Community Psychiatry, St George's Hospital Medical School, London
Department of Health, London
School of Psychiatry and Behavioural Sciences, Manchester Royal Infirmary
Maudsley Hospital, London
Correspondence: Dr Kate Harvey, Department of General Practice & Primary Care, Guy's, King's and St Thomas' School of Medicine, 5 Lambeth Walk, London SEII 6SP
Declaration of interest The UK700 trial was funded by grants from the UK Department of Health and the NHS Research and Development programme.
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ABSTRACT |
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Aims To examine the predictors of frequent patientrelative contact, in particular the role of relatives' experience.
Method UK700 trial data were used to determine baseline predictors of frequent contact and establish whether relatives' experience at baseline predicted continued frequent contact 2 years later.
Results Neither characteristics associated in the literature with relatives' burden nor relatives' experience predicted patientrelative contact frequency. Instead, the predictors were mainly demographic.
Conclusions Many relatives experience considerable distress, but the evidence does not suggest that they avoid frequent contact with the patient as a consequence.
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INTRODUCTION |
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The theory that patients' isolation from relatives is attributable to patients' social withdrawal has gained widespread acceptance. Wasow (1994), however, suggests an alternative explanation, that relatives avoid contact with patients because they find the situation distressing. The aim of the present study is to examine which characteristics predict frequent patientrelative contact, in particular whether relatives' experience, and the characteristics found in the literature to be associated with their distress, have a significant effect.
Predictors of relatives' experience
It has been demonstrated that a patient's illness may have an impact on
several areas of family life (Perring
et al, 1990), but it is unclear why some relatives are
more adversely affected than others. Numerous potential influences have been
investigated, including socio-demographic characteristics of patients and
relatives, patients' clinical characteristics and characteristics of the
patientrelative relationship, but generally findings are inconsistent,
possibly reflecting differences in the conceptualisation and measurement of
relatives' experience (Maurin &
Barmann Boyd, 1990). An exception is patients' symptom severity.
Most studies have found it to be strongly related to their relatives'
burden (Baronet,
1999), although a few have found no association
(Magliano et al,
1998). The specific symptoms that relatives find most distressing
are not yet clear, however. Some studies have found negative symptoms to be
more problematic, whereas others indicate that relatives have greater
difficulty with positive symptoms
(Provencher & Mueser,
1997).
Aims
This study aims to identify predictors of frequent patientrelative
contact. If relatives avoid frequent contact because they find the situation
distressing, we anticipate that patients' symptom severity, shown in the
literature to be associated with relatives' burden, will predict
patientrelative contact frequency. We also anticipate that relatives
who appraise caregiving more negatively and experience more psychological
distress at baseline will be less likely to have frequent contact with the
patient at 2-year follow-up.
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METHOD |
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Patients with organic brain damage or a primary diagnosis of substance misuse were excluded. The sample was obtained by systematic review of community mental health team case-loads. Independent researchers collected information from case notes and interviews with patients, relatives and health professionals.
If the patient had face-to-face contact with a relative at least twice per week, their consent to approach the relative for interview was sought. Relatives included spouses and partners. Following baseline assessment, patients were randomised to 2 years of either standard or intensive case management. Assessments were repeated at 1- and at 2-year follow-up.
Instruments
Patients' clinical features
Disability in social functioning during the preceding month was measured
using the 11-item World Health Organization
(1988) adaptation of the
Disability Assessment Schedule (DAS). Severity of psycho-pathology over the
preceding week was assessed using the 65-item Comprehensive Psychiatric Rating
Scale (CPRS;
sberg
et al, 1978). The 10-item
Montgomery-
sberg Depression Rating Scale
(MADRS; Montgomery &
sberg, 1979) was derived from the
CPRS. Negative symptom severity during the same period was measured using the
Scale for the Assessment of Negative Symptoms (SANS;
Andreasen, 1989).
Information regarding age at onset and duration of psychosis - months in psychiatric hospital since onset, months in psychiatric hospital and number of admissions to psychiatric hospital in the preceding 2 years, and parasuicide - was collected from case notes and hospital information systems. Two items from a slightly modified World Health Organization Life Chart (1992) were used to assess the course and severity of the patient's psychotic illness during the preceding 2 years.
