Department of Adult Clinical Psychology, Ealing Locality, John Connelly Wing, West London Mental Health Trust
Department of Psychology, Institute of Psychiatry, Kings College London
Social and Community Psychiatry, Department of Mental Health Sciences, Royal Free and University College Medical School, London, UK
Correspondence: Dr E.Kuipers, Department of Psychology, PO Box 77, Institute of Psychiatry, Kings College, London SE5 8AF, UK
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ABSTRACT |
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Aims To investigate the utility of a carer appraisal model of EE in first-episode psychosis.
Method We compared high- and low-EE carers of people who had first-episode psychosis (n=46).
Results High EE in carers was associated with higher avoidant coping, higher subjective burden and lower perceived patient interpersonal functioning. Patient illness factors and carers distress levels were not associated with EE.
Conclusions Even at the first episode, carers psychological appraisal, not patient illness factors, is influential in determining high EE. Carers appraisal of their situation should be a primary target to lower or prevent high EE in early intervention for psychosis.
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INTRODUCTION |
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METHOD |
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Assessments
Patients
A standard form was used to collect information on socio-demographic and
illness-related characteristics from the patient. The data recorded included
age, gender, ethnicity, age of onset and illness length. SCAN 1.1
(World Health Organization,
1992) was used to assess patient psychopathology. Illness onset
was defined as the first emergence of delusions, hallucinations or formal
thought disorder as defined by SCAN. Illness length was judged by interviewing
the patient, cross-referencing with case notes and checking information with
the carer. It was defined as the time since onset, that is, the interval
between the first SCAN-defined positive psychotic symptom (delusion,
hallucination or formal thought disorder) and the SCAN patient interview. The
computer program CATEGO5 was used to process data entered from the SCAN
schedules. The program provides diagnoses, a total score for psychopathology,
scores for neurotic, depressive, manic and psychotic symptom dimensions and
scores for 70 individual symptom groups.
Carers
A standard form was used to collect information on carers
socio-demographic characteristics. The data recorded included age, gender,
ethnicity, relationship to the patient, whether the carer lived with the
patient and the number of hours in face-to-face contact. The Camberwell Family
Interview (CFI; Vaughn & Leff,
1976) was used to assess EE. Relatives were rated as high on EE if
they made six or more critical comments, revealed any hostility or were rated
3 or more on emotional overinvolvement. D.R. was trained in the assessment of
EE by Dr Christine Vaughn, reaching the acceptable reliability levels of
critical comments, 0.92; hostility, 0.80; emotional overinvolvement, 1.00;
overall EE, 0.82 (by the coefficient).
The Experience of Caregiving Inventory (ECI; Szmukler et al, 1996) is a 66-item instrument assessing the subjective experience of caregiving in eight areas covering difficult behaviour, negative symptoms, stigma, problems with services, effects on the family, need to back up, dependency and loss, and two areas of positive experiences of caring (positive personal experiences and good aspects of the relationship). The instrument measures how often carers have thought about each issue over the last month before interview, on a scale of 0=never, 1=rarely, 2=sometimes, 3=often, 4=nearly always.
The Cope instrument (Carver et al, 1989; Carver & Scheier, 1994) is a multidimensional inventory to assess the different ways in which people respond to stress in terms of different coping styles. The instrument was used to measure how often carers used each of the coping styles when they experienced stress and problems related to the patient, on a scale of 1 never, 2=rarely, 3=sometimes, 4=a lot. The total score for each scale is found by adding the items together. In the present study, the avoidant coping sub-scales used were behavioural disengagement, mental disengagement, alcohol/drug use and denial. The instrument can be used in a shorter form (Carver & Scheier, 1994) and the present study used two questions per scale instead of four.
The Social Functioning Scale (SFS; Birchwood et al, 1990) measures areas of functioning that are crucial for maintaining individuals with schizophrenia in the community. Seven areas are covered by the SFS; employment, social withdrawal, pro-social activities, recreation, interpersonal functioning, perceived independence competence and perceived independence performance. A total score is calculated by adding all the sub-scales.
