THE EXPERIENCE OF STROKE IN MONGOLIA
B.S., National Medical University of Mongolia, 1998
A thesis submitted to the
University of Colorado at Denver and Health Sciences Center
in partial fulfillment
of the requirements for the degree of
Master of Arts
This thesis for the Master of Arts
by Delgermaa Tsagaankhuu
has been approved
/ 2c r
Tsagaankhuu, Delgermaa (M.A., Anthropology)
The Experience of Stroke in Mongolia
Thesis directed by Professor Craig Janes
Since Mongolias political economy has shifted from centrally planned to a
free market there have been reports of declining health status. Chronic and disabling
diseases, such as stroke, have been increasing in importance and concern in this
country. However, few studies have investigated the chronic illness experiences of
aging segments of the population. This thesis reports findings from an interview
study conducted with stroke patients and their family members one or more years
following the stroke. The aim of this study was to obtain stroke patients own
perceptions of the impact of stroke and its meaning on their lives. Using a
phenomenological perspective, this study illustrates how the particular social setting
shapes stroke as an illness, influences access to health care and determines the
impact of stroke on individuals and their caregivers.
For stroke survivors and their families in Mongolia this disorder acquires a
meaning that connected with the countrys socioeconomic crisis. The meanings
attributed to stroke by interviewees are developed in the context of recent
sociopolitical transition to a free market, which participants lived through. In this
sense stroke represents a disruption to social life. Most respondents main concern
was their own poverty and economic insecurity affecting their life after the stroke.
Some complained of their inability to meet their basic needs, much less pay for on-
going medication and therapy. Using a standard neurological definition, only two
people were severely disabled, but about half of those interviewed regarded the
stroke as a sign foretelling their own death. In the current Mongolian context, stroke
was considered to be devastating event.
This abstract accurately represents the contenUTthcicandidate^Ae^s^
recommend its publication.
Craig R. fanes
I dedicate this thesis to my parents and my husband whose understanding and
support allowed me to accomplish this thesis.
My great thanks to my advisor Dr. Craig Janes for his assistance throughout
the writing process. I also thank to my committee members Dr. Koester and Dr.
Brett for their helpful suggestions and comments.
Significance of the Study..................................4
2. REVIEW OF THE LITERATURE...................................5
What is a Stroke?..........................................5
Epidemiology of Stroke Worldwide...........................7
Neurological Impairment of Stroke..........................9
Previous Studies and Social Cultural Dimensions of Stroke.13
Summary of the Literature Review..........................18
Demographic, Epidemiological and Health Transitions in Mongolia.. 24
Stroke in Mongolia........................................26
Theoretical Framework in Medical Anthropology.............29
3. METHODS OF THE STUDY......................................37
Setting and Sample of the Study...........................37
Subject Recruitment Procedure.............................38
4. RESULTS OF THE STUDY.........................................41
5. RESEARCH FINDINGS............................................45
The Onset of the Stroke......................................45
Medical Care and Rehabilitation Therapy......................48
Longer Term Clinical Care....................................51
Experience with Traditional Medicine.........................53
Physical Disability Status...................................55
Economic Difficulties after the Stroke.......................59
Negative Life Change Following the Stroke....................62
The Impact of Stroke on the Family and Individual...........62
The Meanings of the Stroke for Individual Life...............64
Stroke in Social Context.....................................66
6. DISSCUSION AND CONCLUSIONS...................................69
Some Differences between Patients and Caregivers.............74
Limitations of the Study.....................................74
Implications for an Intervention and Future Recommendations..75
A. HUMAN SUBJECTS RESEARCH COMMITTEE AT THE
UNIVERSITY OF COLORADO APPROVAL........78
B. TOPIC GUIDE OF THE INTERVIEW ..........79
C. FUNCTIONAL EVALUATION: BARTHEL INDEX...81
1. Demographic characteristics of stroke patients and caregivers.................43
2. Descriptive characteristics of stroke survivors...............................44
The political economy of Mongolia has changed gradually since the
elimination of the socialist political economic system and the shift to a market
economy. This political and economic transition has affected the countrys health
care as well. The economic transition has led to deteriorating health indicators. The
transformation of the health care system from an essential social service of
government to a commodity has affected health status, particularly among the poor.
Though national health insurance reforms and the development of a universal
primary health care system has improved health care access considerably,
particularly in urban areas, the system focuses primarily on essential care for
women and children, and not on chronic disease care and management among older
Mongolians. Little is known about chronic illness experiences such as stroke in the
aging segments of the population. Hypertension rates are very high among urban-
dwelling Mongolian adults, due most likely to high sodium intake and obesity.
Hypertension has led to an epidemic of cerebrovascular accidents (CVA), or stroke.
Mongolia like many other developing countries has been experiencing health
transition, which represents the shift in morbidity and mortality from infectious
diseases to non-communicable diseases such as diseases of circulatory system,
cancer and injury. Stroke or CVA is becoming a leading cause of disability and an
economic and social burden for the families of victims.
The local meanings given the illness have a significant impact on peoples
sense of self, and their roles in family and kin groups. Furthermore, the impact of
stroke on victims, psychologically and socially, can have an effect on their
rehabilitation. Individuals within the first six months after a stroke can make
considerable progress in recovering neurological function. Factors that affect the
persons willingness, motivation, and drive to seek rehabilitation services can thus
have an impact on their prospects for recovery.
It is thus important to chronicle the local meanings of stroke. How do stroke
survivors in Mongolia define, construct, and respond to the experience? How do
these factors affect health care utilization, social relationships, and, ultimately,
rehabilitation? This study proposes to illustrate how this particular social and
cultural setting shapes stroke as an illness. I ask how the illness meanings
(Kleinman 1988) of stroke are related to a decision to seek health care, access to
relevant health care services, and the impact of stroke on individuals and families.
The thesis presents findings from an interview study conducted with stroke
survivors and their caregivers in current Mongolian political economic context. The
interview study adopted a phenomenological approach to focus on the lived
experience of illness as a culturally constituted reality (Good & Good, 1994;
Six chapters comprise this thesis. In the following pages of this chapter I
present an introduction to the problem, the specific aims, and significance of the
study. Chapter two presents a relevant review of the literature on the experience of
stroke. The chapter also includes some discussion of the epidemiology of stroke
worldwide, with special attention given to the situation in Mongolia. Theoretical
frameworks for understanding stroke in anthropological perspectives are also
discussed. In chapter three I discuss the methods used for the study. In chapter four I
present the main results. In chapter I present findings of the study. In chapter six I
discuss the implications of these findings and present recommendations for further
research and consideration.
The specific aims of this study are twofold:
1. To conduct twenty, in-depth, open-ended, informal interviews with stroke
survivors between the ages of 50-65 in Ulaanbaatar who have suffered a
stroke one or more years prior to the interview.
2. To conduct twenty, in-depth, open-ended, informal interviews with stroke
survivors family members/care takers in Ulaanbaatar, Mongolia in order to
determine the challenges faced in caring for stroke victims, and thus to
determine family and care giver needs for support services.
Significance of the Study
It is hoped that the findings of this study serve to identify services needed by
stroke victims, improve access to health care by those suffering from stroke, and
find ways to help families care for a family member who has suffered a stroke. In
other words, this study will provide important information to establish effective
interventions for patients with stroke, their families, and health care providers
through understanding various aspects of the experience of patients with stroke.
REVIEW OF THE LITERATURE
What is a Stroke?
According to WHO (1989), stroke is defined as an acute neurological
dysfunction of vascular origin with rapidly developed clinical signs of focal or
global disturbance of cerebral function lasting more than 24 hours Dunkle, 1987,
p.7). It is a sudden event, which can cause a considerable degree of physical
disability and may lead to social maladjustment. It is a major cause of chronic
disability and the source of a heavy burden on patients relatives and friends, as well
as consuming a great deal of the resources of the health and welfare services
(Anderson, 1992). Age and hypertension are the most important risk factors for
stroke (Niphon, 1998).
Stroke is particularly a problem of elderly people. It is the leading cause of
disability and dependence, especially among aged people. The longer an individual
lives, the more likely it is that stroke will occur, since the incidence of mortality
doubles every decade after the age of 50. Moreover, Dunkle (1987) states that
recovery from stroke in the elderly is often more prolonged, with greater long term
disability because of the lack of physiological reserve associated with aging and
coexistent disease (p.124). It also has been regarded as a disease associated with
changes in lifestyle and aging.
At present, it is estimated that 200 people in a population of 100 000 will
have a new stroke each year (Wade, 1994), of which 30 % will die in the acute
phase and a further 35% will have severe physical or cognitive residual disability
which will prevent them from functioning independently in the community without
additional support (Wade, 1994).
In a population of 100 000 people there are roughly 750 survivors of stroke,
most of them living in the community with, or near to, family, and with varying
levels of disability (Wade, 1994). About a quarter of the people who suffer a stroke
die in the first month, but more than half survive for a year or more (Wade, 1994).
Patients who survive the first weeks after a stroke along with their families
face a complex process of change and accommodation. This may lead to major
changes in lifestyle, not only in patterns of social activities, housing, family
relationships and financial circumstances but also in values, expectations and
priorities (Anderson, 1992, p.23). The perception of meaning of life altered in
many patients. Anderson (1992) states that the meaning of stroke and response to
disability depend upon access to different elements in the armoury of resources a
system of personal, informal, community and institutional support (p.3). According
to him these resources are not distributed equally among people (with or without
chronic illness) but may vary by sex, social class, age and society.
Epidemiology of Stroke Worldwide
Worldwide, the country with the greatest stroke mortality is Japan (Fawcus,
2000). In Western countries such as in the US, strokes are a leading cause of death,
ranking third behind heart disease and cancer. It is a major medical problem in
developed countries and presently the third major cause of mortality in developing
Worldwide today approximately 500 000 people suffer a new or recurrent
stroke each year. In the US, of the two million stroke victims alive, only 10% will
recover fully, 40% will be left with a mild disability, and 50 % will be left severely
disabled, many requiring institutional care (Fawcus, 2000).
Niphon (1998, p.19) states that stroke in the developing world is less well
documented, and some data are not retrievable because of the language barrier or
the limited dissemination of data collected. However, more than two-thirds of the
worlds populations lives in developing countries, and one of the consensus
statements from the Asian-Pacific Consensus Forum on Stroke Management
predicts that in the next 30 years the burden of stroke will grow most in developing
countries rather than in developed countries (Niphon, 1998, p.20). The importance
of quality of life after stroke is widely acknowledged in developing countries, but
this approach is still lacking in developing countries because it requires a team
effort involving resources, the effort of many people, as well as the patients
(Niphon, 1998). According to Niphon (1998) this team must meet regularly to
discuss assessment, goals, interventions, and evaluation for each patient by using
locally available and culturally appropriate resources, such as traditional massage as
a substitute for physical therapy in rural areas where no physical therapist an
available. The course and prognosis of stroke in the developing world is uncertain
because of the lack of long-term follow-up data. Depending on the length of the
follow-up, the percentage of stroke survivors in developed countries with recurrence
of stroke is 15-40% (Niphon, 1998). The likelihood of stroke recurrence in the
developing world is expected to be even higher because admission to treatment for
control of risk factors, especially hypertension, and effort to prevent stroke are poor.
The Asian-Pacific Consensus Forum on Stroke Management developed
serial strategies and specific interventions for improving stroke management in
developing countries by the 2010 (Niphon, 1998). The primary strategies are to
identify local individuals or teams within a defined community who are responsible
for the implementation and delivery of stroke services e.g., rural and community
health workers of stroke teams; identify or establish key national institutions or
organizations which promote training and education of health professionals and
disseminate information; establish a minimum data set to document and monitor key
indicators of stroke at national, regional and local levels.
Neurological Impairment of Stroke
The main symptoms of stroke vary, but frequently involve some period of
unconsciousness, which may last for moments, hours or days. On recovering
consciousness the patient commonly has one or more of the following difficulties:
Anderson (1992) describes it as follows:
Paralysis of one side of the body (hemiplegia); slighter loss of
strength in one arm and one leg (hemiparesis) awareness of, the
affected side of the body, weakness on one side of the face;
difficulty in seeing out of the one side of each eye; difficulty in
understanding what is said and in speaking to others, difficulty in
coughing or swallowing; and incontinence of bowel or bladder
Some of these problems are associated with each other, due to the site or
nature of the neurological lesion. Those who experience with weakness or paralysis
on the left side of their body (left hemiplegia) more often have visuo-spatial and
perceptual difficulties; patients with right hemiplegia are more likely to suffer from
impairments in communication, particularly speech (Dunkle, 1987).
