Personal tragedy or system failure: a qualitative analysis of narratives of caregivers of people with severe mental illness in Hong Kong and Taiwan

BACKGROUND: Most studies agree that mental illness brings a heavy objective and subjective burden of care on the family and especially the caregivers. However, very little attention has been paid to the wider context in which this burden is shaped and sustained. MATERIAL: In-depth interviews were conducted with 11 caregivers in Hong Kong and Taiwan and subsequent analysis identified four major themes: mystical knowledge beyond understanding, persistent self-blame and lay explanation, inertia of caregivers and non-responsive service system, and unsatisfying encounters with medical staff. DISCUSSION: The results of the study indicate that these families did not get the services they needed. In spite of recounting many system failures, most respondents attributed their situation to tragedy and misfortune at personal and family levels. Such a discourse is closely connected to a wider context of health and social care. The Hong Kong subjects complained more, felt more helpless, and had more persistent self-blame and lay explanation than the Taiwanese subjects. CONCLUSIONS: To reduce such experiences, this paper calls for inclusive policies for the family, new education strategies and reflections on the roles of mental health professionals in empowerment and advocacy beyond conventional treatment, counseling and education.     

Family burdens, Chinese health beliefs, and the mental health of Chinese caregivers in Hong Kong

This study explored the types of family burdens, mental health and Chinese health beliefs of Chinese caregivers with relatives suffering from a serious mental illness. It also examined the impacts of these beliefs on caregivers' burdens and mental health. A structured questionnaire was administered to 125 Chinese caregivers in out-patient clinics in Hong Kong. Measures included distress (General Health Questionnaire), family burdens and belief in traditional Chinese medicine. Family burdens exerted a significant impact on the mental health of caregivers. Significant differences were found between believers and non-believers of traditional Chinese medical beliefs in terms of financial burdens, disruptions to family interactions and decline in physical health. No [corrected] moderating effect of Chinese health beliefs on family burdens and mental health was found. The lack of a moderating effect of health belief on family burdens may be related to caregivers' changes in perspectives from a traditional Chinese cultural perspective to a psychosocial and personality perspective. Implications for research and service development are discussed.     

The relationship between psychological resources,social resources,and depression: Results from older spousal caregivers in Hong Kong

Objectives: The rapidly ageing population in Hong Kong has led to a major concern in providing care for the elderly. Due to the current social changes in Hong Kong, such as smaller family size, longer life spans, and increasing employment demands, spouses increasingly serve as the primary caregivers for older adults. To explore the mental health of older spousal caregivers, this study investigated the relationships between psychological resources, social resources, and depression.

Method: One hundred fifty-eight spousal caregivers aged 55 and above were recruited from 13 caregiver resource centres in Hong Kong. Data were collected using structured questionnaires.

Results: Hierarchical regression analysis revealed that the number of duties and psychological resources including purpose in life, caregiver burden, and personal wellbeing explained 56% of the variance in depression. Logistic regression analysis further indicated that purpose in life predicted the likelihood of depression reported by caregivers. Social resources did not significantly predict depression.

Conclusion: Results suggest that mental health enhancement programs should be developed for Chinese spousal caregivers with a focus on purpose in life, burden, and personal wellbeing.     

Feelings of burden and health-related quality of life among family caregivers looking after the impaired elderly

The aim of the present study was to examine the relationship between feelings of burden and health-related quality of life (HRQOL) among family caregivers looking after the impaired elderly residing in a community located in southern Japan. Subjects were 85 pairs comprising elderly individuals requiring care and their respective family caregivers. Questionnaire items for the family caregivers related to demographic variables, caregivers' burden, HRQOL, use of public services, hours spent caregiving, duration of caregiving, and satisfaction with verbal communication with family. Questionnaire items for the elderly recipients of care concerned demographic variables, activities of daily living, and cognitive status. According to bivariate analysis, caregivers' burden was significantly related to cognitive status, hours spent caregiving, and each HRQOL subscore except physical function. From multiple regression analysis, subscore of HRQOL with respect to mental health and satisfaction with verbal communication were extracted as influential factors. Final regression coefficient was 0.72 (P<0.01) and coefficient of determination was 0.53. These results suggest that satisfactory mental health status plays an important role in limiting family caregivers' burden.     

