Social Science & Medicine 79 (2013) 48e56

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Social Science & Medicine

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Listening for his breath: The signicance of gender and partner reporting on the
diagnosis, management, and treatment of obstructive sleep apnea
Doug Henry a, *, Leon Rosenthal b
a
b

Department of Anthropology, University of North Texas, 1155 Union Circle, #310409 Denton, TX 76203, USA
Sleep Medical Associates of Texas, USA

a r t i c l e i n f o

a b s t r a c t

Article history:
Available online 16 June 2012

In the elicitation of explanatory models for illnesses, accounts of spouses are strangely absent. This
becomes critically missing information for a disorder like sleep apnea, in which a spouse or partner is
often the primary agent responsible for the initial diagnosis and push to seek medical care. An apnea
patients understanding of their own illness is critically shaped less by their own direct experience of
symptoms, and more by how someone else comes to experience, understand, and interpret them. Men
and women, patients and partners, can vary tremendously in their decisions as to if, when, and how to
either seek care for themselves, or to inuence a partner to seek care. This cross-sectional, exploratory,
mixed-methods study from the Dallas metropolitan area, USA, was done in 2006 to illuminate the
signicance of gender and partner-reporting in shaping the lay diagnosis, management, and treatment of
obstructive sleep apnea. Patients clinically diagnosed with sleep apnea were recruited by a physician;
a medical anthropologist then arranged in-depth, semi-structured interviews with both patients and
partners (n 24). Communication within relationships, along with social and cultural norms and
expectations surrounding proper sleep for men and women, played important roles in how apnea was
recognized, accepted, and acted upon by patients. More than half of men and women (patients or
spouses) mention dissatisfaction with positive airway pressure machines, the primary treatment for
obstructive apnea; partial compliance with medical advice was high, with dissatisfaction being patterned
by gender. The medical anthropology of sleep disorders offers insight into traditional gender roles
surrounding expected sleep and proper sleep roles. Given the small proportion of adults with apnea
that currently see a physician for care, an expanded explanatory model involving spouses or partners
promises to reveal new insight into patient behavior surrounding diagnosis, management, and
treatment.
2012 Elsevier Ltd. All rights reserved.

Keywords:
Explanatory models
Sleep
Sleep disorders
Gender
Health behavior
Patient care
USA
Spouses

Introduction
Despite being rst medically described more than 35 years ago
(Guilleminault, Tilkian, & Dement, 1976), obstructive sleep apnea
remains, at the population level, often unrecognized and undiagnosed. This is, in part, because of the unique nature of apnea, in
which its most obvious symptom, gasping for air after a period of
arrested breathing, manifests itself during sleep. Obstructive sleep
apnea sufferers can accumulate major sleep deprivation for years or
decades and not simply know it, solely because theyve never been
told by a spouse, bed partner, or close family observer, of their
symptoms. Though daytime effects are often recognized, an apnea
patients understanding of their own illness is critically shaped less

* Corresponding author. Tel.: 1 940 565 3836; fax: 1 940 369 7833.
E-mail address: dhenry@unt.edu (D. Henry).
0277-9536/$ e see front matter 2012 Elsevier Ltd. All rights reserved.
http://dx.doi.org/10.1016/j.socscimed.2012.05.021

by their own direct experience of symptoms and more by how

someone else comes to experience, conceive, and interpret them.
To understand this process, the research team designed a study to
explicitly understand how people within a relationship come to
perceive the nature and severity of sleep apnea, and how their
experiences inuence subsequent help seeking behavior. Because
both spouse and patient commonly share the space where symptoms are manifest, it became critically important to compare the
roles of patients and spouses in shaping how a problem is learned
about, apprehended, and sought help for, and how the effectiveness
of both over the counter and medically prescribed treatment are
evaluated.
Since Kleinman, Eisenburg, and Good rst described the value of
collecting explanatory models in the eld of medicine (1978),
medical anthropologists have long recommended elicitation of
these in patients, in efforts to illumine how patient behavior
surrounding illness can relate quite rationally to how they dene an