Those who survive the incident are often left with a variety of medical
problems, including physical and cognitive deficit and speech dysfunction. Stroke
survivors are more likely to experience a variety of psychological problems arising
from concerns regarding their present situation. These include: a feeling of loss of
control, fears about death and disfigurement, social isolation, helplessness and
worries about their abilities to fulfill a social role (Thompson, et al., 1991, p.90).
It is argued that the almost no recovery occurs after six months (Wade,
1994) and rehabilitation therapy plays a significant role during this period of time.
Once the patient is diagnosed and clinical situation has stabilized, a two-to-three
week period of rapid recovery occurs, and followed by a slower but continuing
improvement over three months (Fawcus, 2000). Ideally, rehabilitation from stroke
starts from the day of admission to the hospital and should be accomplished with the
assistance of a multidisciplinary team. This team includes the patient, nurses,
physiotherapists and caregivers all working toward a goal of to rehabilitation
(Fawcus, 2000). This rehabilitation generally seeks to reduce the disability and
handicap followed by stroke. As life expectancy increases, rehabilitation is expected
to become increasingly necessary to .maintain the quality of life for older people
(Wade, 1994). Early rehabilitation for stroke is defined as rehabilitation provided
during the acute phase of the illness. This includes the first three-six months after
the event. Overall, the goals of rehabilitation include the improvement of quality of
life, satisfactory reduction in complications and helping the patient achieve
maximum capacity for a normal life.
Stroke is considered a family illness: it presents challenges and dilemmas
to those who live with or support patients (Anderson, 1992). For stroke patients and
chronically ill generally, the family is the main source of emotional, social and
practical support. There has been growing awareness in western countries
importance of family, neighbors, mutual aid, and voluntary organizations. Most
stroke survivors in the Western world are supported by close kin members who play
an important role in rehabilitation and care. The majority of stroke survivors, after
relatively short hospitalization are discharged home with the help of a family
caregiver, often a spouse. However, it is unknown that how much effort and
potential inputs are required for providing adequate care for stroke victims.
Few studies have looked at the experiences of patients caregivers. Kaufman
et als study (2005) found that stroke patients and caregivers need to be given
sufficient information about stroke and caregiving. In particular, carers wanted
information about reducing the chances of stroke recurrence. Low et als (1999)
review on impact of stroke on informal carers (close family members such as
spouses or their adult offspring that were not paid or trained) have found three
important things: (1) carers psychological health is negatively impacted by caring
of stroke victims; (2) carers play an influential role in promoting successful
rehabilitation outcome in stroke survivors; and (3) carers are an important resource
not only in the promotion of successful health outcome in stroke victims but also in
more cost-effective use of health and social service resources.
Additionally, in Korea, Suh et al. (2004) found that the care of caregivers is
likely to reduce the risk of post-stroke depression in patients: The support provided
by caregivers or their psychological status is supposed to be critical to the
psychological adjustment of stroke survivors, since most stroke survivors are
dependent on them due to physical and cognitive limitation (Suh, et al, 2004, p.4).
Another important feature of caregiving is that stroke patients responses to
stroke are significantly influenced by how the family and main supporters react to
them and their illness (Anderson, 1992). It also depends upon the relationship
between the supporter and patient: those who are in close and warm relationships
with caregivers have been shown to have better physical improvement than those
who had poor relationships.
Because it challenges both the mental and physical resources of the
individual carer, taking care of stroke survivors is a stressful process. Many stroke
survivors may have access to additional support, in the form of physical and
emotional help, by close family members such as spouses or their adult offspring.
Support of caregivers does not only benefit health of stroke victim but also
represents cost-effective care. Low et al. (1999, p. 712) stated that, economically,
their support enables their dependent stroke kin, who would otherwise require either
rest or nursing home placement, to remain in the community.
Given the stress of caregiving, increasing attention has been given to
supporting caregivers. Counseling programs have been suggested by some observers
to be an most effective intervention for caregivers, which in turn tends to improve
the quality of life of stroke patients and enhance rehabilitation as well (Visser-Meily
et al., 2005).
Previous Studies and Social Cultural Dimensions of Stroke
Relatively few studies addressed the experience of stroke from the patients
point of view. These studies fall into the following categories: (1) nursing studies of
the experience of stroke (Mumma 1986, Doolittle 1991,1992, Folden 1994,
Haggstrom et al.1994); (2) studies in relation to psychological changes (Robinson
and Price 1982, Robinson et al. 1985a, Morris et al. 1992, House 1987a, Whitney
1994, Thompson 1991, Evans 1988, Parikh et al. 1987); and (3) social changes
following life after stroke (Feibel and Springer 1982, Dejong and Branch 1982, Lind
1982, McKevit 2000,Brandstater and Basmajian 1987). Review of these studies
reveals various dimensions of the patients experience of stroke and rehabilitation.
According to these studies, the impact of stroke causes physical, psychological and
social changes for the patient which lead to frustration and fears both for patient and
family. Experiences of these changes among stroke patients have been described in
1. Patients experience of physical changes following stroke: Stroke survivors
experience of living with stroke and their future expectations was explored by
Haggstrom et al. (1994). Four themes were found: uncertainty; sadness and
mourning; gratefulness, hope and satisfaction; and isolation. In the study by Folden
(1994) the patients goals were related to improving their functional abilities and
returning to some of their former activities. In the study by Doolittle (1991), for
participants recovery was seen as a return to the existence they had lived before the
stroke, or pre-stroke life. Patients and spouses perception of losses following
stroke conducted by Mumma (1986) showed three major categories of loss among
stroke patients: activities, abilities and independence.
2. Patients experience of psychological changes following stroke: The
suddenness of the stroke, the loss of body control associated with evolving
weakness and the uncertainty of the future life set the scene for a shocked
immobile self, and seriously challenged the persons life-world (Doolittle, 1992).
The participants in Doolittles study described having many sleepless nights and
nightmares during this time. Insomnia was aggravated by the fact that they had
difficulties with moving their bodies (Doolittle 1992). These periods are described
by participants as lonely and humiliating, especially when they needed assistance
with using the toilet. These descriptions show how shocking and frightening the
initial expectation of stroke is to patients. In a similar study, Robinson and
colleagues studied depression in stroke patients (Robinson & Price 1982, Robinson
et al. 1985a, House 1987a, Morris et al. 1992). Post-stroke depression is explained
as the consequence of the behavioral manifestation of neurophysiological or
neurochemical responses to brain injury (Robinson et al. 1985a). These researchers
suggest that post-stroke depression may represent more than a simple reaction to
functional impairment (Morris et al., 1992, Evans et al., 1988, Whitney et al., 1992).
It appears that one cause of post-stroke depression is neurophysiological. In the
acute post-stroke period, it has been found that the single most important
determinant of major depression is the location of lesion in the left anterior
hemisphere (Robinson et al. 1985a, Parikh et al. 1987).
3. Patients experiences of social changes following stroke: Studies have
shown that the impact of stroke reaches beyond the patients physical and
psychological being, as it also involves patients social existence and lifestyle. In the
study conducted by Doolittle (1991), patients describe that because of the
tremendous fear and uncertainty created by stroke, they needed to regain a sense of
control over their lives. Depression has also been correlated with failure to resume
pre-stroke social activities (Feibel and Springer, 1982).
Several studies also identified the importance of family involvement to the
success of rehabilitation efforts of the stroke patients. These studies have shown
effective family involvement to be related to functional improvement in stroke
patients (Dejong & Branch 1982, Lind 1982, Brandstater & Basmajian 1987).
These studies have shown that the stroke patients often has clear goal for
himself in relation to functional abilities, against which he measures all success and
forward progress in his rehabilitation. The goals are typically a return to full pre-
stroke functional abilities, or to the social roles and lifestyle they had before the
The psychological impact of stroke on the patient is great, because of the
feelings of fear, uncertainty and loss of body control. Change in body image and
loss of body function, which may also cause social stigma, may cause unhappiness
to the stroke survivor as well. However, these studies of stroke patients are often
conducted with small groups in Western developed countries, and the sample
populations vary in characteristics such as the definition of stroke used, age degree
of initial disability, management in home, hospital or rehabilitation centre, time
onset of the stroke, and measures of outcome or recovery. Research in cross-cultural
setting, drawing on more diverse samples of individuals are thus needed before any
firm conclusions can be drawn. More specific work from a medical anthropological
perspective is especially needed.
Several medical anthropologists have studied stroke. They have focused on
such themes as the uncertainty of stroke trajectory (Kaufman, Becker, 1995) and the
phenomenological exploration of stroke (Kaufman, 1988). Kaufman and Becker in
their study (1995) found that stroke has uncertain trajectory and disrupts the future
life of patients. Kaufmans findings (1988) have shown that patients and families
have expectations that their chronic conditions should be managed by health care
professionals. Kaufman (1988, p.351) stated that structural realities and cultural
knowledge impinge on the illness experience of stroke patients (p.351).
In the US stroke is experienced as a devastating experience a biographical
disruption (Bury 1982, Kaufman 1995). Kaufman and Becker used the sociological
concept of biographical reconstruction (Bury, 1982; Williams, 1984) in order to
explore experience of stroke. They examined American stroke patients efforts to
come to terms with the disruption, which the stroke event and the subsequent
physical disabilities represent. According to them major illness such as stroke
interrupts and transforms a persons biography, forcing them to take control of the
biographical process through reflective decision-making. They focus on the need to
repair and heal the self by revising and recreating the biography so that it makes
sense in light of the current changed circumstances of an individuals existence.
In contrast, Pound et al. (1998) have criticized the application of
biographical disruption to the case of older stroke patients in East End of London.
These authors found that their respondents experience of stroke was viewed in the
context of their previous adverse life events, i.e. a lifetime of poverty, previous
illness, and expectations of physical deterioration in older age. They argued that the
disruption model developed from research with people under the age of 54 years,
did not take into account pre-existing chronic illnesses and previous experiences
with hardship. Among the working class in the East End of London stroke was
regarded as a normal crisis among poor older stroke survivors. Their response to
the stroke revealed more about the nature and context of their lives than about the
stroke itself. It was unlikely to interrupt individual biography since this was
experienced as already fragmented. Stroke was thus not considered to be that
bad among older working class East End of London.
Summary of the Literature Review
The review of literature on stroke from the perspective of patients and
families illustrate general understanding of patients stroke experience: what
problems and challenges distress them, what are the consequences of stroke, what
are the patients goals in rehabilitation, and how they view the main effects of stroke
on their lives. The two cross-cultural studies that were conducted in the US and
England provide some information on cultural and sociological dimension of stroke.
Most of the previous work on stroke that has been contacted in Mongolia is
epidemiological in nature. Little is known about the illness experiences of people in
this country, particularly experiences of chronic illness such as stroke. Moreover, as
the association of chronic illness with quality of life, and research on the subjective
experience of chronic illness almost have not been examined. In order to explore
Mongolian stroke patients experience of illness in the following part of this chapter
I present information on the current Mongolian political economic and health
Mongolia, situated in Central Asia, is one of the most sparsely populated
nations in the world, with only 2.5 million people spanning a territory half the size
of India and four times that of Japan. A little over 95 percent of the population is
Mongolian and 78.8 percent out of it belongs to Khalkh ethnic group. One-third of
Mongolians reside in the capital city, Ulaanbaatar, another third live in smaller
towns, and the remainders live as herders of sheep, goats, camels, horses, and yaks
(Sneath, 1999). The population of Ulaanbaatar comprises approximately 32 percent
of the total population of Mongolia and 56 percent of the total urban population.
