Research Article, J Sleep Disor Treat Care Vol: 5 Issue: 3
Barriers and Enablers to Successful Uptake of Continuous Positive Airway Pressure (CPAP) Treatment for Obstructive Sleep Apnoea for Aboriginal and Torres Strait Islander People
| Woods C1*, Usher K1, Kerr L2, Ferns J3 and Maguire G4 | |
| 1School of Health, University of New England, Australia | |
| 2James Cook University, College of Medicine and Dentistry Cairns Clinical School, Australia | |
| 3Cairns Hospital, Sleep Disorders Centre, Australia | |
| 4Health Services Laboratory, Baker IDI Heart and Diabetes Institute, Australia | |
| Corresponding author : Woods C, B Ed, PhD Senior Research Fellow, School of Health, University of New England, Armidale NSW 2351, Australia Tel: +61 2 6773 5762 Fax: +61 2 6773 3666 E-mail: cwood30@une. edu.au |
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| Received: May 02, 2016 Accepted: June 14, 2016 Published: June 21, 2016 | |
| Citation: Woods C, Usher K, Kerr L, Ferns J, Maguire G (2016) Barriers and Enablers to Successful Uptake of Continuous Positive Airway Pressure (CPAP) Treatment for Obstructive Sleep Apnoea for Aboriginal and Torres Strait Islander People. J Sleep Disor: Treat Care 5:3. doi:10.4172/2325-9639.1000179 |
Abstract
Background: This study is the first to engage Aboriginal Australian and/or Torres Strait Islander peoples (Indigenous Australians) to better understand their experience of treatment for obstructive sleep apnoea (OSA).
Objective: To explore Indigenous Australians’ experiences of continuous positive airway pressure (CPAP) treatment, enablers and barriers to CPAP therapy. Methods: A qualitative content analysis was employed. Data were collected by in-depth interviews with 12 Indigenous CPAP users.
Results: Lack of knowledge and a sense of shame influence Indigenous health care seeking related to OSA. Support from family and friends is an important factor in influencing the uptake of CPAP therapy and/or persistence with the treatment.
Conclusion: Raising awareness about the health risks of untreated OSA and the benefits of treatment will be an important first step for Indigenous Australians to recognise they have a medical condition and to seek treatment.
Keywords: Adherence; Compliance; Continuous positive airway pressure; CPAP; Indigenous populations; Obstructive sleep apnoea
Keywords |
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| Adherence; Compliance; Continuous positive airway pressure; CPAP; Indigenous populations; Obstructive sleep apnoea | |
Introduction |
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| Australia’s Indigenous peoples, Aboriginal and Torres Strait Islanders, face well-documented health disparities compared with non-indigenous Australians. Aboriginal and Torres Strait Islander people in Australia have premature mortality, a greater rate of hospitalisation, higher burden of disease, and more social disadvantage than other Australians [1,2]. Aboriginal and Torres Strait Islanders also have a high risk of premature death from chronic illnesses such as cardiovascular disease, cancer, and diabetes, and their life expectancy in general is substantially lower than non-Indigenous Australians [3]. Published data shows that Indigenous Australians are more obese compared to the non-indigenous population [4]. Given the prevalence of obesity, diabetes and renal disease in Indigenous communities, the potential population of Indigenous people with sleep-related breathing disorders and particularly obstructive sleep apnoea (OSA) warrants strategic planning to develop acceptable standards of adherence with treatment. | |
| OSA is characterised by repeated, intermittent partial or complete obstruction of the upper airway due to airway muscles relaxing during sleep resulting in brief awakenings from sleep caused by the effort to restart breathing. Recurrent arousals lead to reduced sleep quality. Consequences of untreated OSA include excessive daytime sleepiness, impairment of cognitive function, reduced health-related quality of life, depression, and increased risk of work or motor vehicle related accidents [5,6]. OSA is also associated with an increased risk of obesity, hypertension, heart disease, and stroke [5,6]. Given the association of OSA with obesity, and the increase in metabolic syndrome in Australia, the prevalence of OSA is expected to increase over the next decade [5]. | |
| Continuous positive airway pressure (CPAP) therapy is the most effective treatment for OSA, and has become the nonsurgical treatment of choice [7]. CPAP therapy has been shown to improve daytime alertness, cognitive function and well-being, decrease blood pressure, breathing disturbances, and reduce healthcare utilisation [8,9]. However, such benefits are reliant upon adequate use of CPAP therapy. Despite its efficacy, observational studies have found adherence to CPAP therapy is poor, with less than six hour of nightly use, resulting in less than optimal improvements in daytime functioning [10]. Furthermore, a significant proportion of patients diagnosed with OSA either does not initiate CPAP therapy or do not continue in the long term [11-13]. | |
