Contents

Introduction: The Sociology of Sleep
About the project
The participants
What we asked
Our findings
1. Illness Experience
2. Managing sleep and wakefulness
  1. Transformation through technology
  2. Prescription medications
  3. Non-medical strategies for managing sleep and promote alertness

3. Conclusions and Implications

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 sleep-disordered 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 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). Meta-analysis 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.

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 CouplesSociological 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 ofdevelopments and debatesregardingthe role of sleep medication inBritain 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 wasbased 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.

Theparticipants

As part of the larger study, threefocus groups were held with 13patients 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
  • 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
  1. Managing sleep and wakefulness
  • 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
  1. Attitudes towards the uses of sleep and wakefulness therapies
  • 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 wereoften the ones who pushed them to see their GP in first instance. Often this 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

  1. ‘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.

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, whetherthey 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”.