From the 17th to the early 20th centuries, the territory of Mongolia was an
economic and political colony of the Manchu Qing dynasty. In the early 20th
century, with the help of Soviet army, Mongolia established its autonomy from its
southern neighbor and, in 1924, became the second communist country in the world
after Soviet Union (Kohrt et al. 2003). For 70 years, under the guidance of the
Soviet Union, The Mongolian Peoples Republic maintained a centrally-controlled
economy. From 1960 to 1990, life expectancy rose from 46.7 to 62.5 years. The
adult literacy rate rose to 96% by 1990. The government guaranteed health care for
the population: 98% of women received prenatal care and 87% of one-year olds
received full immunizations (Griffin, 1995a). Under the socialist system all medical
services were financed from the state budget and were officially free of charge for
Major political and healthcare changes began in 1990, when Mongolia
ceased to be under the Soviet Union control and stopped receiving developmental
aids as one of the Eastern Block satellites (Janes and Chuluundoij 2003, p.l). In
1990 Mongolia embarked on a process of radical economic reform that was
intended to transform the economic system based on central planning to an
alternative system based on market principles (Griffin 2001). Indeed, as Janes and
Chuluundoij state (2003) at this period Mongolia, a former client state of the
Soviet Union, undertook sweeping free market economic reforms (p.l). The
transition from centrally planned to a market oriented economy has been
accompanied by a downturn in the average standard of living, a spectacular increase
in poverty, and greater economic uncertainty in the distribution of income and
productive resources (Griffin, 2001). Janes and Chuluundoij write (2003), the
reforms came as a great shock to Mongolia and Mongolians, resulting in widespread
food shortages, reports of famine, widespread unemployment, and collapse of public
health and health care (p.2). In other words, the decline of investment in public
goods-social services, health care, and education has accompanied the economic
downfall. By 1995, the average income dropped by 30%, poverty rose by 27%, the
crime rate increased by 166%, and morbidity rose by 80% (Griffin, 1995a).
Alcoholism has risen in all demographic groups (UNDP, 1998). Currently,
approximately 17-25% of the labor force is unemployed, partially due to the closing
of livestock collectives, drops in crop farming, and decreasing national expenditure
for public and civil service employment (Asian Development Bank, 1998). Health
care expenditures fell from 6% in 1990 to 3.3% of GDP in 1993 (Janes and
Chuluundoij, 2003, p.l). During this same time, GDP dropped sharply, resulting in
substantial disinvestments in health care. Stocks of essential drugs and medical
supplies disappeared. While public expenditure on health has declined, the cost of
medical treatment has risen substantially in recent years and this too, has
discouraged the poor from seeking treatment for their illnesses. Thus, it can be said
that a primary impact of socioeconomic transition was on health, particularly the
health of women, children and older people, combined with increases in
unemployment, homelessness, and poverty.
Before 1990, Mongolia had built a rationally distributed and accessible
health care system. Health care organization based on a five-step referral system
based on the administrative structure of the country: rural posts, somon (county)
hospitals, inter-somon hospitals, provincial hospitals, and national hospitals. Except
for drugs prescribed for children over three years of age and adults outside the
hospital, all the services provided by the health care system were free of charge.
However, after 1990 this system was considered overly expensive and
unsustainable. Over the last decade and one-half there has been an effort to move
away from the expensive curative system of care to a system more reliant on
primary health care services.
Since 1990, the privatization of health care has been declared legal but little
progress has been made to make health care a commercial venture (ORourke,
2001). During the transition period the public health sector has continued to provide
free services to the whole population, but the government is encouraging private and
co-operative practice by doctors. As a consequence, doctors and other professionals
who have established private practices are free to charge fee for service on the open
market. However, most people still rely on the services offered by the more familiar
polyclinics and health care centers where the institution of family doctors has been
introduced. Rather than consult a community-based specialist directly, patients now
first have to consult their family doctor who then may refer them to a specialist. A
voluntary health insurance system was introduced in the 1994s although some free
medical services are provided including emergency care and immunizations and
dental care for children.
Thus the Mongolian health system has changed from a system of centralized
specialist clinics to a family doctor system (general practitioner) since 1990.
Family doctors are most likely general physicians, pediatricians, or gynecologists
who have volunteered to join a family clinic. Clinics consist of three to six doctors,
and several nurses. They serve a well-defined catchment area. One doctor is
responsible for between 200-600 children under 16 years and the average patient
caseload numbers about 1000. Family doctors are obliged to visit infants under 3
months of age every two weeks and then every month until one year of age. They
are also required to visit elderly and homebound chronically ill patients at least once
Overall, the recent socioeconomic changes have contributed to poor health
in this nation. Because capitalist governments has shifted their emphasis from
human to physical capital, poor health and lack of access to social services results
from the deterioration in public health care, education, and social welfare (Griffin,
1999). The capitalist economy has shifted the grounds for economic security and
destabilized the financial position of women, the aged and those living in urban
areas without access to subsistence resources. One of the immediate effects of the
transition was the removal of the elderly from the labor force. In order to maintain
political stability, the capitalist government encouraged older workers to retire early.
However, retirement pensions have not kept at par with inflation (Skapa et al. 1996).
Due to inadequate pensions, elderly Mongolians are usually unable to support
themselves or contribute to their households. Consequently, both women and the
elderly have sought employment in the informal sector.
Although some progress is being made, Mongolia continues to struggle with
poor transportation and communication and infrastructure. Financial difficulties
remain a major challenge as the country seeks to develop economic self-sufficiency
and deliver modem health care to its people.
Demographic. Epidemiological and Health Transitions
Since 1990 the socioeconomic transition has occurred coincidently with
demographic, epidemiological and health transition in Mongolia. As a consequence
of these transitions the Mongolian populations patterns of birth, death, burden of
disease and social, economic, political factors occurring in society have changed
The demographic transition implies a decline of high fertility and child
mortality and an increase in life expectancy of populations. It is usually linked to
social and economic development, particularly better sanitation, immunization,
increased nutrition and improved health care. Even though the classic demographic
transition theory indicates that changes in modernization or industrialization bring
about decline in mortality, followed by decline in fertility modernization is not a
main cause of fertility decline in Mongolia. The decline in fertility has resulted from
socioeconomic, cultural, political factors formed by the countrys recent economic
transition. The countrys current demographic situation fits into stages of declining
mortality and fertility, though mortality has not declined rapidly and remains high
while fertility has been falling. Now the Mongolian population is relatively young -
life expectancy is 63 but there are increasing numbers of older people in the
The epidemiological transition which describes a shift of burden of disease
pattern from communicable (infectious) to noncommunicable, is applicable to
Mongolia. However, Mongolia shows different epidemiological transition model
that which has been experienced by Western countries. The country has been
experiencing relatively delayed epidemiological transition by undergoing mixed
stages. A mix of infectious, parasitic, and noncommunicable diseases characterizes
the pattern of burden of disease in Mongolia. Changing consumption patterns,
which have partly to do with globalization are leading to the emergence of a range
of chronic non-infectious diseases, such as cardiovascular disease, cerebrovascular
disease, and various cancers.
The health transition refers to the changes in the social, cultural and
behavioral factors that drive the demographic and epidemiological transitions. With
globalization there have been changing behavioral patterns, and an increasing
tendency of behavior-related pathologies within this society.
Mongolia is clearly moving through demographic, epidemiological and
health transitions. These transitions are not complete in comparison with the
Western experience. Life expectancy has been increasing, suggesting that an
increasing proportion of the population older. Noncommunicable diseases, including
diseases of the circulatory system, cerebrovascular disorders, including stroke,
various cancers have replaced infectious diseases as the main causes of mortality
and morbidity. Mortality decline, which is characterized by the reduction of
infectious disease mortality and morbidity, suggests that the population pyramid is
becoming more rectangular in shape. As the population ages, the burden of death
and disease will shift to older groups in the population. Chronic degenerative
diseases are becoming an increasing burden for older people in this country.
Stroke in Mongolia
The epidemiological data on stroke in Mongolia are poor and unreliable.
Worldwide, today stroke is a significant cause of adult mortality but rates of
incidence and mortality are higher in Eastern Europe than in the West1. However
there is an increasing incidence of stroke in many Asian countries and in the
Western Pacific Region of which Mongolia is a part. According to the WHO (1999),
in Mongolia, cerebrovascular disease is the leading cause of mortality and the third
leading cause of disability.
In last decade a steady increase in non-communicable morbidity is occurring
with cardiovascular disease, cancer and injury becoming the three leading causes of
death by 2000 in Mongolia. This is related to the epidemiological transition through
which the country has undergone. Such an increase in non-communicable disease
morbidity and mortality is a consequence of urbanization, sedentary lifestyle, stress
and lifestyle changes as well as the deficiency in prevention and early detection
programs. Mongolian people like to drink tea with salt, and this habit may cause
arterial hypertension, which is the leading cause of cerebrovascular diseases, or
stroke. Diseases of circulatory system have increased 1.4 times in 2001 compared to
1997. Since 1992 cardiovascular diseases have increased 1.8 times and have become
a leading cause of mortality in Mongolia (Narantuya et al. 2003). Risk factors for
cardiovascular disease include: smoking, alcohol consumption, lack of physical
activity, high salt intake related to traditional customs, and obesity. In a study of
1 The WHO MONICA study conducted in 16 European and two Asian countries found that age
standardized stroke incidence rates per 100.000 ranged from 101 to 285 among men and from 47 to
198 among women. There are also variations in mortality rates, which case fatality at 28 days
ranging from 15% to 49% among men and from 18% to 57% among women (Thorvaldsen, Asplund,
Kuulasmaa, Rajakangas, & Shroll, 1995).
hypertension in Ulaanbaatar Seijee et al. (2001) showed that cerebrovascular
diseases (86.2%) were the leading complication of hypertension. The Mongolian
diet in rural and urban areas is heavily dependent on meat mah or its dried form,
borts and particularly on diary products (tsagaan idee) with their seasonal
variation. The epidemiological transition is taking place to certain extent, given the
fact that there is an increasing prevalence of heart disease that has been observed
among the seminomadic herdspeople of Mongolia as well in urban residents. There
is reason to believe that a diet high in animal fat will produce high rates of
cardiovascular diseases in adults, even among those who continue the traditional
lifestyle, which was always largely based on meat and milk products (Beall and
Goldstein, 1992). Alcohol consumption is significant in Mongolia, and tobacco use
is increasing in prevalence among women and young people. Heart disease is
clearly associated with gender, age and smoking. According to the literature,
hypertension is clearly a risk factor for heart disease, but can also be viewed as a
health status variable in its own right.
In last fifteen years the incidence of stroke in Mongolia has increased
steadily in the capital city Ulaanbaatar. The average annual rates of stroke in
Mongolia are 296/100 000 (males 312/100 000, females 262/100 000). The annual
average mortality rate in the population is 1.62-1.90/1000 depending on age and
gender (Baasanjav et al. 2003). The incidence rates of hemorrhagic stroke in
population of Ulaanbaatar is conspicuously higher than other countries, even than
the incidence of Akita, Japan obtained for the period of 1964-1969, then considered
as the area with the highest incidence rate of stroke in the world (Baasanjav et al.
However, stroke care expenditures in Mongolia are the lowest and this is not
simply reflected in lower costs (related to the costs of medical staff and in hospital
stays for example), but also lower levels of input, including professional time spent
with each patient. The mean hospital bed for acute stroke patients is ten days.
Due to an increase in life expectancy and decrease in birth rate, the
proportion of aged population is increasing rapidly. Population prediction suggests a
significant increase in the elderly population. Because stroke is regarded as disease
of old age, it will remain a major social burden in Mongolia. Thus it is important to
explore Mongolian stroke patients illness experience: how they describe their
illness experience, what is important for their lives and what is the meaning of
stroke for them.
Theoretical Framework in Medical Anthropology
There are many approaches to health and illness within the field of
anthropology, such as biological, ethnomedical, critical, applied and political
economic approaches. Each of these approaches share four essential principles: first,
illness and healing can best be understood from a holistic view with respect to
complex interactions between human biology and culture; second, disease is
influenced by behaviors specific to cultures and sociopolitical aspects; third, cultural
filters of beliefs and epistemological assumptions are used to interpret the human
body and symptoms associated with it; and fourth, cultural characteristics of our
healing systems have important pragmatic consequences for the acceptability,
efficacy, and improvement of health care in human societies (Brown, et al. 1998:
2). Within these four essential principles the medical anthropological perspective to
on question of health and illness is framed.
The ethnomedical perspective of medical anthropology focuses on health
beliefs and practices, cultural values, and social roles. A key concept in
ethnomedicine is explanatory models (EMs) of illness, introduced by Arthur
Kleinman (1988). Kleinman stated (1988) the illness experience includes
categorizing and explaining, in common sense ways accessible to all lay persons in
the social group, the forms of distress caused by those pathophysiological
processes (p.4). According to him the patients illness experience is framed by so-
called patients EMs. Medical anthropologists have concerned with illness
experience to refer to a patient-centered view of sickness, especially the social and
psychological aspects (Kleinman, 1988, p.6). Also, it has been shown by medical
anthropologists that there is cultural variation in the type and severity of symptoms
regarded as important by different social groups.