| Previous studies have found adherence to CPAP therapy is related to older age, greater disease severity, higher socioeconomic status, moderate to severe subjective sleepiness prior to commencement of treatment, improvement in sleep, improvement in daytime functioning, and receiving positive information about CPAP therapy from family and/or friends [11,13-16]. | |
| Barriers to the uptake of CPAP therapy include initial problems at titration, dislike or discomfort with the apparatus, a sense of claustrophobia using the mask, anxiety, a perceived lack of benefit and/or side effects, nasal discomfort, and the expense of the equipment [11,13,16,17]. Enablers include sleep quality during titration, improved subjective sleepiness, support from family, family and/or friends’ positive experiences using CPAP, and the perception that the benefits of CPAP outweigh side effects [11,13,14,16,17]. | |
| While previous studies have assessed the long-term use and benefits of CPAP therapy in non-Indigenous populations, there are no published studies of Indigenous Australians’ CPAP use apart from Saunders’ [18] brief case studies of challenges and enablers of CPAP usage for northern Australian Indigenous patients. Saunders identified cost as a barrier, and understanding and social support, and regular initial follow-up combined with positive reinforcement as enablers to successful CPAP usage [18]. | |
| Although there is no published literature available about Indigenous Australians’ use and adherence to CPAP therapy, previous studies have explored perceptions of medication adherence within Aboriginal populations. Indigenous Health Workers in New South Wales ascribed poor medication adherence to literacy, and medicine information that is difficult to understand and culturally inappropriate [19] and Australian renal specialists subjectively identified Indigenous patients as non-compliers with dialysis, dietary control and multiple medications [20]. | |
| A recent study found regional and remote Australian residents accessed diagnostic sleep studies at a rate less than Australia overall, likely due to Indigeneity, remote residence, environmental factors, and low awareness of sleep health [21]. Diagnosis of OSA is only the first step, after which patient and family education and support following a diagnosis are necessary to ensure Indigenous people can successfully transition to CPAP therapy. To achieve this goal, a greater understanding of enablers and barriers to Indigenous CPAP therapy is required. | |
| To our knowledge, this is the first qualitative study that has engaged Aboriginal and/or Torres Strait Islander people to better understand the experience of CPAP, identify facilitators and barriers to CPAP use, to identify any specific Indigenous issues that may impact on use, and to elicit suggestions for providing support during early experiences of treatment. Exploring the perspectives and experiences of Indigenous Australians regarding OSA and CPAP is critical to informing policies and protocols regarding CPAP education and follow-up with Indigenous Australians. Qualitative methods using in-depth interviews complement existing empirical research that has investigated these factors in non-Indigenous populations and adds a more in-depth and personal perspective to important issues surrounding Indigenous Australian sleep-related breathing disorder treatment and CPAP usage.c | |
Methods |
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| Setting | |
| The study site was the hospital-based Sleep Disorders Centre in Cairns Hospital in northern Australia. The Cairns and Hinterland Hospital and Health Service (CHHHS) cover an area of 141,000 square kilometres [22]. Cairns Hospital serves a population of approximately 250,000 people with a significant proportion of Aboriginal and Torres Strait Islander people (15% of the hospital catchment population are Indigenous Australians [23], compared with 3.6% in all of Queensland, and 2.5% for Australia overall [24]). Approximately 204 diagnostic polysomnography studies are performed each year at Cairns Hospital; an average of 20 of these studies are for Indigenous patients [J. Ferns, personal communication, August 5, 2013]. All Queensland residents in receipt of a welfare payment or a lowincome concession card, diagnosed with moderate to severe OSA and prescribed CPAP treatment, are eligible for a government-provided CPAP machine but patients must purchase the mask and tubing. | |
