Data presented by GLOBOCAN 2018 indicated that there would be an estimated 18.1 million new cancer cases throughout the world in 2018, of whom approximately 24% reside in China . This is largely due to the growth and ageing of China’s population and changing risk factor patterns in the population. Accompanying the alarming rise in cancer incidence in China over the past few decades, the survival rate of cancer has also risen significantly due to efforts aimed at early cancer detection as well as advances in treatment [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 2003-2005 to 40.5% during 2012-2015 . As a result, the need to support cancer survivors has become more important. As a chronic disease, after the preliminary treatment of cancer has been accomplished, the illness trajectory of most cancers can continue to undermine the well-being of cancer survivors . Some of the lasting outcomes of cancer include fear of disease recurrence, facing difficulties adjusting and adapting to one’s new self and relationships with others, and feeling unprepared for the survivorship period and eager for external assistance . Thus, as a type of family resource, during the period of post-treatment after returning to the community, follow-up care from informal caregivers is valuable in helping meet the needs of the cancer patient. Generally speaking, individuals (e.g. adult children, spouses, parents, and siblings) who offer domestic care are called “family caregivers (FCGs)”, and they are required to spend several months or even years’ worth of time and effort without compensation or without concerns about their physical, emotional, social or economic well-being .
Currently, extensive research has shown that FCGs of cancer survivors can generate a positive influence by reducing the societal burden of treatment, reducing expenditures for the national healthcare system, and contributing to the further rehabilitation of cancer patients [8-10]. However, with these benefits may come risks or even harm. A majority of FCGs face stressors from many different directions [11-14]. A great number of FCGs may have to pay high medical expenses for their sick family member, lose wages or savings, provide time-consuming care without professional direction or support, experience overwhelming mental pressure, and/or suffer from deteriorations in their own quality of life [15-17]. Fletcher et al. stated that among 60 female FCGs in their study, 15.0% experienced physical aches and pains, 36.7% sleep paucity, 33.3% morning fatigue, and 30.0% evening fatigue . A previous study suggested that more than 80% of FCGs need to assist other family members in processing complex emotions . Another study showed that about 74% of FCGs suffered malign economic or social changes since the patients’ diagnosis . Thus, cancer survivorship could generate a substantial effect on not only the long-term health and quality of life of the patients themselves, but also on their FCGs. In such a case, coupled with a paucity of literature on this group during the survivorship period, solid research that emphasizes the standpoint of FCGs awaits exploration, particularly with regard to both the declining harm to FCGs and the patients they serve. Specifically, for the subgroup of FCGs who are employed, compared with full-time caregivers, multiple demands from caregiving and work result in the disruption of daily caregiving and occupational affairs without support and adequate resources, which ultimately subject them to extra pressures. Lai found that compared with non-caregiving peers, a lower working productivity was observed in the FCGs group, because they were more exhausted, required more days off from work, and left the office earlier to support their family members in post-treatment . Additionally, giving up career advancements and opportunities for promotion were also frequently found within this subgroup; some would even like to leave their jobs to concentrate fully on their caregiving role . Efforts to investigate this subgroup of FCGs have been pursued in Western countries. For instance, due to the liability of care and a shortage of extra time, more than 77% of FCGs in a study missed work in the terminal period of cancer care . A quarter of cancer FCGs modified their employment status because of providing care . Another study estimated that 22% of cancer FCGs decided to reduce their working time or quit their jobs .
In China, researchers have started to pay attention to the field of FCGs as well. For example, researchers have begun to investigate several factors connected with caregiver burdens, such as patient age, type of health insurance, and social assistance . Information conveyed between patients and their FCGs displayed that these interactions facilitate mutual understanding about the patient and the caregiver’s needs . Offering informal care to family members might drastically reduce the quality of life of FCGs, especially their mental health . Also, results from a survey which was conducted among Chinese Canadians showed that the Chinese culture did highlight filial obligation as an excellent tradition, but unfortunately, this kind of caregiving obligation was not without any other risks, the employment of FCGs could be regarded as a predictor of economic costs in the family . To our knowledge, however, Chinese scholars have not pursued an in-depth understanding of employed FCGs of cancer survivors. Employed FCGs have neither been supported by the national health system nor funded by non-profit institutions, both of which play small, but important, roles in post-treatment and the support of cancer survivors. In the first year after cancer diagnosis, even after attaining medical insurance reimbursement, the financial burden for lung cancer for a family amounted to nearly 107% of the whole annual household income in China . Additionally, owing to China’s cultural context, most Chinese cancer survivors mainly rely on their family members for daily life needs, rather than hiring professionals [24, 25, 29, 30]. Notably, much research is needed to assist policy makers and healthcare providers in developing interventions, directives and social care programs targeted at reducing the burden on FCGs.
Thus, the main aims of this study are to describe the effect of that providing cancer care to long-term cancer survivors has on the employment status of family caregivers, and then identify the cancer-related characteristics that influence FCGs’ employment status in the post-treatment phase in China.