Mental health of primary family caregivers with children with intellectual disability who receive a home care programme

Background The aims of the present study were to describe the change in mental health over time in a group of family caregivers with a child with intellectual disability (ID) and to explore the effect of a home care service on the psychological well‐being of the caregiver. Methods The authors identified children with ID who received home care services in the southern part of Taiwan. A total of 46 primary family caregivers (age range = 21–65 years) were recruited for the present study. The study design was a quasi‐experimental follow‐up analysis. The children with ID and their families regularly received home‐based care. The 12‐item version of the Chinese Health Questionnaire (CHQ) was used to evaluate the subjects’ mental health at three time points: (1) baseline, (2) 3 months and (3) 9 months. The validity and reliability of the CHQ have been tested in Taiwan. The Generalized Estimating Equation was used to conduct longitudinal data analyses. Results The authors found that the family caregivers showed a significant improvement in their mental health by month 9. Conclusions The preliminary findings of this study accredit the effect of home care services and suggest that home care services are necessary for family caregivers.     

A disease management program for families of persons in Hong Kong with dementia

OBJECTIVES: This study tested the effectiveness of a dementia care management program for Chinese families of relatives with dementia on caregivers' and patients' health outcomes over a 12-month follow-up period. METHODS: The dementia care management program is an educational and supportive group for caregivers that lasts six months. A controlled trial was conducted with 88 primary caregivers of persons with dementia in two dementia care centers in Hong Kong. Family members were assigned randomly to either the dementia care program or standard care. The two groups were compared for patients' symptoms and institutionalization rates and caregivers' quality of life, burden, and social support upon recruitment and six and 12 months after group assignment. RESULTS: Over the 12-month follow-up period, patients with family members in the dementia care program showed significantly greater improvements in symptoms and institutionalization rates and their caregivers reported significantly greater improvements in quality of life and burden compared with the control group. CONCLUSIONS: The findings provide evidence that the dementia care management program can improve the psychosocial functioning of Chinese persons with dementia and their caregivers.     

抑郁障碍的家庭负担——山东省的研究

目的 了解山东省抑郁障碍患者的家庭负担情况.方法 在山东省范围内收集900例抑郁障碍患者,以家庭负担问卷(FBS)评价家庭负担,以家庭关怀度指数问卷(APGAR)评价家庭功能,以健康状况问卷(SF - 36)评定照料者的生活质量和心理负担,并与正常人家庭对照.结果 在FBS的6个因子中,家庭经济负担、家庭日常活动...     

The Perceived Rehabilitation Needs of People with Schizophrenia in Hong Kong: Perspectives from Consumers and Care-givers

A quantitative survey was conducted to investigate the perceived rehabilitation needs based on people with schizophrenia and their caregivers. A total of 194 persons with schizophrenia and 83 caregivers were recruited by convenience sampling to complete the two newly developed questionnaires for this purpose which included the Perceived Rehabilitation Needs Questionnaire for People with Schizophrenia and the Perceived Rehabilitation Needs Questionnaire for Caregivers towards People with Schizophrenia respectively. The findings deepened the understanding of this area. Some policy and service development suggestions for mental health strategies in Hong Kong and the Asian-Pacific region were made.     

Measuring Perceived Rehabilitation Needs of Caregivers of People with Schizophrenia in Mainland China

This paper reports the development and validation of the Wuxi version of the Rehabilitation Needs Questionnaire for Caregivers of People with Schizophrenia (PRNQ-C-WX) based on the original Hong Kong version (PRNQ-C-HK). PRNQ-C-WX was validated by exploratory factor analysis (EFA) using a convenience sample consisting of 200 caregivers of people with schizophrenia. EFA yielded an eight-factor solution accounting for 63.8 % of the total variance which resulted in a 50-item PRNQ-C-WX. The questionnaire has excellent internal consistencies. Its factor structure is similar to the Hong Kong version. Some suggestions for policy, service and research development in mental health in mainland China are made.     