| Current practice at the Cairns Hospital Sleep Disorders Centre includes patient education and an explanation of why CPAP is required during the CPAP Titration sleep study conducted by the Sleep Technologists. Patients are provided with encouragement, advice and support on the first night of CPAP commencement. During the study night the appropriate mask and pressure are determined and the following morning an information pack is given to the patient with brochures regarding treatment, where to source masks and also the Sleep Scientist’s contact number if patients have any questions regarding their treatment. After the patient has hired a CPAP device for 2 months and has sourced a mask they will then be followed up by a Sleep Specialist who will discuss how the treatment is going, offer any further advice and arrange for a Queensland Health (QH) CPAP device to be issued if the patient is eligible. Upon issue of the QH CPAP device, the Sleep Scientist again explains the importance of using CPAP, how to operate the device, cleaning and maintenance (brochure) and provides a contact number if there are any questions about treatment or any problems with the CPAP device. Family members are included during the CPAP issue appointments, and ongoing support from the Sleep Disorders Centre staff and Sleep Scientist is given to all QH patients. Recently there has been an improvement in funding sources for masks and consumables in Queensland which were not available when some of these patients were issued with their CPAP devices up to nine years ago. | |
| Study participants | |
| Participants were recruited from the Cairns Hospital Sleep Disorders Centre between May and September 2015. The researchers were provided with a list of Aboriginal and/or Torres Strait Islander patients who had undergone a sleep study over the previous 10 years. The researchers compared the list with the Sleep Disorders Centre records to determine which patients had been issued with or purchased a CPAP machine. Phone numbers of patients with a CPAP machine were recorded and patients were later contacted by one of the researchers (LK) and invited to participate in the study. For patients who agreed to participate, a home visit was arranged for those living in the local area, whereas a telephone interview was arranged for patients who lived in a rural or remote area. Inclusion criteria were Aboriginal and/or Torres Strait Islander patients aged over 18 years of age and currently treated for OSA with CPAP. Ethics approval was obtained from the Cairns and Hinterland Hospital and Health Service Human Research Ethics Committee (HREC) and the James Cook University HREC. | |
| Participants were 12 Aboriginal and/or Torres Strait Islander people who have undergone a sleep study at Cairns Hospital, been diagnosed with moderate to severe OSA, and been issued with or purchased a CPAP machine at least six months prior to interview. Five participants were male and seven female. Participants were aged between 43 and 74 years, with a mean age of 60. | |
| Data collection and analyses | |
| Twelve individual interviews were conducted between May and September 2015 until data saturation and thematic redundancy was achieved. Interviews were semi-structured using open-ended questions which allowed the interviewer to follow interesting or atypical topics that arose during the interviews. Each interview lasted approximately 30 minutes. Nine of the interviews were conducted face-to-face and three were conducted by telephone. The interviews were audio recorded, transcribed verbatim and coded using the qualitative software package NVivo. Demographic information (age and gender), information about self-reported CPAP use, and barriers and enablers for CPAP use were collected. | |
| Qualitative content analysis was employed in order to provide knowledge and understanding of Indigenous patients’ experiences of OSA and CPAP use without imposing preconceived categories [25-27]. The advantage of using this method of data analysis is it is “based on participants’ unique perspectives and is grounded in the actual data” [25, p. 1280]. Each transcript was read several times, looking for key thoughts and concepts in the data. Open coding was completed on three transcripts using preliminary codes. The remaining transcripts were coded using these codes and new codes were added as necessary. Once all transcripts had been coded, codes were grouped into higherorder categories to collapse data with similar meaning. This was done by the first author (CW), and any uncertainties or ambiguities were discussed with another author (KU). Together, the two authors ensured that the coding represented the meaning units and the text as a whole. The categories were then abstracted and described with a content-based code. The categories are described as a summary of the participants’ statements, and representative quotes were identified that best reflect the statements. | |
Results |
