Section of Cognitive Psychopharmacology, Department of Psychiatry, Institute of Psychiatry, London
Department of Clinical Psychology, Institute of Psychiatry, London
Section of Cognitive Psychopharmacology, Department of Psychiatry, Institute of Psychiatry, London
Correspondence: Dr Tonmoy Sharma, Section of Cognitive Psychopharmacology, Institute of Psychiatry, De Crespigny Park, London SE5 8AF, UK. Tel: +44(0)20 7848 0342; Fax: +44(0)20 7848 0646; e-mail: t.sharma{at}iop.kcl.ac.uk
Declaration of interest Research supported by Grosvenor House Group Estates, Eastwood Care Homes plc and Psychmed Ltd.
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ABSTRACT |
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Aims To investigate dimensions of caregiving and morbidity in caregivers of people with first-episode psychosis.
Method Caregivers of 40 people with first-episode psychosis were interviewed at home about their experience of caregiving, coping strategies and distress.
Results Caregivers used emotional and practical strategies to cope with participants' negative symptoms and difficult behaviours and experienced more worry about these problems. They increased supervision when the participants displayed difficult behaviours. Twelve per cent of caregivers were suffering from psychiatric morbidity as defined by the General Health Questionnaire. Those living with the participant had more frequent visits to their general practitioner.
Conclusions At first-episode psychosis, caregivers are already having to cope with a wide range of problems and are developing coping strategies.
Caregivers worried most about difficult behaviours and negative symptoms in participants.
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INTRODUCTION |
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METHOD |
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Involvement Evaluation Questionnaire (IEQ)
(Schene & van Wijngaarden,
1992)
This is a 77-item self-report questionnaire that provides socio-demographic
information about the caregiver, details about their physical and
psychological well-being and information about the impact of the participants'
problems with finances. The main aspects are worrying, urging, tension and
amount of supervision. Tension involves a strained interpersonal atmosphere
between the caregiver and their relative: quarrels, annoyances and occasional
threats. Worrying covers painful interpersonal cognition, such as concern
about the participant's safety, general health and the kind of help he or she
is receiving. Supervision involves caregiver tasks such as maintaining the
participant's medication, checking the amount of sleep and monitoring
dangerous behaviour. Urging relates to activation and motivation of the
participant to take care of himself or herself, to eat enough and to undertake
activities.
Experience of Caregiving Inventory (ECI)
(Szmukler et al, 1996)
This is a 66-item self-report questionnaire which measures caregivers'
appraisal of the caregiving experience. Items are scored on a 5-point Likert
scale. The main measures are negative and positive aspects of caregiving.
Negative aspects (caregiver distress) are negative symptoms, stigma, effects
on family, the need to provide backup, dependency, problems with services,
difficult behaviours and loss. The positive aspects (caregiver rewards) are
positive personal experiences and good aspects of the relationship.
Assessments
Participants were assessed using the Structured Clinical Interview for
DSM-IV (SCID) (Michael et al,
1996) to generate DSM-IV diagnoses. Information was collected on
their socio-demographic characteristics, current symptomatology, age of onset
and duration of illness. Symptomatology was assessed with the Positive and
Negative Syndrome Scale (PANSS) (Kay et
al, 1987). Data on social class and occupational status were
collected using the UK Standard Occupational Classification
(Office of Population Censuses and
Surveys, 1990).
Caregivers were interviewed by L.T. for approximately 2 hours in their homes. The following assessments were used.
Ways of Coping (WOC) (MacCarthy et
al, 1989)
This is a self-report check-list, which provides information about coping
style. Respondents are asked to rate how frequently they have used each coping
behaviour during the preceding 4 weeks. Items are scored on a 5-point Likert
scale. This instrument measures four coping styles, including practical,
emotional, detachment and spiritual.
General Health Questionnaire (GHQ-12)
(Goldberg & Hillier,
1979)
This is a self-report screening instrument for psychological morbidity.
Respondents are asked to rate on a 4-point Likert scale the frequency with
which they have experienced 12 indicators of psychological morbidity.
This study reports the results of the cross-sectional baseline data of this sample of participants and their caregivers.
Statistical analysis
Statistical analysis was carried out using SPSS version 7.5 for Windows and
STATA version 5 for Windows. Independent t-tests were used to compare
quantitative variables. Correlations between the participant and the caregiver
data were computed using Pearson's r. The level of statistical
significance was set at 0.01.
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RESULTS |
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For caregivers (n=40), 57.5% were female; their mean age was 49.04 years (s.d.=14.96; range 16-68); 70% were parents; 17.5% were siblings; 5% were partners; 7.5% had another relationship (grandparent, aunt/uncle) with the participant. Of the caregivers 12.5% were professionals (doctors/lawyers); 22.5% were from the intermediate social class (manager/teacher); 40% were from the skilled manual class (shop assistant/bus driver/carpenter); 10% were from the semi-skilled manual class (agricultural/bus conductor); 15% were from the unskilled manual class (labourer/cleaner). Sixty per cent of caregivers were living with the participant in the same household. Fifty per cent were married, 27.5% were single, 15% had a long-term partnership, 2.5% were divorced and 5% were widowed. A university education had been experienced by 12.5% of caregivers, 12.5% had completed A levels, 27.5% had completed CSE/GCE O levels while 47.5% had no qualifications. Caregiver response rate was 89% (40/45) of possible and available caregivers.