The General Health Questionnaire (GHQ; Goldberg & Williams, 1988) 28-item version was scored in the current study as 0, 1, 2, 3; it was also scored as 0, 0, 1, 1 to provide the definition of a case of 5 or more. It has a total score and four subscales of somatic symptoms, anxiety and insomnia, social dysfunction and severe depression. The Beck Depression Inventory (BDI; Beck & Steer, 1987) is a 21-item self-report instrument designed to assess the severity of depression. It has a total score and four levels of severity (none, mild, moderate, severe).
Analysis
The main outcome variable was EE, dichotomised as described above.
Univariate analysis involved the following tests: t-test,
MannWhitney U, 2 and MantelHaenszel.
The CFI interrater reliability used the intraclass correlation coefficient for
ordinal EE ratings and the
statistic for the dichotomised
classification. Multivariate analysis consisted of logistic regressions used
in a forward stepwise manner. Explanatory variables were entered in blocks in
a hierarchical manner to increase the simplicity and generalisability of the
model. Total questionnaire scores were entered before sub-scale totals.
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RESULTS |
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Carer characteristics
Forty-six carers participated and their mean age was 47.2 years (s.d. 14.4,
median=49.0, range 19.072.0): 33 (72%) were female and 26 (57%) were
White. Twenty-eight (61%) were parents, nine (20%) were partners, two (4%)
were siblings, four (9%) were other relatives and three (7%) were friends.
Carers face-to-face contact with the patient lasted a mean of 27.5 h
per week (s.d. 14.4). The EE interviews took place on average 1 week after the
patient assessment. The median length of time between the first positive
symptom and the EE assessment was 19 weeks (mean=44 weeks). The carers of
three patients who had consented refused to take part themselves (refusal
rate=6%). Carers who refused and consented were similar, except that the three
carers who refused were all Black, compared with only a third of the
consenting group.
Quality of the CFI
Interrater reliability between the first and second authors (D.R. and E.K.)
was checked from nine randomly selected audiotaped interviews. High intraclass
correlations were obtained for all three key EE scales tested as continuous
variables: critical comments, 0.88; hostility, 0.79 (hostility coded as 0=0,
1=1, 2=1, 3=2); emotional overinvolvement, 0.74. Moderate scores were
found for the dichotomised scales of overall EE (0.55).
Levels of EE
Nearly half (44%) of the carers were rated as high on EE, with one-third
(33%) showing high critical comments, nearly one-third (30%) hostile and just
over one-fifth (22%) displaying high emotional overinvolvement. The mean
number of critical comments for the sample was 6.7 (s.d.=8.3, range
032), the mean hostility score was 0.6 (s.d.=1.1) and the mean
emotional overinvolvement score was 1.7 (s.d.=1.2).
Expressed emotion and patient illness characteristics
There was no association of high EE with diagnosis, illness length, age of
onset, total severity of symptoms or the severity of symptom dimensions
(neurotic, depressive, manic and psychotic) or SCAN symptom type.
Expressed emotion and carer appraisal
Both total scores and sub-scales of carer predictor variables were tested
for their association with EE, because research in the later course of
psychosis has found that different facets of carer appraisal are
differentially associated with EE
(Barrowclough & Tarrier,
1990; Smith et al,
1993).
Avoidant coping. Table 1 shows that the avoidant coping total score and high EE were associated at the 1% level. Of the individual avoidant coping styles, all except denial were significantly associated.
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Subjective burden, perceived social functioning and EE. Table 2 shows that total subjective burden was significantly greater in the high EE group. Of the individual components of the burden measure, high EE was significantly associated with difficult behaviour (P50.01) and loss (P50.05); there was a trend towards associations with dependence (P=0.07) and problems with services (P=0.07), but no association with perceived negative symptoms, stigma, effect on the family, or need to back up.
