ESRC Medicated Sleep and Wakefulness Project:
A Social Scientific Study of Stakeholder Interests,
Policies and Practices
Report of Findings on Obstructive Sleep Apnoea
February 2016
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Contents
Introduction: The Sociology of Sleep
About the project
The participants
What we asked
Our findings
1. Illness Experience
2. Managing sleep and wakefulness
a. Transformation through technology
b. Prescription medications
c. Non-medical strategies for managing sleep and
promote alertness
3. Conclusions and Implications
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Introduction: The Sociology of Sleep
Sleep, in one form or another, is a biological necessity for all living creatures. While the exact functions of
sleep are still being determined and debated in the scientific community, the effects of going without sleep
for extended periods of time have been fairly well characterised. Getting enough sleep is regarded as
essential for our health and wellbeing and short sleep on a regular basis has been associated with the
development a range of serious health problems, from obesity to cancer (Cappuccio et al. 2008, Thompson
et al. 2011). Sleep deprivation has been associated with impaired cognitive performance, decreased
productivity in the workplace and an increase in accidents and errors (Alhola and Polo-Kantola 2007,
Barger et al. 2005, Gaba and Howard 2002), highlighting the social costs and consequences of poor sleep.
Concerns have been raised that, as we move further towards a global 24/7 society, the length of time we
spend sleeping is being curtailed in favour of waking activities and social opportunities (Williams 2011).
Studies have found that although people do value sleep and link it to their general wellbeing, at the same
time, sleep is often not given priority, instead being viewed as a ‘disposable resource’ or ‘expendable
luxury’ (Dzaja et al. 2005: 69–70). Sleep deprivation is thought to be commonplace in contemporary
western societies and it is frequently claimed that, on average, sleep duration is declining.
One cause of sleep deprivation is sleep apnoea. Sleep apnoea is the most common and widely studied sleepdisordered breathing syndrome within sleep medicine. It is characterised by weight gain, heavy snoring and
excessive daytime sleepiness. Whilst asleep an individual stops breathing for short periods which may result
in them gasping for breath. Continuous Positive Airway Pressure (CPAP) machines, which consist of a face
mask and tube that supplies a consistent flow of air to the user, are the treatment of choice for this
condition. Before CPAP, the standard treatment of sleep apnoea was tracheostomy. CPAP is thought to be of
great clinical value and studies have shown that it improves subjective measurements of daytime sleepiness,
blood pressure and quality of life (cf. Moreira, 2006). However, there are also problems with using the
machine and a whole wealth of clinical literature around “non-compliance”. The problem of non-compliance
with machine- use is thought to be correlated with the severity of the OSA and the patient’s beliefs about its
benefits. Common problems reported include discomfort, leaks, mouth dryness, claustrophobia,
inconvenience due to the noise of the machine and loss of intimacy with partners (Moreira, 2006).
Studies in the sociology of sleep acknowledge that sleep takes place within a social context which influences
the social patterning of sleep throughout the life course. While sociological studies have established
theoretical underpinnings and a research agenda for the sociology of sleep, very few empirical studies focus
specifically on the relationship between the social context of sleep and the impacts of sleep apnoea.
In a review of 12 studies that investigated the impact of sleep disturbance or sleep disorders on relationship
functioning, Troxel et al (2007) argue that sleeping with a partner who has OSA has an adverse effect on the
couple’s relationship functioning. They also discuss a 2007 study which found that using CPAP improved sleep
efficiency in both the patient and their bed partner (Beninati et al, 1999, cited in Troxel et al., 2007). They
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conclude that the limited evidence available suggests that marital quality improves with the treatment of
OSA. They argue that conceptualising sleep disorders from a dyadic perspective is likely to be of benefit to
both the patient and their partner, by validating both parties sleep needs and providing a greater incentive to
both initiate and maintain treatment. Other studies have reported similar findings. For instance, Baron et al
(2008) found that following three months of CPAP treatment, patients reported decreased marital conflict in
addition to decreased sleepiness, depression and functional impairment.
