Psychiatric Bulletin (2003) 27: 134-136. doi: 10.1192/pb.27.4.134
© 2003 The Royal College of Psychiatrists
Psychiatric Bulletin (2003) 27: 134-136
© 2003 The Royal College of Psychiatrists
Relatives and their attitude to early detection of schizophrenic psychosis
Christoph Lauber, Consultant Psychiatrist and
Wulf Rössler, Head of Department
Psychiatric University Hospital, Social Psychiatric Research Unit,
Militärstrasse 8, PO Box 1930, CH-8021 Zurich, Switzerland
Declaration of interest
None.
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Abstract
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AIMS AND METHOD
To assess the attitudes of relatives of patients with psychosis to early
diagnosis, the respective consequences and to specialised out-patient services
for early detection, we undertook a postal questionnaire survey.
RESULTS
Eighty-five per cent of the respondents (n=200) would have visited
a specialised out-patient service for early detection and 79% would have
preferred to find out the diagnosis earlier. Some consequences of an early
diagnosis (facing the problems associated with the illness earlier, having
more appropriate behaviour towards the affected, earlier contact with other
relatives and earlier treatment) are frequently mentioned.
CLINICAL IMPLICATIONS
Being favourable to both early diagnosis of psychosis and specialised
out-patient services, most relatives are a useful source of support for
professionals in convincing patients of diagnostic procedures and
treatment.
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Introduction
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The prodrome and the early phase of psychosis has yielded intensive
clinical and research efforts, such as the setting up of specialised National
Health Service (NHS) out-patient services in the UK and the nationwide
research network in Germany. This ‘core task for general
psychiatry’ (Whitwell,
2001) aims to avoid the biological and psychosocial deterioration
at the earliest possible stage of the illness
(Simon et al, 2001).
Aside from the affected, however, relatives are experiencing the fatal effects
of psychosis. They are intensively involved in the support system of people
with psychosis (Bengtsson-Tops &
Hansson, 2001) and thus in the last decade, the perspective of
relatives has become increasingly important for professionals.
However, there are only a few studies on the carers' attitude to the early
detection of psychosis. A survey among a Swiss self-help group for relatives
of patients with psychosis showed that carers have ambiguous attitudes: they
support research efforts concerning early detection in general, but they also
express considerable doubts about it (they might fear possible consequences
for the affected, such as stigmatisation due to the diagnosis or the emphasis
on psychotropic treatment without additional psychosocial support)
(Lauber et al, 2001).
In this paper, we focus on the carers' opinion about specialised out-patient
services for early detection of psychosis and the consequences of an early
diagnosis for carers and affected individuals.
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Method
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A semi-structured questionnaire was sent by mail to 480 relatives of
mentally ill patients, all members of the Swiss organisation for relatives of
psychotic patients. A total of 214 questionnaires were returned (45% response
rate), but 14 questionnaires were excluded because they were not filled out.
78.5% of the remaining 200 respondents were female. The median age was 60.4
(s.d.=11.73) years. Of the respondents, 78% were parents and 13% were spouses;
60% were married, 18% were divorced and 14.5% were widowed. The median age of
affected individuals was 38.65 (s.d.=12.24) years and their first symptom
occurred at an average age of 22.4 years. The sample is described in detail
elsewhere (Lauber et al,
2001).
We asked the following questions:
- Would you have made use of an out-patient service for early detection if
you had had the opportunity? — Possible answers were ‘yes,
certainly’, ‘yes, probably’, ‘uncertain’ or
‘not at all’.
- Would you have preferred to be informed earlier about the diagnosis of the
illness from which your relative suffers? — Possible answers were
‘yes, certainly’, ‘yes, probably’,
‘uncertain’ or ‘not at all’.
- Would an earlier diagnosis have changed anything for your relative? —
Possible answers were ‘yes, much’, ‘yes, somewhat’,
‘not much’ or ‘nothing’.
- Which consequences would you have expected if the diagnosis had been
established earlier? — Every appropriate answer out of a list could be
chosen (see Table 2).
View this table:
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Table 2. ‘Which consequences would you have expected for you and your
affected if the diagnosis had been established earlier?’ (every
appropriate answer out of a list could be chosen; n=200)
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Results
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Table 1 shows whether the
relatives would have visited the out-patient service for early detection if
they had had the opportunity: 123 (61.5%) would have done so
‘certainly’ and another 49 (24.5%) ‘probably’. Of the
relatives of psychotic patients who answered the question of whether they
would have preferred to be informed earlier about the diagnosis of psychosis,
113 (56.5%) replied ‘yes, certainly’ and 45 (22.5%) replied
‘yes, probably’.
Fifty-nine relatives (29.5%) thought that an earlier diagnosis would have
changed ‘much’ for their affected relative, and another 63 (31.5%)
considered that it would have changed ‘somewhat’. For 26 (13%),
‘not much’ would have changed and for 6 (3%),
‘nothing’ would have changed.