The disease-illness distinction is important conceptually within EMs of
illness (Kleinman, 1988). Disease, defined clinically as deviation from medical
norms, is considered to be a Western biomedical category and is not culturally
universal. In other words, disease refers to a malfunctioning of biological and/or
psychological processes, while the term illness refers to the psychosocial experience
and meaning of perceived disease. Disease affects single individuals, even when it
attacks a population; but illness most often affects others as well (e.g., family, social
network, even at times an entire community). Disease is an undesirable
physiological process or state. In some cultures, the illness is believed to be
constituted by both the affected person and his family: both are labeled ill. Illness is
a profoundly social phenomenon that may or may not rest on disease as a
foundation. It has more to do with perception, behavior and experience than with
physiological processes. Thus, illness can be depicted as the social and
psychological phenomenon that accompanies these physiological problems. Illness,
the experience of impairment or distress, is culturally defined and constructed.
Additionally, Kleinman introduced the third term (1988), sickness, which refers to
the understanding of a disorder in its generic sense across a population in relation
to macrosocial (economic, political, institutional) forces (p.6).
Explanatory models (EMs) are notions about the causes of illness, diagnostic
criteria, and treatment options. EMs of illness are characterized by five elements,
which describe: l.the cause of sickness; 2.circumstances surrounding the initial
onset of the sickness and relevant symptoms; 3. the physiology of the sickness; 4.the
expected course of the sickness and appropriate behavior; and 5.available
treatments. This model has been developed to describe individuals cognitive
models of their own illnesses as this model relate to cultural issues in clinical
settings. In other words, EMs are sets of beliefs or understandings that specify for an
illness episode its cause, time, and mode of onset of symptoms, pathophysiology,
course of sickness, and treatment. The influential concept of EM of illness also
recognizes the importance of context. Thus, the EMs are formed and employed to
cope with a specific health problem. Kleinman explains that we use illness
meanings to make over a wild and disordered natural occurrence into a more or less
domesticated, mythologized, ritually controlled, therefore cultural experience
(Kleinman, 1988, p.48). He suggests that illness has meaning in three senses.
Firstly, symptoms have meaning in a local cultural system and are reflected in the
way people think and talk about symptoms (Kleinman, 1988, pp. 11-14). To
understand this meaning, one has to attend to societys normative conceptions of the
body and the local styles of performing bodily functions. Secondly, some
symptoms and disorders acquire cultural salience at particular times and social
circumstances (Kleinman, 1988, p.18). Thirdly, illness acquires personal and
social significance in the context of the life world of the sick person (Kleinman,
Kleinman described clinical conversations as transactions across explanatory
models, leading to the clinical construction of reality (Kleinman, 1988). He argues
that inherent discrepancies in underlying belief systems between patients and
practitioners shape the way in which illness is experienced, interpreted, and given
meaning in our culture, makes explicit the rationale for eliciting the patient and
family perspective (1988, p.75). According to this approach, each culture organizes
its ideas about illness according to certain core symbols.
EMs of illness have been considered in a large number of studies, located in
both the developed and developing world. These studies traditionally focus on the
experience of patients, and demonstrate the role importance of culture in shaping a
persons construction of the meaning of illness and disease. Cultures, in making
sense of illness, have clusters of EMs, the lenses through which cultures perceive
and understand illness. Kleinmans EMs are the lenses through which people can
make sense of illness, and are informed by powerful narratives, that serve to locate
the models within cultural and the patients social milieu.
Kleinman has suggested that clinicians can elicit a patients EM by asking a
series of questions: For example: What do you think caused your problem? Why
do you think this illness happened at the particular time that it did? How bad do you
think this illness is? What worries you most about this illness? What kind of
treatment were you expecting to get? What are the most important results you
expect to get from treatment? Kleinman states (1988) that notions about an
episode of sickness and its treatment that are employed by all those engaged in the
clinical processes (p.35). EMs are formed from a diverse array of cultural
symbols, experiences and expectations that an associated with a particular category
Understanding the illness experience has been the goal of the social
scientists as well. As anthropologists have contributed to the illness experience by
exploring the relationship between illness and culture; for example, by examining
(EMs) of illness, health practices, customs, and behaviors, including ritual and
traditional healing practices. Medical sociologists have examined such aspects of
illness experience as physician-patient relationships, discourses relating to the
illness experience, the social ramifications of lifestyle (such as stigma), illness
trajectories, and the patient role. Many chronic illnesses cause social stigma which
creates long-lasting suffering for the individual.
Stigma is the negative social attribution placed on people because of their
disability or illness. Coffman defined stigma as a sociological phenomenon in
which an individual is devalued and shunned because the illness or disability makes
her or him different or not normal (Kleinman, 1988 p.159). The stigmatized
condition becomes the master status that overpowers all other social attributes
(Kleinman, 1988, p.160). This is especially prevalent when a chronic condition is
obvious and public. Thus, the human suffering caused by some illnesses may be in
the form of discrimination, stigma, damaged self-concept, and social ostracism.
Suffering related to the social and psychological dimensions of illness may be worse
and last longer than the disease itself; this is especially the case with chronic illness,
such as stroke.
Thus recognition of EMs and attempts to access a patients and family
members EMs about a particular illness episode will generally provide information
about any cultural health beliefs and practices relevant to the individuals illness
episode. Furthermore, with the knowledge of the patients and family members
EMs about the illness, the health care practitioner can provide appropriate patient
education about the disease and illness, and effectively negotiate with the patient a
treatment plan that will be acceptable. The illness experience may include social,
cultural and psychological dimensions that cannot be cured with pure biomedicine.
So, the illness perspective view, incorporating individuals their families as they
make sense of, respond to, cope with, and adapt to symptoms and disabilities are
significant to treat disease (Klienman, 1988, p.27). Kleinmans socio-cultural
framework for eliciting patient-centered meaning and experiences, which centers on
the elicitation of EMs, constitutes the theoretical perspective of this study of
Mongolian patients experience with stroke.
METHODS OF THE STUDY
In this study a phenomenological perspective was used to access the reality
of patients experiences subsequent to. This approach was used for two reasons:
First, the phenomenological perspective permits the investigator to capture and
describe how people experience some phenomenon-how they perceive it, feel about
it, judge it, make sense of it and talk about it with others (Patton 2002). Second, it is
a useful exploratory methodology in areas where there is little known about the
phenomenon under study.
Setting and Sample of Study
This exploratory study took place in Ulaanbaatar, capital city of Mongolia
during the eight weeks period of June 1 to August 1,2004. The study was carried
out in the Departments of Neurology in two central clinical hospitals in Ulaanbaatar,
at the National Rehabilitation Center, and two sanitaria (long term care facilities: the
Orgil sanatorium and the Ulaanbaatar sanatorium) in Ulaanbaatar. Patients with
a diagnosis of chronic/long-term consequences of cerebral infarct or hemorrhage at
one and more years following the stroke were recruited for the study.
Purposive sampling methods were used to select interviewees who varied in
terms of their age and stroke severity. Purposeful sampling is a strategy to be used
to help manage the trade-off between a desire for in-depth, detailed information
about cases and the desire to be able to generalize research findings (Patton, 1980,
Patients younger than 50 and older than 65, and those with severe speech or
cognitive impairments that would make interviewing difficult were excluded from
Subject Recruitment Procedure
Using an open-ended, in-depth, interview topic guide approach, qualitative
data were collected from 20 stroke survivors and 20 caregivers/family members at a
time that was convenient for them. Additionally, the investigator took notes during
the interviews. The open-ended design permitted patients some control over the
conversation, and they were permitted to introduce topics, and respond to questions
in the order preferred. Such methods were an efficient way to investigate an under
the searched topic and allowed patients to explain their perceptions accurately in
their own terms. A topic guide was developed to guide the interviews and is
presented appendix B. Additionally, demographic data were obtained from each
All but three interviews were tape-recorded for later listening and backup of
the handwritten notes. In three cases respondents declined to have the conversation
recorded thus the interviewer relied on hand-written notes. All patients were
contacted initially by their physician who explained the study, and asked if they
would like to participate. CU-Denver Human Subjects Research Committee-
approved informed consent procedures were administered before the interview
commenced (UCD-HSRC approval # 2004-114).
All interviews were conducted at least 12 months after the stroke. The range
was 12-26 months post-stroke: five interviews were conducted 12 months after the
stroke, two at 15 months and the remainder ranged from 16 to 26 months.
Interviewees varied widely in their willingness to speak in depth about their
experiences and provide me their views. The interviews varied in length from 30 to
In this study, data analysis entailed reading and rereading transcripts, which
were coded manually. Codes were grouped into categories reflecting specific issues
dictated by the topic guide and emergent themes. Transcripts then were checked for
the presence or absence of these categories. The first transcripts were coded for
concepts or themes, which were documented in a coding memo. In subsequent
interviews, attention was paid to the appearance of similar concepts as well as to the
emergence of new concepts, continuously making comparisons between the coding
scheme and interview transcripts in an iterative process.
Verbatim quotations have been used in the presentation of my findings to
illustrate response categories. All quotations are from stroke patients (numbered one
to twenty) unless labeled caregiver.
RESULTS OF THE STUDY
A total of 40 interviews were completed: twenty with stroke survivors and
twenty with caregiving family members all. Of the 20 respondents, 9 were recruited
from the departments of Neurology in two clinical hospitals in Ulaanbaatar, 7 were
recruited from two sanitaria, and 4 were being treated at the national rehabilitation
center in Ulaanbaatar. Of those interviewed, 7 were male and 13 were female. They
ranged in age from 50-63 years, with mean age of 56. 15 interviews were carried out
with the stroke survivor alone; in four cases the spouse participated and in one case
an adult daughter participated. Except for these five cases, stroke patients and
caregivers were interviewed separately.
Disability level was measured using the Barthel Index (BI)2. Three people
were classified as independent in activities of daily living (BI=20), while the
remainder ranged from two (severely disabled) to seven (moderately disabled). Only
three people were working at the time of the interview, having recovered
sufficiently from their stroke. Five people were already retired when they had their
stroke while five had been forced to leave work following their stroke. All
survivors lived in Ulaanbaatar.
2 The BI, one of the most widely used outcome scales in stroke research, measures basic functional
ability including bowel and bladder continence, ability to transfer from bed or chair, walk, feed, wash
and dress (Mahoney and Barthel, 1965).
Thirteen of the survivors were married, three were divorced, and four
women were widowed. Except for two survivors who lived either at home, or in a
nursing facility, the respondents were living at home with their spouse and/or
families. Nine respondents lived in an apartment, while ten lived in a ger compound.
All except three respondents were experiencing some residual impairment from
their stroke and many of them used various assistive devices (canes, walkers, or
wheelchairs) to aid in mobility.
It was difficult to classify the social class of respondents because they had
worked different jobs during working fives. In any case, their fives spanned the
political economic transition of the early 1990s, and many had experienced
significant changes to their socioeconomic position.
The age of caregivers interviewed ranged from 23- 68 years (mean age of
45). Demographic characteristics of stroke patients and their caregivers are
presented in Table 1. Table 2 presents the characteristic of stroke survivors.
