the unfortunate generation: stroke survivors in riga, latvia
TRANSCRIPT
Social Science & Medicine 56 (2003) 2097–2108
The unfortunate generation: stroke survivors in Riga, Latvia
Christopher McKevitta,*, Agita Luseb, Charles Wolfec
aDepartment of Public Health Sciences, King’s College London, Capital House, 42 Weston Street, London SE1 3QD, UKb Institute of Philosophy and Sociology, University of Latvia Akademijas laukums 1, Riga LV-1940, Latvia
cDepartment of Public Health Sciences, King’s College London, Capital House, 42 Weston Street, London SE1 3QD, UK
Accepted 30 May 2002
Abstract
The poor health status of citizens in post-Soviet states has been reported but few studies have investigated the illness
experiences of people in those countries. This paper reports findings from an interview study conducted with stroke
patients in Riga, Latvia, who were part of a cohort recruited over 1 year for a European study comparing the provision
of care, outcomes and resource use. The interview study aimed to elicit stroke patients’ own perceptions of the impact of
stroke 1 year after the event. Adopting a phenomenological perspective we illustrate how the particular social setting
shapes stroke as an illness, its influences on access to health care and on consideration of the impact of stroke. We argue
that for stroke survivors and their relatives in post-Soviet Latvia this disorder acquires a meaning that transcends the
individual biography and signifies an upheaval of social life in general. The meanings attributed to stroke by
interviewees are developed in the context of the momentous recent historical events which participants lived through. In
this sense, stroke has become an idiom of a disruption in social biography rather than individual biography alone. Most
participants were pensioners and their main concern was their own poverty. Some complained of their inability to meet
their basic needs, much less pay for on-going medication and therapy. Only one person was ‘severely disabled’, using a
standard neurological definition, but about half of those interviewed regarded the stroke as a sign foretelling their own
death. Although this generation had expected to be cared for in their older age under the Soviet regime, the much
longed for Latvian independence was seen to have brought unexpected hardships for those who were old and sick.
r 2002 Elsevier Science Ltd. All rights reserved.
Keywords: Stroke; Illness experience; Latvia; Former Soviet Union
Introduction
Since the end of the political system in the Soviet
Union, more information is available about the health
of people living in its states. The situation has been
characterised as one of crisis with worsening health and
demographic indicators (Field, 1995). However, little is
known about the illness experiences of people in the
former Soviet Union. In this paper we present findings
from an interview study conducted with stroke survivors
in Riga, Latvia. Interviews took place during an
epidemiological study comparing stroke care and out-
comes in 17 hospitals across 14 European countries. In
contrast to the latter, the interview study adopted a
phenomenological approach to focus on the lived
experience of illness as a culturally constituted reality
(Good & Good, 1994; Kleinman, 1988).
Comparatively few studies have been undertaken of
stroke disorder investigating the perspectives of affected
individuals themselves. The work of Kaufman (1988)
and Becker (1993) in the United States and Pound,
Gompertz, and Ebrahim (1998) in the United Kingdom
are two important exceptions but contrasting pictures
emerge from these studies. Kaufman and Becker use the
sociological concept of biographical reconstruction
(Bury, 1982; Williams, 1984) to explore American stroke
*Corresponding author. Fax: +44-20-7848-6620.
E-mail address: [email protected]
(C. McKevitt).
0277-9536/03/$ - see front matter r 2002 Elsevier Science Ltd. All rights reserved.
PII: S 0 2 7 7 - 9 5 3 6 ( 0 2 ) 0 0 2 0 4 - 6
patients’ efforts to come to terms with the disruption
which the stroke event and the subsequent physical
disabilities represent. They argue that major illness
interrupts and transforms biography, forcing one to take
control of the biographical process by 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 current changed circumstances of
individual’s existence. Pound et al. (1998) also take their
cue from Bury’s work on biographical disruption but
argue against the conventional wisdom that stroke is
experienced as a devastating experience. Adopting an
anti-interpretive stance, they argued that the poor, older
stroke survivors of the working class East End of
London, viewed their stroke in the context of previous
illness, hardship and expectations of physical deteriora-
tion in older age. Stroke was regarded as ‘normal crisis’,
bad but not that bad. It was unlikely to interrupt
individual biography since this was experienced as
already fragmented. Thus the question arises, to what
extent do different evaluations of the impact of stroke
arise in different settings? To explore this issue we draw
on Kleiman’s suggestion that illness has meaning in
three senses. Firstly, symptoms have meaning in a local
cultural system and are reflected in illness idioms
(Kleinman, 1988, pp. 11–14). To understand this mean-
ing, one has to attend to the society’s normative
conceptions of the body and the local styles of
performing bodily functions. Secondly, some symptoms
and disorders acquire cultural salience in particular
epochs and societies (Kleinman, 1988, p. 18). Thirdly,
illness acquires personal and social significance in the
context of the life world of the sick person (Kleinman,
1988, p. 31). We use the interview data to trace these
dimensions of meaning in Latvian stroke survivors’
experience of their illness.
The setting: Riga, Latvia
Latvia has a long history of foreign domination.
