Data presented by GLOBOCAN 2018 indicated that there would be an estimated 18.1 million new cancer cases all over the world in 2018 with approximately 24% of them residing in China [1]. This is largely due to population growth and increase in longevity, but another contributing factor is the change in disease patterns in China. China sees alarming increase in cancer incidence accompanied by the rise in survival rates of cancer patients due to diagnosis and treatment advances [2, 3]. The National Central Cancer Registry of China (NCCR) reported that among all cancer types in China, the age-standardized 5-year survival rate rose from 30.9% during the period between 2003-2005 to 40.5% a decade later (2012-2015) [4]. As a result, initiatives to support cancer survivors and their families have become imperative.
Throughout the course of illness - from the time of diagnosis to the time of death or recovery - cancer continues to undermine the well-being of cancer patients and their families. Even cancer survivors, who have completed the treatment, may experience cancer after-effects [5]. For example, the lasting outcomes of cancer include fear of disease recurrence, difficulties in adjusting and adapting to one’s new lifestyle, problems in social relationships with others, confusion about the survivorship period and the need for external assistance [6]. Continuous care from family members plays a crucial role in the process of effective long-term care, especially during the post-treatment period after patients’ return to their communities. The term “family caregivers (FCGs)” generally refers to individuals (e.g. adult children, spouses, parents, and siblings) who offer informal domestic care for patients. FCGs work without external compensation and might need to spend months or even years of time and energy on care and support for patients. Such caregiving demands may bring potentially negative impacts on physical, emotional, social or economic well-being of the caregiver [7].
Extensive research has shown that FCGs caring for cancer survivors bring positive influence on multiple aspects of patient care such as assisting further rehabilitation of patients, relieving household disease burden, contributing to the development of community long-term care, and lowering caregiving related costs for national healthcare system [8-10]. However, these benefits may sometimes come at the cost of hardship for the FCGs. Firstly, unlike full-time professional caregivers, for whom caregiving is usually their main employment and source of income, FCGs have to reconcile the role of family care provider with their formal employment. This “double” role of care provider and breadwinner puts additional pressures on FCGs and has significant financial implications for caregivers and their families. Further, by contrast with many other chronic diseases, cancer often causes sharp health deterioration within a relatively short period, which puts significant pressure on FCGs as they have to spend many hours a day offering intensive care [7, 11, 12]. Furthermore, cancer patients typically experience more complicated and malignant symptoms than do patients with other chronic diseases due to painful treatment methods and the nature of the disease. This compels their FCGs to spend a significant amount of time and effort on providing a wide range of care while constantly searching for more ways to improve patients’ health conditions [13]. Moreover, the specificity of illness trajectory of cancer (i.e. diagnosis, treatment, transition off treatment, survivorship, reoccurrence, secondary progression and end-of-life) can also be a source of additional stress for cancer patients and their families [14]. Cancer reoccurrence, for example, can unexpectedly increase the burden of care provision on FCGs. Individuals may have no evidence or symptom of the clinical course, and it might only be diagnosed again after several years. Given all these and other challenges associated with cancer care, it’s not surprising that FCGs often try to reduce or even give up employment completely.
Research showing that caring for cancer patients interferes with formal employment of FCGs is mainly concentrated in western countries. A Canadian study, for example, showed that more than 77% of FCGs missed work in the terminal period of cancer care [15]. Another study in the US estimated that 22% of FCGs decided to reduce their working time or even leave their jobs to provide care for the patients [16]. A more recent research in the US showed that nearly 25% of cancer survivors stated that their FCGs had to make working time accommodations because of providing care, and 8% of them had FCGs who had to take time off from work for more than 2 months [17]. Also, a study conducted in Canada showed that, compared to their colleagues who have no care responsibilities, FCGs demonstrated lower working productivity, because they were more exhausted; required more days off from work; and left the office earlier due to caregiving demands. In addition, FCGs are more likely to give up career advancements and opportunities for promotion, and may even leave their formal job to fully concentrate on their caregiving role [18].
In China, owing to its cultural context, most Chinese cancer survivors mainly rely on their family members for daily life support instead of hiring professionals [19-22]. Yet, to our best knowledge, there are still very few studies examining employment consequences for cancer FCGs in China. Research on Chinese FCGs mostly focuses on such factors as caregiving burden, caregiving activities, health-related quality of life (HRQoL), or mental health. For example, a study has shown that caregiving burden on Chinese FCGs caring for lung cancer patients is associated with patient age, type of health insurance, disclosure of the diagnosis to patients and the social support received by the caregiver [21]. Meanwhile, the type and amount of information disclosed to patients and FCGs was not found to be of particular importance [20]. Previous research also showed that offering informal care to family members may drastically reduce the quality of life of FCGs, and especially their mental health [23]. A survey of Chinese Canadians has indicated that caregiving activities affect employment and economic situation in the family [24], but these findings did not stimulate further research on this topic. It is still unclear what the specific employment effects of cancer caregiving are and how to identify high-risk groups of FCGs or differentiate between their level of vulnerability to employment-related challenges caused by caregiving activities. In addition, under the household registration system (Hukou) that separates rural residents and urban residents in modern day China, rural residents tend to face more occupational segregation and earnings inequality when compared with urban employees [25]. Long-term cancer care puts a great number of Chinese FCGs at a higher risk of reducing or quitting work altogether, thus further aggravating employment-related challenges that Chinese people face. Hence, a better understanding of cancer-related characteristics of patients and their relationship to employment changes among cancer FCGs could provide a fresh view into societal and economic implications of cancer caregiving in China. This, in turn, will provide policy relevant evidence for targeting interventions and help FCGs at risk of reduced or lost employment.
To sum up, this study aims to 1) examine the effect of long-term caregiving on the employment status of FCGs caring for cancer patients; and 2) identify which cancer-related characteristics are associated with negative employment changes among FCGs in post-treatment phase.