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Overall, high EE was not associated with total patient social functioning as rated by the carer. However, each of the seven sub-scales of perceived social functioning was also tested against EE, given that some areas of social functioning have been found previously to be related to EE (Barrowclough & Tarrier, 1990; Smith et al, 1993). Such information may also contribute to theoretical models of EE and guide clinical intervention. Areas of social functioning have not been examined previously in relation to EE at the first episode of psychosis. Six out of the seven sub-scales were in the expected direction, but only interpersonal functioning was significantly associated with high EE (P50.01).
Expressed emotion and distress in carers. High EE was not associated with carers BDI total score, GHQ total score, GHQ case status or the four GHQ sub-scales.
Multivariate analysis
A logistic regression was carried out to establish the strongest predictor
of high EE. Avoidant coping was the best independent predictor (odds
ratio=1.2, likelihood ratio=10.9, P=0.005). The variables entered
into the logistic regression were those that were significant at the 5% level
in the univariate analysis, namely burden total, loss, difficult behaviour,
interpersonal social functioning, avoidant coping total, behavioural
disengagement, mental disengagement and alcohol/drug disengagement. In the
stepwise forward regression, avoidant coping rendered the social functioning
and the burden variables redundant in terms of predicting EE status (this was
also the case when the variables were all entered as a post hoc
check, with a non-stepwise method of entry).
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DISCUSSION |
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Are patient illness-related characteristics associated with EE at first-episode psychosis?
There was no association between EE and illness-related factors (symptom
type and severity, age of onset, illness length and diagnosis). The absence of
a link between EE and diagnosis agrees with a previous early-phase EE study
(Linszen et al,
1997). As noted by Heikkila et al
(2002), links between EE and
symptom attributes have received only occasional support in the
literature.
Is avoidant coping in carers linked to EE in first-episode psychosis?
Our hypothesis that more avoidant coping would be reported by high-EE
carers early in the course of psychosis was supported, just as in the later
course of psychosis (Scazufca &
Kuipers, 1999). Indeed, the multivariate analysis showed that
avoidant coping was the strongest predictor of EE. The avoidant coping link
with EE is consistent with the perception of high-EE carers that their
situational stress exceeds their capacity to deal with it. This supports the
view that maladaptive cognitive appraisals may maintain a high EE response
(Barrowclough & Parle,
1997), and perhaps even that it is has a role in causing it. It
may also be a way of dealing with the loss
(Patterson et al,
2000).
Is the subjective burden of carers linked to EE at first-episode psychosis?
In line with our hypothesis, high-EE carers had significantly higher
subjective burden scores, just as they do later in the course of psychosis
(Smith et al, 1993;
Scazufca & Kuipers, 1996). High-EE behaviour may therefore be a way of coping with the burden from the
start of caring.
Are carers perceptions of the patients social functioning linked to EE at first-episode psychosis?
Our hypothesis that first-episode high-EE carers would perceive more
overall social functioning deficits in patients was not supported. This
differs from the associations seen later in the course of psychosis
(Barrowclough & Tarrier,
1990; Smith et al,
1993; Scazufca & Kuipers,
1996). However, a perception of impaired interpersonal functioning
was clearly associated with high EE. Smith et al
(1993) also found that the SFS
scores were lower in their high EE group. The association between EE and
social functioning may be stable across illness phases but the specific areas
of associated social functioning may evolve over the course of the
disorder.
Is EE at first-episode psychosis linked to increased levels of distress in carers?
Our hypothesis that first-episode high-EE carers would be more generally
distressed than low-EE carers was not supported and neither was carer
depression linked to EE status. These findings are in line with some other
studies (Barrowclough et al,
1996) but not all (Shimodera
et al, 2000). It is possible that distress has not had
time to generalise in high-EE carers at this early stage.