Relatives' experience
Relatives' experience was conceptualised using the stress-appraisal-coping
paradigm. Two components were assessed: appraisal of caregiving, measured
using the Experience of Caregiving Inventory (ECI), and psychological
distress, measured using the 12-item General Health Questionnaire (GHQ-12).
The ECI (Szmukler et al,
1996) is a 66-item self-report
questionnaire developed specifically for use with relatives of patients with
mental illness. Relatives rate the frequency with which they have thought
about each item on a five-point Likert scale anchored at never
and (nearly) always. The time frame is the preceding 4 weeks.
The ECI is divided into 52 items measuring negative appraisal and 14 measuring
positive appraisal. The internal consistency and construct validity of the ECI
are good (Szmukler et al,
1996).
The GHQ-12 (Goldberg, 1978) is a widely used self-report questionnaire that measures psychological distress. Relatives rate the frequency with which they have experienced 12 indicators of psychological distress on a four-point scale. Again, the time frame is the preceding 4 weeks. Internal and test-retest reliability and validity coefficients (specificity and sensitivity) are satisfactory (Goldberg & Williams, 1988).
A straightforward, or S-GHQ, score was used in which the response same as usual is taken to indicate the absence of distress. This is unlikely to be sensitive to feelings of resignation, however, and so an alternative method in which same as usual on negative items indicates the presence of distress was, therefore, also used. This is the chronic, or C-GHQ, score. Caseness was determined by applying a cut-off of 3/4 on the S-GHQ and 4/5 on the C-GHQ as recommended by Goldberg et al (1997).
Statistical methods
The representativeness of the sample was tested by comparing eligible
patients who did not enter the trial with those who did, using chi-squared
tests for categorical data and Mann-Whitney tests for non-normal continuous
data.
Logistic regression analysis was used to test which patient characteristics predicted frequent patient-relative contact. To assist with interpretation, and because a linear relationship could not be assumed, continuous and whole number data were converted into categorical data. Patient characteristics were cross-tabulated with contact frequency and chi-squared tests were performed to test for a relationship. A significance value of less than 0.2 was considered indicative of an association requiring further investigation. Characteristics reaching this level of significance were entered into a forward logistic regression analysis. This logistic regression analysis was used to derive a series of adjusted odds ratios (and their 95% confidence intervals) of those characteristics that predicted frequent patient-relative contact (deemed significant at the 5% level).
The same procedure was then used to establish which relative characteristics at baseline were predictive of continued frequent contact at 2-year follow-up. Unlike in the previous analysis, a linear relationship with relatives' appraisal and psychological distress was hypothesised. To test the degree of association between these continuous variables and contact frequency, Mann-Whitney tests were used. The same significance value cut-off of 0.2 was applied.
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RESULTS |
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At baseline almost half (47%) of patients were in frequent contact with a relative. An interview was conducted with 154 (47%) of these relatives. The remaining relatives were not interviewed, mainly because either the patient refused access (20%) or the relative refused to be interviewed (18%). The response rate, although low, is similar to that in other studies (Stueve et al, 1997). At 2-year follow-up 65% of patients continued to have frequent contact with a relative. A small number of patients (8%) were lost to follow-up.
Sample characteristics
Baseline data showed a small preponderance of male patients (57%). Half of
the patients were White (52%); most of those remaining were Black-Caribbean
(28%). Only 12% were (living as) married. Patients' geographic mobility was
relatively low, with only 25% having moved town or district since the onset of
their illness. Thirty-three per cent lived alone and a similar proportion
lived with family (32%). Patients living in hostel accommodation accounted for
most of those living with people other than family (26%). Very few patients
(8%) were employed, even though part-time and sheltered work were included.
Almost half (49%) had a diagnosis of schizophrenia or schizoaffective
disorder. For most, their illness had been lengthy (median=24 years;
interquartile range=5-18 years) with considerable periods of time in
psychiatric hospital (median=9 months; IQR=5-18 months). Patients' typical
illness severity during the preceding 2 years was most commonly described as
moderate (47%), although 24% were recovered. Half (52%) of patients had been
episodically ill during the preceding 2 years and about two-thirds (37%) had
been continuously ill.
