Division of Psychiatry, University of Lund
Psychiatric Research Centre, Örebro, Sweden
Correspondence: Dr Margareta Östman, Department of Clinical Neuroscience, Division of Psychiatry, University Hospital SE-221 85 Lund, Sweden. Tel: 46 173849; fax: 46 173884; e-mail: margareta.ostman{at}psykiatr.lu.se
Declaration of interest The study was supported by grants from the Vardal Foundation, Sweden (V2001 141).
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ABSTRACT |
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Aims To investigate factors of psychological significance related to stigma of the relatives.
Method In a Swedish multi-centre study, 162 relatives of patients in acute psychiatric wards following both voluntary and compulsory admissions were interviewed concerning psychological factors related to stigma.
Results A majority of relatives experienced psychological factors of stigma by association. Eighteen per cent of the relatives had at times thought that the patient would be better off dead, and 10% had experienced suicidal thoughts. Stigma by association was greater in relatives experiencing mental health problems of their own, and was unaffected by patient background characteristics.
Conclusions Interventions are needed to reduce the negative effects of psychological factors related to stigma by association in relatives of people with mental illness.
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INTRODUCTION |
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Stigma is defined as a sign of disgrace or discredit that sets a person apart from others. Goffman (1963), a sociological researcher with an interest in psychiatric stigma, defined stigma in terms of undesirable deeply discrediting attributes that disqualify one from full social acceptance and motivate efforts by the stigmatised individual to hide the mark when possible. However, he also commented that the difference between a normal and a stigmatised person was a question of perspective, not reality, and that stigma is in the eye of the beholder. A more recent definition has been proposed by Link & Phelan (2001) in which stigma exists when elements of labelling, stereotyping, separating, status loss and discrimination co-occur in a power situation that allows these processes to unfold.
Stigma by association
Stigma affects not only people with mental illnesses, but their families as
well. The process by which a person is stigmatised by virtue of association
with another stigmatised individual has been referred to as
courtesy (Goffman,
1963) or associative stigma
(Mehta & Farina, 1988).
Stigma by association has received comparatively little attention from
empirical researchers. According to Mehta & Farina
(1988), being a close relative
of a person with severe mental illness creates a particularly difficult
and delicate position if they cannot remove themselves, for they are both
marker and marked. Other studies confirm the process of stigma by
association in family members (Lefley,
1987; Phelan et al,
1998; Byrne, 2001;
Struening et al,
2001).
To widen the knowledge of stigma by association in families of patients with severe mental illness it might be valuable to measure aspects of psychological distress and psychological burden perceived by members of these families. Accordingly, understanding how the situation of stigma affects family members both in connection with psychological feelings towards the ill person and in connection with psychiatric services can increase the knowledge of the situation of these families. Different aspects of family burden and participation in care are important parts of a Swedish study of the quality of mental health services during the period 1997-1999. In this study relatives of both compulsorily and voluntarily admitted patients were interviewed about different aspects of their burden, the need for support and their participation in the care of the patient. In particular, the psychological effects of being a relative of a person with severe mental illness were assessed.
The aim of the part of the study reported here was to investigate factors of psychological significance related to stigma by association in the relatives. Further aims are to investigate differences in these factors according to background variables concerning both the patient and the relative, and the relationship between the relative's mental health and perceived associative stigma.
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METHOD |
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A consecutive sample of committed patients and a random sample of patients voluntarily admitted to acute psychiatric wards were included in the study. People aged under 18 years and over 70 years, people with a main diagnosis of alcohol or substance misuse, severe learning difficulties or severe dementia, mentally disordered offenders, and individuals not speaking Swedish were excluded. The remaining patients were contacted by a psychiatrist within 5 days of their admission and invited to participate in the study. A psychiatrist assessed the patients' psychosocial functioning and psychopathology, and assigned a diagnosis according to DSMIV criteria (American Psychiatric Association, 1994). Three weeks after admission to hospital a clinical psychologist or a psychiatrist interviewed the patients and asked their permission to interview a close relative, nominated by the patient.
Relatives were identified as spouses, parents, children or other (mainly siblings), or as non-relatives. The interview with the relative was performed about a month after the patient's admission to hospital, by a trained psychiatric social worker. None of the interviewers was involved in the treatment of the patient. Some information concerning the patient was collected from case notes and an interview with the patient. The study was approved by the research ethics committee of the Medical Faculty of the University of Uppsala.