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| Five themes were identified from the interview data: quality of life before CPAP; use of the CPAP machine; enablers to using CPAP; barriers to using CPAP; and specific Indigenous issues. | |
| Quality of life before CPAP | |
| All 12 patients expressed the negative effects of OSA symptoms prior to attending a sleep study and receiving a diagnosis (Table 1). Patients spoke about how OSA affected their quality of life by leaving them excessively tired, reducing their energy levels, causing physical symptoms, and disrupting their sleep. Disrupted sleep contributed to patients falling asleep at inappropriate times. Participants who had a bed partner reported apnoeas (cessation of breathing) and snoring more frequently than those who slept alone. | |
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Table 1: Effects of OSA prior to diagnosis. |
| The main symptoms participants reported were constantly feeling tired, falling asleep at work, while driving, on a bus, at the cinema, during social situations, watching television, or just sitting down, and witnessed apnoeas. Participants tried to cope with the excessive daytime sleepiness by having a rest or taking a nap through the day, and in the case of driving, drinking coffee and stopping to walk around to stay awake. Participants endured these symptoms until friends or family convinced them to see a doctor or when they reached a critical point where it was interfering with their life or becoming dangerous. One participant spoke about the situation that prompted her to see a doctor about her excessive daytime sleepiness, | |
| I was falling asleep everywhere. At the bus stop I’d fall asleep and I’d miss my bus. Always fall asleep in the bus and missed my stop off point. The crunch came, I was doing teacher’s aide work and I was standing at the back of the class and I said, went to sleep standing up – collapsed. (Female, age 47) | |
| Another participant spoke about how his excessive daytime sleepiness was affecting his work, which motivated him to see a doctor, | |
| I used to work on the council and I used to fall to sleep when doing some work. And I said, ‘I gotta do something about it’ so I come down and see the - I seen the doctor and they referred me down to this sleep, the unit down here to run some tests. (Male, age 57) | |
| Use of CPAP machine | |
| Nine of the 12 participants reported using their CPAP machine every night. One participant who did not use his CPAP machine regularly was unable to properly calibrate the machine to suit his breathing. However, he did use the CPAP machine if he felt short of breath, until he could breathe properly again. One participant stopped using it while she had a cold and has not started again, and another went on holidays and forgot her machine, and reported she has not started using it again since returning because the symptoms have not returned. All other participants reported using their CPAP machine every night for the entire time they sleep and some also reported using it for naps or to relieve fatigue; “Every time – if I have a sleep during the day and I’m at home, I use it then as well.” (Female, age 43) | |
| …if a person is able to have a nap – doesn’t necessarily even have to be a nap I think you just have to get on the tank- I call it the tank, get on the tank for even fifteen, twenty minutes during the day, to help give you a top-up. (Female, age 47) | |
| Enablers to using CPAP | |
| Participants reported various positive initial experiences after using CPAP for the first time. The changes in participants’ quality of life after using a CPAP machine were remarkable and in some cases life changing. All participants reported improvements in sleep and mood and feeling refreshed in the morning with more energy during the day. After suffering excessive daytime sleepiness for a long period of time, participants acutely felt the changes after their initial use of a CPAP machine. These improvements were motivations to continue using CPAP, | |
| I feel fresh as a daisy. Energy – more energy. Plenty energy!...It was very good. I was waking up jumping out of bed and all that sort of thing you know, running up and down the corridor. (Male, age 61) | |
| …I thought, ‘oh, this is great!’ You know when I left there I was so on cloud nine you know? I was on cloud nine I was. I feel changed you know…I used to feel sleepy and tired and all that but since I had that machine, all that gone away because I feel a different person again. (Male, age 63) | |
| After using the CPAP machine, participants reported they no longer snore or wake through the night, and no longer fall asleep through the day, “But every night I go to sleep I snore just before. But now I don’t snore at all now.” (Female, age 52) | |