As one part of a study examining sleep within couples, Venn (2007) analyses the gendered nature and
implications of snoring, a common symptom of sleep apnoea. She found a gendered conception of snoring
in her data and argues that this can be problematic for women snorers. The men who were interviewed for
Venn’s (2008) study discussed their snoring openly, without showing embarrassment or awkwardness, and
were non-apologetic about snoring. The women on the other hand, considered snoring to be “unfeminine”
and felt embarrassed and stigmatised by their snoring, which was compounded by their partners sharing
information about their snoring with others. She concludes that the ‘problem’ of snoring is often left to the
partner, whose sleep is disrupted, rather than the snorer, to deal with. Strategies developed for coping
with snoring that were reported by couples interviewed for the study included: prodding and nudging,
passivity and relocating to sleep in another room. Sociological research into experiences of and
expectations about sleep alerts us to how the broader social context may influence sleep. Although there
is much research to show that one's lifestyle can have a significant influence on sleep duration and sleep
quality, very few qualitative empirical studies have been conducted that focus specifically on the
relationship between social context and subjective and embodied experiences of sleep. The aim of this
study was to conduct an in-depth and qualitative analysis of the sleeping practices and subjective
experiences of sleep across different social groups.
References
Alhola, P., & Polo-Kantola, P. (2007). Sleep deprivation: Impact on cognitive performance. Neuropsychiatric
Disease & Treatment, 3(5), 553–567.
Barger, L.K., Cade, B.E., Ayas, N.T., et al. (2005). Extended work shifts and the risk of motor vehicle crashes
among interns. New England Journal of Medicine, 352, 125–34.
Baron, K.G., Smith, T.W., Czajkowski, L.A., Gunn, H.E., & Jones, C.R. (2009) Relationship quality and CPAP
adherence in patients with Obstructive Sleep Apnea. Behavioural Sleep Medicine, 7(1) 22-36.
Cappuccio, F.P., Taggart, F.M., Kandala, N.B., Currie, A., Peile, E., Stranges, S., & Miller, M.A. (2008). Metaanalysis of short sleep duration and obesity in children and adults. Sleep, 31(5), 619-626.
Dzaja, A., Arber, S., Hislop, J. et al. (2005). Women’s sleep in health and disease. Journal of Psychiatric
Research, 39(1), 55-76.
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Gaba D.M. & Howard SK (2002) Fatigue among clinicians and the safety of patients. New England Journal
of Medicine, 347, 1249–55.
Moreira, T. (2006) Sleep, health and the dynamics of biomedicine. Social Science & Medicine 63(1), 54-63.
Moreira, T. (2008) Continuous positive airway pressure machines and the work of coordinating technologies
at home. Chronic illness, 4(2), 102-9.
Stoller, E.P., Papp, K.K., Aikens, J.E., Erokwu, B., & Strohl, K.P. (2009). Strategies resident-physicians use to
manage sleep loss and fatigue. Medical Education Online, eISSN 1087-2981.
Troxel, W.M., Robles, T.F., Hall, M., & Buysse, D.J. (2007). Marital quality and the marital bed: examining the
covariation between relationship quality and sleep. Sleep medicine reviews, 11(5), 389-404.
Venn, S (2007) ‘It's Okay for a Man to Snore': The Influence of Gender on Sleep Disruption in Couples
Sociological Research Online 12 (5) doi:10.5153/sro.1607.
Williams, S.J (2011). The Politics of Sleep: Governing (Un)consciousness in the Late Modern Age. Basingstoke:
Palgrave Macmillan.
About the project
The Medicated Sleep and Wakefulness Project is a social scientific investigation of developments and
debates regarding the role of sleep medication in Britain today. The research examined issues regarding
the medical, social and personal management of sleep problems with particular reference to the roles,
meanings and uses of pharmaceuticals in everyday/night life. This involved multiple methods, including
documentary research, interviews, and focus groups with key stakeholders in the field. Eighteen
interviews were held with scientists and clinicians, pharmacologists, General Practitioners and
representatives of patient organisations. A total of 99 people across 23 focus groups also took part in the
study.
The research project was funded by the Economic and Social Research Council (ESRC) and ran from April
2011 to May 2014. It was based in the Department of Sociology at the University of Warwick, and
undertaken in conjunction with Royal Holloway, University of London and Kings College London. The
research was led by Professor Jonathan Gabe. Other members of the research team were Professor
Simon Williams, Professor John Abraham and Dr. Catherine Coveney.