Following the German occupation during World War I,
independence was fully achieved in 1921. World War II
saw the Soviet and German armies again fighting for
control of Latvia, culminating with Soviet victory in
1944. However, a Russification policy had already
begun in 1940, as tens of thousands of Latvian citizens
were arrested, killed and deported to Siberia.1 By 1989,
Latvians made up only 52% of the Latvian Socialist
Republic, the remainder being Russians, Ukrainians and
other Soviet nationalities. Independence from the USSR
was achieved in 1991, relatively peacefully. Since then
Latvia has introduced a market economy and is working
towards membership of the European Union. However,
some basic indicators illustrate that prosperity will not
be achieved easily. For example, in 1997 life expectancy
for males was 60 years and for females 73. This contrasts
with life expectancy in the United Kingdom of 74 (male)
and 79 (female). Infant mortality in 1997 was 17/1000 in
Latvia and 6/1000 in the UK. Gross Domestic Product
per capita in 1996 was $3800 in Latvia and $20,400 in
the United Kingdom.
Along with the shift from a planned to a free market
economy, have come changes in the health care system.
Under the Soviet system all medical services were financed
from the state budget and were officially free of charge for
all. However, as demand exceeded the capacity of health
care institutions, long queues, bribes to officials or
monetary remuneration to doctors had become common
practice (Rowland & Telyukov, 1991; Sheiman, 1991).
Health care reforms in the 1990s introduced official user
contribution to hospital stays, fees for consultations with
health care professionals and prescription charges. The
implementation of reforms is hindered by the lack of
appropriate state funding: only 4–5 per cent of the Gross
Domestic Product in Latvia is directed to health care needs
compared to 6–9 per cent in most European countries
(Latvijas Republikas Ekonomikas Ministrija, 2000).
A voluntary health insurance system was introduced in
the mid-1990s although some free medical services are
provided including emergency care and inoculation and
dental care for children (Latvijas Republikas Labkl%aj!ıbas
Ministrija, 1995). The organisation of medical labour has
been liberalised; 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 (in their eyes
more familiar) polyclinics and health care centres where
the institution of family doctor (general practitioner) 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.
Stroke in Latvia
The epidemiological data on stroke in Latvia are
dismal. World wide, stroke is a significant cause of adult
mortality but rates of incidence and mortality are higher
1Plakans writes, ‘One estimate places the total population
loss from executions and deportations during the period from
June 1940 to June 1941 at some thirty-five thousand persons’.
(Plakans, 1995, p. 147). He also records that ‘Because the return
of Soviet power to Latvia had begun to seem inevitable by the
summer and fall months of 1944, an estimated 120,000–150,000
persons fled westwards’ (Plakans, 1995, p. 152) and that
‘During the agricultural collectivization in March of 1949 alone
(footnote continued)
about 50,000 persons designed as kulaks, were deported and
resettled in various locations throughout the USSR’ (ibid,
p. 156).
C. McKevitt et al. / Social Science & Medicine 56 (2003) 2097–21082098
in eastern Europe than in the west.2 In contrast to the
western trend, death rates appear to be rising in eastern
Europe (Sarti, Rastenyte, Cepaitis, & Tuomilehto,
1999). Unpublished data suggest that the standardised
stroke mortality rate for Latvians aged 0–64 years is
nearly three times higher in Latvia than in Western
Europe (48.4/100,000, compared to 17.74/100,000). Our
study comparing stroke outcomes and resource use
across selected European centres found that after
controlling for age and severity, mortality and disability
rates in the Latvian centre were among the poorest of all
the participating centres (Grieve et al., 2001). Patients in
the Latvian centre were least likely to regard themselves
as having recovered at 12 months after the stroke
(McKevitt, Dundas, & Wolfe, 2001). Stroke care
expenditure in Latvia was the lowest and this did not
simply reflect lower costs (of medical staff and in
hospital stays for example) but also lower levels of
input, including professional time spent with each
patient (Grieve, Dundas, Beech, & Wolfe, 2001).
Methods
For the epidemiological study, each centre recruited a
cohort of patients admitted to hospital following stroke
(McKevitt, Beech, Pound, Rudd, & Wolfe, 2000). At
three time points (admission, 3 months and 12 months)
data were collected about inputs to care including
diagnostic investigations, length of stay, access to
rehabilitation therapies, use of community services and
costs of care. Using standardised measures, patient
outcomes (mortality, morbidity and disability) were also
documented. Potential interviewees were recruited from
this cohort in Riga. Local ethics committee approval
was obtained for the interview study. A topic guide was
developed to guide the interviews. Participants were
asked to describe what happened when they had the
stroke; identify changes in their life since the stroke and
describe their responses to these; identify needs for and
sources of assistance and care; talk about what might
improve things for them; and identify the important
things in their life.
Interviews took place 12 months after initial stroke.
Purposive sampling was used to ensure a range of
interviewees in terms of age and stroke severity. Patients
with speech or cognitive impairments that were so severe
as to make interviewing difficult and those living outside
Riga were excluded from selection. Twenty nine eligible
patients were selected and invited to participate by AL
by letter; meetings were arranged by telephone. Five
could not be contacted and four individuals declined to
be interviewed. Twenty interviews were conducted in all,
with 18 taking place in the patient’s home and two in the
researcher’s office. Written consent was obtained. Four-
teen interviews were carried out with the stroke survivor
alone; in five cases the spouse also participated; in one
case the spouse and adult daughter participated.
Interviewees varied widely in their willingness to speak
in depth about their experiences and views and thus the
interviews varied in length lasting from 25min to over
3 h (McKevitt, 2000). All interviews were tape recorded
for transcription, except two: one person declined to
have the conversation recorded, while another was a
deaf woman who was unable to speak. In the latter case,
written questions were shown to the interviewee who
used a combination of writing and gestures to respond.