| The only thing I can say is that at least I have a good night’s sleep and uh...it won’t hurt anybody to get it because it helps you. Because sometime when we sleep we get up say in the middle of the night or two or three o’clock in the morning and can’t go back to sleep. But this mask makes you sleep right through until...almost six o’clock in the morning. (Female, age 70) | |
| Moreover, those who had physical symptoms related to OSA reported they no longer experienced them, “Well it stopped me from snoring, yeah. And then I don’t get sinus you know? Never get sinus now I use the mask, yeah.” (Female age 70) | |
| ..it took a little while for my joints to stop aching um...and that was only because without the machine, I was constantly turning throughout the night and my joints just weren’t resting...Oh my migraines aren’t as severe now. (Female, age 43) | |
| These changes have had a profound effect on participants’ quality of life and motivate them to keep using their CPAP machine. One participant described it as a second chance at life, “And it’s a good thing to have in your life. It’s just a second chance I reckon.” (Male, age 60) | |
| Barriers to using CPAP | |
| For mouth breathers, a dry mouth was an issue, and mask leakage was also a problem. For one participant, a feeling of claustrophobia, anxiety and panic attacks resulted in variable used of her CPAP machine for five years until she learned to control her panic and understand that she was not going to be harmed or suffocate, | |
| I kept on having anxiety attacks. Something attached to my face – waking up with something attached to [unclear]. I say it took me quite a while. It just took so long to get used to it. I’m okay now but oh...yeah it went on for ages. Getting used to it, you know. And half the time I didn’t use it because of that? Um...yeah so the first five years I reckon was really up and down. (Female, age 47) | |
| Several participants were anxious about power outages or interruptions that will stop their CPAP machine and leave them breathing stale air all night. Incorrect pressure settings were reported as a barrier. One participant experienced air rushing in so fast he thought he might not be able to breathe properly. However, an adjustment of his machine corrected the problem. Difficulties changing sleeping positions or sleeping on one’s side or stomach were also initial barriers to CPAP use. | |
| Cost of CPAP | |
| Although the majority of participants were issued with a machine at no cost due to their pensioner or low-income status, some were hiring a machine or had purchased a second-hand machine. Six participants commented on the cost of the CPAP machine or the cost of parts such as the filters, tubing or masks. The costs were a barrier for people on a limited income but most participants recognised that future costs would be incurred and made plans to meet these costs, | |
| But the only thing is the parts that you gotta replace all the time is a bit expensive. You know for a pensioner but you gotta save before that time, then you can afford to get it straight away. (Male, age 60) | |
| For a majority of participants, the cost of the CPAP machine would have been a barrier without government funding, | |
| Well the tube is about twenty dollars but all the other thingsthat little plastic mask in there, that’s sixty dollars. Then the whole set is about three hundred dollars. And the machine...it’s about two grand!... Oh you’ve just gotta save it – put the money aside for it. (Male, age 71) | |
| In the majority of cases, participants were not aware of healthcare organisations that have funding to provide free masks and tubing to low income Indigenous clients. The interviewer was able to provide this information to participants. One participant was aware of a source of available funding for CPAP equipment, | |
| I’m just grateful for the Closing the Gap program because before that, you know we had to do everything on our own – with the cost, on our own and that was really expensive. I found that really hard. Being my own- I live by myself so I’m- no-one to support me or to back me up sort of stuff. My kids are still at uni so um...yeah so I found that-so I’m really grateful that I’ve accessed that. (Female, age 47) | |
| Issues that are specific to Indigenous Australians | |
| When participants were asked about what could make it easier for Indigenous people to begin using a CPAP machine, a fear of using a machine or device to assist breathing was expressed as an issue, | |
| I find that with that CPAP machine...or somebody who really needs it are afraid to use it, they should just go and use it, get the feel of it. Especially Indigenous people. They’re scared of these sorts of things you know? They think oh they might get electrocuted or you know, won’t wake up again. (Male, age 60) | |
| The same participant recommended holding regular workshops for new Indigenous CPAP users and inviting Indigenous guest speakers who were current users of CPAP to explain how to use the machine, how to care for it, and explain the benefits of using it. | |