Setting
The study has as its subject the in-patient psychiatric services of four
different Swedish centres, each with comprehensive responsibility for a
geographically defined catchment area comprising both urban and rural areas,
and with a total population of 90 000-260 000 inhabitants. The psychiatric
departments in the counties had 3.13-5.13 beds per 10 000 inhabitants for
short-term psychiatric care.
Participants
A consecutive sample of 196 committed patients and a random sample of 179
voluntarily admitted patients were asked to take part. At the first interview
138 committed and 144 voluntarily admitted patients participated, and at the
follow-up interview (around 3 weeks after admission) 118 and 117 patients,
respectively, took part. At the second interview the patients were asked for
permission to contact a relative. Altogether 162 relatives 73
relatives of the committed patients and 89 relatives of the voluntarily
admitted patients were interviewed. Drop-out occurred at two different
stages in the investigation: when patients refused contact with a relative or
stated that they lacked a relative to interview, and when the relative refused
an interview or when contact failed. Dropout occurred twice as often at the
first stage. Of the relatives asked to participate, 13% refused or were unable
to perform the interview.
Patients whose close relatives were interviewed did not differ from the entire sample in terms of gender, age, diagnosis and level of functioning. Thirty-eight per cent of the patients were men. The mean age was 43 years (range 19-69 years). Thirty-one per cent of both the committed and the voluntarily admitted patients had a psychosis diagnosis according to DSMIV, including schizophrenia, delusional disorders, schizoaffective and schizophreniform disorders and atypical psychoses; 44% had a diagnosis of affective mood disorder and 25% had other diagnoses. Their psychosocial function was measured using the Global Assessment Scale (American Psychiatric Association, 1987); the mean score was 37 (range 10-71). Background characteristics of the participating relatives are shown in Table 1.
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Interview with the relatives
The instrument used was a semi-structured questionnaire, asking relatives
about their situation as the relative of a person with severe mental illness
and their experiences in relation to both compulsory and voluntary psychiatric
care. The questionnaire was developed from clinical experience and focuses on
the burden of relatives, their need for support, and participation in the
care. It contains 95 questions, measuring the relative's own objective
feelings. The instrument includes eight dimensions of burden and participation
in care, as well as measures of family attitudes towards mental health care in
a general hospital. The instrument takes 60-90 min to administer, of which the
burden items take about 45 min. The time frame for the question
is in most cases the month before the patient's admission to hospital. The
instrument was developed for face-to-face interviews, but is also suitable for
use over the telephone. The interrater reliability has been calculated and
found satisfactory, with Cohen's =0.98 and an absolute correspondence
of ratings in 96% of the questions. The testretest reliability
concerning burden and participation in care has been found to be generally
satisfactory, measured both as a percentage of concordance and as Cohen's
(Östman & Hansson,
2000a). The instrument is also available in an English
version and has been further described by Schene et al
(1994).
The following items describing psychological factors related to associated stigma were investigated, and the respondents' answers were classified as yes/no:
Statistical analysis
The chi-squared test was used to test for differences in proportions.
Comparisons of answers to items describing psychological factors between
subgroups were carried out with non-parametric tests, the Kruskal-Wallis test
and the MannWhitney U-test. A P level of 0.05 was
considered significant.
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RESULTS |
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When psychological factors related to stigma assessed in this study were
compared with the patients' diagnosis
(Table 2) only one difference
was found. Relatives of patients with an affective disorder were less likely
to believe that the patient would be better off dead (9% v. 24% and
27%; 2=7.8, d.f.=2, P=0.020). No other difference was
found in relation to diagnosis. No significant differences were found due to
the patient's age, gender or global assessment score, or whether the patient's
admission was compulsory or voluntary.
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When controlling for background variables of the relatives, there was no
difference among the measured factors of stigma in relation to the relative's
age. Depending on the relative's gender there was a difference in one respect:
a greater proportion of women had thought that the ill relative would be
better off dead (72% v. 28%; 2=6.1, d.f.=2,
P=0.048).
When the nature of the relationship was considered
(Table 3), some differences
were found: spouses were more often negatively affected in their possibilities
of having company of their own (55% v. 21-33%;
2=12.5, d.f.=3, P= 0.006), and more often had times
of wishing that the patient had never been born or that the relative and the
patient had never met (32% v. 5-23%;
2=8.2, d.f.=3,
P=0.043). Spouses also more seldom believed that the ill relative
would be better off dead (4% v. 21-33%;
2=10.3,
d.f.=3, P=0.016).