Table 1 describes relatives' baseline characteristics. Their psychological distress was high, with 41% scoring above the caseness threshold on the SGHQ. This contrasts with a community norm of 12% (Goldberg et al, 1976). Once feelings of resignation were taken into consideration, 64% were identified as potential cases.
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Patient characteristics predictive of frequent patientrelative
contact at baseline
Of the 18 patient characteristics tested, 12 reached a significant level of
0.2 and were entered into a forward logistic regression analysis (age; gender;
ethnicity; geographic mobility; diagnosis; duration of psychosis; months in
psychiatric hospital since onset; history of parasuicide; current
psychopathology; and, in the 2 years preceding entry, months in psychiatric
hospital, severity of symptoms and course of illness). Missing data resulted
in a sample size of 635.
The adjusted odds ratios of the six characteristics found to be significant predictors of frequent patientrelative contact at baseline are shown in Table 2. For patients aged 45 or older, the odds of frequent contact with a relative were about half those of patients aged under 25, and for female patients the odds of frequent contact with a relative were about twice those of males. For Asian patients the odds of frequent contact with a relative were around three times those of White patients, but there was no significant effect for other ethnic groups. Patients with a diagnosis of schizo-affective disorder or affective psychosis had slightly greater odds of frequent contact with a relative than patients with a diagnosis of schizophrenia, though the confidence interval for the latter only just avoided spanning unity. Patients with more than 18 months in hospital since the onset of their psychotic illness had around half the odds of frequent relative contact compared to those with less than 6 months. The odds of having frequent contact with a relative were also smaller for patients with a history of parasuicide.
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The six characteristics predictive of frequent patientrelative contact having been identified, two subsequent questions arose. First, as 69% of patients in frequent contact with a relative were living with family, could these six characteristics be simply predictors of patient-relative co-residence? Second, which patient characteristics predicted contact frequency for patients who did not live with family? To address these issues two further sets of analyses using the baseline data were performed. The associations between each of the 18 patient characteristics and (a) patient-relative co-residence and (b) patient-relative contact frequency for the subgroup of patients who did not live with a relative were tested, using the same methods as before. The results are shown in Tables 3 and 4.
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Five patient characteristics were found to predict patient-relative co-residence at baseline (Table 3). Four (gender, ethnicity, months in hospital since onset and a history of parasuicide) had been predictors of contact frequency. The fifth, marital status, had not been entered into the original regression analyses because (living as) married was synonymous with frequent contact. While (living as) married was also synonymous with patient-relative co-residence, it was included so that its effect could be adjusted for. The remaining two characteristics that predicted frequent contact in the original analysis (age and diagnosis) were the only characteristics found to predict frequent contact at baseline for the subsample of patients who did not live with family (Table 4).
Relative baseline characteristics predictive of continued frequent
patient-relative contact at 2-year follow-up
Only three of the eight relative baseline characteristics were entered into
the logistic regression analyses. The association between those remaining and
continued frequent contact - in particular, relatives' appraisal (negative or
positive) and psychological distress (before or after feelings of resignation
were taken into consideration) - failed to reach the required 0.2 cut-off.
The regression analysis showed that patients were nearly three times more likely to remain in frequent contact with a relative at follow-up if the relative was aged over 60 at baseline compared to under 40 (Table 5). Similarly, patients were around three times more likely to remain in frequent contact with a relative if they had been living with a relative at baseline. The confidence intervals for both of these odds ratios were, however, fairly wide. The specific patient-relative relationship did not predict frequency of patient-relative contact at follow-up once other characteristics had been adjusted for.
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DISCUSSION |
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Study limitations
The theory tested in this study relied on two assumptions: first, that the
characteristics identified in the literature as associated with
burden would be associated with experience as it was
conceptualised in this study; second, that relatives' experience at baseline
would be predictive of contact frequency 2 years later. Neither of these
assumptions has been tested. Response bias is a further limitation. Arguably,
patients and relatives experiencing difficulties may have been more reluctant
to take part, thus biasing the sample in favour of those more likely to remain
in contact. Although the anticipated characteristics did not predict contact
frequency, several others were found to be important.