The participant response rate was 80%. Of the 20% of participants (n=10) who did not respond, five did not want their caregivers to be contacted, one did not have an identified caregiver, three did not have caregivers in the UK, and one was lost to follow-up.
Contact
Despite our definition of reasonable contact as being twice a week, we
found that a few caregivers spent less than this time with the participants.
When these very low-contact caregivers (n=2) were omitted from the
analyses, no substantial differences were found in the following results so
the full analyses are presented (n=40). However, the majority of
caregivers - 58% (n=24) - had more than 32 hours direct contact with
the participant each week (including telephone calls), 10% (n=4) had
17-32 hours contact each week, 4% (n=1) had 9-16 hours each week, 8%
(n=3) had 5-8 hours each week, 12.5% (n=6) had 1-4 hours
each week and 7.5% (n=2) had less than 1 hour of contact each
week.
Caregiving and distress
Ways of coping (WOC)
Negative symptoms and difficult behaviours in the participants were
positively correlated with the caregivers' emotional and practical coping
styles (negative symptoms: r=0.47, P=0.002 and
r=0.36, P=0.02, respectively; difficult behaviours:
r=0.56, P<0.001 and r=0.41, P=0.009,
respectively). Difficult behaviours in participants were moodiness,
unpredictably, irritability, lack of consideration, behaving in a restless
way, suspiciousness, embarrassing appearances and strange behaviour. There was
no correlation between participants' negative symptoms or behavioural problems
with caregivers' spiritual coping style (Pearson
r=0.09; P=0.54).
GHQ-12 scores
Twelve per cent of caregivers exhibited psychiatric morbidity (psychiatric
caseness) as defined by the GHQ-12 among our caregiver population. Caregivers
from the professional social class had significantly higher GHQ total scores
compared with skilled manual caregivers (mean=23.83 v. 20.81;
P=0.04) while divorced caregivers had high GHQ total scores compared
with married caregivers (mean 30 v. 21.4; P=0.01).
Involvement Evaluation Questionnaire (IEQ) scale
We examined the relationship between IEQ outcomes (supervision, worrying,
tension) and participants' scores on negative symptoms, difficult behaviours,
effects of the illness on the family, loss and the need to back the
participant (difficulty in looking after money, supporting the participant,
effects on caregivers' finances, backing-up the participant when they run out
of money). Caregivers experienced a high degree of worrying when their
relatives displayed difficult behaviours (r=0.55;
P<0.001). Caregivers were worried about the participant's lost
opportunities, their attempts to harm themselves, the risk of committing
suicide and whether caregivers themselves had done something to make the
participant ill. These factors were significantly correlated with the
caregivers' worry (r=0.47; P=0.002). Negative symptoms in
the participants were also correlated with worrying by caregivers
(r=0.32; P=0.04). Caregivers increased supervision when
their ill relatives displayed difficult behaviours (r= 0.52;
P=0.001) and they were worried about the effects of the participant's
illness on the family, including how his or her illness affected special
family events, the illness causing a family breakup, effects of the illness on
children in the family, family members leaving because of the illness and how
the participant got on with other family members (r=0.39;
P=0.01). Tension was positively correlated with loss of
opportunities (r=0.34; P=0.01). There was no correlation
between the caregivers' tension status and the participants' difficult
behaviours or negative symptoms. There was a positive significant correlation
between need to back-up and supervision (r=0.35;
P=0.02) (see Table
1).
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We also investigated the relationship between IEQ outcomes and coping strategies and found that supervision status correlated with emotional coping strategy (r=0.55; P<0.001). Caregivers who were living with participants had more frequent visits to their general practitioner (GP) compared with caregivers who were not living with them: the difference was statistically significant (mean scores: 1.87 v. 1.58; P=0.03). When asked whether the relationship between the participant and their caregiver had changed since the onset of the illness, 40% of caregivers reported that there had not been any change in the quality of the relationship, 45% reported moderate changes and 15% stated that there had been a marked change in their relationship.
Experience of Caregiving Inventory (ECI) scores
Women caregivers had higher scores for effects of illness on
family effects of the illness on children, how the illness
affects special family events, the illness causing family breakup, the level
of understanding of the illness in family members (mean: 10.52 v.
9.58; P=0.03). We investigated the association between the
stigma of having a mentally ill participant in the family and
family relationship. Data on stigma (using the ECI scale) were collected by
computing the following items: covering up the illness, feeling unable to tell
anyone about the illness, feeling unable to have visitors at home, the stigma
of having a mentally ill relative and how to explain his or her illness to
others. We found that parental caregivers had higher mean scores on stigma
than sibling caregivers (mean: 7.78 v. 3.42; P=0.01). No
other significant relationships were found. Caregivers mainly used the
spiritual coping strategy to cope with stigma (r=0.37;
P=0.01).
