Social support and caregiving circumstances as predictors of caregiver burden in Taiwan

Abstract

Previous research has failed to consider the importance of caregiving circumstances and their impact on social support and caregiver burden. Hence, this study aimed to investigate the association between perceived and received social support and caregiver burden. This cross-sectional study was carried out on 301 family caregivers. Data was collected using structured questionnaires which included a Social Support Scale, Family APGAR (adaptation, partnership, growth, affection, resolve), and Caregiver Burden Scale. Findings showed that the caregiver burden was best predicted by two perceived and one received social support variables. Caregiver burden was likely to be higher when the caregivers had lower levels of family function and social support. Perceived social support was better at predicting caregiver burden than received social support. Our study indicates that family function has an important influence on caregiver burden. Further studies on family based interventions are needed to determine approaches for effectively reducing caregiver burden. The role of perceived social support in the health of caregivers should be further investigated as a possible protective determinant in the caring process.

Introduction

Family members who act as caregivers play a significant role in caring for ill or incapable relatives. In Taiwan, despite a trend towards institutionalized care for ill or incapable people, the absolute numbers placed in such care remains small (Yeh et al., 2002). The majority of people are still cared for at home by their family members, in line with cultural norms. Providing care to ill or incapable family members may have a positive impact on family caregivers, such as increased self-respect or self-satisfaction from fulfilling a responsibility (Kuuppelomaki et al., 2004). Many researchers, however, have argued that caregiving may have a negative impact on the caregiver. Previous studies have showed that caregivers have poor physical health and frequently experience social, emotional, and financial losses (Wallsten, 2000, Bullock, 2004).

Caregiver burden is characterized as the persistent hardship, stress, or negative experiences resulting from the provision of care by caregivers (DiBartolo, 2000). Many studies have identified negative correlations between caregiver burden and health among caregivers. Caregiver burden is strongly related to sleep disturbances (Happe and Berger, 2003) and depressive symptoms (Song et al., 1997). Morimoto et al. (2003) reported that caregiver burden is negatively related to health-related quality of life, particularly mental health. Caregivers need support and information in order to understand the diagnosed conditions of care recipients. They need to learn new skills and change their lifestyles.

The role of social support in reducing caregiver burden has been widely acknowledged (Pohl et al., 1994). In a study, caregivers of cancer patients often reported a lack of social support, due to health professionals and others focusing primarily on the needs of patients (Northouse et al., 2000). Social support has been reported to have a buffering effect on caregiver burden (Song, 1999, Edwards and Scheetz, 2002) and caregivers who obtain more social support report a lower burden. However, more research is needed into caregivers’ needs regarding social support.

Ergh et al. (2002) divided social support into two categories: perceived and received social support. Perceived social support refers to a person's appraisal of the available social support, whereas received social support refers to actual and substantial social support (Ergh et al., 2002). Both perceived (Pohl et al., 1994, Li et al., 1997) and received social support (Edwards and Scheetz, 2002) have been reported to have a positive impact on caregiver burden. However, many studies have demonstrated that perceived social support can better predict health outcomes and distress than received social support among caregivers (Sander et al., 1997, Ergh et al., 2002). In addition, Cohen and Wills (1985) claimed that when a person perceives adequate support and believes that the support would protect him/her, a threatening event might not become stressful. Received support does not seem to have the same effects as perceived support over a period of time.

Instrumental, emotional, and informational supports are the most commonly cited social support functions (Chak, 1996). However, not all functions of social support are equally associated with caregiver burden (Thompson et al., 1993). Thompson et al. (1993) found that instrumental support and emotional support were ineffective in reducing caregiver burden in their sample. Nevertheless, a lack of material aid or supportive feedback may negatively influence the relationship between caregivers and ill or incapable family members. Rose (1997) found that informational support could reduce caregiver burden by increasing the caregiver's personal control. Social support seems important for caregivers in diminishing conflict between caregiver and care-receiver, and specific functions of social support may be more effective when they meet the demands of related circumstances. Although previous studies have established a relationship between social support and caregiver burden, these studies have failed to consider the importance of caregiving circumstances, which may lead to changes in the social support provided to caregivers and the burden perceived by caregivers.

The relationship of caregiving circumstances, such as duration of care and hours of care per day, with caregiver burden have been investigated. It was found that caregivers who had been involved in caregiving for an extended period of time perceived a higher burden than those who had not (Faison et al., 1999, Yeh et al., 2002). There is also a positive correlation between caregiver burden and the hours of care provided per day by caregivers to ill or incapable family members (Stueve et al., 1997). According to Liu and Tinker (2001), caregiving can be divided into two types: personal and functional caregiving. Personal caregiving includes bathing, dressing and feeding; functional caregiving includes meal preparation, housekeeping, and running errands. For this study, it was hypothesized that the provision of different types of care would be associated with different levels of caregiver burden.

An extensive literature review revealed several limitations in studies of family caregivers. Firstly, studies have tended to focus on caregivers of specific ill populations, such as people with Alzheimer's disease, and few studies have examined family caregivers of ill or incapable family members in general. Secondly, although studies have established a relationship between social support and caregiver burden, only a few studies have concentrated on the relationship between the two dimensions of social support, perceived and received social support, and caregiver burden. Lastly, prior research has failed to consider the importance of caregiving circumstances and their impact on social support and caregiver burden. The main goal of this study was to examine whether caregiver burden is related to perceived and received social support, taking into consideration caregiving circumstances.