Demographic predictors of frequent contact
Female patients were more likely to live with, and thus have frequent
contact with, a relative than were male patients. Initial comparisons suggest
that this may simply reflect the living circumstances of the general
population (Office for National
Statistics, 1998); however, these gender differences in the
general population are mainly attributable to differences in marital status
and lone parenthood. In our study, these factors were adjusted for. The
finding is unlikely to be explained by the theory that relatives avoid contact
because they find the situation distressing, as evidence indicates that it is
relatives of female patients who experience more distress
(Winefield & Harvey,
1993).
Another characteristic found to predict patient-relative contact frequency through co-residence was ethnicity. Studies show that White relatives experience greater difficulties than minority relatives (Horwitz & Reinhard, 1995; Stueve et al, 1997). However, most were conducted in the USA, where minority groups are typically Black or Hispanic. That this study did not find differences between White and Black relatives may indicate that previous findings are culture-specific. Moreover, previous studies provide no information about the experience of Asian relatives. Asian households tend to be larger than White or Black households (Office for National Statistics, 1998), which may mean that support is more readily available and, consequently, individual relatives experience less distress. Alternatively, Asian relatives may experience no less distress, but instead be more likely to consider providing care to a family member with mental illness to be their duty. Further research comparing experiences of caregiving and feelings of obligation across UK ethnic groups is needed in order to understand the effect of ethnicity on co-residence.
Patients' age was not associated with patient-relative co-residence, but it did predict frequent contact for patients who were not living with family. Older patients were less likely to have frequent contact with a relative than younger patients, which accords with Hirschberg's (1985) finding that older patients have fewer social contacts generally. Relatives of younger patients may be more hopeful of recovery and, consequently, more likely to remain in frequent contact. Alternatively, since older patients' relationships have been exposed to more risks, they may simply have fewer relatives available to them. If this were true, however, it would be expected that age would also predict patientrelative co-residence, but it did not.
Clinical predictors of frequent contact
The association between patientrelative co-residence (and thus
contact frequency) and time in psychiatric hospital is consistent with the
literature demonstrating that social networks containing fewer relatives are
associated with patients' increased hospital use
(Horwitz, 1978;
Hirschberg, 1985;
Holmes-Eber & Riger, 1990;
Becker et al, 1997).
It may be that relatives experience more distress if patients spend more time
in hospital, and so avoid co-residence and frequent contact. However, as
Horwitz (1978) asserts, living
with a relative may mean that patients are less likely to need lengthy
admissions or professionals may perceive the care that relatives provide to be
an adequate alternative to hospitalisation. Unfortunately, the data from this
study do not allow causality to be attributed. The problem of attributing
causality is also pertinent to the association between parasuicide and
patientrelative co-residence. It could be argued that relatives find
patients' suicide attempts distressing, and so avoid living with them.
Alternatively, patients may be less likely to attempt suicide if they live
with a relative.
Patients' diagnosis was also associated with contact frequency. Patients who did not live with family were less likely to have frequent contact with a relative if they had schizophrenia than if they had affective or schizoaffective disorder. This may be because the relatives of patients with schizophrenia experience more distress than the relatives of patients with other diagnoses. It is also consistent with the alternative theory that patients' isolation is a consequence of their social withdrawal, since, arguably, social withdrawal is more characteristic of schizophrenia than psychoses with an affective component.
Baseline characteristics predictive of continued frequent
contact
Of the relatives' characteristics tested, only co-residence with the
patient at baseline and age significantly predicted continued frequent contact
at 2-year follow-up. Arguably, as relatives get older they may learn to cope
with the patient's illness more successfully, and thus experience less
distress. Alternatively, as Greenberg
(1995) has shown, the
relationship between patients and their relatives becomes more reciprocal as
relatives get older. A relative may be more likely to maintain frequent
contact with a patient if they are relying on the patient for support or
companionship.
This study is limited because cause and effect cannot be determined from these data. Moreover, many factors that may be significant determinants of patientrelative contact were not investigated, for example, the professional support that relatives receive. Nevertheless, this study elucidates some of the characteristics that indicate vulnerability to isolation and confirms that a lack of contact with relatives is associated with poorer patient outcomes.
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Clinical Implications and Limitations |
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LIMITATIONS
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ACKNOWLEDGMENTS |
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Received for publication March 9, 2000. Revision received September 15, 2000. Accepted for publication September 18, 2000.