ORIGINAL ARTICLE

Factors of caregiver burden and family functioning among Taiwanese family caregivers living with schizophrenia Chiu-Yueh Hsiao and Yun-Fang Tsai

Aims and objectives. To assess the degree of caregiver burden and family functioning among Taiwanese primary family caregivers of people with schizophrenia and to test its association with demographic characteristics, family demands, sense of coherence and family hardiness. Background. Family caregiving is a great concern in mental illness. Yet, the correlates of caregiver burden and family functioning in primary family caregivers of individuals with schizophrenia still remain unclear. Design. A cross-sectional descriptive study. Methods. A convenience sample of 137 primary family caregivers was recruited from two psychiatric outpatient clinics in Taiwan. Measures included a demographic information sheet and the Chinese versions of the Family Stressors Index, Family Strains Index, 13-item Sense of Coherence Scale, 18-item Caregiver Burden Scale, Family Hardiness Index and Family Adaptability, Partnership, Growth, Affection, and Resolve Index. Data analysis included descriptive statistics, Pearson’s product-moment correlation coefficients, t-test, one-way analysis of variance and a stepwise multiple linear regression.3 Results. Female caregivers, additional dependent relatives, increased family demands and decreased sense of coherence significantly increased caregiver burden, whereas siblings as caregivers reported lower degrees of burden than parental caregivers. Family caregivers with lower family demands, increased family hardiness and higher educational level had significantly enhanced family functioning. Sense of coherence was significantly correlated with family hardiness. Conclusions. Our findings highlighted the importance of sense of coherence and family hardiness in individual and family adaptation. Special attention needs to focus on therapeutic interventions that enhance sense of coherence and family hardiness, thereby improving the perception of burden of care and family functioning. Relevance to clinical practice. Given the nature of family caregiving in schizophrenia, understanding of correlates of caregiver burden and family functioning would help provide useful avenues for the development of family-focused intervention in psychiatric mental health nursing practice. Authors: Chiu-Yueh Hsiao, PhD, RN, Associate Professor, School of Nursing, College of Medicine, Chung Shan Medical University and Department of Nursing, Chung Shan Medical University Hospital, Taichung, Taiwan; Yun-Fang Tsai, PhD, RN, Professor, Consultant, School of Nursing, College of Medicine, Chang Gung University, Kwei-Shan, Tao-Yuan and Department of Nursing, Chang Gung Memorial Hospital, Keelung City, Taiwan, Republic of China

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What does this paper contribute to the wider global clinical community?

• Primary family caregivers who





were female, had additional dependent relatives, encountered greater family demands and had a lower sense of coherence expressed greater burden, whereas sibling caregivers reported lower degrees of burden than parental caregivers. Family functioning was associated with decreased family demands and enhanced family hardiness and education. Findings underscore the importance of resiliency-focused strategies in strengthening sense of coherence and family hardiness of primary family caregivers to promote adaptation to schizophrenia.

Correspondence: Yun-Fang Tsai, Professor, Consultant, School of Nursing, College of Medicine, Chang Gung University, 259, Wen-Hwa 1st Rd, Kwei-Shan, Tao-Yuan, Taiwan 333, Republic of China. Telephone: +1 886 3 2118800 ext: 3204, 5958. E-mail: [email protected]

© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1546–1556, doi: 10.1111/jocn.12745

Original article

Caregiver burden and family functioning

Key words: caregiver burden, family functioning, family hardiness, sense of coherence Accepted for publication: 12 October 2014

