Subjects

Fifty participants were recruited from the Bethlem & Maudsley NHS Trust, the West Kent Health Authority, the Merton, Sutton and Wandsworth Health Authority and the Redbridge and Waltham Forest Health Authority as part of a longitudinal study of first-episode psychosis. Participants were between 18 and 45 years of age and fulfilled criteria for schizophrenia and associated disorders according to DSM-IV (American Psychiatric Association, 1994). All participants were experiencing their first episode of psychosis of less than 24 months' duration and with no more than 12 weeks' exposure to neuroleptics. We excluded those with organic mental disorders as well as those with a primary diagnosis of alcohol or drug misuse. For each participant recruited into the study, a main caregiver was identified by that person as the caregiver who was most available (contact) and most supportive either emotionally or financially. To be eligible, caregivers were required to be in ‘reasonable contact’ with the participant and over 16 years of age. Reasonable contact was defined as face-to-face contact at least twice per week. The study was approved by the Maudsley and Bethlem Royal Hospital ethical committee. All participants and caregivers gave written informed consent after the study had been fully explained to them.

Assessments

Participants were assessed using the Structured Clinical Interview for DSM-IV (SCID) (Reference Michael, Gibbon and SpitzerMichael 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) (Reference Kay, Fishbone and OlperKay 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.

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.

Socio-demographic characteristics of caregivers and participants

Eighty per cent of participants had a caregiver and gave consent for us to interview them; this was the sample used in our study (n=40/50). The mean age of the 40 participants was 25 years (s.d.=5.57; range 18-39). The mean duration of the illness was 44.43 weeks (s.d.=60.41).

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

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).

Table 1 Correlation between Involvement Evaluation Questionnaire outcomes and the person's characteristics

	Worrying	Tension	Supervision
Difficult behaviours	r *=0.55	r=0.21	r=0.52
	P<0.001	P=0.19	P=0.001
Negative symptoms	r=0.324	r=0.07	r=0.21
	P=0.04	P=0.688	P=0.207
Need to back-up	r=0.29	r=-0.14	r=0.34
	P=0.06	P=0.36	P=0.02
Illness effects on family	r=0.39	-	-
	P=0.01
Loss	r=0.47	r=0.33	r=0.32
	P=0.002	P=0.04	P=0.04

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.

Coping at first episode of psychosis

The caregivers interviewed in this study were confronting the emotional upheaval and practical challenges visited on the family of a person with a first episode of psychosis. The coping styles recorded in this article represent a cross-section of family coping with first-episode psychosis. It is not known in what way or to what extent caregivers' coping styles change with time over the course of psychotic illness (Reference Birchwood and CochraneBirchwood & Cochrane, 1990). Most caregivers in our study used both ‘practical’ and ‘emotional’ coping strategies rather than ‘spiritual’ (faith) strategies. This contrasts with the finding of spiritual coping as being the predominant strategy for caregivers in the Mediterranean countries (Reference Magliano, Vetro and MajMagliano et al, 1998). Caregivers in our study used the spiritual strategy to cope only with the stigma of having a mentally ill relative. On this basis it might be helpful to advise caregivers to think about adopting a range of coping strategies as an initial coping effort.

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 (Reference Schene, van Wijngaarden and Koeter1998) 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 (Reference Scazufca and KuipersScazufca & 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 (Reference Kuipers, Raune, Birchwood and FowlerKuipers & 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 (Reference Schene, van Wijngaarden and Koeter1998) 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. Reference Tucker, Barker and GregoireTucker 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. Reference Kuipers, Leff and LamKuipers 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) (Reference Barrowclough and ParleBarrowclough & Parle, 1997; Reference Scazufca and KuipersScazufca & 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.

CLINICAL IMPLICATIONS

• ▪ At first episode, negative symptoms and behavioural problems cause more caregiver distress (burden).

• ▪ Women caregivers scored higher than men on distress.

• ▪ Even at first episode, caregivers are experiencing distress and are attempting to cope using a range of styles; interventions which routinely include caregivers might be more helpful.

LIMITATIONS

• ▪ The study reports cross-sectional data.

• ▪ Not all patients within the defined catchment area agreed to participate in the study.

• ▪ Not all caregivers could be interviewed and some had little contact with participants.