We next looked at the effect of ECI subscores (dependency, loss, effects on family) on caregivers' coping strategies. Dependency was computed with the following items: the participant's dependence on the caregiver; helping the participant to fill the day; whether a participant is always at the back of the caregiver's mind; feelings of being unable to leave the participant at home alone; feelings of being unable to do things. There was a highly significant positive correlation between dependency and emotional coping strategy (r=0.44; P=0.004). We found a significant positive correlation between effects of illness on family and emotional coping (r=0.43; P=0.005). Caregivers also tended to use practical coping strategies to cope with the effects of illness on the family (r=0.35; P=0.02). We found a highly significant positive correlation between negative aspects of caregiving total scores (caregiver distress) and emotional coping (r=0.47; P=0.002). There was a further positive correlation between practical coping and the negative aspects of caregiving total scores (r=0.35; P=0.02): both sorts of coping were related to distress.
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DISCUSSION |
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Caregiver distress
Twelve per cent of caregivers exhibited psychiatric morbidity in our study.
This is comparable to the percentage in the general population. Caregivers in
the professional social class had higher total GHQ scores than those in the
skilled manual class. There was no significant difference between caregivers
in the professional class compared with those in the skilled manual class with
respect to hours of contact or participants' living status. Fifty-eight per
cent of caregivers had more than 32 hours of direct contact per week with the
participant in our sample. In a recent study conducted among people with
long-term schizophrenia, Schene et al
(1998) found that carers had
very much less direct contact with the person later in the course of illness.
It is not clear whether higher levels of contact will contribute to feelings
of burden and levels of expressed emotion (both found to be related) by the
time carers are more experienced (Scazufca
& Kuipers, 1997). Although not measured in this study, some
evidence exists that even at the first episode, burden and expressed emotion
are already established for some caregivers
(Kuipers & Raune, 2000).
Caregivers experienced a high degree of worrying when the participants
displayed difficult behaviour and negative symptoms. Those who were living
with the participants had more frequent GP visits. Schene et al
(1998) reported similar
findings among caregivers of those experiencing long-term schizophrenia in
that caregivers who were more distressed consulted their GP more
frequently.
Methodological issues
Our study has limitations. First, even though our caregiver sample was
collected from a first-episode psychosis study from a defined catchment area,
we were unable to include all those experiencing a first-episode of psychosis
within the catchment area because they did not all meet our inclusion
criteria. In addition, some of the caregivers from our sample could not be
interviewed. Second, this study was cross-sectional and focused on the
primary caregiver of people with a first episode of psychosis. A
third limitation relates to the definition of caregiver contact. This is known
to be difficult to quantify accurately (e.g.
Tucker et al, 1998).
We found that two caregivers spent less than 1 hour each week with the
participant. Although this did not change our results, it remains problematic
that in fact some caregivers spent very little time with the participant and
would not have been included in other studies, despite the fact that they may
still have found the role burdensome.
The nature of the burden of the caregiver is likely to change over time as the participant progresses from his or her first episode of psychosis. A future study aims both to follow up and include multiple caregivers of people with first-episode psychosis and will thus overcome these potential problems. In addition, the first study (which includes participants and their caregivers from both inner and outer areas of London) should allow us to examine the relationship between the socio-demographic profile of the catchment area and the caregiver burden over time. All of these issues suggest that the sample may not be totally representative and results may not be generalisable.
Future interventions
Interventions might be planned on the basis of the existing coping
strategies, the interpersonal skills of each caregiver and culturally
sensitive family interventions. Our findings suggest that increasing the range
of coping strategies among caregivers as well as focusing on improving
participants' negative symptoms and associated behavioural problems might help
to reduce caregivers' distress. Many caregivers believed that negative
symptoms were under the participant's control. This is consistent with
previous literature (e.g. Kuipers et
al, 1992). There is also evidence that caregiver coping will
be strongly influenced by their appraisal of the participant's symptoms
(rather than by the symptoms per se)
(Barrowclough & Parle,
1997; Scazufca & Kuipers,
1996). These findings suggest that early intervention for
caregivers could be based on the same kind of issues found helpful in the
family intervention studies, with particular reference to identifying and
modifying burdensome symptoms and their appraisal by caregivers. It is also
clear that caregivers are often confused by symptoms and distressed by the
levels of supervision required of them. Presumably this can lead to reduced
levels of contact over time. At first episode, caregivers have clear needs of
their own for information, support and help with coping with an unfamiliar
range of problems. Services should be aware of these needs, as suggested by
the National Service Framework (Department
of Health, 1999). At first-episode psychosis, both the individuals
experiencing this and caregivers are having to deal with new and distressing
difficulties. Interventions which include all concerned family members seem
likely to begin to ease these problems.
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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 October 20, 1999. Revision received May 2, 2000. Accepted for publication May 9, 2000.