Hong Kong J Psychiatry 2007;17:38-44

ORIGINAL ARTICLE

Dr Flora YM Mo, MRCPsych, Department of Psychiatry, New Territories East Cluster, Hong Kong, China.
Dr WS Chung, FHKCPsych, Department of Psychiatry, New Territories East Cluster, Hong Kong, China.
Ms SW Wong, RN, Department of Psychiatry, New Territories East Cluster, Hong Kong, China.
Ms Dana YY Chun, RN, Department of Psychiatry, New Territories East Cluster, Hong Kong, China.
Mr KS Wong, RN, Department of Psychiatry, New Territories East Cluster, Hong Kong, China.

Address for correspondence: Dr FYM Mo, Department of Psychiatry, New Territories East Cluster, Hong Kong, China.
Tel: (852) 7472 9231; Fax: (852) 3124 4356; E-mail: moym311@hotmail.com

Submitted: 9 May 2007; Accepted: 5 June 2007

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Introduction

With the introduction of the early intervention programme for psychotic young adults (EASY), caregivers are expected to actively participate in the care of these patients. While caregivers handle the impact of having a family member newly diagnosed with a psychiatric disorder, their perception of the caregiving experience and the family burden imposed is likely to affect their expressed emotion (EE). Expressed emotion describes the quality of a relative’s relationship with a particular person. This is an empirical construct that has been defined in terms of 3 components including the expression of hostility, emotional over-involvement, and the number of critical comments directed towards the patient. Expressed emotion is measured in a semi-structured interview, the Camberwell Family Interview, based on the number of critical comments, the absence or presence of hostility, and emotional over-involvement.¹

To understand the complex interactions between EE, family coping, and the course of illness, further research on the actual behaviour of relatives with different levels and styles of EE has been done. It was found that relatives with high EE exhibited more negatively charged verbal behaviour than those with low EE. Within the former group, members of the ‘critical’ subgroup were distinguished by their frequent use of critical comments whereas the ‘over- involved’subgroup used more intrusive, invasive statements.² Two common patterns of interpersonal control patterning were identified in these high EE families. The first was the competition for ‘who’s in charge’ between the patient and the caregiver, with both insisting on exerting control. The other showed the caregiver playing the controlling role regardless of the response of the patient.³ The caregivers of patients with better social functioning are more likely to adopt the ‘Ignore / Accept’ coping style and experience greater perceived control and a lesser burden.⁴ Caregivers’ beliefs about the causes of the patients’ symptoms and negative behaviours also contribute to the difference in EE. Relatives with high EE made more attributions about the illness than those with low EE. The caregivers with high criticism / hostility perceived the causes of problems as more personally related to the patient.^5,6

Studies performed over the years have shown that EE is a robust predictor of relapse in schizophrenic patients.^7-9 Repeated studies have indicated that relatives’ EE is associated with relapse.^10,11 Other clinical outcome parameters like drug adherence and social functioning have also been related to EE.^12,13 Across different cultures, EE has proven a reliable predictor of relapse in schizophrenia.^14,15 The patterns and distribution of the different components of EE vary in non-western cultures when compared with western studies.^16-19 Studies from mainland China reported fewer critical comments and less emotional over-involvement in the caregivers of patients with schizophrenia.²⁰ The EE pattern and its correlates may need to be interpreted in specific socio-cultural contexts.

In patients with first-episode psychosis (FEP), high EE is associated with the caregiver not being a spouse, and the patients being young, unmarried, and having a lower functioning level.^21,22 An association with an avoidant coping style was also found in these families.²³ Caregivers tend to have a worse emotional adjustment if they make the attributions more personal and controllable by the patient.²⁴ Nonetheless, there has been a positive finding about high EE families²⁵: better social adjustment is associated with high / over-involved EE. Some studies on FEP patients have supported the relationship of positive and / or negative symptoms with high EE^25,26 while some have reported the opposite.^27,28 The relationship between EE and relapse in FEP patients is unclear. One study reported significant associations between caregivers’ EE and relapse after 1 year in 26 patients with recent-onset schizophrenia,²⁷ but in the Northwick Park Study²⁸ EE was not a predictor of relapse in first-episode schizophrenia.

As the pattern of EE in young persons with psychosis has not been characterised, this study aimed to examine the EE in a group of young people (aged 15-25 years) with FEP in Hong Kong.

Patients and Methods

Design

This is a cross-sectional study done to examine the relationships between EE and related clinical variables in patients attending a FEP clinic in the Hong Kong Special Administrative Region.