The participants
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As part of the larger study, three focus groups were held with 13 patients recruited from the Oxford
Centre for Respiratory Medicine in October 2011. Data contained within this report are based on the
responses of these participants. Numbers are small, so we are not claiming that they are representative
of sleep apnoea patients in general. However, they do raise some interesting issues about the social
context of sleep and the impacts of sleep apnoea.
The identity of all participants has been anonymised and remains confidential. Participants have been
assigned with an alpha - numerical code to identify them. This identifies which focus group they took part
in, their gender and the order they first spoke during the session. For example, FG1 M1 identifies the first
male participant who spoke during focus group 1.
Participants from the Oxford Centre for Respiratory Medicine were aged 45 – 74. Eight were male and
five female. All identified as being of White British ethnicity.
Ten respondents indicated that their occupation was higher managerial/professional, one was employed
in an intermediate occupation and two were in technical or craft jobs. Four of the participants said that
they were currently using, or had in the past, used over-the-counter (OTC) or prescription medications to
help them sleep.
What we asked
During the focus groups participants were asked to discuss the following topics:
1. Expectations around and experiences of sleep
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Understandings and expectations around sleep – what sleep is for, what good sleep is, how
important sleep is to them
Their experiences of sleep, sleepiness and sleep problems
2. Managing sleep and wakefulness
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Managing sleep and wakefulness in daily life – pharmacological and non-pharmacological strategies
Relationships with medications and/or other medical technologies – accepting/resisting medicine or
CPAP machines.
Seeking information and advice
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3. Attitudes towards the uses of sleep and wakefulness therapies
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Moral judgements and discourses used to evaluate therapies
Non-medical/ lifestyle uses – social and ethical issues
Our findings
1. The illness experience
SWAFG1F1.. I’ve only recently been diagnosed but have suffered with it for
quite some time I think....I think I’ve always been a bit of a snorer, if I’m
honest, my grandfather thought it was a wild animal in the bushes at one
stage, so I think it’s hereditary. Just I could no longer operate, my day was a
nightmare, woke up exhausted. Looked at the computer for five minutes,
wanted to fall asleep, couldn’t drive anywhere, falling asleep all the time even
when talking to people. It was horrific actually.
SAFG2M3.. One of the things that I enjoyed on a Saturday morning, I travel a
lot during the week is, is just sit down and read a book, and within a minute of
picking a book up I’d fall asleep. And I was starting to put on weight very
dramatically and the crunch then was when my wife started saying “you’ve no
interest in me anymore, you know, we don’t do things together anymore, you
can’t be bothered to go for a walk with me, you can’t be, just normal everyday
things...” I just hadn’t the energy or the get up and go to do anything...
SAFG2F1.. It’s the pure exhaustion, isn’t it?
SAFG2M3 Total exhaustion. And I went to doc and doc sent me to the sleep
clinic... Once I was brought back for the results they told me they didn’t know
how I was even operating because I woke up or stopped breathing 579 times.
Participants described being exhausted all the time but being unsure what was wrong with them. Partners
or other family members were often the ones who pushed them to see their GP in first instance. Often this
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was prompted by the patient snoring to such an extent that it kept a partner awake at night. In other cases
partners complained that the participant’s constant feeling of exhaustion was damaging their relationship.
Some had problems with getting GPs to refer them to a sleep clinic. In one case a participant had already
had an operation on their throat and had been tested were for lots of other conditions such as depression
and diabetes before being diagnosed with OSA. When they did get a diagnosis they described feeling hugely
relieved that they now knew what was wrong with them and that it was “not serious”. It was generally
viewed as a mechanical problem that they were unable to do anything about. After diagnosis one
participant describes how he had to learn to forgive himself for all of those years of snoring. He said he had
learnt more about himself from the experience.
Previous research (Venn, 2007) has found that attributing snoring to causes outside of one’s control can
help to alleviate stigma and embarrassment associated with the behaviour. Similarly, participants in this
study talked about how obtaining a diagnosis of OSA attributed snoring to causes outside of the individuals
control and for some participants this helped to alleviate the embarrassment and stigma of their snoring, as
well as to justify the reason for it.