In both cases the interviewer made extensive notes.
Taped interviews were transcribed in full and transcripts
were translated from Latvian or Russian into English by
professional translators and checked by both CM and
AL. Analysis entailed reading and rereading transcripts,
which were coded manually. Codes were grouped into
categories reflecting both specific issues raised in the
topic guide and emergent themes. Transcripts were then
checked for the presence or absence of categories.
Coding and category development were conducted by
CM only but discussed with other authors.
Patient characteristics
Interviewees were 12 women and 8 men.3 Twelve were
Latvian, seven were Russian and one was Ukrainian.
They ranged in age from 47 to 81 years. All were living
at home with a spouse or family except for two who
were living alone. Disability was measured at 12 months
using the Barthel Index (BI).4 Eleven people were
classified as ‘independent’ in activities of daily living
(BI=20), while the remainder ranged from 9 (severely
disabled) to 19 (moderately disabled). Only three people
were working at the time of the interview, having
recovered sufficiently from their stroke. Twelve people
were already retired when they had their stroke while
five had been forced to leave work following their
stroke. Characteristics of the interviewees are reported
in Table 1.
2The WHO MONICA study conducted in 16 European and
two Asian countries found that age standardised stroke
incidence rates per 100,000 ranged from 101 to 285 among
men and from 47 to 198 among women. There were also
variations in mortality rates, with case fatality at 28 days
ranging from 15% to 49% among men and from 18% to 57%
among women (Thorvaldsen, Asplund, Kuulasmaa, Rajakan-
gas, & Schroll, 1995).
3Pseudonyms have been used for all interviewees.4The 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 & Barthel, 1965).
C. McKevitt et al. / Social Science & Medicine 56 (2003) 2097–2108 2099
The onset of stroke
Stroke is characterised as a sudden event but not all
the interviewees described their stroke as an irruption
into everyday life. Rather, these people experienced
symptoms that were not immediately interpretable as
requiring medical intervention. Their illness began with
a gradual awareness that they were ‘not quite right’.
Typically they experienced symptoms of numbness in
limbs or visual distortion which required time (up to
24 h) to be evaluated and for an assessment of what
action was appropriate. Taking time to evaluate
symptoms before seeking medical assistance is a rational
response. However, the Riga stroke survivors’ recollec-
tions also suggest a tendency to underestimate their
general condition prior to stroke. Mrs. Goba, a factory
supervisor, had a long history of hypertension but
explained her neglect of her condition by recalling the
pressures of her job, pressures which increased following
independence. Other factory and farm workers spoke in
a matter of fact way of the hard work they had carried
out all their lives. Bodily endurance and a certain degree
of ‘self-sacrifice’ were greatly valued by the ruling
ideology, especially in war and post-war time (Field,
1995).
The accounts of only seven of the Riga patients
suggest a straightforward, and rapid journey from the
onset of symptoms to admission. For others, the
itinerary from symptom onset to diagnosis was less
simple. For nearly half of those interviewed, decisions
made by ambulance doctors and other health care
personnel led to delays in medical assessment and care.
These included instances where, according to intervie-
wees’ accounts, ambulance or primary care staff did not
suspect stroke and did not refer them to hospital for
specialist evaluation.
Current stroke literature emphasises the importance
of those with suspected stroke being medically evaluated
as soon as possible. Some new pharmaceutical therapies
for stroke depend on patients being evaluated even
sooner since treatment must begin within 3 h of onset;
while a recent European expert agreement on stroke
management states that all stroke patients should be
examined in hospital within 6 h of the onset of the event
(WHO, 1996, p. 9). However the transformation of
bodily signs experienced by the individual into a medical
Table 1
Study participants
Pseudonym Sex Age Disability level
(Barthel Index at
12 months)
Nationality Living with (Former) occupation
1 Mrs. Bogdanova F 54 Mild Ukranian Husband Economist now market
seller
2 Mrs. Alksne F 80 Mild Latvian Married son Seamstress
3 Mrs. Apse F 62 Moderate Latvian Husband Supervisor seamstress
4 Mr. Berzs M 47 Independent Latvian Son Driver/PA
5 Mrs. Goba F 58 Independent Latvian Husband Factory supervisor
6 Mr. Golubev M 51 Independent Russian Alone Parking attendant
7 Mrs. Ivanova F 58 Independent Russian Married
daughter
Engineer
8 Mr. Karkls M 66 Mild Latvian Wife Aircraft designer
9 Mr. Piladzis M 67 Severe Latvian Wife Mechanic
10 Mr. Egle M 63 Independent Latvian Married son Chef
11 Mrs. Novikova F 70 Moderate Russian Daughter
granddaughter
Dishwasher
12 Mrs. Kazakova F 72 Mild Russian Husband, son,
grandchildren
Hostel warden
13 Mrs. Klava F 62 Mild Latvian Husband Housewife
14 Mrs. Mansurova F 81 Moderate Russian Husband Laboratory technician
15 Mr. Ozols M 79 Independent Latvian Daughter,
grandchildren
Photographer
16 Mr. Liepa M 63 Independent Latvian Wife, daughter Manager
17 Mrs. Zubova F 70 Independent Russian Alone Railway finance
planning
18 Mrs. Tsvetkova F 68 Independent Russian Daughter,
grandchildren
Cashier
19 Mrs. Priede F 74 Independent Latvian Son Shop assistant
20 Mr. Paeglis M 55 Independent Latvian Wife Security guard
C. McKevitt et al. / Social Science & Medicine 56 (2003) 2097–21082100
emergency requires at least two processes: an evaluation
of bodily signs by the individual (or other witnesses
to the signs), and the preparedness of medical
services to define the event as an emergency. These
accounts suggest that notions of bodily endurance and
self-sacrifice and the local organisation of services
influenced the journey to seeking and obtaining clinical
care.