| Two participants agreed that there was a certain amount of embarrassment and shame associated with OSA. Although sleep disorders were prevalent within the two participants’ families, it seems to be a subject that is not spoken about among Indigenous families, | |
| Everyone just put it down to arthritis, yeah. Um...but it wasn’t until I-I got it [CPAP machine] that I started asking questions that another family member said that he suffers from sleep apnoea and then another one suffers from it so...yeah. It was sort of like one of those...not talked about things. (Female, age 43) | |
| Several participants also commented on a lack of knowledge among Indigenous people about sleep disorders in general and CPAP machines. Two participants felt there was a lack of accessible, readily understandable information for Indigenous people about obstructive sleep apnoea, and the concept of treatment with devices and their ongoing care was not common amongst Indigenous people, | |
| I guess just making it more, the information more understandable. Uh a lot of being aboriginal, a lot of the aboriginal people I speak to they, a lot of them don’t know anything about it so...yeah, they find it weird when you got to go to sleep with a mask on your face. Um... but yeah it’s...when I tell them the benefits there- they’ll- well I’ll talk to my doctor about it because you know, they complain about waking up tired and that so...yeah um, just making that information more accessible. (Female, age 43) | |
| Another patient had difficulty understanding how to use the CPAP machine and how to care for it, but with support from her daughter she was able to gain a greater understanding of how to use the CPAP machine. Nonetheless, she still required further education on care of the CPAP machine: | |
| Mmm, I couldn’t understand it, but my daughter was there with me and um...she took notice of what machine hey? And she’d tell me, ‘do this and that.’ But I’m stuck on one thing. I don’t know how to clean the filter. (Female, age 52) | |
| Indigenous patients on the whole felt that they received adequate education about how to use and care for their CPAP machine. However, a majority of patients were unaware of funding that was available to assist them with the purchase of masks and tubing. One participant commented on the assistance she received from the Medicare Local Indigenous representative, who took her to her local pharmacy which had been allocated funding for sleep apnoea equipment. The pharmacist provided education and support through the ‘Closing the Gap’ scheme, which was appreciated because the participant did not need to make an appointment or wait to see someone, and could come back and ask advice at any time. | |
| Support played an essential role for Indigenous participants. Support included family encouragement to initially see a doctor for OSA symptoms, support to use and maintain the CPAP machine, and support from a pharmacist for education and advice. | |
Discussion |
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| To our knowledge, this is the first study to explore Indigenous Australians’ experiences of CPAP therapy and their perception of the barriers and enablers to CPAP use. Many barriers prevent Indigenous Australians from accessing health services in general [28]. Our findings suggest that Indigenous Australians lack knowledge and awareness about OSA and the concept of using a machine or device to assist breathing. | |
| A previous study reported that health consequences of sleep apnea such as fatigue, daytime sleepiness, hypertension and cardiovascular implications are not commonly known among non-Indigenous Australians [29]. It is likely this is also the case for Indigenous Australians who are also likely to lack knowledge and understanding of sleep-related breathing disorders. If Indigenous Australians lack knowledge and understanding of OSA, and its importance and potential consequences, they are unlikely to access appropriate referral and diagnostic services. This finding has important implications given the high burden of chronic non-communicable diseases experienced by Indigenous Australians and the link between many of these and OSA [2]. | |
| Interview data also indicate Indigenous Australians tolerated a more severe degree of symptoms and for a long duration of time before seeking medical advice. Previous studies have reported that Indigenous Australians delay seeking health care for other conditions until symptoms are severe [30,31] but the reasons for this are not always clear. Access to health care services in rural and remote Australia (transport, accommodation and costs) may be a particular factor contributing to this delay [28,32]. Apart from accessibility issues it has been suggested other factors contributing to delay in seeking medical care may include mistrust of health services based on previous experiences of poor communication, judgement, negative stereotyping, blame, fear of doctors and hospitals, exclusion of families and carers in health care planning, lack of staff cultural awareness, racism, and choosing not to see a non-Indigenous doctor [28,30,32,33]. An additional factor associated with delay in seeking health care in non-Indigenous people has been the perception that the problem is not serious [34]. | |