Rarely did participants feel they had had a sleep problem. They just thought that tiredness was due to
other factors such as being on call at night or worrying about another family member. Once they had had a
diagnosis for OSA, however, they could see the dangers of sleepiness, especially when it came to driving a
car.
2. Managing sleep and wakefulness
a. ‘Transformation through technology
SAFG2M3.. I got the machine and within days, total change. I’ve lost two and
a half stone in weight. I am full of energy, full of get up and go. I feel a totally
different person. I feel about twenty years younger.
SAFG1F1.. Definitely more alert, definitely more alert and can function on a
much higher level. It was very woolly prior to the mask and really couldn’t
function properly. It was making all sorts of, actually it was kind of akin I
suppose to alcoholics anonymous, you were making all sorts of excuses as
to, “Oh, I’m not feeling well,” and you'd dragged every inch of the day, you
know, it was an effort to do everything. And it’s not so now, I’m alive and
alert and want to do stuff. It’s very different.
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Participants who were given CPAP machines praised them for giving them more energy and a good quality
of sleep and said that they felt they no longer looked tired. They reported that they had longer
uninterrupted sleep (4 hours instead of 2) and that they no longer woke up feeling as if they were choking
or fighting for breath. For many the machine was a `saviour’, a life changing experience. There was not
surprisingly a high level of `faith’ in the machine. Although there were downsides to using it
(embarrassment, unattractiveness of wearing the mask, lines on ones face, making them feel
uncomfortable) these were far outweighed by the positives. Participants thought that if someone with OSA
was still feeling sleepy after using the machine then there was something wrong with the machine and it
should be fixed. They expected the machine to work. They saw it as natural as it was providing ‘just air’.
Some, however, gave more emphasis to the negatives. They complained that the machine left stigmatising
marks on their face, was noisy and, in the case of older models left their throat dry. They also talked about
it stopping ’pillow talk’ and spontaneity in the bedroom.
SAFG1F1.. It’s not very glamorous is it?
SAFG1M2.. …I force, no I force myself to use it and you're right, it’s…
SAFG1F1.. It’s not glamorous at all, you know, if you’ve got a partner it’s,
hey, hmmm! (Laughs).
SAFG3M2.. Let’s face it, we use a mechanical device and that has you
know side-effects, whether they be psychological or like those dots on your
forehead in the morning, there are consequences. But with the machine
you’re in control of that yourself.
SAFG3F3.. I’m like you, with the machine I do feel it’s horrendous, I get up
in the morning, I have rings, I have marks, I have to get ready for work, I
have to go and sit on a bus where I think everybody is looking at me
because I’ve got all these dots and these rings and these marks all over my
face and I do feel that I’m a bit alien, you know, I want to normal like
everybody else sitting on the bus but I’ve got this machine. I do have a
laugh on the other side because when we had a family party yesterday
somebody said “oh I snore”, I said “it’s okay I’ve got a machine for that”.
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b. Prescribed medications
SAFG1F1.. I don’t think they work that well. I have had them in the past, I
think that you wake up feeling really muggy and..
SAFG2F1.. And yeah, and that’s why I went to the [place name] in the end
because I didn’t want, it’s almost like I didn’t want to give in to having strong
medication....
Moderator.. This notion of giving in to strong medication…?
SAFG2F1.. Well yeah, because I was worried I’d get addicted to it. And
that’s…
Moderator.. What made you feel that might be…?
SAFG2F1.. Because people told me, you know, that you get addicted to
sleeping medication and that you can’t sleep without it, so it’s just what
people told, believe anything.
Moderator.. Which people do you actually mean?
SAFG2F1.. Oh elderly people tend to tell you that and, um, some nurses have
told me that, that you get addicted to it. And one of the doctors, another
doctor because I’d moved, I mean in [country name] they just gave you it,
they didn’t say “just take it for two weeks”, you just got it. And I would do
things like give myself little tests like “oh today you’re only going to take a
half a one and see if you can cope with that” you know, and things like that.
I would be hard on myself really because I saw it as a weakness in myself.