D. Henry, L. Rosenthal / Social Science & Medicine 79 (2013) 48e56

illness, how they understand the symptoms, what they think about
illness etiology, its anticipated course, and the proper treatment for
it (see also Baer, Weller, Garca, & Salcedo Rocha, 2008; King, 1983).
At the patient level, explanatory models have been shown to affect
coping strategies, treatment preferences, and patient satisfaction,
and adherence to a medically prescribed treatment regimen (Callan
& Littlewood, 1998; Foulks, Persons, & Merkel, 1986; Kleinman,
1981; Rose, 1983; Tripp-Reimer & Brink, 1985). At the broader
level of public health, knowledge of the inuences on individual
help-seeking behaviors have been shown to be critical for the
development of effective community campaigns designed to
encourage healthy behavior (Martinelli, 1999).
Critics of the explanatory model approach correctly point out
that an overfocus on individual statements about illnesses often
fails to consider the extent to which beliefs and subsequent
behavior are shaped by patterns within the dominant culture, or by
powerful social, political, and economic determinants (Dein, 2003;
Rouse, 2010). While the framework prescribed for eliciting and
understanding explanatory models does seem to allow for the
assessment of polysemic attributes from pluralistic perspectives
(Erickson, 2007; Kleinman, 1981), in practice, the overwhelming
focus remains on the individual patient, and the patientephysician
interaction. In a recent work from the context of patient education,
for example, Haidet et al. (2008) discuss how an essential task for
physicians and patients is to develop an understanding of each
others perspectives about the illness experience (232), for
effective negotiation of differences in patient and physician
perspectives (236) (emphasis mine). In a review of the literature,
there is little clinical scholarship about how the communication
between spouses, partners, or family members comes to shape how
those who are sick understand and seek action for a specic illness.
Partial exceptions come from the literature in which parental
beliefs are assessed for children with chronic conditions like
autism, asthma, or ADHD (see, e.g., Bussing, Gary, Mills, & Garvan,
2003; Gray, 1994). Among adults, a signicant exception seems to
be Tiefer and Melmans (1983) study of sexual dysfunction among
men, in which they showed that involving wives or partners in
clinical interviews provided critical correctives in assessing
etiology, collecting information, and suggesting appropriate treatment. Spouse or partner understandings, and how they come to
shape a patients own perspectives or behaviors, are more often
than not left out. For a disorder like apnea, where both partner
experiences and dominant cultural narratives critically shape helpseeking and treatment, it is vital that EMs expand beyond the
patient.
Obstructive sleep apnea and partner reporting
Though isolated medical descriptions of sleep disordered
breathing exist at least from the 19th century, obstructive sleep
apnea (as part of a syndrome of apnea events) was not clinically
described until 1976 (for this history from both medical and
critical social science perspectives, see Guilleminault & Abad,
2004; and Kroker, 2007). Obstructive sleep apnea occurs when
the upper airway narrows or closes during sleep, resulting in
complete or near cessation of breathing for at least 10 s at a time
(Schwab, Remmers, & Kuna, 2011). Snoring may become especially loud, and interrupted by long silent periods during which
there is no breath taken. Fluctuations of oxygen saturation are
often documented, with saturations at times falling dangerously
low. Respiratory events are terminated by partial arousals, which
end up causing fragmented or frequently disrupted sleep. These
partial arousals almost never cause the person to wake
completely, but rather compromise sleep continuity. The sleeper
is usually unaware that any of these symptoms are occurring.

49

Depending on the degree of sleep fragmentation, there may be

consequent disruption of the structure and pattern of sleep,
which may further compromise the ability to be refreshed by
sleep.
Certain risk factors are associated with obstructive sleep apnea,
namely excess body weight and obesity, or genetic predispositions,
including cranio-facial anomaly, such as a recessed chin, a shorter
jaw length, an elongated soft palate, or an enlarged uvula, tongue,
or adenoids (Guilleminault et al., 1995; Redline et al., 1995).
Obstructed breathing can be exacerbated by alcohol use around
bedtime, use of sedatives, smoking, or respiratory allergies (Adult
Obstructive Sleep Apnea Task force of the American Academy of
Sleep Medicine, 2009).
People suffering from obstructive sleep apnea often wake up not
refreshed, and feel drowsy or sleepy during the day. They may have
considerable behavioral morbidity, such as morning time headaches, feeling grumpy or irritable, or trouble maintaining
concentration during the day. There may be decreased cognitive
ability, impaired memory, and loss of interest in sex. Over the longterm, apnea is associated with more severe health problems, such
as increased risk of trafc or industrial accidents, depression, high
blood pressure, stroke, cardiac arrhythmias, and heart failure (Day,
Gerhardstein, Lumley, Roth, & Rosenthal, 1999; Findley, Unverzagt,
& Suratt, 1988; Yaggi et al., 2005).
Population based studies indicate a prevalence range of
obstructive sleep apnea syndrome in adults at between 2 and 5% in
the general population, though 20% of the adult population may
have at least mild sleep apnea symptoms (Young, Peppard, &
Gottlieb, 2002). Prevalence increases with increasing age, and for
overweight or obese adults (Ancoli-Israel et al., 1991; Kripke et al.,
1997). An extremely high percentage (80e90%) of the people who
have sleep apnea are estimated to remain undiagnosed, and in need
of treatment (Young, Evans, Finn, & Palta, 1997). Men are about
twice as likely as women to be at risk, although prevalence rates for
women may rise signicantly during late stages of pregnancy,
during peri-menopause, and menopause (Mindell & Barrett, 1998;
Ye, Pien, Ratcliffe, & Weaver, 2009). Diagnosis of obstructive sleep
apnea is usually made after medical consultation leads to a sleep
study, done in a sleep laboratory or on an ambulatory basis. The
most effective medical treatment for obstructive sleep apnea is use
while sleeping of a positive airway pressure machine. These
deliver pressurized air via a nasal or full face mask (nasal pillow)
to force air into the upper airway. Different machines (e.g., CPAP,
VPAP/BiPAP, APAP) will be prescribed by a physician to deliver
either constant or variable pressure, based on clinical need (usually
a combination of severity of the patients condition, or a patients
tolerance and comfort level). Importantly, positive airway pressure
machines are treatments, not cures; machines are to be worn
nightly, for the duration of sleep.
In the rst clinical description of obstructive sleep apnea 1976,
Guilleminault et al. write, the spouse or other bed partner is the
best source of current information, and appropriate questioning
always results in a vivid description of the loud snoring and unusual
nocturnal respiratory pattern (1976: 469). However, the methodology behind what constitutes appropriate questioning has never
been standardized, and is in fact not always possible, given the
variety of ways in which patients arrive at a clinical appointment
(e.g., some patients arrive at a sleep specialist after having undergone polysomnography at a private or commercial enterprise to
which they were referred by a primary care doctor; these may only
diagnose individual pathology). During a clinical interview, selfreports of snoring MAY be veried by a spouse, but spouses are
not present in most situations. Some sleep specialists send questionnaires home with patients to give to their spouses, but the
return rate on these can be low.