Medical care
All participants were admitted to the same hospital, a
specialist centre in Riga where care is provided by
neurologists, with physiotherapy provided in the same
setting, and where the mean length of stay for stroke is
13.4 days.5 One year after the event, the interviewees
showed little awareness, or memory, of the treatment
they received in hospital although they recalled being
told when they could begin to get out of bed and being
given medication through intravenous drip or injections.
Although physical rehabilitation is regarded by clin-
icians as an important element of stroke care, most
informants had to be prompted to recall whether they
had received physiotherapy as part of their treatment.
Those who had, described it as being assisted to walk,
with exercises for specifically affected limbs. Some who
were advised to have massage found that a payment was
required for this service. Seven people reported that they
did not receive any physical therapy in the hospital,
either because it was not needed or because they were
initially too unwell for therapy. Some felt that they had
not received enough therapy, or that which they had
received was not effective.
Referral to further rehabilitation therapies provided
in a specialist rehabilitation hospital is possible but
only four patients of those interviewed (average age 59)
had been referred.6 During preliminary fieldwork, we
were told by the local stroke professionals that because
of the shortage of nurses only those who are physically
independent and have not reached retirement age can be
admitted to the rehabilitation hospital. The following
quotation suggests that the patient’s ‘character’ also
contributed to the selection for further rehabilitation:
yby the next day, I was getting out of the bed. She
[the doctor] said that it was all right to do so. yI
stood up and tried to walkyOn my own, yes, then
the head doctor came in. Said that they were coming
to take a look at me, too. It was Wednesday, I guess,
and he said that I was an optimist and that I was
going to be sent to the rehabilitation centrey
Those who had been referred to the rehabilitation
hospital were universally enthusiastic about the care
provided and the environment. Mrs. Klava considered
herself lucky to have been transferred to the rehabilita-
tion hospital, where ‘there were exercises all the time.
Also very nice nurses, and doctor’. She attributed its
quality to the fact that the centre was reportedly built
for Soviet cosmonauts. Those who felt that they had
been denied rehabilitation were resentful. Mr. Karkls
recalled being visited by a doctor with her students while
in hospital; she asked him to let them see him walk and
pronounced him one of the most promising patients.
However, because of his age, 66, he was not referred for
further rehabilitation.
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 to be sub-optimal
in the US and the UK (Hillen et al., 2000; Brass,
Krumholz, Scinto, & Radford, 1997) although the
reasons for this remain to be elucidated (Redfern,
McKevitt, Dundas, Rudd, & Wolfe, 2000). In this study
ten people routinely saw a primary care doctor for
medication prescriptions or monitoring of blood pres-
sure. Only two people spoke of modifying their diet as
a way of reducing risk of further disease. Mr. Egle, a
former chef, cut out meat from his diet, eating only fruit,
vegetables and fish since he had seen a television
programme which ‘emphasises that one must eat fish’.
He was also the only person to volunteer that he tried to
exercise for his health.
Three people said that there was no point in seeking
on-going medical care. Mrs. Alksne had been prescribed
medication for her ‘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. Mr.
Karkls and Mrs. Bogdanova thought that there was
little that doctors could do for them. Mrs. Bogdanova
explained:
There are so many patients and only one doctor. So
either I feel well or bad—I see that I am not dying
and don’t go to a doctor. I have medicines to take. I
know how to take them. Why should I harass people
all the time. They won’t make my arm or leg healthy.
Some felt that follow up was important but identified
reasons which made this difficult: the cost of medical
visits, or problems with insurance policies deterred
5The mean length of stay in the acute setting across centres
participating in the study ranged from 8.3 to 35.5.6This is a much higher proportion than in the total cohort
followed for the main study: of these 4% were referred to a
rehabilitation hospital (Grieve et al., 2001).
C. McKevitt et al. / Social Science & Medicine 56 (2003) 2097–2108 2101
them; they were unsure where they should receive care
and whether they were eligible to be seen by one of 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 cited
this as a reason for not seeking follow up. Mr. Karkls
had attended his local polyclinic but said:
in polyclinics if you tell the doctor to prescribe this or
that medicine, the doctor will write the prescription,
yes, but I don’t know what to ask foryI am not a
doctor, you know.
However, the need to prevent stroke recurrence was
not generally voiced as a priority. 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 alleviate but
medical services were not regarded as being able to offer
much.
‘Social’ assistance
The problem of stroke in western settings is often
characterised as a burden on families and state services
providing assistance to those left disabled. In Latvia,
community services for the elderly or those with
disabilities, such as home helps for domestic chores,
bathing services and respite care, are almost non-
existent.7 All but one interviewee lived with a spouse
or other family members, some in three generation
households. Mrs. Mansurova, the most severely disabled
interviewee, relied on her husband and daughter for
basic care. Leaving the fourth floor flat was impossible
because there was no lift and she was too heavy to be
carried down stairs. Mrs. Mansurova’s daughter
thought it would be helpful to have a nurse to 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 centre.