| Whilst a range of factors may be responsible for delay in seeking health care it is also clear this can in turn be associated with poorer health outcomes, thus reducing such delays is particularly important. For Indigenous Australians these barriers may not be comparable to those identified in non-Indigenous Australians and/or may also not be responsive to similar interventions. | |
| We have highlighted that a level of shame or embarrassment about sleep disorders may be an important contributing factors to treatment delay in an Indigenous Australian setting. Sleep disorders and treatment are not a topic that is commonly spoken about, even within families. In Aboriginal culture, shame is associated with issues that are embarrassing, private, have a social stigma, or negative connotations [28,35]. The concept of shame in an Indigenous context is typically broader than the non-Indigenous use of the word. Among Indigenous people, shame can extend to include embarrassment resulting from situations that non-Indigenous people may not feel uncomfortable about [36]. Shame, and a corresponding feeling of embarrassment, can result in a reluctance to talk about personal or private issues [35]. Studies have reported shame or embarrassment has caused treatment seeking delays for conditions such as cancer [37-39], incontinence [40], mental health issues [41,42], and chronic diseases [30] in Indigenous and non-Indigenous people, but we could not locate any published studies about shame or embarrassment and treatment seeking delays for OSA. | |
| Providing education to Indigenous Australians and their communities about the symptoms and health risks of untreated OSA and the benefits of treatment is likely to be an important first step to improving the overall health, particularly sleep health, of Indigenous Australians. However, education in an Indigenous Australian context about health issues can require consideration of additional issues not encountered in a non-Indigenous Australian setting. These include boundaries informing the context in which health issues can and cannot be discussed, such as ‘shame’ and ‘men’s business’ and ‘women’s business’ [28]. Some Indigenous cultural views and beliefs do not allow discussion of health matters with members of the opposite sex, or to see a health service provider of a different gender [28,35]. Therefore, providing health education in Indigenous Australian communities in relation to sleep disorders and their treatment will require an understanding of cultural norms and a respect for local cultural protocols. | |
| Despite such barriers, study participants recommended holding regular workshops as an enabler for new Indigenous CPAP users, to address the challenges and concerns new users may have. Such a program could provide education about OSA and CPAP, invite Indigenous guest speakers to conduct demonstrations of how to use and care for a CPAP machine, provide follow-up and support to new users, give new users information about available funding for CPAP consumables (masks and tubing), and answer questions and address concerns. Given the additional issues of remoteness and the relatively small and dispersed Indigenous Australian population (accounting for 3% of the total Australian population) [43] the use of internetbased resources and web-based seminars (‘webinars’) in addition to face-to-face interaction is likely to allow broader uptake of such initiatives. The key will be addressing challenges and concerns early as this is critical for successful long-term CPAP use [29,44,45]. | |
| Family support was identified as an enabler to diagnosis and treatment of sleep disorders. For Indigenous people, family is especially important, and an extended family system is highly valued. Indigenous peoples’ families play an important role in assisting them to manage their health [32,46]. Support from family and friends was important in encouraging Indigenous patients to seek medical help for their condition, in accompanying the patient to appointments so later advice and information can be shared on how to use and care for the CPAP machine, and encouraging patients to use the CPAP machine regularly. This finding supports Saunders’ claim that social support can overcome barriers to successful CPAP use [18]. Support from a pharmacist can also motivate Indigenous Australians to persevere through the difficult adjustment period when commencing CPAP treatment therapy. Given issues of access, support from a range of health care services including primary care, specialist sleep, respiratory/sleep scientists and technicians, nurses, and allied health such as pharmacists is likely to be more successful than relying on a single service alone. Our findings also support prior studies that report positive emotional and instrumental family/spousal support as a facilitator to successful CPAP use [29,47-49]. | |