Demographic characteristics of stroke patients and caregivers
Characteristics Stroke patients N=20 Caregivers N=20
Sex Male 7 8
Female 13 12
50-59 14 6
60-69 6 5
Civil status married 13
Housing situation apartment 9
Living with spouse 12
Educational status lower vocational or less 3 0
Intermediate vocational or 12 14
higher vocational or university 7 6
Relationship with spouse 12
stroke patients daughter/son 7
Disability level (BI) Independent (score 0-14) 3
Mild (score 15-19) 8
Moderate (score 10-14) 7
Severe (score 0-4) 2
Descriptive characteristics of stroke survivors_________________________________
Name Age Sex Living with Former occupation Disability level(BI)
1. 51 m wife, 5 children driver moderate
2. 64 f son retired from sewing master moderate
3. 50 f husband, daughter chief of province mild
4. 51 f husband, son tailor independent
5. 53 f husband tailor mild
6. 58 m wife musician moderate
7. 52 m nursing home repairman moderate
8. 65 f two daughters retired from seller severe
9. 58 m wife, two sons accountant mild
10. 50 f five daughters and son serving person moderate
11.65 f married son, daughter retired from teacher severe
12. 62 f husband, married son retired from tailor moderate
13.50 f husband, daughter cook independent
14. 60 m wife engineer mild
15.63 m wife, married daughter retired from general practitioner mild
16. 57 f husband, son retired from cook independent
17. 57 f husband, daughter, son retired from accountant mild
18. 56 m wife, 2 daughters technician mild
19. 52 f married sisters physician mild
20. 50 m wife, married son driver moderate
Although Mongolian stroke survivors described many different aspects of
their Illness experience, eleven distinct themes were discovered. These can be
organized under the following headings: 1. the onset of the stroke; 2. medical care
and rehabilitation therapy; 3. longer term clinical care; 4.experience with traditional
medicine; 5. physical disability status; 6.social assistance; 7. economic difficulties;
8. negative life change following the stroke; 9. the impact of stroke on patient and
family; 10. the meaning of the stroke for an individual life; 11. stroke in social
The Onset of the Stroke
Although strokes are characterized as a sudden-onset condition leading to a
chronic disability (Wright et al.1987), not all patients described it as sudden
disruptive event. In all but four patients, the onset of stroke was described as the
gradual development of several symptoms, in particular, growing numbness in limbs
or visual distortion, and/or severe headache. In four patients stroke began with a
sudden loss of consciousness and they were too ill to play any role in seeking
medical assistance. Only in eight cases was an ambulance called directly. In these
cased families had had prior experience with stroke, and were able to evaluate the
symptoms as emergent and life threatening. In the other cases, before seeking
medical care patients consulted with others (often with relatives) and attempted
some forms of home- or self-treatment before calling for emergency care. In all
cases the emergency doctor who accompanied the ambulance was the first medical
person patients and their families had contact with. In four cases family members
gave the victims alcohol to drink in the belief that alcohol helps to reduce stroke
In five patients the symptoms began during the night and they waited to call
for help until morning, even if the victim was experiencing extreme distress. For
example, one woman described her experience with stroke as follows:
I was just going to get out of bed to go to the toilet and when I
went to get up couldnt get out of bed. I was struggling to get
myself out of the side of the bed. I was really frightened by this but
I did not wanted to bother my daughter. Later, when I thought my
daughter was awake, I called her and said I think something has
happened to me (8).
Current stroke literature emphasizes the importance of medically evaluating
and treating those with suspected stroke as soon as possible. A recent European
report on stroke management states that all stroke patients should be examined in
hospital within six hours of the onset the event (WHO, 1996, p.9). However seeking
medical care in most patients was delayed for two reasons: First, an evaluation of
the symptoms the individual (or other witnesses to the symptoms), did not appear to
arouse concern; or secondly, local medical services when consulted did not
define the event as an emergency.
At the time of onset of the stroke 80% patients were at home, 20% were at
work or elsewhere a distribution similar to that found in other studies (e.g. Wade,
1984). However, it was apparent in the responses of patients and caregivers to the
question What happened? that the identification of onset was often difficult. Most
patients engaged in a process of interpretation of the symptoms and subsequent
attempts to control the emerging illness. This often involved self-treatment and
consultation with others.
Previous experience of stroke was one factor influencing how patients, and
caregivers, respond to symptoms. For example, one woman, said:
I knew it was stroke because my mother had once before, and I
worried a lot because she died soon after she had a stroke. I was so
afraid, because of my fear that the same thing would happen to me,
but I thought once it happened to me there is no another way (10).
Some patients had a tendency to underestimate their general condition prior
to stroke. One women who had a long history of hypertension and worked as a
chief of a province explained her neglect of her condition by recalling the pressures
of her job, pressures which increased following the transition to a free market
economy. Others spoke in matter-of-fact way about the hard work they had carried
out all their lives. The majority of patients had a long history of hypertension prior
to their stroke.
The experience of stroke among these survivors did not follow the typical
picture of sudden loss of function and immediate efforts to consult with a doctor.
Ideas about bodily endurance and self-sacrifice combined with perceptions of the
organization of health services influenced by the journey to seeking and obtaining
clinical care. The decision to seek medical help was influenced by social factors and
the local circumstances at the time of onset.
Medical Care and Rehabilitation Therapy
All patients except one were hospitalized. In the hospital, care is provided by
neurologist. In one case, neither the ambulance physician nor primary care staff
suspected stroke did not refer the patient to the hospital for evaluation by a
specialist. In other cases, the mean length of hospitalization was 11.5 days.
Although physical rehabilitation is regarded by clinicians as an important
element of stroke care, many patients were unhappy with physical rehabilitation
therapy. Some of them did not receive any physical therapy at all as part of their
treatment. Those who had described it as being assisted to walk, with exercises for
specifically affected limbs. Ten people reported that they did not receive any
physical therapy in the hospital because either they were told it was not needed or
because they were initially too unwell for therapy. Some felt that they had not
received enough therapy, or what which they had received was not effective.
Referral to further rehabilitation therapies provided in a specialist
rehabilitation center is possible in Mongolia, but only seven patients of those
interviewed in the national rehabilitation center and sanatoria had been referred for
such therapy. Those who had been referred to the rehabilitation center and sanatoria
were fully satisfied with the care provided and a general environment. One woman
considered herself lucky to have been hospitalized in the rehabilitation center, where
there were exercises all the time. Those who did not have access to the rehabilitation
center expressed frustration with bureaucratic delays. The daughter of one patient
described it in this way:
Another man also complained about the bureaucratic health structure of
Mongolia and told me:
I am not happy with the current health care system of our
country. It would be very nice to have a system so that those of
us who are chronically ill and disabled could come once a year at
least. I have heard there is special rehabilitation center for those
like me. But there is always a huge line, and not everyone can get
it. I saw patients in rehabilitation center and many of them have
just yadargaa3 (Caregiver 11).
Four patients reported something about their hospital experience which
especially pleased them, most commonly that the staff, neurologists and massage
nurses, who they described as kind, caring and encouraging.
3 Yadargaa literally means tired. This is a culture bound syndrome in Mongolia.
Much of literature emphasizes that individuals can make considerable
progress in recovering neurological function in the first six months after a stroke.
However, in many cases, stroke survivors and their families were unhappy with
rehabilitation therapy. Many respondents felt that physiotherapy had been denied or
limited because of the patients age or for economic reasons. One man, for example,
Thats the only complain Ive got about it all: that I was missing
treatment I could have had. They ran out of money and couldnt
afford to treat me anymore. You know how it is this day and age...
if we had more physiotherapy we wouldve been happier (10).
No respondents had not received any occupational therapy as part of then-
treatment, though a majority of them willing to have it. According to the literature
occupational therapy is regarded as an important part of rehabilitation therapy for
stroke patients. However in Mongolia such therapy is not available. One woman
described her attitude towards rehabilitation therapy as follows:
The physiotherapist decided that I would benefit from intensive
physiotherapy which was nice for me, but it wasnt actually all that
intensive. They say you should start physiotherapy as soon as
possible after the stroke, but down in I just sat around taking
tablets I could have taken at home (8).
Medical attitudes to the management of stroke and to rehabilitation appear to
have been characterized by an air of pessimism. With health reform focused on
reducing the deficit and offering sustainable primary health care services, the
provision of rehabilitative services has become subject to economic and political
forces. Dunkle (1987) observed that stroke inspires therapeutic nihilism and that,
in general, doctors exhibit a lack of interest in stroke rehabilitation: it is often
considered to be something that other people do when the doctor has become
therapeutically bankrupt.. .the suggestion has been made that patients should not be
subject to unwanted activity but be left in peace to die in dignity (Dunkle, 1987,
Many patients and their caregivers were aware that hypertension was related
to stroke recurrence. One woman, who had a long history of hypertension, for
I have had high blood pressure for 20 years and there is no
treatment. I have tried everything to bring down my blood pressure
however I am still having high blood pressure even after the stroke.
I try to follow certain things that are recommended to me by the
doctor but it is not really helpful. Are there any other drugs that
could keep my blood pressure in control? (2).
Eleven patients were hospitalized more than two times since the stroke. Most
of them wanted special hospital care and rehabilitation treatment.
Longer Term Clinical Care
The clinical priority for discharged stroke patients is to manage risk factors
which might give rise to a recurrence. Such care has been found in the US and the
UK (Dunkle, 1987, Fawcus, 2000). In this study seven people consistently saw a
primary care (family) doctor for medication prescription or monitoring of blood
pressure. Only one person spoke of modifying their diet as a way of reducing risk of
further disease. Three people said that there was no point in seeking on-going
medical care. One woman who is 65 years had been prescribed medication for
nerves upon discharge from the hospital. She now continued to buy tablets for her
nerves and for pain relief. However, she felt there was little reason to go to the
doctor as she had resigned herself to the fact that she had little time left to live. For
example, one interviewee thought that there was little that doctors could do for her.
There are so many patients and only one doctor. So either I feel
well or bad -1 see that I am not dying and dont go a doctor. I have
medicines to take. And I know how to take them. Why should
bother people all the time. They wont make my arm or leg healthy
Some felt that follow-up was important but identified reasons which made
this difficult: problems with insurance policies deterred them: they were insure
where they should receive care and whether they were eligible to be seen by one the
new family doctors (general practitioners) and what they had to do to register;
some were unable to get to a clinic because of their disability; some were critical of
care they had received in primary care settings: and some moved another area and
cited this as a reason for not seeking follow-up. No patient explicitly mentioned the
explanation and advice given by staff, but some referred to the encouragement and
efforts of the therapist.
However, the need to prevent stroke recurrence was not generally voiced as
a main concern. Many, on the other hand, were concerned to find ways of managing
the consequences of stroke experienced in an embodied way through their
disabilities. Some described their own efforts to improve their reduced physical
abilities, including performing simple exercises, employing a masseur, acupuncture
or vitamin injections. Thus the stroke was an event in the past which left many with
symptoms that they were concerned to improve but medical services in Mongolia
were not regarded as being able to offer much.
Experience with Traditional Medicine
Many studies have observed that traditional medicine is effective for many
chronic conditions and diseases. Almost half of the respondents experienced
traditional medical therapy as part of their rehabilitation therapy. Most typically
they used acupuncture, massage therapy, moxibustion, and traditional herbal pills.
These modalities were available in private traditional hospitals and two sanatoria.
Decisions to use traditional medicine differed: some were referred by neurologists
while others resorted to traditional medicines because of the perceived lack of
effectiveness of Western treatment. Of the ten patients that used traditional medicine
nine said that they were satisfied with traditional medical treatment, only one
interviewee complained about traditional medicine. One woman, for example told of
her experience in traditional private hospital:
Traditional medical therapy was more effective than any other
treatments I used before. I tried many drugs and medicines for my
arm and leg and did as many exercises as I could. But
improvement was so slow- almost nothing. Then my daughter
with help of her friends doctor hospitalized me in
Ulaanbaatar sanatorium. There were different types of therapy
and the nurses and doctors were so kind and treatments are so
effective. I had acupuncture, traditional pills and massage
therapy. Now I can move my arm and leg more easily than
One woman who used traditional medical treatment described her
I tried one traditional doctors course treatment about which I
was told very famous. I was given many traditional pills and
acupuncture, and massage therapy for two weeks. The treatment
costs were high- We spent 60.000 tugrugs (about US $ 55) for only
this one treatment. I would not care about costs if the treatment
was effective. But my condition was worsened after treatment and
I had high blood pressure again. Some of traditional medical
treatments in Mongolia are a kind of money losing proposition I
Those who did not use traditional therapy were willing to use it, though cost
was a primary concern for them.
Physical Disability Status
Disability is generally a result of physical impairment. In Mongolia,
individuals considered disabled are eligible for disability pension. Five respondents
were retired at the time of interview and had an expectation that financial help
would be provided to disabled people of retirement age (age 60 for men, age 55 for
women at the time of interviews). Most of the patients were in reasonable health and
independent in activities of daily living before the stroke. Studies have identified
disability shortly after the stroke as a very important influence on a patients fixture
life. Currently, in Mongolia people of retirement age are no longer eligible for such
benefits. This reduced eligibility was a source of dissatisfaction for several
interviewees. One man complained:
I would like to get into the disability category, if Id got that
disability category, I would be getting a few tugrugs more at least.