For all but one participant, friends were not sources
of assistance. Mrs. Zubova, who lived alone, seldom saw
her family and was unable to leave the flat because she
was unable to dress herself properly, described her
reluctance to ask her neighbours for help:
Well, everybody has their own life, and I am a shy
person, I can’t trouble them for an extra runywe
moved to this flat not long ago. I don’t know
themyeveryone has their own troubles.
Some interviewees participated in Catholic or Ortho-
dox church life but all described this as a private activity,
a way of seeking solace but not a source of practical
assistance. Mr. Egle seemed surprised by the intervie-
wer’s question about whether other parishioners were a
source of support:
Well, I have not been talking about it with the parish,
about my diseases. I just go to church individually,
on my own.
Similarly Mrs. Zubova did not expect help from
others in her parish:
Everybody just goes to the church, say, a neighbour
of mine goes too. Other neighbours—old things—
they go somewhere to the monastery. They are by
themselves, I’m by myself, not that there was a
community. No communities there. We are Ortho-
dox, and that’s all.
Rather than providing practical help to people, she
suggested, the church itself was in financial need,
dependent on donations and worshippers like herself
purchasing candles.
Disability status
By contrast, there was an expectation that financial
help should be provided to disabled people from the
state through the officially awarded disability status.
Recent changes in legislation means that people of
retirement age (60 for men and 55 for women at the time
of interviews) are no longer eligible for such benefits.8
This reduced eligibility was a source of discontent to
several interviewees. Mrs. Apse complained,
yif I’d got that disability category, I would be
getting a couple of lats more9yThat’s what I take to
heart most; I’m thinking: I’ve worked so much—all
7A state home help service exists but is diminishing in
significance: only 6600 persons received such help in Latvia in
1999. A disabled or elderly person can request an allowance
from the local municipality to pay helper but the suma available
is not generally adequate. Few places are available in homes for
the elderly and/or disabled: in 1999 there were 1498 residents in
such homes (Latvijas Republikas Labkl%aj!ıbas Ministrija, 2000).
8Under the Soviet system, citizens were entitled to retire from
work at a comparatively younger age compared to the West.
Raising the retirement age has been regarded as a priority since
independence, as one way of reducing public expenditure on
social care (c.f. Dreifelds, 1996).9The unit of currency in Latvia is the lats (LVL); in recent
years, 1 lats has fluctuated around 0.9 pound sterling.
C. McKevitt et al. / Social Science & Medicine 56 (2003) 2097–21082102
my life andyonce I fall ill, the doctor couldn’t sort
that out.
Mrs. Ivanova, entitled to assistance from her former
employer, the relatively prosperous state railway com-
pany, illustrated how frustrating the bureaucratic
iterations involved in applying for such allowances
could be:
You see now, this support was 15 lats last year,
because of my condition, and even then I had to give
back 5 lats in taxes. And it was 10 lats net, what
support is that? It’s better not to go and applyybe-
cause it’s humiliating, to walk around all the offices
and write applications and to get 10 latsy
However, like others, these women envisaged that the
extra income would be useful to help pay for medica-
tion, rather than for any social assistance.
‘You know how it is to be sick and penniless’
At the outset of the research we were warned by a
clinician colleague in Riga that our interviewees would
be unwilling to discuss their subjective experience of
stroke and recovery but would see the interview as an
opportunity to complain about their poor finances. In
this, she argued, stroke patients were unlikely to differ
from other elderly people in Latvia existing on meagre
state pensions. In fact, it was true that all interviewees
referred to the economic difficulties they faced, although
there were apparent differences in the resources avail-
able to different participants, with some clearly poorer
than others.
Some of those interviewed regarded their current
economic situation as the most significant difficulty they
faced. Most interviewed were retired and on a fixed state
pension, with 47 lats per month a common sum.10
Expenses to be met from this sum included rent,
household bills, food and medication. For example,
Mrs Zubova, a 70 year old Russian woman living alone
launched into the interview with her complaint:
I’ve got nothing to live on. You see, my salary isyor
rather, the pension is 47 lats, and I have to pay 47 lats
for the flatynot counting other bills.
She explained that she was already in arrears with her
rent payment and feared that she might be thrown out of
her flat. Other family members were not in a position to
help: she was a widow and her married son was
unemployed with a family of his own to support. Most
other pensioners interviewed repeated Mrs Zubova’s
lament that the state pension was inadequate to meet the
cost of living, repeating the complaint that once the bills
were paid there was no money left to buy food.
Of course, the problem of small state pensions is
common to all elderly people in Latvia. A 1997 survey
found that of all respondents, pensioners were the least
satisfied with their material circumstances; 42.7 per cent
of them considered their circumstances ‘very bad’
(United Nations Development Programme, 1998). How-
ever, those with chronic illnesses face additional costs of
medical bills and costs of medication. Primary care
consultations are relatively cheap—20 santims per visit
at the time of interview—but demanding for those who
need them regularly. As reported above, medication
costs were characterised as burdensome and, like Mrs.
Priede, interviewees typically calculated their monthly
expenses:
I have to take a lot of drugs. In the morning, I have
to take about 5 pills—different ones—and in the
eveningyonly three then. Eight pills altogether in a
day. And it costs an awful lot. Drugs are extremely
expensive. I have to spend about 10 Lats per month
just for drugs, for drugs alone. And what about the
restyeating, and so on. I get only 43 Lats per month.
My flat is rather expensive, tooyI have to pay 30
Lats per month. And that means that there’s nothing
left for food from these 43 Lats.