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D. Henry, L. Rosenthal / Social Science & Medicine 79 (2013) 48e56

There is also a small literature of research about bed partners.

Troxel et al. (2007) create a conceptual model that encompasses how
sleep disturbances affect close personal relationships, and close
personal relationships affect assessments and quality of sleep.
Studies have surveyed spouses of apnea patients about their own
quality of sleep or marital satisfaction, either before their partner
began CPAP therapy (Beninati, Harris, Herold, & Shepard, 1999;
Billmanna & Ware, 2002), or after (e.g., Parish & Lyng, 2003; Kiely &
McNicholas, 1997). The latter two studies both indicate improvements among spouses in indicators like marital happiness, quality of
life, and quality of sleep. Wiggins, Schmidt-Nowara, Coultas, & Samet
(1990), further set out to evaluate the comparability of self-and
spouse reports of apnea symptoms. Unsurprisingly, given our own
ndings, women reported higher snoring rates for their male partners than men themselves did; men reported slightly lower rates of
snoring for the female partners than women themselves did.

Table 1
Question topics.
Topics

Question guide

Explanatory
models

 So what do you/your partner think is going on?

 Are there things that seem to make it better or worse?
 How did you come to know that you/your partner had
a problem?
 How do you dene a good nights sleep?
 Do you and your partner think differently about
the problem?
 When it rst started, what did you/your partner
do about it? Probe: Things youve tried? How did
you/he/she decide on that?
 Are there places or people you get advice from?
 What do you/your partner do about it now?
 At what point did it become bad enough to
see a doctor about it? Who decided?
 Do you and your partner respond differently to it?
 Tell me about the sleep lab
 How was your/your partners experience at
the doctors ofce?
 What do you/your partner think about the
CPAP machine? What do you like/not like
about it? What would an ideal treatment be like?
 Is life different since treatment?
 When the problem rst started, did you and your
spouse talk about it?
 Are your/your partners symptoms easy to
talk about? Probe: ever embarrassing?
 Where did you go to get advice?
 Do you two talk about it differently?
 How does your/your spouses apnea affect your life?
Probe: Work? Family? Personal relationships?
Social life? Sex life?
 Does it ever cause conict?
 Does it affect the two of you differently?

Help seeking
behavior

Clinical/therapy
experiences

Methods
Ethics approval was granted by the University of North Texas
Institutional Review Board in February 2006. In spring and summer
of that year, patients seeking treatment for sleep apnea at a Dallas,
Texas, area sleep disorders clinic were informed about the study by
their sleep physician during the course of medical appointments; if
willing to participate, they signed a privacy and consent form to
allow their telephone number to be passed along to the PI, a medical
anthropologist. The PI contacted them to schedule an interview.
Twenty four semi-structured, mixed qualitative and quantitative
interviews were conducted, with both patients and their spouses.
Topics included perceptions of etiology and development, experience of symptoms, anticipated course and outcome, expected
treatment, experiences with clinical care and prescriptive therapy,
inter-personal communication, self-treatment, help seeking
behavior, and the impact of apnea of social, work, and personal
domains (see Table 1). The majority of interviews took place in
patient homes, where patients would feel free to discuss personal
experiences with their insomnia and their treatment. Five patients
were uncomfortable meeting in the home; these interviews were
deliberately held in locations where the patients felt more
comfortable (two in ofce workspaces, two in coffee shops, one in
a public library). Interviews ranged in length of time from 50 to
90 min, though most lasted about 60 min. Respondents were, to the
extent possible, blind to the responses given by their spouses. Each
interview was digitally-recorded, transcribed, and coded with the
qualitative software package Atlas Ti. Transcription resulted in
a total of 289 pages of data. Quantitative data was entered into SPSS.
Within Atlas Ti, inductive content analysis was used, in order to
allow patient-driven patterns to emerge from the data independent
of predetermined analytical approaches. A content coding scheme
was developed in which words or themes are coded according to
their contextual signicance. Relationships between categories and
trends that emerged between subelds were then examined in
order to provide an understanding of how participants identify and
organize factors related to their apnea.
The sample
The sample included 12 married, heterosexual couples (see
Table 2). All patients had undergone CPAP titration during polysomnography testing in a sleep lab; two had been diagnosed with
mild to moderate apnea, ten with moderate to severe apnea. Of the
patients diagnosed with obstructive apnea, 7 were men; 5 were
women. They were 92% Anglo (non-Hispanic), and 8% Hispanic.
Median age of patients was 49 years, of spouses 48 years. Most
patients (83%) were new users of CPAP (continuous positive airway

Communication

Impact

pressure) machines; 17% were either waiting on the machines, or

were saving up money to buy the machines. Average household
income was fairly high; only one couple had an annual income in
the range of $25e40,000; eight had combined household incomes
greater than $100,000; three were between $40,000e$100,000. At
the time of interview, all patients had several meetings about their
apnea either with their primary care doctor or a sleep specialist.
More than half of patients and spouses had taken it upon themselves to search online for apnea specic information.
Results
Describing symptoms
In 10/12 cases (83%), patients were unable to report rst-hand
on the immediate experience of their behavioral symptoms,
except as these had been described to them by spouses, children, or
even friends who had observed them sleep. Spousal descriptions of
nighttime behavior were crucial to diagnosis, and became central to
how patients understood both the nature and severity of the
problem. For almost all interviews, these descriptions followed the
classic descriptions of loud snoring and arrested breathing. When
asked to describe how they knew that something was wrong,
patients responded:
Male patient: She brought it up to me because I snored. And she
said, Sometimes you dont breathe.
Male patient: Im told I snore a lot. Im not really aware of what I
do when Im asleep, so she can provide that information.
Female patient: I knew I had a problem when my husband
would wake me up and say, Hey, youre not breathing. And that
was, maybe, 10 years back.

