Hong Kong J Psychiatry 2007;17:75-80

ORIGINAL ARTICLE

Dr David YK Lau, MRCPsych, FHKCPsych, FHKAM (Psychiatry), St. Paul’s Hospital, 2 Eastern Hospital Road, Causeway Bay, Hong Kong, China.
Dr Alfred HT Pang, MRCPsych, FHKCPsych, FHKAM (Psychiatry), Tai Po Hospital, 9 Chuen On Road, Tai Po, Hong Kong, China.

Address for correspondence: Dr David YK Lau, Suite 1802, 18/F, East Point Centre, 555 Hennessy Road, Causeway Bay, Hong Kong, China.
Tel: (852) 3586 9881; Fax: (852) 3568 9882;
E-mail: drdavidlau@yahoo.com.hk

Submitted: 21 May 2007; Accepted: 4 July 2007

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Introduction

Psychiatric illnesses have a major impact on both patients and their relatives.^1,2 Caring for a relative with mental illness significantly affects all aspects of the caregivers’ life.^3,4 The consequence of this caregiving role is formally known as the ‘caregiving burden’.

In order to understand its determinants, mediating influences, and effects on clinical outcome, researchers have tried to study the caregiving burden using psychological or social theory.^5-9 Baronet¹⁰ reviewed 34 previous studies on the determinants of the caregiving burden. Major categories of variables included the socio-demographic data of patients and caregivers, and illness-related factors. Other studies emphasised the relationship between coping strategies and the caregiving burden.^6,8,9 Younger caregivers were reported to experience a higher caregiving burden.¹¹ Having a patient of a younger age was associated with a higher negative appraisal.¹² Residing with the relative was found to be associated with a high caregiving burden.^13-15 People with a lower educational background suffered greater distress,¹⁶ while a higher educational level was associated with less subjective burden.¹⁶ Positive^17-19 or negative symptoms^20,21 of psychosis specifically caused a greater caregiving burden but a recent study found that symptomatology does not predict the negative appraisal of burden.¹¹

Coping skills and sense of mastery affect the caregiver’s burden. Coping strategies are the characteristic strategies that an individual uses to handle stress.²² A ‘stress-coping’ model, based on the ‘stress-appraisal-coping’ paradigm of Lazarus and Folkman, was developed.²² Caregivers who practise coping strategies that emphasise problem-focused techniques experience less burden.^23-25 Caregivers with a stronger sense of mastery were found to have less subjective burdens or appraisals of caregiving.^6,7,26

A study of ethnic Chinese families found that they were more affected by stigma than western families.²⁷ Previous local studies on the caregiver’s burden have demonstrated that families of schizophrenic patients suffer social costs, such as loss of social ties, financial difficulties, and strained family relationships,²⁸ as well as emotional costs such as anger, sadness, and anxiety.²⁹ There have been few quantitative studies evaluating the caregiving burden until Wong³⁰ demonstrated that caregivers with a stronger sense of mastery have better psychological well-being. Illness-related factors, such as diagnosis, symptomatology, functioning of patients, and duration of illness have not been studied in a local Chinese setting. Our study evaluated the determinants of the caregiving experience in relatives of persons with severe mental disorders. Their appraisal of the caregiving experience was examined by analysing the impact of the ‘sense of mastery’ on the experience of caregiving.

Methods

Subjects and Setting

All patients admitted to the New Territories East Psychiatric Observation Unit of Tai Po Hospital in Hong Kong between March 2002 and June 2002 were screened (catchment population = 900,000, Census and Statistics Department, 2001). The selection criteria were as follows: (1) diagnosed as having one of the severe mental disorders: schizophrenia, schizotypal and delusional disorder, and severe affective disorder as evaluated by two qualified psychiatrists within 1 week of admission. Patients who were readmitted during the study period had their diagnosis assessed during the first admission only; (2) aged between 15 and 65 years; (3) ethnically Chinese; (4) no psychiatric co-morbidity; (5) ability to comprehend and complete the interview; and (6) ability to give informed consent to participate in the project.