‘That disease made me ill’—the impact of stroke
Only two people considered that they were ‘cured’ and
that life had returned to normal. Both had been able to
return to paid employment. However, all participants
(except one of the latter two) spoke of how the stroke
had changed their body. Such changes included the
onset of chronic pain, loss of physical strength, reduced
dexterity in hands and fingers and reduced limb move-
ment. Some also identified changes in their cognitive
abilities, mood or personality. Mrs. Ivanova said that
her stroke had led to a much slower pace of life which
she explained thus:
I feel inside that I am not really well, not healthy.
I feel it in my brain, brains, in the sense that it is not a
physical feeling of pain, but rather I realise that the
thinking doesn’t work so well as before.
Depressive symptoms after stroke may occur more
frequently among stroke survivors than among others of
the same age and sex (Eastwood, Rifat, Nobbs, &
Ruderman, 1989). Clinical depression was not measured
in this study, and only two people defined themselves as
literally depressed during the interview. Others however
10The average monthly pension at the time of interview was
42.2 lats in 1997. (United Nations Development Programme,
1998). As a number of informants stated, this sum was close to
the average rent and heating expenses for a two-room flat in a
block of flats built in Riga in Soviet times.
C. McKevitt et al. / Social Science & Medicine 56 (2003) 2097–2108 2103
referred to themselves as suffering from ‘nerves’10 or
said that their overall mood had worsened since their
stroke.
The importance of such changes in body and mind lay
in the ways they affected the kind of life interviewees
could now lead (c.f. Dowsell 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,
gardening, and leaving the house to shop or visit friends
and family. These included people categorised as
‘independent’ in functional activities (BI=20) illustrat-
ing the considerable difference between being able
to function as a body in physiological terms and
functioning as a social being.
The meanings of stroke for individual lives
Part of the work of processing an experience such as
serious illness is that of ascribing meaning to that
experience (c.f. Riessman, 1993). What was the import
of the changes which these stroke survivors identified?
We have identified five broad ways in which interviewees
appeared to process their own experience of stroke.
Four interpretations of stroke were offered by inter-
viewees in relation to themselves as individuals.
Firstly, two men who had returned to work discussed
the notion that the stroke might be a warning sign
to modify their lifestyle thereby looking after their
future health. While one declared that he had heeded
the warning, the other was sceptical arguing that
whether he took care of himself or not, death is
eventually inevitable for everyone.
Secondly, a minority also conceptualised the stroke as
an adversity which they had to try to overcome drawing
on inner resources, such as optimism and self-reliance.
Mrs. Bogdanova reflected on how she struggled to
overcome 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
the bottom of my heart I did not lose my hope that I
would. I have high heel shoes. Even on the first day I
put them on. At first I couldn’t put them onyI tried
but my foot was like this all the time. I couldn’t walk
with my foot turned. But now I can put them on and
stand for two seconds. And then I sit down again. Do
you see? I don’t know if it will help me but I have
some moral support. I am not a princess but all
women are shocked: well, will I be able to wear shoes
with heels? So I force myself.
However, this interpretation might not be long
lasting. While Mr. Karkls described exercising to
recover ability, he also revealed that his initial optimism
was turning into pessimism.
Thirdly, some interviewees described how they were
still able to contribute to family life, helping with child
care, cooking, running errands. Others, however,
described their frustration with their increasing depen-
dence on younger or healthier family members. Rather
than this being a negative judgement of dependence
per se, it signified a loss of productivity, important in
intergenerational families under economic pressure.
Being no longer able to contribute to the household
materially or in other ways, was catastrophic leading
interviewees to ask rhetorically, ‘What am I good for
now?’
Finally, stroke was also seen as a sign of impending
death. Mrs. Alksne, 80 years old, appeared to have
accepted stroke as heralding her own death with some
equanimity. By contrast Mr. Piladzis was relatively
young (55) and although clinically defined as indepen-
dent was distressed that he could no longer work. In the
interview he burst into tears, saying:
Well, sometimesyI take pills for my nerves, I do,
I have kind of emotionsyto end to my life and that’s
all, there are moments like that. What am I good for
any more?
Stroke in a time of upheaval
Stroke was also interpreted in ways, which trans-
cended individual biographies, setting personal stories of
suffering in the context of shared experiences of
suffering. Drawing on her work with Latvians with a
history of neurasthenia (an often used but non-specific
psychiatric diagnosis) Skultans has argued that ‘Latvian
resistance to Soviet occupation was embodied in
evocative transcripts of ill health’ (1997, p. 22). Rather
than describe their neurasthenia illness experience,
Skultans’ informants recalled their experiences of life
under Soviet occupation of Latvia, stories of violence,
deportation, repression and fear. Their accounts chal-
lenge the psychiatric labelling of them as inadequate,
laying ‘the blame for illness at the doors of society and
history’ (Skultans, 1997, p. 13). Stroke survivors also set
their illness accounts in a social, historical context but
for the most part this was restricted to the more recent
turbulence they had experienced since Latvian indepen-
dence, including the transformation of the economic
system and the implications of the change to the free
market.
Some blamed their illness on the impact of economic
changes. For example Mrs. Goba and her husband
brought up the subject of recent changes in property
ownership. Following independence, legislation was
introduced to allow former owners or their descendants
C. McKevitt et al. / Social Science & Medicine 56 (2003) 2097–21082104
to claim back property taken by the Soviet state; land
and buildings once belonging to the state were
privatised, with many tenants of state-owned houses
given a date when they would have to move. Some new
owners discovered the worry of managing property
without adequate resources. Mrs. Goba reported a
dispute with their relatives over a piece of forest which
they had inherited, linking the accumulation of ‘all this
pressure and distress’ to her ill health.