Psychological distress and subjective burden of caregivers of people with mental illness: the role of affiliate stigma and face concern

The present study tested the mediating role of affiliate stigma on the relationships between face concern with psychological distress and subjective burden among caregivers of people with severe mental illnesses. One hundred and eight Chinese caregivers in Hong Kong were surveyed. Based on Baron and Kenny’s (J Pers Soc Psychol 51:1173–1182, 1986) approach, affiliate stigma was found to serve as a partial mediator between face concern and caregiver distress and a full mediator between face concern and subjective burden. Cultural linkage of stigma and caregiver outcomes was identified, suggesting that researchers and practitioners should use a culturally sensitive approach to understand caregivers’ experience and alleviate their stigma.     

Use of mental health and primary care services by caregivers of patients with bipolar disorder: a preliminary study

OBJECTIVES: Caring for a relative with schizophrenia or dementia has been associated with reports of caregiver burden, symptoms of anxiety, depression, poor self-rated health, and elevated health service use; however, comparable data for caregivers of relatives with bipolar disorder are lacking. This study reports preliminary data on the health, psychological distress and health service use of caregivers of patients with bipolar disorder. It additionally evaluates the relationship of the level of burden caregivers report experiencing to their use of health services, controlling for level of psychological distress and health status. METHODS: Subjects were primary caregivers of 264 patients with Research Diagnostic Criteria-diagnosed bipolar disorder and their bipolar relatives. Caregiver mental health and primary care service use were assessed retrospectively for the 7-month period prior to inpatient or outpatient admission of the bipolar patient. Caregiver depression, anxiety, medical conditions and patient symptomatology were assessed as well. RESULTS: Hierarchical logistic regression analysis demonstrated that caregiver burden significantly increased the likelihood of mental health service use (OR = 13.53, p < 0.001) even after controlling for caregiver psychological distress and medical conditions, while anxiety and depression level, but not burden, significantly increased the likelihood of primary care service use, controlling for other variables (OR = 1.72, p = 0.02). CONCLUSIONS: Burdens experienced by family caregivers appear to increase use of health services, and presumably cost, and may be reduced by psychosocial intervention.     

Perceived burden and quality of life of caregivers in obsessive-compulsive disorder

Aim: The study aimed to examine the family burden and quality of life (QOL) of caregivers of patients with obsessive–compulsive disorder (OCD). Methods: A cross‐sectional assessment of 50 patients with OCD and their caregivers was carried out. The severity of OCD was assessed using the Yale–Brown Obsessive Compulsive Scale. The caregivers were assessed using the Family Burden Interview Schedule and the World Health Organization Quality of Life BREF version (WHOQOL‐BREF). Results: Fifty‐six percent of caregivers reported a high objective burden. Severity of illness correlated with burden and impaired QOL of caregivers. Age of patient, longer duration of illness and longer duration of treatment were predictive of poorer QOL of caregivers in the physical health domain. Greater objective burden, disruption of family leisure and interaction due to OCD led to significantly poorer QOL in all domains in caregivers. Higher financial burden, perception of poorer mental health, and higher subjective burden were predictive of poorer physical, general health and general and psychological QOL, respectively. Conclusions: The study provides important insights into the QOL and perceived burden of caregivers of OCD patients. It highlights the need for improving the quality of care not only for patients but also for primary caregivers.     

Factors related to cognitive reserve among caregivers of severe acquired brain injury

Stroke is one of the severe cause of motor and cognitive disabilities. These type of disabilities occurred a strong impact on whole family system. Caregiver burden may determine in relatives of patients with brain injury a decreasement of mental and physical health. The present study aims to better clarify the mechanism through which chronic stress influence caregivers’ cognitive functioning and how the psychological and cognitive resources may represent as a predictive factor. Caregivers were submitted to neuropsychological tests that evaluated level of mental health ad level of burden. Our results showed a significant correlation between cognitive reserve and self-efficacy skills in health care of patients. Findings suggested that the caregiver burden and the level of general distress influenced the cognitive performance. An improvement of cognitive functions is associated with a reduction of self-efficacy skills, causing a caregiver burden improvement.     