Participants

Patients and their main caregivers attending the First Episode Psychosis Clinic at the Prince of Wales Hospital were recruited. This clinic is participating in the ‘Early Assessment for Young People with First Episode Psychosis Programme’. Patients targeted by this programme are young people aged 15 to 25 years with recent (within 2 years) onset of schizophrenia, schizoaffective disorder, delusional disorder, acute and transient psychotic disorder, psychosis not otherwise specified, bipolar affective disorder with psychotic symptoms, or a depressive disorder with psychotic symptoms according to the ICD-10.²⁹ The young people were assessed then followed up regularly for up to 3 years with constant contact and support from key workers in the team. Each patient’s main caregiver was defined as the person who had face-to-face contact with the patient for at least 10 hours per week over the previous 3 months.

Assessment

Psychopathology

The investigator rated each patient’s current symptoms using the Positive and Negative Syndrome Scale (PANSS) for schizophrenia.³⁰ This is a 30-item scale used for measuring symptoms in schizophrenia. The scale has 7 positive symptom items (PANSS-P), 7 negative symptom items (PANSS-N), and 16 general psychopathology symptom items (PANSS-G).

Clinical variables included duration of untreated psychosis (DUP), duration of illness, co-morbidity, history of violence / suicide attempts or infliction of self- harm, previous psychiatric admissions, family history of psychiatric illness, adherence to follow-up schedules, and the treatment regimen.

Caregivers were asked to complete a questionnaire about demographic data including age, their relationship with the patient, marital status, employment status, education level, religious beliefs, and whether or not they live with the patient.

Compliance

We collected information on drug adherence from the patients, the caregivers, the respective case doctors, and key workers separately. The patients were asked to rate their compliance using a 4-point Likert scale. Their caregivers, blinded to the patients’ ratings, also rated the compliance of the patient on the same scale. The responsible key workers and psychiatrists gave a dichotomous rating (satisfactory vs. unsatisfactory) of patients’ compliance levels based on their clinical impressions, laboratory results, and past treatment records. All compliance ratings referred to the 3 months prior to this assessment.

Expressed Emotion

In this study, a locally validated 16-item self-reporting Chinese version of the Level of Expressed Emotion (LEE) Scale was used to assess the EE from both the caregiver’s and the patient’s perspective. The original version of LEE³¹ consists of 60 items based on the 4 behavioural and attitudinal correlates of the EE construct. These were: (1) intrusiveness (making repeated attempts to offer unsolicited and often critical advice); (2) emotional response (responding with anger, acute distress, or reactions that would upset the patient); (3) negative attitude towards the illness (doubting that the patient is genuinely ill with little or no control over symptoms, blaming the patient for his / her condition); and (4) tolerance towards and expectations of the patients. Although the Camberwell Family Interview is a tool used widely to assess EE, its use has been limited by the time required for its training, administration, and scoring. The LEE questionnaire scale has sound psychometric properties, has a demonstrated construct and predictive validity, and can be used without prior training.

Statistical Analysis

All statistical analyses were performed with the Statistical Package for Social Sciences for Windows version 14.0 (SPSS Inc, Chicago, IL). We summated the EE raw scores from the following EE parameters: (1) patient-rated total EE score; (2) caregiver-rated total EE score; (3) patient-rated subscores on intrusiveness (I-EE), emotion (E-EE), attitude (A-EE), and tolerance (T-EE); (4) caregiver-rated subscores on I-EE, E-EE, A-EE, and T-EE; and (5) discrepant EE scores between patients and caregivers. The relationships between each EE parameter and the demographic and clinical variables were studied. We used non-parametric methods to analyse the EE scores as the distribution of scores was skewed.

Results

Demographic Characteristics

Two hundred and thirty two caregiver-patient pairs were eligible, 179 (77%) caregiver-patient pairs consented to the study and 139 pairs completed and returned all the questionnaires. The overall response rate was thus 60%. No statistically significant differences were found in the age / gender distribution and the pattern of psychiatric diagnoses of the study group and the non-enrolled group. Sixty three (45%) patients were male and 76 (55%) were female. The mean age was 21.4 (SD, 3.7) years. Two subjects were married and living with their partners; all subjects had attained a secondary level education, and 75% were financially dependent on their relatives. One-third (32%) were students, 35% were working, and 33% were unemployed; 98% were living with the caregiver with only 2 patients living in half-way houses and 1 patient living alone; 62% were residing in public housing estates and the rest in private residential apartments.

Forty eight percent were diagnosed as having schizophrenic spectrum disorder (schizophrenia, schizoaffective disorder, acute and transient psychotic spectrum disorder, and delusional disorder); 27% met the diagnostic criteria of ‘psychosis not otherwise specified’. Bipolar affective disorder and depression comprised 15% and 10% of the total respectively. The mean DUP was 8.9 (SD, 11.8) months. Thirty two percent had positive family histories of psychiatric illness. One hundred and twenty six (91%) of the main caregivers were parents of the patients; 24 were fathers and 102 were mothers. Eight caregivers were siblings and 3 were spouses. Most (40%) caregivers had only received primary education. There were significantly more inpatient admissions in the bipolar affective disorder group than in other diagnostic entities (Chi-square, p < 0.001). The group with schizophrenia, schizoaffective disorders, or delusional disorders had longer durations of admission (p < 0.001) and DUP (p = 0.02). The PANSS total scores and subscores across all the diagnoses were examined with higher negative symptom scores found in the group with schizophrenic spectrum disorders (p = 0.17). The total and subscores for EE (both the patient and caregiver), and other patient clinical variables showed no significant difference across the different diagnostic subgroups. Details are shown in Table 1.