Caregivers were invited by telephone to attend the interviews. The interviews were conducted within 2 weeks of the patients’ admission, by either the author or the clinical psychologist in-charge at the hospital, who was familiar with the instruments, or by 2 trainee clinical psychologists. The author conducted all patient interviews. Both patients and caregivers gave written informed consent before assessment. Approval was obtained from the Medical Ethics Committee of the Tai Po Hospital.

Assessment

Socio-demographic Information of Caregivers and Patients

Caregivers reported socio-demographic information, including age, gender, kinship, marital status, educational level, whether he or she lived with the ill relative, type of housing, area of housing, number of people in the same household, occupation, and family income. Patients’ demographic information included age, gender, marital status, educational level, occupation, and living conditions. The amount of direct contact between the relative and the patient each week was recorded.

Caregivers’ Burden — Experience of Caregiving Inventory

This 66-item self-report questionnaire—Experience of Caregiving Inventory (ECI)—was originally developed for use with caregivers of patients with severe mental illness.⁷ It measures the caregivers’ appraisal of the caregiving experience in the preceding 4 weeks. It consists of 52 items measuring 8 negative appraisal subscales, and 2 positive appraisal subscales including ‘positive personal experiences’ and ‘good aspects of the relationship’. Items are scored on a 5-point Likert scale from 0 (never) to 4 (always). Overall positive and negative scores are calculated by summation of these subscores. A validation of the Chinese ECI was conducted and it was found to have satisfactory internal consistency (Cronbach α = 0.49-0.85) and the test-retest reliability (intra-correlation coefficient = 0.83-0.97) was good.³¹

Coping Resources — Mastery Scale

This is a 7-item scale — Mastery Scale (MS) — measuring the degree to which individuals perceive personal mastery over life outcomes.³² A Chinese version has been translated³³ and is commonly used. Internal consistency of the scale is satisfactory.³⁴ Subjects rate items on a 4-point Likert scale, ranging from -2 (strongly disagree) to 2 (strongly agree).

Psychiatric Symptomatology

Positive, negative, and depressive symptoms were rated with the Brief Psychiatric Rating Scale,³⁵ the Scale for the Assessment of Negative Symptoms (SANS),³⁶ and the Hamilton Depression Rating Scale 17-item version.³⁷ The Global Assessment of Functioning (GAF)³⁸ at 4 weeks and 1 year before admission was also performed.

Statistical Analysis

Data were analysed with the Statistical Package for the Social Sciences (Windows version 10.0; SPSS Inc, Chicago [IL], US). Predictors of relatives’ negative and positive appraisals were investigated by calculating the univariate regression coefficients for each independent variable. Variables that demonstrated significance levels of p < 0.05 were then entered into a stepwise multiple regression analysis for further investigation.

Results

A total of 81 patients and 129 caregivers were recruited. There was no significant difference in the demographic characteristics of patients who entered the study and patients who did not. The mean age of patients was 35.1 (standard deviation [SD], 11.1; range, 17-62) years and 63% had a diagnosis of schizophrenia, 17% suffered from affective disorder, 5% had schizoaffective disorder, and the remaining 15% had other psychoses. The mean age of the caregivers was 45.3 (SD, 13.5; range, 16-79) years and 64% were female. Most caregivers (44%) were parents, 25% were partners, 17% were siblings. The mean number of years in education of the caregivers was 9.3 (SD, 5.3) years, 44% were educated up to secondary school level, 40% up to primary level or below. The patient’s diagnosis and the duration of illness also showed no significant relationship with the amount of contact time.

Socio-demographic Characteristics and Experience of Caregiving Inventory

There were no gender differences in the caregiving appraisals. Younger caregivers tended to give a more positive appraisal, though this was not statistically significant (r = –0.21, p = 0.06). The caregivers’ length of education significantly correlated with both negative (r = 0.25, p = 0.03) and positive appraisals (r = 0.28, p = 0.01). Caregivers who were employed showed higher positive appraisal (t = –2.39, p = 0.02). There was also a positive correlation between positive and negative appraisals (r = 0.32, p = 0.003) [Table 1].