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51

Table 2
Patient/partner characteristics.
AHIa

Weight (kg)

Relationship

Age

Gender

Length of time on CPAP

Patient Co-morbidity

Patient
Spouse
Patient
Spouse
Patient
Spouse
Patient
Spouse
Patient
Spouse
Patient
Spouse
Patient
Spouse
Patient
Spouse
Patient
Spouse
Patient
Spouse
Patient
Spouse
Patient
Spouse

51
48
51
49
57
52
34
33
64
63
48
44
29
27
31
29
66
72
57
59
50
49
53
55

M
F
M
F
F
M
M
F
M
F
M
F
M
F
M
F
F
M
F
M
F
M
F
M

3 months

Hypertension, diabetes, GERD, rhinitis, back pain

32

97.5

6 months

Arthritis

38

127.5

3 months

Hypertension, back pain

67

1 month

43

119

4 months

Arthritis, anemia

135

135

Not begun

Hypertension, high cholesterol, glaucoma, rhinitis

111

142.5

<1 month

GERD

17

79

2 months

Hypertension, diabetes, psoriasis

44

109

Not begun

Hypertension

124

148

<1 month

GERD, depression, high cholesterol, rhinitis

42

115

1 month

Fibromyalgia, high cholesterol, osteoporosis, rhinitis

42

57

2 months

Gout

48

108

a
AHI stands for Apnea-Hypopnea Index, a measure of the severity of sleep apnea. It is based on the total number of pauses or cessations of breathing lasting at least 10 s,
per hour of sleep. An AHI of 5e15 is usually considered mild; 16e30 may be moderate, and >30 severe (Ruehland et al., 2009).

The iconic cultural status of snoring, particularly for men,

became evident in interviews. For male patients in particular, the
popular culture, comical representations of snoring made it
difcult, and embarrassing, for them to talk about it seriously.
Men could perceive that their partners were simply making a big
deal out of nothing, in order to poke fun at them. Because of this
perception, wives often struggled to push their partner to accept
that their style of snoring was not normal. While Western
culture almost anticipates men to snore, quite the opposite occurs
for women, thus setting up large differences in gendered expectations about what constitutes appropriate sleep for men and
women (see also Venn, 2007). Notice the difference in acceptability of snoring between male and female patient descriptions
below.
Male patient: I come from a family of snorers, all of them. Ive
been snoring since I was 10. I think every male in my family by
blood or marriage snores like that. I thought all men, thats what
they do. And everyone, when I was little, just thought that it was
funny. She (spouse) has been telling me that my snoring has
been getting worse and worse, and I just put it back to shes
making it out to be worse than it is- shes just having a good
time you know, poking fun at me... at rst we would make fun of
it together, because we didnt know how serious it was.
Female patient: Most people would think thats just a mans
problem, because men snore; men are the ones that snore.
When you see a cartoon of someone snoring, its always a man.
Women are supposed to be delicate and petite and not make
those sounds.
Female patient: You know, who wants to be told by their
husband that theyre making the most obnoxious sounds at
night? Its kind of an issue you dont really want to discuss.
Youre not supposed to do that sort of thing; its not lady-like. I
think Im just embarrassed about it. Maybe its just more
accepted in men- you know, they belch and stuff (laughing).
For women whose snoring might indicate the presence of apnea,
a different kind of danger became apparent that considerate male

spouses could feel compelled to downplay or underreport the

symptom, as its not considered something that women are
supposed to do (see also Wiggins et al., 1990). Male spouses, for
instance, would say, Shell be restless, and kind of snores at night or
She was sort of making a whistling sound. One woman, who had
only been married for ve years, described her spouses sensitive
approach to broaching the subject:
Female patient: Itll be more like, You were noisy last night.
Kind of in passing. He says it doesnt bother him. At least thats
what he tells me.
If the symptom of snoring was either downplayed or interpreted comically by spouses, the other symptom of sleep apnea,
cessation of breathing and occasional gasping for air, was not.
Watching and hearing their partner stop breathing at night could
be very distressing, for both men and women. These episodes were
presented dramatically, and clearly represented what had been
extremely traumatic episodes for patients, partners, and sometimes
entire families. Three spouses, for instance, all women, talked about
how they had become habituated to stay up at night, literally
keeping vigil over their sleeping male partner, listening acutely for
the sound of his breath.
Female spouse: Sometimes I can feel hes not breathing, so I have
to nudge him to wake him up. When it got bad, I was pregnant
with our 7th child, and I thought, OH MY GOD, hes just going to
die on me! I guess with kids, youre always up anyway, and I
always felt like it was my job, my responsibility, to jump up and
push him. Then Im like, OK, whew! Hes breathing now.
This nighttime encounter, and the inter-partner communication
surrounding it, could be a tremendous source of tension within the
relationship, particularly among those couples for whom communication had either deteriorated over time.
Female spouse: (about her husbands snoring) It would really
get me agitated during the night, so there was literally ghting
in bed. Denitely. Hed get defensive, and mad, and call me
names, and then in the morning he wouldnt remember that. It