Others blamed the unpredictability of the new labour
market for their illness. When the military factory where
he used to work was shut down, Mr. Karkls, a top class
engineer, took up a job in private company:
Before that illness of mine there was a stressful
situation because there was a shortage of work... And
then some people working there were forced to take
unpaid leavey 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
while.
Mrs. Bogdanova was worried about her husband’s
job. He had worked in the metal industry all his life but
now the factories were all closing. Whereas his
manufacturing job had entailed producing goods, now
at 56 he was ill equipped to work in what she now saw as
the dominant industry of the new capitalism—buying
and selling.
Along with the economic changes, participants
described the change in social relations with stories of
houses being broken into, a fear of strangers and
criticisms of the provision of public services from health
care to heating. Independence had brought with it a
pervasive sense of uncertainty and insecurity. Mr. Liepa
described the sense of disorder, which he felt now
characterised life:
I think that to live properly, you need normal health,
all normal conditions, because the situation of today
is not normal. You cannot believe in tomorrow, you
don’t know if tomorrow there will be heating, water
supply, if you can get into health centre. It is very
hard in a moral sense. I told everybody that my
calculations were very simple until about 1990. I
calculated that I would retire and not have to work a
single day after that. That my pension would be 135
roublesywell, 132, maybe. There would be no
problems. So I would have to pay 25 roubles for
the flat. I calculated everything: how much would it
be for electricity, phone, newspapers and then I
would still have money for my car, petrol, and then I
would be able to buy something for myself, a cake or
something. And I would be satisfied with that and
live in peace, with minimum expenses, in a normal
manner. But today, I am, like, strandedycan hardly
pay for the flat, not to mention eating or anything
elseyAnd I am not sure if my flat will be warm
tomorrow.
Mrs. Liepa also referred to the uncertainty in the
future which she felt people now experience, making an
explicit connection between collective social suffering
and individual ill health:
I think that under the current government everyone is
under a strain. It is impossible. I think that we are all
sick, all of us. Sick for... for this disorder in our lives,
lack of confidence in anything. You mayy be
destroyed at any time, you are not secure.
The new order had promised much but for people
near or already of pensionable age, economic freedom
made their lives more difficult than they anticipated.
Nor was it likely that the situation would improve in
their lifetime. Mr. Liepa recalled reading something that
the first prime minister of the newly independent Latvia
had said,
that we just have to die and afterwards it would get
better. That our generation is unfortunatey
The stroke survivors’ expectations of what life would
be like in retirement were not realized. Mrs. Klava spoke
of how she and her husband had optimistically
participated in the demonstrations for ‘the Free Latvia’.
Nor were they alone. Dreifelds remarks of this period,
‘Its promises of peaceful change towards independence
brought Latvians together in a rare embrace of
solidarity. The visions of the future of the Latvians
were highly optimistic’ (Dreifelds, 1996, p. 70). Eco-
nomically Mrs. Klava and her husband had been
reasonably well off. She was a school teacher, though
she had not worked much because of ill health. Her
husband had a good salary of more than 300 roubles a
month. Being careful with their money, she and her
husband enjoyed their life together. They had subsidised
train fares and taken holidays in Moscow, Tallin and
other places in the Soviet Union. They had also
managed to save for their old age, a sum of 10,000
roubles which would provide interest that they could use
to supplement state pension. Yet Mrs. Klava also lived
with a sense of fear during Soviet rule. At the time of
Andropov’s rule she was sure she had been under
surveillance, having once criticised the government
during a phone call made to her sister from a public
telephone box. A Catholic, she had secretly attended
mass while a school girl. Once she began working as a
school teacher, it was no longer prudent to do so. She
recalled thinking then, ‘Now one must even be afraid of
little children’.
The idea of free Latvia was therefore something the
stroke survivors had looked forward to, hoping for a
better life. But with independence, the currency devalued
C. McKevitt et al. / Social Science & Medicine 56 (2003) 2097–2108 2105
and their savings vanished. Now, Mrs Klava commen-
ted,
There is everything in the market—only the purse is
empty.
As if to emphasise their poverty, many people spoke
of a new phenomenon in Latvian society: humpals
(humana palidziba) or humanitarian aid, products sent
from wealthier nations. One woman for example
described how she now bought clothes and shoes from
second hand shops, goods sent as humanitarian aid from
abroad. Others spoke of the drugs gifted to Latvia,
which they felt were unwanted by their benefactors as
they were ineffective or out of date.
In Soviet times, pensioners 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, as Mrs. Goba put it ‘in the category of the poor!’ It
is hardly surprising that all the pensioners interviewed
should lament their poverty.
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. Unlike Skultans’
informants, they did not generally attribute the genesis
of their illness to a collective experience of suffering
under an oppressive regime, although some thought
their hard working lives were to blame. They did, on the
other hand, illustrate how a socially produced suffering
exacerbated their individual ability to deal with the
aftermath of stroke. Mrs. Goba however went further
than most stroke survivors when she used her illness to
think about the suffering endured by Latvians over the
last 50 years or so. Individual and social suffering were
connected:
Because in Latvia the people, you see, people are
different. Our generation, it was the war that affected
all of us and made people be careful not to let it
happen again and it was just the same as an illness.