Im thinking Ive worked so much all my life and .. .finally once I
fall ill, the doctor couldnt sort that out. I cannot five on my
Most of them said that the extra income would be useful to help pay for
medication, rather than be used for some other purposes.
Others with extended disability status described that this is the only one
financial source that they were receiving and it was not sufficient for their needs.
Many patients attitudes towards recovery were negative because of then-
lack of access to disability status. However, the caregivers had generally modest
expectations about the contribution that health care could make to recovery; they
were also more cautious about the extent to which they felt the patient could help
Caregivers alluded to psychological problems as barriers to the patient
recovery, and supporters frequently discussed their own help in terms of giving
emotional or social support and caring understanding. Some supporters referred to
help with specific therapeutic tasks or to being involved in the patients formal
Progress in performing activities of daily living appears after the first month,
and is virtually complete by about six months after the stroke. Many patients will
acquire the social status of disabled (though not formal status vis-a-vis government),
which is likely to attract a multitude of negative evaluations, expanding into
different spheres of life including work.
Physical disability is the most distressing problem after the stroke for many
stroke patients. Many patients complained that self-care was the great problem
associated with physical disability:
I try hard all the time since I had this illness. No one knows how I
try but its hopeless (7).
Women face more difficulty than man in relation to household work.
Many studies have suggested that the problem of stroke in western settings is
often characterized as a burden on families and state services who must provide
assistance to those left disabled. In Mongolia, community services for the elderly or
those with disabilities, such as home help for domestic chores, bathing services and
respite care, are almost non-existent.
For stroke patients and the chronically ill generally, the family is the main
source of emotional, social and practical support (Dunkle, 2000). For all
respondents family was the only source of support. Friends were not significant
sources of assistance. All but one interviewee lived with a spouse or other family
members, some in three generation households. One woman, who was the most
severely disabled, relied on her son and daughter for basic care. Leaving the fifth
floor flat was impossible because there was no elevator and she was too heavy to be
carried down stairs. Her daughter thought it would be helpful to have a nurse to
come and provide basic care but identified their main need as affordable medicine
which might help her mother grow well enough to be admitted to a rehabilitation
center. However, few patients described home support services as necessary for
disabled people. One woman, who lived with her children, said that:
Everyone has own his destiny, I dont want to burden my children,
and I am old and sick, and no longer useful. I dont want to trouble
them for an extra run, caring for me all the time. I would like to
have home support services that could help me survive all these
The majority of respondents experienced clear deterioration in their social
lives relative to the pre-stroke period. Physical difficulties reduce the opportunities
for going out, but there were other, more complex reasons for deterioration in social
activities. Many patients believed that their personalities had changed. They were
also uncomfortable with their current disabled state and were either ashamed or did
not wish to burden their friends and relatives with it. Although the majority of
stroke patients had poor social lives, there were wide variations in responses.
Several patients suggested the need for organized social activities for keeping
keeping them in contact with other people, though two patients described fairly
hectic social lives, one patient suggested no social life et all. Following stroke, many
patients had been forced by circumstances (lack of access, and loss of energy,
strength and interest) to make more careful choices about their social lives, which
brought about changes in their relationships with family and friends. Many patients
and their family talked about necessity of a specific service for those who had a
stroke. One caregiver who is a general practitioner said that:
There is a strong argument for developing a community-based
service for nursing and rehabilitation of stroke patients in our
country (Caregiver 8).
A few of the patients said that they felt generally ostracized or discriminated
against because of the stroke. A man who had who had worked as a musician felt
that everyone treated him somewhat differently following his stroke. However, this
kind of negative experience was recalled by only two of the patients. This may be
because patients simply did not notice, because events had occurred shortly after the
stroke, or because most patients spent little time in social company outside of family
and close friends where they might experience such discrimination.
Economic Difficulties after the Stroke
Many of those interviewed regarded their current economic situation as the
most significant difficulty they faced following life after stroke. During the
interview it was noticed that almost all interviewees were unwilling to discuss their
subjective experience of stroke and recovery but they saw the interview as an
opportunity to complain about their poor finances. In this respect, stroke patients
were unlikely to differ from other elderly people in Mongolia who are forced to live
on insufficient pensions. Indeed, all interviewees referred to the economic
difficulties they faced, although there were apparent differences in the resources
available to different participants, with some clearly poorer than others. Retired
interviewees were on a fixed state pension, with 45 000 tugrugs per month a
common sum4. Expenses to be met from this sum included rent, household bills,
food and medications.
Many respondents and caregivers described their lives as hard with
decreasing family income after the stroke. Four patients and caregivers had
changed residence since experiencing the stroke. Reasons given for moving
typically emphasized economic difficulties rather than physical difficulties
associated with the stroke. One caregiver, a 54 old year man, said, for example:
Weve got nothing to live on. We sold our apartment with all its
furniture and bought small compound in Chingeltei district (a poor
area on the northern edge of central Ulaanbaatar). It is much
cheaper to live in this district than in apartment. My wife cannot
work because of this terrible illness and I have been unemployed
since her stroke. Nobody can take care of her except me.
Treatments are very expensive and we have tried everything for
stroke and spending a lot of tugrugs. The doctor recommended that
she take five different medicines for her illness, but I cannot buy
them all because prices are too high for us (Caregiver 13).
The loss of employment may mean a reduction in income and financial
difficulties for many patients at a time when additional money may be necessary to
cover transport and housing costs. Those who were retired at the time of the
interview said that their pension was inadequate to meet the costs of living,
repeating the complaint that once the bills were paid there was no money left to buy
4 The average monthly pension at the time of interview was 45000 tugrugs (United Nations
Development Programme, 2000).
food. The problem of small pensions is common to all elderly people in Mongolia.
Those with chronic illnesses face additional costs of medical bills and costs of
medication. Medication costs were characterized as burdensome and, interviewees
carefully tracked their monthly expenses:
I have to take a lot of drugs. In the morning, I have to take five
pills different ones- and in the evening ... only two then. Seven
ills altogether in a day. And these medicines cost an awful lot.
Drugs are extremely expensive. I have spent about 10.000 tugrugs
per month just for drugs, for drugs alone. And what about the
rest.. .eating, and so on? I get only 35.000 tugrugs per month. I
have to pay 25.000 tugrugs per month for my apartment and
utilities. And that means that there is nothing left for food from
these 35.000 tugrugs (11).
Similar findings have been reported by Janchiv (2004). In her
study of the impact of the socioeconomic transition on Mongolian elderly, she found
that the economic transition has had a negative impact on the Mongolian elderly.
The elderly complained about insufficient pension even though there were
significant differences between urban and rural elderly. Participants in the study
expressed that their life is poor and that their major concern was with money.
Janchiv also suggested that there is need to improve access to health care as well as
quality of health services for elderly.
Negative Life Change Following the Stroke
Experiencing a stroke and its aftermath can be devastating for patients and
their families (Dowswell, 2000). It may be associated with severe physical, social
and psychological consequences for patients. A decline in physical function
following stroke is generally due to the severity of the stroke and to pre-existing or
co-morbidity (Wade, 1994). Most patients identified the many profound ways in
which their lives had been changed since they suffered the stroke. They used strong
words like destroyed and ruined, emphasizing the fact that stroke affected all
aspects of their lives. Almost all respondents viewed the relative change between
the before and after stroke periods in negative way. Some strong emotions were
encouraged by this question for both patients and caregivers. One man said:
Stroke has changed our life completely, I am doing everything...
getting her up, household work, everything thats to do. I quit my
job because no one can help my wife but me. Everything is one.
You are helpless.. .absolutely. There is nothing you can do.
And afterwards, you can just help as much as you can thats it
The Impact of Stroke on the Family and Individual
The literature suggests that depressive symptoms may occur more frequently
among stroke survivors than others of the same age and sex. Clinical depression was
not measured in this study, and only two people defined themselves as literally
depressed during the interview. Others however referred to themselves as suffering
from nerves or said that their overall mood had worsened since their stroke.
Only one person considered that he was cured and that life had returned to
normal similar to pre-stroke life. However, all respondents spoke of how the stroke
had changed their bodies. Such changes included the onset of chronic pain, loss of
physical strength, reduced dexterity in the hands and fingers and reduced limb
movement. Some also identified changes in their cognitive abilities, mood or
personality. Many said that their overall mood had worsened since their stroke. Ten
people reported experiencing some form of emotional problem, including caregivers
who wanted to talk about the fear and frustration which their partners illness
created. They related their distress to the difficulty of getting information about
prognosis. However, of these ten, six said professionals or family and friends had
helped them overcome their problems. In nine interviews, people reported that they
did not have particular emotional difficulties. One respondent did not regard himself
as needing any support at all, since he had accepted the stroke as a simple
consequence of old age and had other more important concerns.
The importance of such changes in body and mind lay in the ways they
affected the kind of life interviewees could now lead (Dowswell et al., 2000;
Burton, 2000). As in other studies, the ramifications of stroke were described
largely in terms of inability to conduct previous activities, including paid work,
housework, to shop or to visit friends and family. These included people categorized
as independent in functional activities (BI=20), illustrating the considerable
difference between being able to function as a body in physiological terms and
functioning as a social being.
For family stroke primarily affected their psychological well-being through
the considerable demands of taking care of patients for a long time. Many caregivers
said that caring for a stroke survivor is a stressful process, challenging both their
mental and physical resources.
The Meanings of the Stroke for Individual Life
According to Reissman (1993), part of the work of processing an
experience such as serious illness is that of bringing meaning to that experience
(p.15). What were the importance of the changes which these stroke survivors
identified? Four interpretations of stroke were offered by interviewees in relation to
themselves as individuals.
First, among the men who had returned to work two interpretations were
advanced. One discussed the idea that the stroke might be a warning sign to modify
their lifestyle thereby looking after their future health. The others were skeptical,
arguing that whether he took care of himself or not, death is an inescapable event.
Second, a minority conceptualized of the stroke as being simply a misfortune
or manifestation of their particular destiny, which they had to overcome, drawing on
inner resources. For example, one woman described how she struggled to overcome
and struggle with the shock of being ill:
I forgot that my condition might improve though the doctor said
that I would never be as I used to be. At first, I did not lose my
hope that I would. I tried to do as many exercises as I could but
even if you exercise a lot it did not help. At first, I couldnt walk
because my feet were turned wrong. But now I can stand for
few minutes. Then I have to sit down again. I force myself
everytime, and everyday to do this (8).
While she described exercising to recover ability, she also revealed that her
initial optimism was turning into pessimism.
Thirdly, some respondents described how they were still able to contribute to
family life, helping with child care, or cooking. Others, however, described their
frustration with their increasing dependence on younger, healthier family members.
It signified loss of productivity, under economic pressure. Being no longer able to
contribute to the household materially or in other ways, was catastrophic, leading
interviewees to ask What am I good for now?
Finally, stroke was also seen as a sign of coming death, though they
accepted with this. However, one relatively young man (52) clinically defined as
having moderate disability (BI=14) was distressed that he could no longer work. In
the interview he said:
Well sometimes... I take pills for my nerves, I do, I have kind of
emotions... to end to my life and thats all, there are moments like
that. What am I good for any more? I would rather die (7).
Stroke in Social Context
Local social context is important for many chronic illnesses (Thome, 1993).
The majority of stroke survivors of this study set their illness accounts in a social,
historical context but for the most part this was restricted to the more recent
transition they had experienced since the countrys political economic shift and the
implications of the change to a free market. Stroke was interpreted in many ways,
which setting personal stories of suffering in the context of shared experiences of
suffering. Some blamed their illness on the impact of economic changes. For
example, one woman said:
Because of the free market there are certain pressures and
stresses. You get sick pretty easily in this society. Quality of life
is getting worse since the shift to a free market, there is no
guarantee for a healthy life (3).
Others blamed the unpredictability of the new labor market for their illness.
For example, one woman said:
Before that illness of mine there was a stressful situation because
there was a shortage of work. And then some people working there
were (at my place of work) forced to take unpaid leave. And that
may have something to do with my illness, played some role in this
case, because I was really worried that I might be laid off for a
Along with economic changes, participants also described changes in social
relations with stories of houses being broken into, fear of strangers and criticisms of
the provision of public services from health care to heating. One man described his
I think that to live properly, you need to be in normal health, all
normal conditions, because our situation is critical. You cannot
believe in tomorrow, you dont know if tomorrow there will be
heating, a water supply, if you can get into health center. Because
you are poor. It is very hard in a moral sense. Today, I can hardly
pay for die flat, not mention eating or anything else.. .And I am not
sure if my life will be sufficient tomorrow (20).