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D. Henry, L. Rosenthal / Social Science & Medicine 79 (2013) 48e56

would get ugly. When he was diagnosed, I told him, I told you
so. I told you over the past 4 years that something was wrong!
Daytime effects/impact of apnea
As mentioned, most patients were unable to describe their
nighttime symptoms rsthand, instead relying on spousal reports.
What patients could do, and often did, was come to understand
their nighttime symptoms in terms of their daytime effects. This
was most often through talking about daytime sleepiness, or how
sleepiness had created a strained family life, deteriorated personal
relationships, grouchiness, a sense of personal failure, or a general
lack of energy, sometimes with severe repercussions.
Male patient: I had three car accidents in six weeks. They were
ALL my fault. Two of them I didnt even know I was involved in
until afterwards.
Female patient: I didnt have energy to do anything with the
kids. I didnt have any energy to want to cook dinner. By the end
of the day I was like, Lets go out to eat; Im too tired to cook. I
know that its kept me from doing things socially, because Im
just too tired.
Female patient: (about spouse) Hes resentful that Im so tired
and Im not able to do as many things. We used to go for walkswe would hike about 9 miles per night. But now its hard
because I cant do that. Its just hard to get going. Hes used to
a very active lifestyle- he likes to canoe, kayak, and hike, and all
that stuff. Its difcult for me to keep up.
Particularly those male patients who were the primary household income earners worried about problems at work.
Male patient: Im an engineer, so I need to think. Im in a job
where theres a premium on being mentally alert. And I was
really sleepy during the day, and having trouble concentrating. It
got to the point where my thinking, where I had to write
everything down. Anything at work that was said to me, you
know, where theyd ask me a question or something, I had to
write it down, because if I didnt, Id forget it. It was getting to
the point where it was kind of scary.
Male patient:I also fell asleep at work a few times, without
knowing it. Once I slept until 8:00pm. Because we had babies in
the house, my co-workers just thought that I was tired, that I
was helping my wife. But I knew that something wasnt right.
With both spouse and patient losing sleep over apnea, and
spousal anxiety at a heightened state over concerns about their
partners health, daytime discussions about the effects of apnea
among partners mirrored the tense nighttime discussion
mentioned above, and easily became conversations about deteriorating or strained relationships.
Female spouse: I hated seeing him not have enough energy. Id
be grumpy from not wanting to deal with the kids or whatever,
and that part can be very frustrating. Hed be sound asleep in
the afternoon, and Id think, OK, I have to deal with this again.
Id also have to explain these things to the kids, Dad has all of
these things going on inside his body, and he needs to sleep, to
rest. And honestly, its hurt our intimate life. I could probably
count on two hands the number of times weve managed to
have sex in the last three years. Im sorry to vent but its not
normal!
Female spouse: He would never go anywhere I wanted to go, or
when I needed. If he went, hed say, Lets go. Cant we go? Cant
we get out of here? So nally, I just said, Thats it! Im not going

anywhere with you, and you dont have to go anywhere with

me. Im tired of it! Matter of fact, if it wasnt for me needing to
have his insurance, I would probably leave.
Even after clinical diagnosis, talking about apnea or its daytime
effects within a relationship could be difcult; 30% of respondents,
evenly split between patients and spouses, noted tension in their
conversations with their partners.
One other effect that apnea could have on relationships bears
mention bed sharing. Four of twelve couples (33%) slept in different
rooms to minimize nighttime tension and their partners lack of
sleep. For two of these, it was a male patient who left the room at
the prodding of their female spouse; one female patient left the
room to sleep in a guestroom, as did one female spouse. Perhaps
fearing the social stigma that not-bed sharing implies, only two of
four patients talked willingly about sleeping in separate rooms; this
information, however, was readily offered by all four spouses of
those patients. Two female spouses discussed using sleeping apart
as a kind of tool to inuence their husbands to seek medical help.
One husband became stubborn about this, and reported sleeping on
the couch for four years before making a doctors appointment.
Female spouse: He just couldnt believe it was a problem, until I
started coming out to the other room so I could sleep all night.
Because the second he falls asleep hes really disruptive. And its
not normal, for a healthy relationship, come bedtime, for him to
go his way and I go mine.
Eight couples, however, insisted on maintaining bed-sharing,
tying it to ideas of loyalty and a normal or healthy relationship (see also Rosenblatt, 2006). For them, sleeping in separate
rooms or beds carried a social stigma that they preferred to avoid.
Male patient: Fortunately, we have a strong marriage; we still
slept in the same bed. But she suffered because of it.
Female patient: Were in a new relationship. Theres been none
of what I hear with other people, that they start sleeping in
separate beds. He sleeps with me.
Even among these eight couples, however, four did mention
staggering their going-to-bed times, as a compromise strategy to
help them maintain the feeling of having a close, healthy relationship, yet one with minimized nighttime tension.
Etiology
When asked to what they attributed the cause of their apnea,
respondents mostly characterized their problem as being one of
weight, control of which would alleviate if not end their symptoms.
Weight was mentioned as the primary cause of the problem for
50% of respondents; spouses were more likely to indicate weight as
the main problem (58%) than patients (33%).
Male patient: Im new at being heavy. Its a new thing for me.
And I dont drink coffee during the day. If Im sleepy at work, I
drink Coke. I drink 5 or 6 cans of Coke a day. Thats a lot of
calories. So the problem kind of feeds on itself.
In interviews, spouses were often embarrassed to talk about
their partners weight; women in particular would sometimes
contextualize it with what they considered a more socially
acceptable explanation.
Female spouse: I think its probably stress, or I should say, an
overactive mind. When we moved down here about 4 years agohe put on a lot of weight. He has allergies, and he was working in
a really stressful work environment. And he stress eats, and
eats at nighttime. He still does this. And not good food, either.