Introduction

Background

Globally, schizophrenia is a severe, persistent and disabling mental illness affecting approximately 3–66 of 1000 persons (McGrath et al. 2008). In Taiwan, approximately 115,733 people (496% of the population) were diagnosed with schizophrenia as of 2012 (Ministry of Health & Welfare, 2014). The impairments of cognition, speech, emotional responsiveness, and social and occupational functioning caused by schizophrenia limit the abilities of affected individuals to function independently; consequently, they require support and care from others (National Institute of Mental Health 2009). With a trend towards community-based mental health care, individuals with schizophrenia often live with or maintain contact with their close relatives or friends (Hou et al. 2008, Huang et al. 2009). Nevertheless, mental health services may not be readily available to meet the special health care needs and expectations of affected individuals and their families (Huang et al. 2009). Chinese culture is deeply rooted in Confucian values with an emphasis on the importance of family harmony and the care of impaired relatives (Huang et al. 2009, Chan 2011). Family members, particularly primary family caregivers, often take on considerable responsibilities of providing unpaid assistance for their relatives suffering from schizophrenia (Hou et al. 2008, Huang et al. 2009, Chan 2011). In addition to the management of the patients’ unpredictable psychiatric symptoms (e.g. violent or disturbing behaviours), most family caregiver stake on multiple roles. The accumulation of caregiving tasks results in profound burdens for family caregivers (Chan 2011). Many family caregivers, particularly in Asian countries, have reported moderate to high degrees of burden in the care of relatives diagnosed with schizophrenia (Chien et al. 2007, Hou et al. 2008). Such caregiving activities carry an enormous burden to individual family caregivers and impair the family’s daily routines and dynamics. Additional research is needed to examine the potential influencing factors of caregiver burden and family functioning to identify those at risk of maladaptation as well as amplify the strengths of primary family caregivers to successfully adapt to schizophrenia.

Responsibilities of caring for relatives with mental illness are generally shaped by Confucianism that advocates for the interdependence, harmony and integrity of the family in Taiwanese society (Huang et al. 2009). In Asian cultures, stigma attached to mental illness and in particular, schizophrenia as a source of shame remains salient (Yang 2007, Hanzawa et al. 2010). It is evident that persons with schizophrenia pose a high risk of suicide, particularly those who have previously had suicidality (Hor & Taylor 2010). An early systematic review estimated that 49–101% of schizophrenics are at risk for suicide during their lifetime (Hor & Taylor 2010). Further, suicide places an enormous stigma on both suicidal patients and their families (Sun et al. 2008). As such, families may feel trapped and embarrassed to avoid disclosing their concerns and help-seeking as well as underuse of mental health care services (Chien et al. 2007, Chan 2011). Given aetiological beliefs of mental illness and Chinese cultural values of preserving ‘face’ and familial relationships, stigma against schizophrenia in Taiwanese societies poses a considerable burden to family caregivers and conflicts in the context of family caregiving (Huang et al. 2009). Family caregivers of individuals with schizophrenia encounter multifaceted caregiving challenges that cause physical, mental, social and financial impacts (Hou et al. 2008, Chan 2011, Hadrys et al. 2011) as well as changes in the functional dynamics of the family (Trangkasombat 2006). Such impacts may undermine the daily functioning of family caregivers and quality of caregiving, which in turn increases the risk of deterioration of progress in people with schizophrenia (Lauber et al. 2005). Given the dual importance of caregiving for both family caregivers and the affected individuals, it is of considerable interest to further benchmark the impact of individuals with schizophrenia on family caregivers as consequences of caregiving. Caregiver burden, especially involving close family members, is a global issue that has been linked to inevitably deleterious caregiving outcomes of mental illnesses for family caregivers (Chan 2011). In their attempts to provide care for relatives with schizophrenia, family caregivers feel more burdened than those caring for relatives with affective disorders (Grover et al. 2011). Family caregivers often encoun-

© 2014 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1546–1556

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Original article

Caregiver burden and family functioning

We express our sincere appreciation to the research participants for their corporation. Sincere thanks to National Science Council, Taiwan for funding this study (99-2410-H-040-017).

cal_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content and (3) final approval of the version to be published.

Disclosure

Conflict of interest

The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/ethi-

The authors declare no conflicts of interest.