Limitations |
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| This study has several limitations. Participants were a convenience sample who resided in one hospital and health service district, and had all attended the same sleep disorders clinic, thus results may not be generalizable to other regions in Australia. This study also relied on self-reported CPAP use and did not objectively measure use to validate CPAP uptake. Although data saturation was achieved, the sample size was also small. Nonetheless the issues raised tend to reflect broader studies of health care access and sleep disorder treatment suggesting our findings are likely to be generalizable to the broader Indigenous Australian population. | |
Conclusion |
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| Barriers to Indigenous Australians' successful uptake of CPAP include a lack knowledge and understanding of sleep-related breathing disorders and their health consequences. This lack of knowledge can lead to Indigenous Australians enduring severe symptoms for a long duration of time before seeking medical consultation. Cultural issues such as shame can also be a barrier preventing Indigenous people from talking about sensitive health issues with family members or a health care provider. The concept of using a machine or device to assist breathing is not common among Indigenous people makes this a particularly confronting and unusual experience for those requiring treatment. | |
| Raising awareness through education about the symptoms and health risks of untreated OSA and the benefits of treatment will be an important first step for Indigenous Australians to recognise and understand they have a medical condition and to seek treatment. Working with community-based primary health care providers and services will be key to achieving this. | |
| Enablers to successful CPAP use were support from family, friends, staff at the Sleep Disorders Centre, pharmacists, and health services funded to provide free CPAP machine consumables (masks and tubing). Participants recommended regular workshops as an enabler for new CPAP users to learn how to use and maintain the CPAP machine correctly, to answer any questions, and to address challenges and concerns early. Given the relatively small and dispersed Indigenous Australian population the development of internet-based resources and web-based seminars in addition to faceto- face interaction is likely to be required. | |
Recommendations |
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| At the initial appointment, when Indigenous patients are issued with a CPAP machine, it appears that the information and education provided can sometimes be overwhelming or not culturally appropriate for some patients. A plain language booklet that patients could take home and read at their leisure, with photographs depicting the steps necessary to use, clean and maintain their CPAP machine, would be beneficial for the majority of patients, Indigenous or non- Indigenous. Where possible the development of culturally and linguistically appropriate audio-visual resources would address issues relating to literacy and understanding of English. | |
| A follow-up phone call or home visit from a respiratory educator in the first week of CPAP use could help to mitigate initial problems adjusting to the CPAP machine, and provide the support and encouragement necessary for patients to persevere with initial issues such as discomfort, embarrassment, claustrophobia, and an adjusted sleeping position. For remote sites a telehealth consultation via the local primary health care service may facilitate this process. | |
| Indigenous patients would also benefit from a CPAP educational workshop to show them how to care for and maintain their machine, with current Indigenous CPAP users. | |
Funding |
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| This study was supported by a research grant from the Centre for Nursing and Midwifery Research (CNMR). The authors report no other financial affiliation or relationship relevant to the subject of the article. | |
Acknowledgments |
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| The authors wish to thank the participants of this study for sharing their experiences. | |
References |
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