Another interviewee also referred to an uncertainty over the fixture. He made
an explicit connection between social suffering and individual ill health:
I think that under the current government everyone is under a
tension. Life is impossible. I think that we are all sick, all of us.
Sick for this disorder our lives, lack of confidence in anything.
You are not secure in this society (15).
During the socialist period older people and the chronically-ill were
protected with pensions, free access to health care and a fixed cost of living. The
free market ended these certainties, while the cost of living rose dramatically, state
pensions did not. Rather than being comfortable and protected, they were now, put
in category of the poor.
Most interviewees described their experience of life after stroke with
reference to the social situation in which they now lived, contrasting this with the
kind of life they had envisaged for themselves. Several people thought their hard
working lives to blame. They also illustrated through their comments how a socially
produced suffering exacerbated their individual ability to deal with the aftermath of
stroke. Fifteen of the survivors blamed their stroke on psychological emotional and
physical stress. For example, one man said:
I retired early from the practice of medicine. Because of the free
market I started to sell newspapers to add to family income. I had
to get up everyday at 4.30 am and at 5:00am I ran to buy
newspapers. Because I have five children and it was not easy to
support them and pay for their education. I always wanted to see
that my children are well-educated at least, because our time is so
difficult for us to find job without any profession. By herself, my
wife cannot support our life. Because work was hard for me, I had
to work 10 hours everyday. One day a guy stole newspapers and I
followed him and argued. After that I felt my arms not moving and
I couldnt speak. I had surgery because of stroke. (20).
DISCUSSION AND CONCLUSIONS
The purpose of this study was to explore and describe the experience of
stroke patients and their caregivers in the current Mongolian political economic
context. I sought to understand how the local culture and social structures shaped
the perception and experience of disease (Klienman, 1980,1988; Good & Good,
1994). There are differences in the ways that local circumstances influence the
nature of what stroke disease is and what responses to it are sufficient and
appropriate. National and individual economic circumstances also shape stroke care,
for example in the way that inability to sustain extra expense deterred many people
from seeking medical advice following discharge from hospital. Information about
the locally-constructed nature of disease and responses to it highlight the obstacles
in the way of such activities. In Mongolia stroke survivors responses to their
situation are influenced by expectations of social productivity, or usefulness in later
life and the role of the government to provide care. For the Mongolian respondents
they may also be shaped by culturally and historically formed ideas about the nature
of suffering, understood as the shared destiny of a people, as well as individual fate.
Previous sociological studies on stroke have argued for the need to broaden
the clinical perspective on recovery and life after stroke and have criticized the
narrow focus on indicators of physical function or disability. Doolittle argued
(1984) that recovery for stroke survivors is not only recovery of the physical body
but also recovery of the social body- a reconnection to concerns and social
practices and this involves restoration of the member-participant self-in the
community (p.213). Doolittles argument is that understanding the role of the
skilled cultural and habitual body is central to understanding the experience of
The participants in this study also evaluated the impact of their illness with
regard to its effect on their participation in social networks and events. Meaningful
social participation for Mongolian stroke survivors has to do with notions of
productivity either through paid work, or through contribution to the running of a
household. This idea of productivity and its importance were central to the socialist
economy in which the study participants had worked all of their adult lives. In the
economic reality of post-socialist Mongolia, productivity has taken on a new
importance as pensioners incomes have fallen dramatically in relation to then-
purchasing power, and adult children experience unemployment or the threat of
unemployment. Pensioners who are able, work to supplement their household
economy, or help running the house supporting other adults who work outside the
home. Older adults who cannot contribute fail to achieve the ideal and the necessity
of productivity; those who require medical treatment place a further burden on the
household economy since they may no longer have access to assistance from the
The idea of biographical disruption (Pound 1998) has been used here to
help interpret accounts of chronic illness. The assumption of this idea is that illness
narratives are told to recreate a sense of order and coherence in a sufferers life.
However, Pound (1998) argued that biographical disruption is relevant only to
particular social, historical and cultural contexts. It was not found to be relevant to
the experiences of their informants in Londons East End. Contrary to the
researchers expectations the interviews did not describe stroke as disastrous. This
was explained in terms of their previous experience of illness and poverty and the
view that disease and disability were inevitable in older age and culturally based
stoicism may have dictated this response as appropriate (Pound, 1998, p.503).
Similarly, the lives of Mongolian informants were marked by prior experience with
disruption. However, there was no sense that a previous hardship mitigated the
tragedy of stroke, even though here also stoicism appeared to be regarded as an
appropriate attitude. Despite the experience of individual and social suffering, the
crisis of stroke was not regarded as normal: it only highlighted the abnormality of
social life. Stroke survivors sense of tragedy may have been heightened since
illness is regarded by some at least as socially produced, while most explicitly point
to the ways in which social forces affect their ability to manage illness. Stroke as
such may not be an example of a disorder that acquires cultural salience in a
particular epoch (Kleinman, 1988, p.18) but these accounts of life after stroke
certainly give voice to a protest against the personal consequences of recent history.
The concern was less with recreating coherence in the individual biography than
with locating individual misfortune within a damaged social life.
Stroke in the West has long been characterized as a disorder for which little
can be done (Pound, Bury & Ebrahim, 1997). This understanding is now being
countered by an ideology of multidisciplinary care, the development of guidelines to
improve care and the promise of drug interventions. This study of Mongolian stroke
victims accounts points to questions which are harder to ask, as well as to answer.
They point to the social nature of suffering from stroke and illustrate the need to
look at how the distribution of resources shapes the kind of life which older people
and the chronically ill may seek live.
The findings of this study show a complicated picture of the difficulties
faced by patients and caregivers in a time following stroke that is similar to previous
studies done on stroke patients in Western countries. Problems associated with
stroke patients are social isolation, lack of companionship and lack of meaningful
social involvement, concerns about social and economic productivity, economic
difficulties, and physical impairment. Stroke turns the lives of victims and their
caregivers upside down. Patients lose physical abilities; experience a sharp
reduction in their social networks and activities; suffer loss of independence and
negative changes to their self-identities. Stroke represents a major discontinuity in
the lives of patients and caregivers in Mongolia. However, Mongolian stroke
patients responses to the stroke revealed as much about nature and context of their
lives than about the stoke itself. Many of the participants interviewed in the study
were in desperate need of money, adequate housing, home health aids, home
services, and basic health information. The countrys recent socioeconomic
transition to a free market shaped the many of participants illness experiences. It is
in this sense that individual and social suffering is clearly connected. The severity of
the disability is significant for the patients response to and experience of illness
(affecting expectations, attitudes to rehabilitation, use of services and length of
hospital stay), but it appears less important as an influence on the meaning of stroke.
This probably reflects the distress caused by having the illness at all.
A clinical need for secondary prevention of stroke recurrence is necessary.
Professional advice, regarding avoiding perceived triggers of stress may be
immediately important to the patients who believe that stress causes strokes.
The management of a chronic illness, such as a stroke, demands a leading
contribution from services in the community, particularly from professionals
employed in primary health care, with their orientation to family care and continuity
of care (Anderson, 1982). WHO (1999) recommends that stroke rehabilitation is
accomplished successfully through the connection of patient, nurse and family.
These kinds of treatment teams have not yet been developed in Mongolia. However
the existing primary care system structure would seem well-suited and able to
undertake this function.
Some Differences between Patients and Caregivers
For most patients and their caregivers the stroke led to a marked
deterioration in enjoyment of, and feelings of satisfaction with life. In some ways
the stroke was more threatening to the caregivers than to the stroke patients.
Caregivers had more worries early on about problems such as patients mental
health, and social problems and they were more actively engaged in looking for
strategies to deal with the consequences of the illness. Patients had higher levels of
emotional distress than caregivers, although they were not much more satisfied or
dissatisfied with life as a whole (Anderson, 1982).
Limitations of the Study
This study was designed to explore and describe the experience of stroke
patients in the Mongolian social, cultural and political economic context. As a small
exploratory study, however, not all perspectives are likely included here. Some
caution is warranted in generalizing the results to the experience of Mongolian
stroke victims as a whole. However, the qualitative approach does allow people to
discuss their experiences, define their own priorities and identify services that they
need. Also, this study did not distinguish between patients with ischemic and
hemorrhage stroke. These two varieties of stroke produce very different levels of
disability among survivors. Future studies should take account of these differences.
Implications for an Intervention and Future Recommendations
The study raised a number of important questions:
1. It is worth to consider developing a new community-level intervention
for chronically ill and disabled people such as a stroke in Mongolia.
Although it may not be possible for any one intervention to meet all
stroke families needs services such as home, and nursing care are
potentially affordable in this developing country context, and would be
very helpful for stroke patients and their families. Thus, the study
suggests that there is a need for a skillful and flexible professional and
paraprofessional services for both stroke patients and their caregivers,
ideally delivered in community based primary care settings.
2. Because rehabilitation therapy is the most important part of patients
therapy it is critical to develop specific rehabilitation centers or
departments in central clinical hospitals as well as in district hospitals.
Occupational therapy, currently unknown in Mongolia would seem
worthy of development.
It is important to provide patients to access to on-going physiotherapy or
a structured program of exercises, and long-term monitoring of the
patients progress. Important elements of such a program would include
addressing individuals concern about resources (social, financial,
educational, confidence in seeking help) and their expectations about
dealing with difficult predicaments and about the roles of family and
formal services. This study suggests the importance for Mongolia to train
specialists in stroke rehabilitation such as occupational and physical
therapists and specialized nurses.
3. Access to traditional medicine for stroke patients should be considered,
particularly acupuncture and massage.
4. Health care providers should provide necessary information for both
stroke patients and families in order to help them cope better with the
long term consequences of the illness.
5. Most patients and caregivers need assistance in taking advantage of the
help available to them, especially, pensions and disability allowances.
Social work is presently a fledgling profession in Mongolia, yet social
work services, particularly for those suffering disability or chronic
illness, are increasingly important.
6. Finally, future studies should broaden this research to evaluate quality of
life of stroke patients in larger sample and for a longer period following
Community health intervention for stroke care and providing necessary
information for both stroke patients and family members are the most
approachable recommendations in current Mongolian context. Because these
recommendations are less expensive and more effective compare to others.
HUMAN SUBJECTS RESEARCH COMMITTEE
University of Colorado at Denver Approval
Campus Box 129, P.O. Box 173364
Denver, CO 80217-3364
DATE: May 21,2004
TO: Delgermaa Tsagaankhuu
FROM: Deborah Kellogg, HSRC Chair
SUBJECT: Human Subject Research Protocol # 2004-114 The Experience of
Stroke in Mongolia
Your protocol has been approved as non-exempt and should pose no more than
minimal risk. The HSRC waives the requirement to obtained signed, informed
consent. You are required to use the script as included in your protocol. Keep a log
of subject numbers or other ids and the date consent was obtained. This approval is
good for up to one year from this date.
Your responsibilities as a researcher:
If you make changes to your research protocol or design you should
contact the HSRC.
If you should encounter adverse human subjects issues, please contact
If your research continues beyond one year from the above date, contact
the HSRC for an extension.
The HSRC may audit your documents at any time.
Good Luck with your research.
TOPIC GUIDE OF THE INTERVIEW
Question guide for stroke survivors:
1. Can you describe what happened when you had the stroke?
2. Can you please, identify changes in your life since the stroke incident?
3. Can you describe your responses to these changes?
4. Can you identify needs for and sources of assistance and care?
5. What do you think might improve things for you?
6. Can you identify important things in your life since the stroke incidence?
7. Can you tell me about your experiences with the health care system after
you had your stroke?
8. Have you used any traditional medicine to help you with the effects of
Question guide for care takers/family members:
1. Can you tell me about his/her experience of having had a stroke?
2. Can you describe his/her life after the stroke?
3. What kind of changes have you seen since the stroke happened with
4. In your opinion, what might improve his/her condition?
5. Can you identify what is the most important for him/her/
6. In your opinion, what was the quality of the health care provided him/her
after the stroke? If you could improve aspect of the health care system,
what would it be?
