restless and interrupted sleep. Several male participants, but none of the female participants, described their partners being bothered by the sound and air from the mask.
Many of the participants experienced positive effects of CPAP treatment, such as more restful sleep, fewer nocturnal toilet visits, increased energy in daily life, increased desire for physical activity, better memory, and a sense of a better quality of life. Some also reported that CPAP treatment had reduced several of their other symptoms, such as headaches/migraines, restless legs, snoring, and fatigue.
“I feel like the light bulb has been fully plugged in now (female 45–49 years - adherent)
After starting CPAP, I have not had any headaches. If I couldn't feel an effect, I wouldn't have slept with it” (female 45–49 years - adherent)
A group of participants also felt that CPAP treatment had little or no effect. They described unchanged or increased fatigue. Despite this, none expressed a desire to discontinue CPAP treatment. Several attributed their motivation to continue due to their knowledge about the consequences of untreated OSA.
“The motivation is the risks of untreated sleep apnoea because I‘m a little disappointed with the effect on my fatigue” (male 65–69 years - adherent)
Despite describing the minimal treatment effect, some reported that their partners experienced the opposite: more energy in the participant.
Social impact of CPAP treatment
Many participants reported that CPAP treatment positively impacted their relationship with their partner. For example, they could now sleep together again as snoring was no longer a disturbance, and their evening energy levels were higher.
“Now I can sleep with my wife again, something I haven't been able to do for almost 1.5 years due to snoring” (male 60–64 years - low/non-adherent)
Other participants described the treatment as mentally challenging, affecting intimacy. They felt restricted in physical contact and closeness.
“It's tough. I don't put on the mask until the lights are out. I don't want to lie close to my husband with the mask on, I don't want him to come near me when I have it on” (female 35–39 years – adherent)
Other participants described limitations with other relatives to CPAP treatment, as the mask was perceived as scary for children or grandchildren.
Some participants with no partner described having doubts about introducing the CPAP machine to a future partner.
“New partner - I don't think it makes the chances better, but I also think that I used to snore a lot, which wasn't nice. This is a better alternative” (male 30–34 years – low/non-adherent)
Some participants expressed feeling the diagnosis of OSA and CPAP treatment was taboo.
“It's nice that there were others who knew about it, but I would also like to keep it to myself - I don't think it's anyone else's business what diseases I have or don't have” (male 30–34 years – low/non-adherent)
Almost all participants with good adherence described being open about their CPAP treatment with their family and friends. In the participants with low/non-adherence, openness about CPAP treatment was more varied. About half did not want or did not feel the need to talk to their family/friends about CPAP treatment. Some saw challenges in staying overnight outside and/or with others.
“I'm going to a summer house with some friends who don't know I have sleep apnoea - I'm already thinking about it” (female 35–39 years – adherent)
Information and support from the sleep clinic
The participants shared their experiences from the first visits to the sleep clinic regarding the professional support and information they had received and future ways of using support to succeed with the CPAP treatment. Generally, the participants assessed that the information they received at the clinic was sufficient and informative during medical and nursing consultations. Some described that it provided reassurance, while others emphasised the nurse's and doctor's ability to be positive, answer relevant questions, make practical suggestions, and take time for the individual, such as demonstrating sleep data on a PC screen and providing visual demonstrations by the doctor of the anatomy of the throat. All of the above factors impacted the initiation of treatment.
Topics not addressed during the initial conversation but important to participants included the long-term aim for CPAP treatment and the consequences of untreated sleep apnoea. Some participants wished they had received more information about how difficult it could be to adjust to CPAP treatment. Others were unsure if they had received the desired information or had forgotten it, such as about comorbidities, driver's license regulations, cleaning, mask selection, adherence requirements, and tele-monitoring.
“Ordering equipment and changing filters, it's definitely not information that has stuck with me if I have been told about it” (male 60–64 years, low/non-adherent)
Despite the valuable information, many found the situation overwhelming, and some described that they could not process more information. Other critical comments included feeling that the consultation with the doctor was too fast and that they were just a number in a queue.
Many of the participants were positive about the possibility of group consultations but not necessarily keen to participate themselves. Likewise, the participants had widely different desires for the composition of such a group. Some wanted to meet others of the same age and gender, so they were with like-minded people. Others thought the challenge would be the same whether they were 20 or 60 years old, in the workforce or not. However, everyone agreed that the group size should not exceed six people.
“Groups would not make a difference to me, of course, there may be some questions from other patients that you haven't thought of yourself” (male 65–69 years - adherent)
Participants with good adherence said they did not want or feel the need to participate in groups. Reasons included that it would be crossing a boundary, fear of not being heard or appearing dumb, keeping intimate questions to themselves, and exposing themselves.
“No one will ask dumb questions, no one will attract attention, no one will appear dumb, no one will ask embarrassing questions, no one will say what do I do when I want to have sex” (female 50–54 years - adherent)
In the first period after initiation of CPAP treatment, the participants were positive about telephone and email contact with the Sleep clinic, where it was easy for them to get in touch and receive quick responses. Many participants described these communication channels as a "lifeline" combined with the information from the distributed brochures.
“Ordering [CPAP spare parts] is simply top grade, I call the sleep clinic, and then I have it in my mailbox just as quick as the Postal Service could manage” (male 65–69 years - adherent)
At the follow-up check after 6–8 weeks, participants were satisfied with the opportunity to refresh healthcare information, ask additional questions after treatment initiation, and have the machine and mask reviewed again. Participants described these as factors that impacted whether treatment succeeded.
In general, most participants preferred physical consultations compared to virtual/phone contacts as they felt they would get more out of seeing and discussing their development in treatment sitting across from a healthcare professional rather than on a screen. Participants preferring virtual check-ins highlighted the benefits of avoiding the drive and taking time off work. However, virtual contact was only considered relevant when the treatment worked and there were no problems to discuss and only if the patients still had an opportunity to come into the sleep clinic in case of problems.
“Attendance is definitely an advantage, I had some things that needed adjusting, I want to see and hear the people I need to explain it to” (male 45–49 years - adherent)
Despite no specific questions during the interview, several participants focused on the need for other treatment options to CPAP. In particular, they inquired about treatment with dental appliances, weight loss, and possible surgery.
“Of course, I had hoped that I could just have surgery, but that was not the case” (male 30–34 years, low/non-adherent)