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When the relative lived with the patient, a greater proportion reported
that the patient's mental illness had affected their possibilities of having
company of their own (51% v. 24%; 2=12.4, d.f.=1,
P<0.001). Furthermore, there was a smaller proportion who
sometimes believed that the patient would be better off dead (3% v.
27%;
2=14.2, d.f.=1, P<0.001) and a greater
proportion of relatives who sometimes wished that the patient had never been
born or that the relative and the patient had never met (30% v. 16%;
2=4.3, d.f.=1, P=0.038).
Psychological factors of stigma related to relatives' own mental
health problems
Among the relatives who felt that the patient's mental illness had caused
mental health problems in themselves 40% of the total group of
relatives a greater proportion sometimes believed that the ill person
would be better off dead (26% v. 12%; 2=5.03,
d.f.=0.025). This group was also more likely to have had suicidal thoughts
(20% v. 3%;
2=12.5, d.f.=1, P<0.001).
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DISCUSSION |
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Psychological factors related to stigma
The results showed that a relatively high proportion of relatives
considered that the patient's mental illness had affected the possibilities of
having company of their own or had influenced relations with others, and had
also led to mental health problems in the relatives themselves. A striking
finding was that, for one group of relatives, these circumstances had
seriously affected their thoughts about life and death, both in connection
with their ill relative and in terms of suicidal thoughts of their own.
Additionally, these relatives believed that the ill relative would be better
off dead, and/or wished that the patient and the relative had never met and
that the patient had never been born.
A majority of the relatives obtained support in carrying the burden of being related to a person with severe mental illness, mostly from other family members or their network of close friends, and more seldom from employees of the psychiatric services. Relatives' feelings of inferiority to staff in conversation, which is a stigmatising experience, may be an explanation for the low levels of cooperation between relatives and professionals.
Patient background factors
Minimal differences were found between psychological factors related to
stigma among relatives and the background characteristics of the patient,
whether age, gender, form of diagnosis or psychosocial functioning. This may
illustrate that the situation of being a close relative of a person with
severe mental illness is in itself a factor of importance, and contradicts the
conventional wisdom of anti-stigma initiatives, that members of the public
differentiate between illnesses. Furthermore, our results indicate differences
in psychological factors of stigma according to the relative's gender and
relationship to the patient. Female relatives were more prone to believe that
the patient would be better off dead, and spouses (of whom a majority were
men) were more affected in their possibilities of having company of their own
and more often had times wishing that the relative and the patient had never
met. In contrast to other relatives, spouses almost never believed that the
patient would be better off dead. Our results may indicate, as seen in an
earlier study by Noh & Avison
(1988), specific gender
differences among relatives in coping with their burdensome situation.
Relationship between stigma by association and the relatives' mental
health
The findings of a high level of occurrence of psychological distress among
relatives of people with severe mental illness are in accordance with earlier
studies of relatives where the patient had been admitted to hospital (Scottish
Schizophrenia Research Group,
1987,
1988). An earlier study by
Östman & Hansson
(2000b) reported a
relationship between the relative's mental health and family burden, as well
as participation in care and the relative's own need for support. In all
areas, relatives who had no mental health problems seemed to live a life more
of their own, were more satisfied with the patient's treatment and more often
had a positive view of the quality of the psychiatric services. These earlier
findings agree reasonably well with our findings of more psychological factors
of stigma when the relatives experience mental health problems themselves.
That relatives with their own mental health problems more often think that the
patient would be better off dead and have more suicidal thoughts of their own
ought to lead to new efforts to decrease the psychological costs in these
families. Furthermore, a well-functioning and supportive network around a
person with mental illness has been shown to reduce relapse
(Bebbington & Kuipers,
1994; Cornwall & Scott,
1996).
Limitations of the study
Although the study has limitations in its use of a semi-structured
interview with single questions for assessment of different factors of burden
and of psychological distress, it also has the strength of investigating
themes not previously approached. The semi-structured interview method makes
it possible to obtain information and assess topics of a psychological nature,
questions of life and death, and factors related to associated stigma, in a
research design with a relatively large sample size.
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Clinical Implications and Limitations |
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LIMITATIONS
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REFERENCES |
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Received for publication April 24, 2002. Revision received August 1, 2002. Accepted for publication August 1, 2002.
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