Implications for a theoretical model of EE
High-EE carers appear to perceive their caring situation as more stressful
than low-EE carers, although perhaps not their life as a whole. They typically
experience considerable subjective burden, perceive social problems in the
patient and try to avoid the perceived stressful situation that they are
facing. Folkman & Lazarus
(1985) have distinguished
between primary and secondary appraisal. The latter is essentially the process
of coping. In these relatives, the core appraisal is the loss of goals, some
of which may have been vicarious, and some personal. Nevertheless, the loss is
made more poignant because it is incomplete: the person involved in the loss
is still present and their problems demand to be coped with in ways that may
exceed the capacity of the carer. Carer coping attempts may then escalate into
high-EE behaviour: criticism, rejection (avoidance), overprotection, or all
three. Given that the median illness length in the present study was only 19
weeks, the appraisals leading to high EE may develop quite quickly or perhaps
even arise from responses to the patients behaviour during the
premorbid period (Gleeson et al,
1999).
Different components of high EE are often present in the same carer at the same time, suggesting that a common core appraisal might drive high EE. This could be conceptualised as a catastrophic appraisal of the role of caring for the patient. The precise cognitive content of any core appraisal remains uncertain at this time. Barrowclough & Parle (1997) favour threat as the basis of the appraisal, which in Folkman & Lazaruss model can denote future loss. Patterson et al (2000), however, emphasise loss that is perceived to have already taken place: high-EE behaviour is motivated by the high-EE carers increased need to cope with loss. Emotional overinvolvement might be an attempt to restore the patient, whereas criticism might function by devaluing what has been lost.
The present study had insufficient power to differentiate between these hypotheses, but did confirm that loss is linked to EE at the first episode. Our results also suggest that the classes of appraisal variable associated with EE (e.g. burden, coping and social functioning) may remain the same across illness phases. However, the specific components may change in time. Finally, because primary appraisals are dynamic, they may respond both to the social environment and to perceptions of coping options. Thus, an appraisal model is able to account for the well-established instability of EE at the first episode (Patterson et al, 2000) but appraisal and EE levels may both change in response to the further experience of caring.
Our study shows that from the start of caring high-EE carers appraise their caring situation as more stressful than low-EE carers. Why this should be so is an important question. The greater use of avoidant coping implies that it might derive from inadequate coping skills (Barrowclough et al, 1996; Scazufca & Kuipers, 1999). There are many hints in the literature about other factors likely to contribute to appraisal. At an individual carer level, these include a perception that patients unwanted behaviour is done on purpose (Hooley & Campbell, 2002); a more negative carer self-concept (Hooley & Hillier, 2000); and less empathy (Giron & Gomez-Beneyto, 1998). At a situational level, factors contributing to stressful appraisal might include being in a smaller family (Leff et al, 1990) and gender role-based notions of caring (Bentsen et al, 1996). Some patient behaviours (e.g. negative symptoms) may also more easily lend themselves to misinterpretation by carers.
Potential for therapeutic intervention
The main clinical implication of the present study is the importance of
targeting carers appraisal, particularly at the first episode. Our
results confirm the importance of lowering burden, reducing avoidant coping
and improving carers understanding of patients social behaviour.
Further, the results identify particular areas of burden (especially difficult
behaviours), social functioning (especially interpersonal functioning) and
types of avoidant coping (especially behavioural disengagement) that may be
particularly important in reducing early high EE. Individual
cognitivebehavioural therapy, as is now commonly used successfully for
a wide range of emotional disorders, might also be effective in reducing high
EE in carers.
In first-episode services for psychosis, many patients may be in close contact with carers, some of whom will already be finding their caring role difficult. It would be helpful in the longer term if services were able to consider the impact of care in first episodes. Offering selected families appropriate support, even if difficult to implement in practice, would probably reduce both carer morbidity and patient relapse in the long term. As such, it may become an important component of early intervention services.
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Clinical Implications and Limitations |
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LIMITATIONS
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ACKNOWLEDGMENTS |
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REFERENCES |
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Received for publication August 5, 2003. Revision received December 12, 2003. Accepted for publication January 6, 2004.
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