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53

Female spouse: I was pregnant with our fth child then. He

seemed to gain sympathy weight with me, for each kid that
came along. It was his weight, and the stress of each kid that
came along.

of the male patients only sought help after repeated insistence or

direct intervention from their spouses. Of women patients, 60%
reported needing strong encouragement from their spouses or
families; 40% reported that they decided to seek help on their own.

Sleep medicine considers apnea to be a chronic problem, one

that stays with a patient for life. Despite this, three patients and two
spouses held out hope that control of weight would alleviate if not
solve the problem of snoring.

Female patient: I just kept putting it off; I couldnt make that

initial call. I was talking to my mom, and she said, Youve GOT to
do something! and I was in TEARS. I had the (doctors ofce)
number saved on my phone; I just couldnt press it to call. So I
told my mother, I need you to call and so shes been my battle
buddy through all this and held my hand. My husband I think is
the same mindset as I am- Allison, just get some willpower and
x it yourself. My mother has been, No, you cant x this
yourself! So she went with me to Dr. R; she picked me up from
the sleep study. Shes been my motivator, You can do this!
Youre going do this! You HAVE TO DO THIS! I probably
wouldnt have gone if it hadnt been for her- that push saying,
Youre going if I have to pick you up and drag you.

Male patient: I look at it as kind of temporary, you know? Keep

losing the weight, and maybe that will help. Dr. R thinks its
a lifetime deal, but I hope its not. I do know I snore less when
Ive lost weight.
Male spouse: Ideally shell be able to recondition her body so
that its not necessary for her to have to do this (use a CPAP
machine). But I dont know what kind of outcome is expected.
Ideally she could get back to normal.

Help seeking behavior

Given the stigmas associated with snoring and being overweight
in the U.S., it is perhaps not surprising that one of the rst responses
to apnea reported was simply to either deny the problem, or to delay
doing anything. Patients were asked about the difference in time
between when they rst recognized that there was a problem and
when they actually sought medical help. The mean delay reported
by patients was 4.8 years (SD  5.8). There could be disagreement
between spouses and patients as to the length of the delay; this
difference could not be quantied for all respondents, however, as
some patients problem pre-dated involvement with their spouse.
According to patients themselves, men delayed an average of 5.5
years (SD  8.7); women delayed 4.0 years (SD  3.4). When asked to
explain this length of time, denial played a large role:
Female patient: I think I just kind of preferred to live in my
imaginary world. It takes a lot for me to go to a doctor. I knew
something was wrong, I just chose not to do anything about it. I
kept saying, I can x this myself; I dont need a doctor, I dont
need to bill this to my insurance. It was hard- I didnt want to
admit I was snoring as loud as I was, and that I couldnt x this
on my own. I also didnt want to be told that I had completely
lied to myself about my weight the last 10 years. Im so good at
lying to myself- you dont have a sleeping problem; you just
have three kids and youre tired.
After delay, the next recourse was almost always trying to
alleviate the symptoms of snoring, seen as the most immediate
problem. Ten of twelve couples (83%) reported trying either overthe-counter solutions or complementary and alternative therapies to treat snoring. These included Breathe Right nasal strips (6
couples), different sleeping positions such as propping oneself up
(5 couples), special pillows or devices to change the position of the
head (4), special mattresses (3), humidiers (2), dietary or herbal
supplements (2), over the counter medicine (2), background noise
(1), relaxation tapes (1), or lettuce with warm milk (1). For about
half of those patients who tried self-treatment, effectiveness was
evaluated less by any change in their own perceptions or feelings,
but more by the reports of their spouses.
Male patient: Sara thought that (nasal strips) made me snore
less, so I wore them for probably 2 years. Whether or not they
did or didnt do anything, I couldnt tell you.
Two strong motivators pushed patients to nally seek medical
help. Easily the strongest was the inuence of spouse or family. All

A caring, patient, yet insistent spouse was often required to push

patients to seek help for their apnea. Many spouses considered
themselves partners in treating their partners apnea, noticeable
through use of the word We in discussions about it (e.g., Weve
lived with this for over 15 years or We just didnt know it was
a problem until we went to the doctor). When, however, these
concerned conversations with partners were repeated over
a period of years with no effect, some spouses would begin to lose
patience, and the we pronoun could be dropped. As one woman
complained, I hate it! Ive become a resentful, nagging hag!
Spouses shared their strategies for encouraging their partners to
go to the sleep specialist. Three women called a sleep clinic
themselves to make the initial appointment for their husbands;
four accompanied their spouse to the sleep clinic. Three recorded
the sounds of their male partner snoring, to prove that the sounds
that they were concerned about existed. As mentioned above, two
women demanded bed separation from their snoring husbands
until they agreed to seek medical help; one initiated the discussion
with their joint primary care physician, who then approached the
patient himself.
Half of patients mentioned being secondarily motivated to seek
treatment by their own experience of apneas daytime effects,
noted above-most notably lack of energy, lack of mental alertness,
or problems at work. In this case, however, the effect of lack of
energy also itself stood in the way of a patient doing anything
about seeking help, such as making an appointment themselves at
a sleep clinic.