Possible consequences of an earlier diagnosis are listed in
Table 2. For 78.5%
(n=157) of the interviewees, an earlier diagnosis would have enabled
them and their affected relative to face the problems associated with the
illness sooner. For 136 (68%), a more appropriate behaviour towards the
relative would have been possible. A total of 134 (67%) mentioned that earlier
contact with other relatives would have been possible. Another 134 (67%) of
the relatives thought that their affected relative would have been treated
earlier, 112 (56%) assumed that they would have dealt with feelings of guilt
and 91 (56%) thought that an earlier diagnosis could have prevented both the
affected individual and other relatives from suffering. Because multiple
answers were possible, the sum of the percentages is more than 100%.
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Discussion
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This is, to the best of our knowledge, the first study analysing attitudes
of relatives of patients with psychosis towards specialised services for early
detection of psychosis and the consequences of an early diagnosis for carers
and the affected individual. To summarise, more than half of the interviewees
wanted to be informed earlier about the diagnosis. A third assumed that an
earlier diagnosis would have changed much and another one-third supposed a
change to some extent. ‘Facing the problems associated with the illness
earlier’ was the most commonly-mentioned consequence of an earlier
diagnosis. Moreover, more appropriate behaviour towards the affected
individual, earlier contact with other relatives and earlier treatment would
have been possible if the illness had been diagnosed earlier. Most of the
interviewees would have visited an out-patient service for early detection of
psychosis if they had had the opportunity.
Limitations of this analysis
Limitations of our study arose from the problems that research on public
attitude in general deals with, such as the socially ‘desired’
answers. Our study asked for attitudes. Thus, we can only speculate on how the
respective behaviour would have been. The response rate was low, but analogous
to other studies (e.g. Semele &
Manning, 2000). This may have led to a selection bias towards more
communicative relatives. However, our sample is comparable with other studies
(Magliano et al, 1998; Bengtsson-Tops & Hansson,
2001). Moreover, the sample just includes participants of a
self-help group, thus, focusing on the most heavily-burdened care-giver
(Winefield & Harvey, 1993). Finally, the time between the first symptoms of the illness and our data
assessment was often more than 16 years. Most questions, however, focused on
an assumed behaviour at the beginning of the illness. The time difference may
have led to a recall bias.
Differences in mental health services between the UK and Switzerland and
their possible influence on the results of this analysis must be discussed. In
contrast to the UK, two-thirds of Swiss psychiatrists are engaged in private
practice (Guimón et al,
2000). Most of them are psychoanalytically oriented and do not
participate in the health care of the severely mentally ill. The latter were
treated mainly within public out-patient services comparable with the mental
health NHS trusts. A difference between the two countries, however, is the
allocation of financial resources, which is not as restricted in Switzerland
as it is in the UK. In Switzerland, for example, buildings and equipment are
better maintained and the staff—patient ratio is higher. Thus, practical
differences between the two mental health systems could have influenced the
results of this study.
Relatives of patients with psychosis are favourable to early
diagnosis
The favourable answers concerning early diagnosis of psychosis and the
visit in a respective out-patient service are surprising and in contrast to
the often-expressed opinion that relatives warn against early detection and
diagnosis. The findings support the need to tell patients their diagnosis as
early as possible (Clafferty et
al, 2001). Our results are noteworthy because relatives who
are organised in a self-help group are likely to have a critical attitude to
psychiatry (Winefield & Harvey,
1993). But these results are in line with our previous findings
that relatives have a positive attitude to psychiatric research in general,
and particularly to research with respect to early detection of psychosis
(Lauber et al,
2001).
Consequences of early diagnosis
Our findings are unexpected, because early diagnosis has immediate and
far-reaching consequences concerning social life, work or education and
relationships for both the affected individual and their relatives
(Magliano et al,
1998). The latter, however, have a pragmatic view about the
importance of an earlier diagnosis for the affected individual and for
themselves. Only one-third assume that much would have changed for the
affected individual. Relatives focus instead on disburdening activities, such
as facing the problems related to the illness or contacting other persons in
the same situation earlier.
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Implications of these results
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Early detection and intervention are intended to diminish the suffering of
both the affected individual and their carers
(Harvey et al, 2001).
Being mostly favourable to early diagnosis and detection, relatives are
supporting partners for psychiatrists in convincing hesitant or ambivalent
patients for diagnostic procedures and treatment. Psychiatrists, therefore,
should involve carers in the care planning. Moreover, relatives give us useful
clues with respect to the possible consequences of early diagnosis.
Professionals must consider the carers' suggestions and refer relatives of
newly-diagnosed patients with psychosis to supporting organisations such as
self-help groups. An excellent example of carers' willingness and ability to
cooperate is the recently launched website ‘Rethink’ of the
National Schizophrenia Fellowship
(www.nsf.org.uk)
that provides carers, affected individuals and professionals with helpful and
balanced information (this, however, is seen from a continental
perspective).
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Acknowledgments
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We thank the relatives for their participation in this study and Mrs Heidi
Schmid Diebold for data collection and statistical analyses. We thank also the
unknown reviewer for her/his helpful suggestions for improvement of our
manuscript, especially with respect to UK characteristics.
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Abstract
Introduction