Participants were often very anti-drugs and those who were taking medications for other conditions on a
long term basis generally wished they did not have to. Fears were expressed about the dangers of addiction
and reliance. Pills were thought of by some in a negative sense as a sign of weakness, taking the easy way
out, a sign of getting older, a sign of not being able to cope. Very few said that they had used sleep
medicines – and those that did said that they were worried about addiction to them while using them.
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When compared to the CPAP machine some respondents said they would prefer medicines if there were no
side effects and because a pill is more discrete than a machine. Others saw the machine as more natural as
“it’s just air” and “non-invasive”. There was also scepticism that a pill could do what the machine does as
only the machine could deal with a blocked airway. Overall, then, tablets were seen as a last resort with
most saying they had faith in the machine.
c. Non-medical strategies to manage sleep and promote alertness
Moderator: A part from using the machines then, or not using them, is there
anything else you do to help you sleep?
SAFG1M3: I do. I have the radio on. I've got BBC World Service and it’s an
absolute rule that it’s as boring as can be and the moment something
interesting comes on, (Snore). (Laughter).
SAFG1M: My only mechanism for helping sleep is to switch from ordinary
coffee to de-caff from teatime onwards, so I never have ordinary coffee late
at night.
SAFG1F: Quite often just sort of falling asleep with a boring film on because I
know that will send me to sleep. It will take about five minutes and that’s it,
I’m off, but no, otherwise just straightforward.
SAFG2F1: I’ve taken everything. I’ve taken herbal remedies, you know,
sort of, I went to a herbalist, a Chinese herbalist, I can’t remember the
name of it, I went there. I’ve taken the sort of, is it called Kalm…?
LM:
Yes.
SAFG2F1: …or something like that, I’ve taken that. I’ve…
LM: Where did you get that from?
SAFG2F1: I got that from Boots I think it was. I’ve taken herbal teas, I’ve
actually had ages ago when it was on your Walkmans I’ve had tapes,
relaxation tapes. I’ve had, what else? Tried, every time there was
anything in a magazine or a book about how to sleep better I was there to
try and do it, raising your feet, the temperature.. People say “oh that does
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it for me” and then you think you’re a failure because all these things just
didn’t work for me.
Before participants had been given CPAP machines they had tried a wide variety of alternative strategies to
help them to sleep. These included radio, boring films, alcohol, seeing a herbalist, KALMS pills, herbal teas,
relaxation tapes, seeking advice from magazines and books, restricting caffeine, and using mouth shields to
stop snoring as an alternative to the CPAP machine. When these personal/ behavioural strategies did not
work and they still had sleep problems some viewed themselves negatively - as one put it, as ”failures”.
Similarly they had used many strategies to stay awake, prior to be given a CPAP machine. These included
sugary sweets, fresh air, stimulant drinks before driving and buzz gum. Energy drinks were generally hated.
Napping had also been a popular strategy and two participants still used this approach, alongside the CPAP
machine.
Summary
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Partners seemed to pressurise participants to seek a diagnosis for their snoring
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Some GPs seemed reluctant to refer them to sleep clinics
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Diagnosis led to a sense of relief
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OSA was often viewed as a mechanical problem that they could not do anything about.
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The CPAP machine was generally viewed as a saviour, although there were negative side
effects such as leaving stigmatising marks and preventing ‘pillow’ talk.
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There was a strong anti-drug culture, even amongst those who had been on medication long
term for problems other than sleep.
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CPAP machines were seen as more ‘natural’ and non-invasive compared with pills.
Implications
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Further research is needed on the experience of those with OSA based on a representative sample.
This research should document in greater detail the impact of lack of sleep on the health and wellbeing
of people with OSA and how they try and manage this sleep deprivation while at work and at home.
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On the basis of this research, materials might profitably be developed for people to consult regarding
the causes and social consequences of OSA and how it can be treated.
There is a need for better education and training in sleep medicine, for all medical practitioners, in
order to facilitate earlier diagnosis and treatment and better understanding of OSA alongside other
sleep problems and disorders.
Report prepared by Dr. Catherine Coveney, University of Sussex, Prof Jonathan Gabe, Royal Holloway University
of London, and prof Simon Williams, University of Warwick, February 2016.
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ESRC Medicated Sleep and Wakefulness Project: Policies and Practices