Perceptions of treatment
As mentioned above, the most effective medical treatment, not
cure, for obstructive sleep apnea is use while sleeping of a positive
airway pressure machine. Interviews indicated that patients
rapidly developed a loveehate relationship with their machines.
For many, the morning after the rst night with a CPAP machine
was the rst morning they could remember waking up and feeling
refreshed.
Female patient: I couldnt believe what a difference in how I feltIve never had such a good nights sleep. I slept! I felt something
different with that machine. Like a refresh-ness that Ive never
felt before, or at least in a long time. I felt better. More alert, you
know? Its like strength or something. I felt vibrant!
Male patient: The rst day I got that machine, and woke up that
morning, it was the clearest day of my life. Id never seen the
world like that.

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D. Henry, L. Rosenthal / Social Science & Medicine 79 (2013) 48e56

Despite this, dissatisfaction with the machines was high. Other

studies have shown patient compliance with nightly use of the
machines to be variable, and at times low e some suggest that noncompliance may be as high as 56%, and that many patients abandon
use of their machines within the rst month (Pepin et al., 1999;
Zozula & Rosen, 2001). In the current study, two couples had not yet
received (and begun treatment with) an airway pressure machine.
Of the 10 couples who had, spouse or patient interviews revealed
70% who only partly complied with their prescribed treatment, by
either taking off the masks at some point in time during the night,
delaying putting it on, or skipping use of the mask when it was
judged inconvenient. Within these seven couples, non-compliance
was almost always reported by only one partner (three by the
spouse, three by the patient, only once by both partners). Patients
longed for sleep doctors to just go in and x it, instead of having to
wear the machine:
Male patient: If there were anything that could be done to be
free of that machine, Id do it right now, regardless of cost. I cant
imagine being 75 years old, and still stuck on this machine.
Dissatisfaction among patients centered around either mask or
nasal pillow discomfort (7), the hassle of getting their individual
insurance or contracted provider to provide the best tting or
prescribed machine (3), the hassle of maintaining the machine (2)
or the machines non-portability (2).
Female patient: Im convinced that the machine works; I just
dont think that the design is suitable for everyone. If they could
make it wireless or cordless, maybe. I can turn over, but the
machine stays in place. Then the cord feels heavy on my face,
and I mess with the mask, and then you know by the time I do
that I end up taking it off, and have to sit up and readjust it. Its
a no-win battle. If there just was a way it wouldnt have those
big tubes, where if you roll on it, you didnt feel like you were
laying on a rock.
Four patients (two women and two men) and two spouses (both
women) additionally talked about how the machines interfere with
culturally prescribed ideals of partnered sleep, particularly
relating to gender, beauty, and couple-intimacy in bed. It is clear
that this cultural interference represents a real barrier for patients
trying to learn how to accommodate sleeping with the machines, or
accepting the necessity of using the machines regularly.
Female patient: I dont like it- its got these straps that go here
and here- kind of like Hannibal Lecter. It looks really funny. I
dont know if its a personality issue or what, but women arent
supposed to be like that; were supposed to be dainty when we
sleep. So Ill go to sleep at night without it, but then wake up and
put it on... Lets face it, that thing is ugly, and putting that big
goofy thing on in front of my husband.those rst few night I
would make sure he was asleep rst. Then in the morning Ill
take it off when his alarm goes off. Ive even asked him, whats
better, me snoring or you waking up and seeing your wife with
this horrible contraption wrapped around her face?
Female patient: I nd the machine a little humiliating. Ive
wondered what I would do if I wasnt in such a loving relationship.Its very un-sexual.
Male patient: The machine kind of sucks. It looks like a vacuum
cleaner hose coming out of your head. (Pretending to speak to
wife), Hey baby, guess what I get to sleep with? Its really
intimate, isnt it? Its had an impact on our relationship; youve
got a frickin snorkel thing across your marriage bed, and you
create a windstorm from the exhaust. Thats why its not so fun.
It makes cuddling difcult. If youre snuggling someone, then

youre blowing wind on the back of their head, like youre in

a hurricane.
Three partners complained about the noise or intrusiveness of
the machines, but were also very supportive, based on noticeable
improvement in their spouses demeanor during the day:
Female spouse: Its awesome- I LOVE that new machine. The
rst time he started using it, oh my God it was like, I was nally
getting him back, you know? The sparkle in his eye, the spring in
his step- I mean, you know, just- FINALLY. Hed nally made the
commitment to take care of himself. You know, with your love
life, its not so hot, but he can take on or off the mask.
Three spouses claimed that they liked the sound of the
machine e either because it signaled they could relax, knowing that
they didnt themselves have to monitor their spouses breathing,
because the machine provided background white noise that they
found personally relaxing, or because the sound came to symbolize
a desired return to the situation of bed sharing.
Female spouse: (Smiling) Since hes had the machine, hes back
to sleeping in our bed every night.I dont have to feel guilty
anymore that Im making him sleep on the couch.

