Factors associated with health-related quality of life among Chinese caregivers of the older adults living in the community: a cross-sectional study

In recent times, China’s concern about the national burden placed on the country by the elderly has heightened. The population of the elderly in China has been aging dramatically, and the number of Chinese people aged 60 and over will increase to 400 million by the year 2050, accounting for 25% of the whole population[1].

Advances in healthcare and nutrition, combined with the one child policy, have led to a small family size, the increase of empty-nest families as well as elderly people living alone. These have caused a corresponding rise of the elderly dependency ratio. The result is a population bulge called the "4-2-1" phenomenon, in which one child is supporting two parents and four grandparents. Older adults are at a high risk for chronic diseases. Once the disease occurs, the high cost of care is overwhelming for many families, which could result in great financial and caregiving burden. Owing to the paucity of formal institutional methods for long-term care, and due to the culture of filial piety and the Confucianism spirit in China, family members are usually left with the responsibilities of caring for the elderly.

Caring for the elderly not only affects caregivers’ daily lives, but also poses dramatic and considerable psychological and physical challenges. The negative effects of such strain affect their present and future daily life and health. Caregiving requires much time and effort, great material and emotional expenditure, and also hinders caregivers’ social engagements. The role of caregiving can be highly stressful, burdensome, and hence, compromises the caregiver’s quality of life, which could lead to considerable physical, psychological and social impairments[2]. Research has consistently reported that increased caregiver burden was associated with a decline of well-being and quality of life in many countries[3, 4]. Schulz found that caregivers who were providing care and experiencing caregiver burden and strain had a 63% higher risk of mortality than non-caregivers[5]. This, in more cases than expected, exceeds that of the elderly themselves. Numerous studies have also shown that caregivers have a higher risk of both physical and mental health problems, as compared to non-caregivers[6‐8]. Caregivers are usually the hidden victim of the disease, and so have been labeled the “hidden patients”[9].

Sense of Coherence (SOC) during the process of caregiving has yielded various findings as to caregivers’ health. Sense of coherence is the ability of caregivers to mobilize their coping resources during periods of caregiving[10, 11]. Antonovsky[12] found that people with a stronger SOC despite extremely pressing circumstances such as providing caregiving to their family members could positively deal with stress and protect health. Caregivers with a strong SOC, which refers to their ability to respond to stressors by the appropriate use of adaptive coping resources, can avoid breakdown, alleviate mental health problems and promote physical health.

The effects of caring for older adults on caregiver’s health have moved to the forefront nowadays in Western countries, Japan and Taiwan. However, very little is known about caregivers of older adults in mainland China. Thus, this study aims to describe the quality of life (QOL) among Chinese caregivers of older adults and explore the predictors of caregivers’ QOL. Information derived from this study may provide evidence for policymakers to attenuate caregiver burden, promote quality of life and well-being among caregivers.

The results from this study indicate that most Chinese caregivers of the elderly suffer from impaired QOL. This was much lower than the QOL levels of the general mainland Chinese adults, and the Chinese caregivers for the elderly in Hong Kong[24, 25]; but higher than the caregivers of stroke patients[26]. And this was consistent with Saunders’ study which found that the caregivers of the heart failure patients felt their health had worsened because of caregiving[27]. Moreover, mental QOL of the caregivers was disrupted more seriously than physical QOL.

In this study, Subjective Caregiver Burden was the strongest predictor of both PCS and MCS. Both physical and mental QOL of caregivers were best predicted by Subjective Caregiver Burden and the Demographic Characteristics of Caregivers. In addition, caregivers’ mental QOL was also predicted by the patients’ characteristics. These findings suggested that not only the objective aspects of caregiving, but also subjective caregiver burden were associated with caregivers’ QOL. Caregiving has disproportionate burdensome effects on all aspects of QOL. Additionally, individual personal coping capability like SOC played a positive role in alleviating burden and could optimize QOL. This is in support with previous studies[23, 28] that positive beliefs influence the appraisal of stressful situations and so, could promote health and well being.

In this study we found that the functional dependency of the elderly had significant impacts on the caregivers’ physical health. Our finding is consistent with the existing literature that patients' functional state was significantly related to caregivers' psychosocial burden and was linked to caregiver’s QOL[29, 30]. This takes the results of existing literature further in showing that caring for the elderly with low daily living abilities, is associated with caregivers’ poor physical QOL. Caregiving in assistance for daily living, housekeeping, transportation and health care, time spent in caregiving everyday and care duration in the block 3 of objective caregiving loads were not associated with PCS, while the number of caregivers was the predictors of PCS. Caregivers caring for the elderly with high functional dependency engaged in more physical expenditure, which usually led to lack of physical vigor and strength. Therefore, the degree of dependency for assistance of daily living can well predict physical well being of caregivers. Further interventions to improve caregivers’ QOL should target at improving poorer functioning of the elderly.