Acknowledgements

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Issues in Mental Health Nursing 33, 157–164. Grover S, Chakrabarti S, Aggarwal M, Avasthi A, Kulhara P, Sharma S & Khehra N (2011) Comparative study of the experience of caregiving in bipolar affective disorder and schizophrenia. International Journal of Social Psychiatry 58, 614–622. Hadrys T, Adamowski T & Kiejna A (2011) Mental disorder in Polish families: is diagnosis a predictor of caregiver’s burden? Social Psychiatry & Psychiatric Epidemiology 46, 363–372. Han K, Lee P, Park E, Park Y, Kim Y & Kang H (2007) Family functioning and mental illness-a Korean correlational study. Asian Journal of Nursing 10, 129–136. Hanzawa S, Bae JK, Tanaka H, Tanaka G, Bae YJ, Goto M, Inadomi H & Nakane H (2010) Personal stigma and coping strategies in families of patients with schizophrenia: comparison between Japan and Korea. Asia-Pacific Psychiatry 2, 105–113. Hor K & Taylor M (2010) Suicide and schizophrenia: a systematic review of rates and risk factors. Journal of Psychopharmacology 24, 81–90. Hou SY, Ke CL, Su YC, Lung FW & Huang CJ (2008) Exploring the burden of the primary family caregivers of schizophrenia patients in Taiwan. Psychiatry and Clinical Neurosciences 62, 508–514. Hsiao CY & Van Riper M (2011) Individual and family adaptation in Taiwanese families living with Down syndrome. Journal of Family Nursing 17, 182–201. Huang XY, Hung BJ, Sun FK, Lin JD & Chen CC (2009) The experiences of carers in Taiwanese culture who have

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criteria for family caregivers were as follows: (1) to have cared for the affected individuals who had been hospitalised within the past three months and (2) to have mental impairments.

Data collection The study was approved by institutional review boards of two hospitals. Eligible participants were invited to participate and given an opportunity to discuss the project. Participants were required to give written informed consent. Participants were informed that they could withdraw from this study at any time without consequences. Confidentiality and personal identity were assured. Upon obtaining consent, a face-to-face structured interview was conducted to collect information.

Measures

Caregiver burden and family functioning

Index was 081 and the Family Strain Index was 082 (Hsiao & Van Riper 2011). In this study, Cronbach’s alphas for the Family Stressor Index and the Family Strain Index were 075 and 083 respectively. Sense of coherence Sense of coherence was measured by the Chinese version of the 13-item Sense of Coherence Scale (SOC-13) (Tang & Dixon 2002). It is composed of comprehensibility, manageability and meaningfulness components. The SOC-13 is a seven -point Likert-type scale ranging from seldom or never (1) to very often or always (7). The total scores range from 0–91, with a higher score reflecting more successful coping with stressful situations. Cronbach’s alphas of the SOC were 070–092 in a variety of samples (Eriksson & Lindstr€ om 2005). In this study, Cronbach’s alphas for the overall score were 092 and 082–085 for the subscales.

Demographic characteristics Demographic information included (1) patients’ ages, gender, times of previous hospitalisation and length of mental illness and (2) family caregivers’ ages, gender, kinship, co-residence, education, monthly household income, awareness of patient suicidality, additional dependent relatives, co-caregivers and caregiving duration. A specific question regarding family caregivers’ awareness of patient suicidality was asked: ‘Has your family member with schizophrenia ever thought about, threatening, or attempting suicide?’ If family caregivers answered ‘yes,’ they were identified as being aware of patient suicidality. Family caregivers were also requested to identify if any family member was also involved in the caregiving activities as a co-caregiver.

Family hardiness The Chinese version of the 20-item Family Hardiness Index (FHI) (Chen 2008) was used as an indicator of FH. Each item ranked on a four-point scale (0 = false, 1 = mostly false, 2 = mostly true and 3 = true). Nine items (1, 2, 3, 8, 10, 14, 16, 19 and 20) were reversed. Total scores range from 0–60, with higher scores indicate higher FH. The items are divided into three subscales: (1) commitment, (2) control and (3) challenge. Validity and reliability have been established by means of positive relationship with measures of family functioning (McCubbin et al. 1996), with Cronbach’s a ranging from 079–082 (McCubbin et al. 1996, Chen 2008, Puasiri et al. 2011). In this study, Cronbach’s a of the total scale was 089 and ranged from 075–085 for the subscales.