Psychiatric Symptomatology and Appraisal of Caregiving

Table 2 shows the association between clinical variables and the appraisal of caregiving. The total score of the SANS showed a non-significant trend towards a negative correlation with positive appraisal (r = –0.29, p = 0.07). The negative symptom subscales had a significant negative correlation between ‘avolition-apathy’ and the positive appraisal (r = –0.29, p = 0.01). The GAF score 1 year before the index admission was negatively correlated (r = –0.27, p = 0.01) with the negative appraisal, and also showed a trend towards a positive correlation with the positive appraisal (r = 0.21, p = 0.06). There was no significant correlation between the recent GAF score and the appraisals of caregiving. No significant relationship was found between appraisal and other clinical variables.

The Association between Mastery Scale and Experience of Caregiving Inventory Scores

The mean score on the MS was 4.40. There was a negative correlation between the age of the caregiver and ‘rational problem-solving’ (r = –0.32, p = 0.003) and ‘seeking support and ventilation’ (r = –0.44, p < 0.001). There was no significant relationship between the gender of caregivers and various ways of coping (p > 0.05). There was a significant positive correlation between the years of education of caregivers and ‘rational problem-solving’ (r = 0.48, p < 0.001) and ‘seeking support and ventilation’ (r = 0.46, p < 0.001). Correlation of the MS with ECI scores showed that a better sense of mastery was associated with less negative appraisal in caregivers (r = –0.24, p = 0.03). There was no significant relationship between the MS score and positive appraisal.

Predictors of Appraisal of Caregiving

Significant variables, including patients’ employment status, GAF score 1 year before admission, the ‘avolition-apathy’ score in the SANS, and the caregivers’ educational levels, were entered into a regression analysis with positive and negative appraisals as the dependent variables (Table 3). The caregivers’ educational levels accounted for 8.5% of the variance, and the patients’ employment status accounted for 5.6% of the variance in positive appraisal. For negative appraisals, the GAF score at 1 year before admission and caregivers’ years of education together accounted for 11.8% of the variance.

Discussion

One interesting finding was the positive correlation between negative and positive appraisals of caregiving, a finding that was reported in a previous study.¹² This may be reflective of ‘commitment’ in the process of caregiving.¹² Relatives who are more committed to caregiving perceived more difficulties and more rewards than relatives who are more detached. Higher scores of ‘avolition-apathy’ negative symptoms were associated with lower positive appraisals. No significant correlation was found between the appraisals of caregiving and either positive or depressive symptoms. Relatives of unemployed patients had lower positive appraisals, while relatives of patients with poorer social functioning appraised caregiving more negatively. These findings were also consistent with other studies that examined the effect of patients’ employment and social functioning on the caregiving experience.^11,39-41

Previous studies have found that older caregivers had a higher burden.^42,43 In this study, there was no significant relationship between caregivers’ age and negative appraisal. There was, however, a trend towards less positive appraisal from older relatives. A previous study⁹ has showed that the adoption of problem-focused strategies was more frequent among young relatives. Caregivers who received higher education showed both higher negative and positive appraisals.^15,44 It is possible that subjects who are more educated adopted active problem-focused coping more frequently when they encountered negative appraisal. The mean MS score in this study was higher than the mean score of 2.38 that was found in another local study.³⁰ This suggests a better sense of mastery, and hence greater coping resources, in our caregivers. Relatives with a better sense of mastery appraise caregiving less negatively, a phenomenon demonstrated by other studies.^6,7,45

The findings of this study have several implications. Predictors of the appraisals of caregiving suggest specific interventions likely to relieve the distress of caregivers. Our study suggests that interventions or treatments that aim to improve the functioning of the patient might reduce the caregivers’ negative appraisal. Improvement of the patients’ employment status and negative symptoms may enhance caregivers’ positive appraisal and, eventually, decrease psychological distress. Interventions that enhance rational problem-solving coping strategies and mastery may relieve psychological distress and bring about positive changes in distress, burden, and coping.⁴⁶

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