Currently in China there are no community services or long-term care services for neither the elderly nor chronically ill patients, which makes it difficult for older adults and their families to afford expensive medical treatment and care tasks. Sometimes caregivers had to stop working in order to give full-time care to the elderly. In the present study, we found that nearly 30% of the caregivers only took care of the elderly, they are more likely to spend more time taking care, experiencing physical conflicts of caring tasks, which may be the cause of poor physical health. Lower household income and loss of employment due to caregiving added to caregivers’ susceptibility and vulnerability to perceive the weight of the burden and finally result in decreased physical health. Another reason might be that the employed caregivers could get the benefits of working when giving care to older adults, which was in agreement with previous study[31]. This finding sheds light on the effects of income and employment on caregiver’ QOL.

Caregivers suffering from chronic diseases usually encountered numerous negative repercussions on both physical and mental health. The most likely reason was that their disease put them at a higher risk to lose physical strength and vitality. This subsequently resulted in decreased physical and mental health[23, 32, 33]. In China, most Chinese caregivers neglected their own health status[33], focusing more, if not completely, on the illness of the elderly. In this frame of mind they did not perceive the impacts of this placed on them, although the physical or mental evidence was present. Hence, the caregivers’ physical and mental well being were decreased due to an increased risk of stress-related mortality.

The caregiver’s relationship with the elderly was strongly related to caregivers’ physical and mental health. In this study, adult children of the elderly accounted for the majority of the family caregiver (66.5%). In China, it is an obligation to provide care for the elderly, owing to the Confucian thought of filial piety and the one-child policy. The adult children of the elderly take upon themselves heavy caring obligations. They have to sacrifice themselves to repay their parents[34], resulting in their physical and mental health being affected greatly.

In this study, we also found that living with the elderly was a significant predictor of physical QOL. The reason may be that, the caregivers living with the elderly, have to manage more stressful and difficult circumstance of caring, as well as spend more time and vigor undertaking the care tasks, which would compromise physical health.

Subjective Caregivers Burden held the most weight in interpretation of QOL, accounting for 12.1% and 17.3% of the observed variability in physical and mental QOL respectively. This is similar to Saunders’ study which shows that Caregiver Burden explained most (62%) of the variance in caregiver’ HRQOL of the older patients with heart failure[35]. Caregivers experiencing heavier burden, reported lower levels of both physical and mental QOL. Assuming the responsibility of caring for the elderly may result in significant disturbances on the caregivers’ time. This makes it difficult to find spare time away from their caregiving obligation to relax or attend social activities and relieve themselves. Caring for an ill family member may actually result in an imbalance between personal affairs and family function. Subjective Caregivers Burden compromises both the physical and mental health status of the caregivers, resulting in an increased risk of stress-related diseases. Caregivers, who view the elderly illness as problematic or consider treatment to be stressful, feel more uncertain and hopeless. They are also much more likely to appraise the caring responsibilities negatively and tend to be emotionally distressed and show physical symptoms. Personal subjective appraisal of the same stressors may be different owing to the caregivers’ abilities to self-regulate and cope. Subjective consciousness always determines psychological discomfort by determining whether the caregiver perceives the burden. As is consistent with other studies, it has been deduced that QOL in caregivers is closely associated with the caregiver’s subjective perception of the impact of caring for the elderly[36, 37].

In this study, SOC was moderately and positively associated with both physical and mental health, which was consistent with previous studies[38, 39]. It was found that caregivers with high SOC scores enjoyed high physical and mental QOL. Caregivers with a higher SOC, when providing caregiving to the elderly, could choose the adaptive coping response and mobilize resources to handle the difficult caring circumstances. SOC could help the caregivers feel more confident in dealing with the care tasks, improving their abilities to confront stressors. SOC is an orientation to life that can help caregivers avert emotional discomforts in stressful situations and protect both mental and physical health. The caregivers with high SOC consider stressors to be more predictable, and view the stressors as worthwhile and meaningful during the caring process[40].

It is highly recommended that health care resources for the elderly, supporting their caregivers be optimized, especially by delivering psychological counseling services. Targeted support for the most burdened caregivers, such as skills training to aid in alleviating burden and adaptive coping strategies should also be provided.

The present study bears the limitations that it is characterized by cross-sectional research, therefore one cannot derive any conclusions on the causality of the associations observed between caregiving burden and QOL. Moreover, variables related to nurses who could give assistance to caregivers in the communities were not considered because currently in China there are no nurses who assist caregivers in the caregiver role in the home setting. Finally, caregivers were selected by convenience sampling, which may limit the generalizability of this study to other populations. However, despite the above limitations, this study has notable strong points. Firstly, the sample size was quite large. Secondly, there was a high response rate, most likely due to the fact that face to face interviews allowed for more collection of information. Finally, 15 communities in 3 eastern cities (Shenyang, Yantai and Nanqiao of Shanghai) of China were selected. These cities are located at the north, central and south of eastern China. These three cities contain large elderly populations. Thus, this could represent the care situation of most eastern areas of China.

Most Chinese caregivers of the elderly experienced low levels of HRQOL. Mental QOL were disrupted more seriously than physical QOL. A decrease in caregiver burden ought to promote better management of caregiving tasks, and improve QOL. Also, coping capability, like SOC, are needed to decrease the impact of caregiving on HRQOL of Chinese caregivers.