Family demands The Chinese version of the 10-item Family Stressors Index and the 10-item Family Strains Index (Hsiao & Van Riper 2011) are designed to assess the perceptions of individual and family life changes in relation to both normative (e.g. birth of a child) and unpredictable, disruptive family life events (e.g. having a relative with mental illness) that have occurred in the previous 12 months. Both the Family Stressors Index and the Family Strains Index were a brief version of the 71-item Family Inventory of Life Events and Changes (FILE) (McCubbin et al. 1996). Each item is assigned a standard weight based on its magnitude of family life stressors and strains. Total scores are summed and divided by the total numbers of items, with scores ranging from 6–92. Higher scores reflect increased proportion of family demands. Cronbach’s alpha of the Family Stressor

Caregiver burden Caregiver burden was assessed by the 18-item Caregiver Burden Scale-Brief (CBS-B) tapping five dimensions: family disruption, stigma, guilt, caregiver strain and client dependency placed on family caregivers of relatives with mental illness (Song 2002). Each item is scored from 0 (never)–4 (almost always). Total scores were the sum of responses for 16 items and two items were unscored. The score range is 0–64, with higher scores indicating greater caregiver burden. Scores are classified into four levels: no burden (≦7), mild to moderate burden (8–20), moderate burden (21–32), moderately severe burden (33–44) and severe burden (≧45). Cronbach’s alphas of the overall scale and each dimension were 065–095 (Song 2002, Hou et al. 2008). For this study, Cronbach’s alphas for the overall score were 093 and between 076–089 for the subscales.

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Family functioning Family functioning was measured by the Chinese version of the Family Adaptability, Partnership, Growth, Affection, and Resolve Index (Family APGAR Index; Chen et al. 1980), which detects the primary family caregiver’s satisfaction with aspects of family functioning: adaptation, partnership, growth, affection and resolve. It is a five-item, three-point scale ranging from 0 (hardly never)–2 (always). Total scores range from 0–10, with high scores indicating better satisfaction with family functioning. Scores of 7 or above are viewed as indicative of functional families. Cronbach’s a was 089 for families of children with Duchenne muscular dystrophy (Chen 2008). Cronbach’s a for the present sample was 089.

Statistical analysis STATISTICAL PACKAGE FOR THE SOCIAL SCIENCES version 17.0 software (SPSS Inc, Chicago, IL, USA) was applied for data entry and analysis. Descriptive statistics were used to summarise the demographic characteristics and study variables. Pearson’s product-moment correlation coefficients were calculated to examine the associations between the continuous variables of demographic characteristics, family demands, SOC, FH, caregiver burden and family functioning. The differences in caregiver burden and family functioning among the nominal variables of demographic characteristics were tested using independent t-tests and one-way analysis of variance (ANOVA). Effect sizes (ESs) for independent t-tests and one-way ANOVA were calculated by Cohen’s d (02: small; 0, 5: medium; 08: large) and Cohen’s f (01: small, 025: medium, 04: large) to assess the magnitude of the significant group differences respectively (Cohen 1988). Due to the lack of sufficient evidence to determinate the order of variables entering into the equation, two stepwise multiple linear regression analyses were applied to identify the factors of caregiver burden and family functioning respectively. The assumptions for multiple regressions were checked with a residual analysis. The assumptions of normality, independence, linearity and homoscedasticity were generally met. All of the assumptions of regression analysis were met. Multicollinearity was assessed for all variables by means of correlation coefficients, tolerances and the variance inflation factors. Neither assumptions were violated nor was multicollinearity detected. Statistical significance was determined at a value of p < 005.

Table 1 Characteristics of patients and family caregivers and main study variables (n = 137) Variables

n (%)

Characteristics of patients Age (years) Gender Male Female Number of previous hospitalisation

Factors of caregiver burden and family functioning among Taiwanese family caregivers living with schizophrenia.

To assess the degree of caregiver burden and family functioning among Taiwanese primary family caregivers of people with schizophrenia and to test its...
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