Characteristic Profiles of Expressed Emotion

Patient-rated A-EE subscore (p = 0.04) and the caregiver- rated T-EE subscore were higher in caregivers who were married (p = 0.01). Scores on some EE parameters also differed between the types of kinship between caregivers and patients. The I-EE subscore was higher (p = 0.02) if the caregiver was the patient’s father; caregiver-rated A- EE subscore was higher in caregivers with a lower level of education (p = 0.01). Unemployed caregivers also scored higher on: the caregiver-rated total EE (p = 0.01), caregiver- rated E-EE (p = 0.01), A-EE (p = 0.05), and T-EE subscores (p = 0.004).

There was an inverse relationship between the caregiver-rated I-EE subscore and the age of the patient (r = –0.26; p = 0.002). The caregiver-rated I-EE subscore was also higher in patients who were students (p = 0.01). In line with this observation, higher patient-rated total EE score was seen in school-aged patients (p = 0.02). Both caregiver- rated and patient-rated total EE scores were significantly higher among unemployed patients (respective p values = 0.002 and 0.02). Higher caregiver-rated I-EE (p = 0.01) and higher caregiver-rated T-EE subscores (p = 0.004) were associated with patients being unemployed. Having no family history of mental illness was associated with a higher patient-rated I-EE subscore (p = 0.01) and patient-rated total EE score (p = 0.01). A significantly higher caregiver-rated A-EE subscore was associated with the patient’s history of violence (p = 0.01).

Psychiatric Symptomatology and Expressed Emotion

The correlations between the PANSS scores and EE parameters are tabulated in Table 2. The total PANSS score was positively correlated with both the caregiver-rated (r = 0.28, p = 0.001) and patient-rated total EE scores (r = 0.38; p = 0.01), as well as caregiver-rated E-EE subscore (r = 0.35, p = 0.05) and patient-rated I-EE (r = 0.26, p = 0.002), E-EE (r = 0.33, p < 0.001), A-EE (r = 0.28, p = 0.001), and T-EE subscores (r = 0.19; p = 0.003). The PANSS-P score, which covered the psychotic symptoms, was positively correlated with the caregiver-rated total EE score (r = 0.22; p = 0.01), the patient-rated total EE score (r = 0.21; p = 0.01), the patient-rated I-EE (r = 0.19, p = 0.03), E-EE (r = 0.29, p < 0.001), A-EE (r = 0.26, p = 0.002), and T-EE subscores (r = 0.10, p = 0.003).

Negative symptoms, as reflected by the PANSS-N score, positively correlated with the caregiver-rated total EE score (r = 0.21, p = 0.01), the caregiver-rated E-EE subscore (r = 0.17, p = 0.04) and patient-rated E-EE (r = 0.23, p = 0.01) and A-EE subscores (r = 0.21, p = 0.01). The PANSS-G score, which is mainly comprised of anxiety and depressive symptoms, was found to be positively correlated with the patient-rated total EE score (r = 0.22, p < 0.001), the caregiver-rated total EE score (r = 0.23, p = 0.01), patient-rated I-EE (r = 0.33, p = 0.001), E-EE (r = 0.31, p < 0.001), and T-EE subscores (r = 0.27, p = 0.001).

Comparison between Patient-rated and Caregiver- rated Expressed Emotion

The mean values for both the patient and caregiver total EE scores and the four subscores were compared. Seventy percent of patients whose caregivers had retired from work had higher E-EE subscores (χ² = 20.17, p = 0.003). More male patients (reaching almost 50%) had higher E- EE subscores than caregivers (χ² = 6.05, p = 0.05). Sixty percent of caregivers looking after patients with a history of substance abuse had higher E-EE subscores than the patients (χ² = 12.02, p = 0.002). The DUP was also longer where caregivers rated higher E-EE subscores than the patients (one-way analysis of variance – mean DUP = 15.5 months; 95% CI = 7.2-23.6; p = 0.04).

Compliance

Compliance scores were highly skewed, as over half of the patients and more than 70% of caregivers rated it as 4 on the 4-point Likert scale. For this reason, compliance scores were recoded into a dichotomous categorical variable, with 1-3 collapsing into one ‘non-compliant’ category and the rest rated as ‘compliant’. After recoding, 63% of patients were classified as compliant according to the patients’ ratings while 76% of patients were rated as ‘compliant’ by their caregivers.