FUNCTIONAL EVALUATION- BARTHEL INDEX
0 = unable
5 = needs help cutting, spreading butter, etc., or requires modified diet
10 = independent
0 = dependent
5 = independent (or in shower)
0 = needs to help with personal care
5 = independent face/hair/teeth/shaving (implements provided)
0 = dependent
5 = needs help but can do about half unaided
10 = independent (including buttons, zips, laces, etc.)
0 = incontinent (or needs to be given enemas)
5 = occasional accident
10 = continent
0 = incontinent, or catheterized and unable to mange alone
5 = occasional accident
10 = continent
0 = dependent
5 = needs some help, but can do something alone
10 = independent (on and off, dressing, wiping)
Transfers (bed to chair, and back)
0 = unable, no sitting balance
5 = major help (one or two people, physical) can sit
15 = independent
Mobility (on level surfaces)
0 = immobile or < 50 yards
5 = wheelchair independent, including comers, >50 yards
10 = walks with help or one person (verbal or physical) > 50 yards
15 = independent (but may use any aid; for example, stick) >50 yards
0 = unable
5 = needs help (verbal, physical, carrying aid)
Sown or county is an administrative unit in rural areas.
Ger is traditional Mongolian Housing in the form of a round felt rent.
Tugra&Xtg) or MNT is the Mongolian national currency, 1$= llOOtg
MONICA- Multinational Monitoring of Determinants and Trends in Cardiovascular
WHO- World Health Organization
Life expectancy is the length of time that a person is expected to live.
Anderson, R. (1992). The aftermath of stroke: The experience of patients and their
families. Cambridge: Cambridge University Press.
Asian Development Bank. (1998). Country economic review: Mongolia.
Ulaanbaatar, Mongolia: Asian Development Bank.
Baasanjav, D., Shuren, D., Nominbayar, P., and Unertyvshin, C. (2003). Incidence
of stroke in population of Ulaanbaatar Mongolia in 1998- 1999 years by their types
of age and sex groups. Mongolian Medical Science Journal, 2(124), 4-7.
Beall, C.M., and Goldstein, M.C. (1992). High prevalence of excess fat and central
fat patterning among Mongolian pastoral nomads. American Journal of Human
Becker, G. (1993). Community after stroke, implication of life-course disruption in
old age. The Gerontologist, 33,148-158.
Becker, G., and Kaufman, S. (1995). Managing an uncertain illness trajectory in old
age: Patients and physicians views of stroke. Medical Anthropology Quarterly,
Brandstater, M.E., and Basmajaian, J.V. (1987). Stroke rehabilitation. Baltimore:
Williams and Wilkins.
Brown, J. P. (1998). Understanding and applying medical anthropology. London:
Mayfield Publishing Company.
Burton, C. (2000). Living with stroke, phenomenological study. Journal of
Advanced Nursing, 32, 301-309.
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health
and Illness, 4, 167-182.
Dejong, G., and Branch, L.G. (1982). Preceding the stroke pateints ability to live
independently. Stroke, 13,648-655.
Doolittle, N.D. (1984). A clinical ethnography of stroke recovery. In P. Benner
(Ed.), Interpretive phenomenology, embodiment, caring, and ethics in health and
illness (pp.211-224). London: Sage.
Doolittle, N.D. (1991). Clinical ethnography of lacunar stroke: Implications for
acute care. Journal of Neuroscience Nursing, 23, 235-240.
Doolittle, N.D. (1992). The experience of recovery following lacunar stroke.
Rehabilitation Nursing, 17,122-125.
Dowswell, G., Lawler, J., Dowswell, T., Young, J., Forster, A., and Hearn, J.
(2000). Investigating recovery from stroke, a qualitative study. Journal of Clinical
Nursing, 7, 507-515.
Dunkle, R. E., and Schmidley, J.W. (1987). Stroke in the elderly: New issues in
diagnosis, treatment, and rehabilitation. New York: Springer.
Ebrahim, S., and Redfem, J. (1999). Stroke care: A matter of chance. London: The
Evans, R.L., Noonan, W.C., Bishop, D.S., and Hendricks, R.D. (1988). Caregiver
assessment of personal adjustment after stroke in a veterans administration medical
center outpatient cohort. Stroke, 20,483-487.
Fawcus, R. (2000). Stroke rehabilitation: A collaborative approach. Oxford:
Feibel, J.R., and Springer, C. J. (1982). Depression and failure to resume social
activities after stroke. Archives of Physical Medicine and Rehabilitation, 63, 276-
Folden, S.L. (1994). Managing the effect of effects of a stroke; The first months.
Rehabilitation Nursing Research, Fall, 79-85.
Good, B., and Good, M. (1994). In the subjective mode: Epilepsy narratives in
Turkey. Social Science and Medicine, 38(6), 835-842.
Griffin, K. (1995a). Poverty: Concepts and measurements. In K. Griffin (Ed.),
Poverty and the transition to a market economy in Mongolia. New York: St.
Griffin, K. (1995b). Poverty and the transition to a market economy in Mongolia.
New York: St. Martins Press.
Griffin, K., Brenner, M.D., Kusago, T., Ickowitz, A., and McKinley, T. (2001). A
strategy for poverty reduction in Mongolia. Report of a UNDP mission on the
Integration of Equity and Poverty Reduction Concerns into Development Strategy.
Ulaanbaatar, Mongolia: United Nations Development Programme.
Haggstrom, T., Axelsson, K., and Norberg, A. (1994). The experience of living with
stroke sequelae illuminated by means of stories and metaphors. Qualitative Health
Research, 4, 321-337.
Hillen, T., Dundas, R., Lawrence, E., Stewart, J.A., Rudd, A. G., and Wolfe, C.D.A.
(2000). Antithrombotic and antihypertensive management 3 months after ischemic
stroke, a prospective study in an inner city population. Stroke, 31,469-475.
House, A. (1987). Depression after stroke. British Medical Journal, 294, 76-78.
Janchiv, K. (2004). The impact of social and economic transition on Mongolian
elderly. Unpublished masters thesis, University of Colorado at Denver.
Janes, C.R. (1999). Imagined lives, suffering, and the work of culture: The
embodied discourses of conflict in modem Tibet. Medical Anthropology Quarterly,
Janes, G. R., and Chuluundoij, Oyuntsetseg. (2003). Free markets and dead
mothers: Economic transition and the collapse of health care in Mongolia. Stigma,
Suffering, and Social Justice, 9, 1-18.
Kaufman, S. (1988). Toward a phenomenology of boundaries in medicine: Chronic
illness experience in the case of stroke. Medical Anthropology Quarterly, 2(1), 339-
Kaufman, S., Schuling, J., The, H., and Jong, B, M. (2005). Actual and desired
information after a stroke. Patient Education and Counseling, 56,211-217.
Kleinman, A. (1980). Patients and healers in the context of culture: An exploration
of the borderland between anthropology, medicine, and psychiatry. Berkerley:
University of California Press.
Kleinman, A. (1988). The illness narratives. Suffering, healing, and the human
condition. New York: Basic Books.
Kohrt, B.A., Hruschka, D.J., Kohrt, H.E., Panebianco, N.L., and Tsagaankhuu, G.
(2003). Distribution of distress in post-socialist Mongolia: A cultural epidemiology
of yadargaa. Social Science and Medicine, 58,471-485.
Lind, K. (1982). A synthesis of studies of stroke rehabilitation. Journal of Chronic
Disease, 35, 133-149.
Low, J.T.S., Payne, S., and Roderick. P. (1999). The impact of stroke on informal
carers: A literature review. Social Science and Medicine, 49(6), 711-725.
Mahoney, F., and Barthel, D. (1965). Functional evaluation: The Barthel Index.
Maryland State Medical Journal, 14, 182-184.
McKevit, C., and Wolfe, C. (2000). Community support after stroke: The views of
patients and carers. British Journal of Therapy and Rehabilitation, 7, 6-10.
Morris, P.L.P., Robinson, R.G., Raphael, B., Samuels, J., and Molloy, P. (1992).
The relationship between risk factors for affective disorders and poststroke
depression in hospitalized stroke patients. Australian and New Zealand Journal of
Mumma, C. M. (1986). Perceived losses following stroke. Rehabilitation Nursing,
Narantuya, D., Dejeekhuu, G., and Ulziikhutag, A. (2003). The situation of today of
cardiovascular disease among population of Mongolia. Mongolian Medical Science
Journal, 2(124), 48-53.
Niphon, P. (1998). Stroke in developing world. The Lancet, 352,19-22.
ORourke, M., and Hindle, D. (2001). Mongolias system wide health reforms:
Lessons for other developing countries. Aust Health Rev, 24,152-160.
Parikh, R.M., Lipsey, J.R., Robinson, R.G., and Price, T.R. (1987). Two year
longitudinal study of post-stroke mood disorders: Dynamic changes in correlates of
depression at one and two years. Stroke, 18,579-584.
Patton, M.Q. (2002). Qualitative research and evaluation methods. Thousand Oaks:
Pound, P., Bury, M., and Ebrahim, S. (1997). From apoplexy to stroke. Age and
Ageing, 126, 331-337.
Pound, P., Compertz, P., and Ebrahim, S. (1998). Dlness in the context of older age,
the case of stroke. Sociology of Health and Illness, 20, 489-506.
Riessman, C. (1993). Narrative analysis. London: Sage Publications.
Robinson, R.C., and Price, T.R. (1982). Post-stroke depressive disorders: Follow-up
study of 103 patients. Stroke, 13, 635-641.
Robinson, R.G., Lipsey, J. R., Bolla-Wilson, K. (1985). Mood disorders in left
handed stroke patients. American Journal of Psychiatry, 142, 1424-1429.
Seijee, D., Enkh-Amgalan, Ch., Tserennadmid, Ch., and Batsereedene, B. (2001).
Study of the mortality caused by hypertension. Mongolian Medical Science Journal,
Skapa, B., and Benwell, F.A. (1996). Women and poverty during the transition. In
O. Braun & O. Odgaard (Eds.), Mongolia in transition. Richmond, Surrey, UK:
Nordic Institute of Asian Studies.
Sneath, D. (1999). Mobility, technology, and decollectivization of pastoralism in
Mongolia. In S. Kotkin, & B.A. Elleman (Eds.), Mongolia in the twentieth century:
Landlocked cosmopolitian. New York: ME Sharp, INC.
Suh, M., Kim, K., Kim, I., Cho, N., Choi, H., and Noh, S. (in press). Caregivers
burden, depression and support as predictor of post-stroke depression. International
Journal of Nursing Studies.
Thompson, S.C. (1991). The research for meaning following a stroke. Basic and
Applied Social Psychology, 12, 81-96.
Thome, S.E. (1993). Negotiating health care: The social context of chronic illness.
Thousand Oaks, CA: Sage.
Thorvaldsen, P., Asplund, K., Kuulasmaa, K., Rajakangas, A., and Shroll, M.
(1995). Stroke incidence, case fatality, and mortality in the WHO MONICA Project.
Stroke, 26, 361-367.
Visser-Meily, A., Heugten, C., Post, M., Schepers, V., and Lindeman, E. (2005).
Intervention studies for caregivers of stroke survivors: Critical review. Patient
Education and Counseling, 56,257-267.
Wade, D.T. (1994). Stroke (acute cerebrovascular disease). In A. Stevens, and J.
Rafley (Eds.), Health care needs assessment. Oxford: Radcliffe Medical Press,
Whitney, F.W., Bums, M., Frederic, M., and Lowery, BJ. (1994). Depression in
stroke survivors: The relationship of laterality in right and left hemisphere damage.
Rehabilitation Nursing Research, Winter, 130-140.
Wright, L.M., and Leahey, M. (1987). Families and chronic illness. Springhouse,
PA: Springhouse Corporation.
WHO, Regional Office for Europe, European Stroke Council. (1996). Pan
European Stroke Council Consensus Meeting on stroke management. Copenhagen:
WHO Regional Office for Europe.
Williams, G. (1984). The genesis of chronic illness, narrative reconstruction.
Sociology of Health and Illness, 6,175-200.
United Nations Development Programme. (1998). Assessment of alcoholism in
Mongolia: Causes, impact, complications, and solutions. Ulaanbaatar, Mongolia:
United Nations Development Program.
United Nations Development Programme. (1998). Mongolia. Ulaanbaatar,
Mongolia: United Nations Development Program.