Persistence of Mental Health Service Use among Latino Children: A Clinical and Community Study

This study examined predictors of treatment persistence (receiving mental health services at two time points one year apart) among children in Puerto Rico who had previously sought care for mental health concerns. Children and their primary caregivers completed interviews one year apart. Treatment persistence was lower among children recruited from community sampling (n = 137) than those children recruited from public and private clinics (N = 381). Persistence was associated with psychological measures of need and co-morbidity only in the clinical sample, while in both samples persistence was associated with measures of family burden and school functioning. In multivariate analyses, persistence was associated in both the clinical and community samples with a measure of school functioning but not with diagnosis, impairment, or parental concerns about the child’s behavior.     

Subjective Burden of Caregivers of Demented Patients: Effects of Coping and Family Adaptability

Abstract: I tested a hypothesis that coping strategies with psychological stresses in home care and a cognition of family adaptability are associated with a subjective burden based on 31 family caregivers of patients with dementia. Caregivers who gave up home care felt a significantly higher burden and used more confrontative coping than those who did not. The caregivers, who recognized the family system as flexible, felt less burden than those who did as rigid. This study suggested that the subjective burden of caregivers of demented patients accounted for not only by the severity of dementia of patients but also by the confrontative coping and cognition of family system of the caregivers.     

Reliability and validity of the subjective burden scale in family caregivers of elderly relatives with dementia

The reliability and validity of the Subjective Burden Scale (SBS) were investigated in 255 Japanese family caregivers of elderly relatives with dementia. Values of the Cronbach's alpha reliability, split-half reliability (r), and test-retest reliability (r) were .87, .80, and .72, respectively. The SBS score was significantly positively correlated with the degree of mental health, which was assessed with the Japanese version of the 60-item General Health Questionnaire (r = .41). The family caregivers who gave up the caregiving of their relatives showed significantly higher SBS scores than those who did not. The SBS scores for caregivers indicated satisfactory predictive validity both in the degree of their mental health and in the prospects of family caregiving about 6 months later. These findings suggest that the SBS is adequately reliable and valid and can be used to assess the subjective burden of Japanese caregivers.     

Exploring the burden of the primary family caregivers of schizophrenia patients in Taiwan

Aim: The purpose of the present study was to investigate the burden of the primary family caregivers of schizophrenia patients and the factors that affect caregiver burden. Methods: A total of 126 pairs of patients and their primary family caregivers were recruited from the day care and acute wards of two teaching general hospitals. Demographic information was collected. All patients went through an interview with a senior psychiatrist using the Brief Psychiatric Rating Scale (BPRS). The Caregiver Burden Inventory–Brief Version and the Chinese Health Questionnaire (CHQ) were used to assess the caregiver burden and the caregivers' health condition. One‐way analysis of variance and Pearson correlation were used to analyze the relationship between demographic factors and caregiver burden. Multiple regression was used to analyze predictors of burden of caregivers. Statistical significance in this study was defined as P ≤ 0.05. Results: The caregiver burden scores (25.9 ± 10.7; range, 3–61) indicated a moderate burden level. Among the five dimensions of burden, caregiver anxiety (2.13 ± 0.86) was the highest, followed by dependency of the patient (1.85 ± 1.02), feeling shame and guilt (1.56 ± 1.02), and family interference (1.43 ± 0.83). The burden level of stigmata (1.32 ± 1.24) was the lowest. The first three rankings of burden were ‘I worry about his/her safety when he/she is alone’ (2.26 ± 1.15), ‘I worry that she/he will become sick at any time’ (2.23 ± 1.10), and ‘I feel he/she depends on me very much’ (2.02 ± 1.29). Patient satisfaction with medical staff support (P = 0.00), CHQ scores of the caregivers (P = 0.00), and the BPRS scores of the patients (P = 0.01) were significantly associated with the caregiver burden scores. Conclusions: The physical and mental health condition of the primary family caregiver of schizophrenia patients was the most important factor determining the caregiver burden level. Comprehensive multidisciplinary care of chronic schizophrenia patients is needed, care that supports the needs and improves the psychiatric symptoms of the patients, helps to decrease the caregiver burden level, and facilitates family participation in treatment.