The patient-rated A-EE subscore (Mann-Whitney U test, p = 0.02) and caregiver-rated I-EE subscore (Mann-Whitney U test, p = 0.05) were higher among the ‘compliant’ group. The clinician-rated compliant subjects had significantly lower PANSS-G (F = 19.13, p < 0.001), PANSS-P (F = 4.93, p = 0.03), and total PANSS scores (F = 4.29, p < 0.001). The key worker–rated compliant subjects had the same pattern, with significantly lower PANSS-G scores (F = 4.25, p = 0.01), PANSS-P scores (F = 5.90, p = 0.02), and total PANSS scores (F = 4.29, p = 0.04). More clinicians (χ² = 10.34, p = 0.01) and key workers (χ² = 7.82; p = 0.01) rated subjects as non-compliant where there was a history of deliberate self-harm. Thirty seven percent of the poorly compliant subjects in the clinician-rated group were unemployed (χ² = 7.54, p = 0.02).

Discussion

In our sample, caregivers were more intrusive toward younger patients or patients who were students, something probably related to the need for parental care at this developmental stage.²¹ The more ill the patient, the more likely the caregiver would try to direct his / her daily life, which can explain the association of intrusiveness and the PANSS total and subscale scores. Likewise, the degree of intrusiveness was higher if the patient was unemployed. This may be because the caregiver is unhappy with the patient’s unsatisfactory functional level and is proactively trying to change the patient’s situation.

In this sample, the absence of a family history of psychiatric illness was associated with a higher level of intrusiveness and overall EE. It is possible that in families with experience of handling relatives with psychiatric problems, caregivers are more aware of the needs of patients and thus less overwhelmed. The patient’s father was the most intrusive caregiver in our observation, which differed from the results seen in Caucasian populations where the mother tends to be more intrusive.^32-34 This may be related to the fathers’ higher expectations, and their tendency to be less accommodating when the children become ill.

Collaborating with and offering psycho-education to the caregivers are key objectives of our early intervention service. The relatives are expected to be able to understand the need to adhere to the treatment and assist with monitoring the patient’s condition. Considering the high compliance in our sample and the higher intrusiveness scores seen in those with good compliance, it can be assumed that the patients’ levels of adherence to drug regimens were achieved by close supervision of relatives. Unemployed caregivers had higher EE scores over all the domains. This may be related to increased face-to-face contact with the patient, which has been reported as a risk factor for high EE.^32-34

Our results suggest that higher PANSS symptom scores are associated with various EE parameters. In our study, the caregivers’ EE was still quite subject to change in the early stages, suggesting this may be the prime time for more aggressive treatment and family intervention work. It appears that the caregivers’ and patients’ perspectives diverge widely across a number of EE parameters. Such discrepancies might result in false expectations, sentiments from unmet expectations, conflicts, and loss of balance in the caregiver / patient dynamics. It is possible that such discrepant EE scores reflect a real-life discrepancy in the perception of EE by patients and caregivers. Some studies done on EE in non-Caucasian populations or developing countries suggest other possibilities, one being the community’s cultural attitude towards scientific research, in particular, biomedical or psychosocial research. Okasha et al¹⁷ studied the value of families’ EE and patients’ perception of family criticisms in predicting relapse in Egyptian depressed patients. Many patients were reluctant to evaluate their caregivers with numbers on a 10-point scale. They actually puzzled about the real motive behind the apparently simple questions on perceived criticisms. A study of EE in families of Japanese patients with depression and schizophrenia revealed a uniformly low EE in their sample.¹⁸ In another study, Chinese students gave self- enhancing answers when asked to evaluate themselves on social desirability scales, especially on undesirable items.³⁵

This study has several limitations. Forty percent of eligible patient-caregiver pairs ultimately failed to enrol. Although the characteristics of those patients who enrolled and those who refused did not differ, we had little information about the caregivers’ characteristics. Our study subjects were from a specialised tertiary psychiatric care setting that emphasises psychosocial interventions and family support. The caregiving experience, and probably the EE pattern, is thus likely to be different from that of other caregivers receiving a generic psychiatric service. Although we made it clear to the subjects that the study results would not affect any aspect of treatment, reporting biases to enhance social desirability were not impossible. On the other hand, our study has several strengths. We have chosen a representative sampling frame to recruit all active cases managed by the EASY clinic. The clinical characteristics of the patient group were relatively homogenous by virtue of the service organisation of the EASY clinic. This has, in effect, controlled for a number of potential factors (e.g. DUP, duration of illness, and stage of illness) that may confound the EE measures. Such clinical homogeneity has allowed us to examine the relationships between EE and the variables in question.

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