Discussion
Given estimates of the high prevalence of undiagnosed
obstructive sleep apnea in the general population, and current
trends in the Western culture of weight gain and obesity, studies
that shed light on how people come to understand the nature and
severity of apnea, and what they do about it, are crucial. As we
note, however, self-report of apnea symptoms by patients is
problematic, because patients are often unaware of their own
behavior during sleep. We also echo critics of the explanatory
model approach, in their attempted corrective to add recognition
of the extent to which individual beliefs and behavior are shaped
by the dominant culture, or by social, political, and economic
forces that exist beyond an individual. As our results indicate,
singular, patient-centered narratives are not always reliable,
complete, or predictive of actual help seeking behavior. Elicitation
of spousal experiences, understandings, and descriptions of
behavior could provide important correctives particularly for an
illness like apnea, in which spouses play such important roles in
shaping how those with illness come to learn about their problem,
how they apprehend it, seek help, and even evaluate the effectiveness of both over the counter and medically prescribed treatment. As we point out, neither are the beliefs of spouse or patient
shaped solely at the level of individual experiences, but, as shown
here, are themselves inuenced by dominant cultural narratives
about weight, male snoring, the romantic intimacy of bed-sharing,
and gender-appropriate styles of sleep.
In that all of our participants were heterosexual couples, gender
played a signicant part in affecting how patients and spouses
described symptoms, discussed the role of weight in perceptions of
etiology, delayed help seeking behavior, and even evaluated the
design and effectiveness of treatment machines. We noted that
three women became habituated to staying up all night, keeping
watch over their husbands sleep. Venn (2007) attributes this
sentient activity of women to a womans protective social role, in
which she subjugates her own sleep needs to the needs of the rest
of her family. This study, however, does not support previous
literature that suggests women are adaptive or passive within
these roles (Coppock, Haydon, & Richter, 1995); quite on the
contrary, female spouses employed a range of very active strategies
to force their husbands to seek help, banishing their husbands from

D. Henry, L. Rosenthal / Social Science & Medicine 79 (2013) 48e56

a shared bedroom, prodding them awake at night, vocalizing their

displeasure, scheduling medical appointments for them, even
developing independent social networks. Though our sample is
small, male spouses of female patients contrasted by being more
often limited by socially acceptable ways to broach the subject of
their wives nocturnal breathing.
Limitations and future research
There were several limitations to the study. The sample size
(N 24) was small, of mostly non-Hispanic Euro American origin,
and mostly upper middle class; though the in-depth responses this
generated provided rich ethnographic detail about how subjective
experiences and culture condition understanding and response, the
sample is of limited population generalizability. Patients and
spouses were interviewed after they sought medical advice from
(or were referred to) a sleep specialist; assessments of how
explanatory models came to be historically constructed and contested were therefore limited to what patients and their partners
could recall, though this effect was somewhat mitigated by having
two people to interview about each illness episode. In that these
interviews occurred after a medical diagnosis had been made, the
justication of the diagnosis inevitably played a part in how the
discourse unfolded to the interviewer. Finally, all but two couples
were interviewed shortly after patients began treatment with
CPAP; it could be that reasons for dissatisfaction or partial adherence with CPAP change over time. Patients and their spouses could
become more accustomed to the machines (thus adherence would
increase); alternately, specic frustrations could gure more
prominently over time, resulting in a range of responses that would
decrease adherence. Objective measures of CPAP compliance are
possible, but were not included here, as the intent of the article is to
illustrate how the subjective experiences of both patients and
spouses condition understanding and response.
There are several avenues envisioned for future research. Userdriven improvements need to be made to the design of CPAP
machines, that better incorporate how current structure and function confront the culturally derived and differentiated ideals about
how men and women should sleep. The culture of acceptability/
non-acceptability of snoring is important, particularly in determining what, if so many people (particularly men) snore, is
acceptable snoring and what is not? When is a common bodily
practice perceived or recognized as pathological (Williams, Seale,
Boden, Lowe, & Steinberg, 2008)? How are priorities and rights
to sleep negotiated or determined within the dynamics of a relationship, particularly given external social pressures and internal
(sometimes competing) interests (c.f. Hislop, 2007)? More attention
also needs to be paid to gender and communication, and how
spousal understandings (and misunderstandings) inuence patient
responses to sickness. Finally, more clinical work needs to be done
that suggests possibilities for how to better incorporate spousal
perspectives into the medical assessment and interview. Among
sleep specialists, a bed partner questionnaire is frequently given
out to patients to pass along to their spouses, that probes symptoms,
daytime sleepiness, and drug and alcohol use. This is not, however,
universally administered, even among sleep specialists, nor is the
response rate particularly high. Many patients undergo a sleep study
rst at a corporate facility, which may only diagnose individual,
patient-centered pathology, and ignore partner reporting. The
questionnaire is virtually unknown among primary health care
practitioners, who may represent the front lines of assessing and
referring people at risk for obstructive apnea. Primary care providers
need to be trained to ask simple questions about spousal reports of
nighttime signs or symptoms, such as loud snoring or witnessed
stopped breathing episodes.

55

While this paper has focused on the challenges that sleep apnea
presents for the dominant individualized narratives within
explanatory models, it is tantalizing to think of other illnesses in
which a spouse or partners experiences of a patients symptoms are
critical to shaping how patients themselves come to interpret and
respond to their own disorder. Certainly in the growing eld of sleep
disorders, situations exist in which people may experience problematic symptomatology for years and simply not know it, solely
because theyve never been told about it by a spouse, bed partner, or
close family observer. Periodic Limb Movements, for example, or
parasomnias like sleepwalking, sleeptalking, or REM Behavior
disorder, all present nighttime problems one might be unaware of
until a partner or spouse complains. If we are to gain new insights
into patient behavior surrounding diagnosis, management, and
treatment, it is vital that the elicitation of explanatory models
incorporate key individuals beyond the patient.

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