And then the Stalin regime set in, and many of our
relatives suffered from ityeveryone who has suf-
fered, will never feel sure about [the future]. Like I
suffered from that stroke, I am afraid about my leg
or arm. And they are afraid about themselves just the
same way.
Thus the suffering of the ‘unfortunate generation’ was
made explicit: more than once in their lives they had
encountered overwhelming social changes which they
perceived as an illness of society. Mrs. Goba, at 58 years
old, was born during the early years of the second world
war and so could hardly have had first hand memories
of it. Yet Latvia was devastated as the nation was
invaded by both Germany and the Soviet Union and
then annexed by the Soviets. Her generation had
witnessed Stalin’s reign of terror with its murder, mass
deportations, splitting up of families, and programme of
enforced Russification. As they grew older and more
likely to succumb to disease, the state was no longer
generous with pensions, health care, or disability
allowances. Independence, though welcome, was shown
to demand further sacrifice of them. Mrs. Goba’s
account which brings together nation and individual,
personal and collective suffering finds echoes in the
narratives of Skultans’ informants who, she suggests,
articulated a perceived necessary connection between
suffering, the destruction of meaning and being Latvian
(1998, p. 66).
Discussion
This interview study was undertaken within an
investigation whose epidemiological framework neces-
sarily assumed that a homogeneous entity—stroke—was
being compared across European centres. The interview
study by contrast sought to understand how the local
culture and social structures shape the perception and
experience of disease (Kleinman, 1980, 1988; Good &
Good, 1994). A number of features present in these
accounts are to be found elsewhere, for example,
participants’ desire for more rehabilitation therapy
(McKevitt & Wolfe, 2000) and the apparently low
priority accorded clinical management of risk factors for
stroke recurrence (Hillen et al., 2000). But there are also
tangible differences in the ways that local circumstances
influence the nature of what stroke disease is and what
responses to it are feasible and appropriate. This can be
seen in the way that local services dictate the processes
by which stroke is identified and appropriate actions
then defined. National and individual economic circum-
stances also shape stroke care, for example in the way
that inability to incur extra expense deterred many
people from seeking medical advice following discharge
from hospital. International bodies, such as expert
groups producing clinical guidelines or those dissemi-
nating evidence from clinical trials, increasingly seek to
influence the provision of medical care globally.
Information about the locally constructed nature of
disease and responses to it highlight the obstacles in the
way of such endeavours. In Riga stroke survivors’
responses to their situation are influenced by expecta-
tions of productivity, or usefulness in later life and the
role of the state to provide care. For the Latvian
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.
C. McKevitt et al. / Social Science & Medicine 56 (2003) 2097–21082106
Sociological studies of stroke have long argued for the
need to broaden the clinical perspective on recovery and
life after stroke, criticising the narrow focus on
indicators of physical function. Doolittle argued 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. This
involves restoration of the member-participant self in
the community’ (Doolittle, 1984, p. 213). Her emphasis
therefore is that understanding the role of the skilled
cultural and habitual body is central to understanding
the experience of stroke. Participants in this study also
evaluated the impact of their illness with regard to its
effect on their meaningful social participation. However,
meaningful participation for Latvian stroke survivors
largely entailed notions of productivity either through
paid work, or through contribution to the running of the
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-Soviet Latvia, productivity has
taken on a new importance as pensioners’ incomes have
fallen dramatically in relation to their purchasing power,
and as their adult children experience unemployment or
the threat of unemployment. Pensioners who can, work
to supplement their household economy, or help
running the house supporting other adults who work
outside the home. Older adults who cannot thus
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 rely on complete assistance from the
state.
The notion of biographical disruption has been
explicitly and implicitly used to interpret accounts of
chronic illness with the assumption that illness narra-
tives are told to recreate a sense of order and coherence.
Pound et al. (1998) argued that ‘biographical disruption’
was not relevant to the accounts of their informants in
London’s East End. Contrary to the researchers’
expectations, the interviewees did not describe stroke
as calamitous. 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 a culturally based stoicism may have dictated this
response as appropriate. The lives of Latvian informants
were also marked by prior experience of ‘disruption’
though that term seems absurdly inadequate if applied
to the kind of state terror described by Skultans (1998)
and alluded to by some participants in this study. Yet
there was no sense that 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’ since it
only highlighted the abnormality of social life. The sense
of stroke survivors’ tragedy may have indeed 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 gave voice to protest against the
cruelty of history. The concern was less with recreating
coherence in the individual biography than with locating
individual misfortune within the damaged social bio-
graphy, that of the unfortunate generation that has been
and continues to be fractured.
Stroke in the west has long been characterised as a
disorder for which little can be done (Pound, Bury, &
Ebrahim, 1997). This nihilism is now being countered by
the ideology of multidisciplinary care, the development
of guidelines to improve care and the promise of
pharmacological interventions. In the United Kingdom
at least, there is evidence of continued poor care
(Ebrahim & Redfern, 1999; Rudd, Irwin, Lowe, &
Pearson, 2001). Taking an audit approach, these studies
compare indicators of the care provided with pre-defined
standards of clinical excellence so that the failings will
always be failings of providers or systems. The Latvian
stroke accounts point 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 aspire to.
In the west too, these are issues worth considering.
Acknowledgements
We wish to acknowledge the support of the European
Union Biomed II programme for funding. We are
grateful to clinical colleagues in Riga, Latvia who
facilitated the research, and to stroke survivors and
their families who participated in interviews.
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