Caregiver burden among Chinese family caregivers of patients with lung cancer: A cross-sectional survey
Introduction
Lung cancer is a serious disease threatening human health and lives. In 2012, there were approximately 1.8 million new lung cancer cases and over 1.6 million deaths worldwide (Torre et al., 2015). In China, lung cancer has been a leading cancer diagnosis and a leading cause of cancer-related death. According to a survey from the Chinese National Central Cancer Registry (NCCR), the crude incidence of lung cancer in China in 2010 was 46.08 per 100,000, with 605,946 new lung cancer diagnoses (Chen et al., 2015). Meanwhile, the crude mortality rate was 37.00 per 100,000, with 486,555 deaths identified (Chen et al., 2015). The mortality of lung cancer in China is predicted to be over one million per year, and the number of patients with lung cancer will become the highest in the world by 2025 (Bai and Zhang, 2006). Moreover, the mean expenditure per patient with lung cancer in China was over $9891 (Huang et al., 2016). With the increasing ageing population and increasing incidence of lung cancer, the expenditure will become even more burdensome (Mosher et al., 2013). As a result, lung cancer has been a major public health issue, exerting a great burden on the affected families and the entire society in China.
Family caregivers are essential to the delivery of care to cancer patients at all illness stages (National Alliance for Caregiving, 2016). They assist with patients' daily living activities, diet preparation, self-care regimens, physical symptom management, treatment administration, medication compliance, emotional and psychological support, financial management, and housework duties (Girgis and Lambert, 2009; Girgis et al., 2013; Given et al., 2004). However, caring for patients with cancer is demanding and burdensome for the caregivers (Romito et al., 2013). Family caregivers often face functional, physical, social, psychological, and spiritual burdens (Grant et al., 2013). Caregiver burden has implications for the well-being of caregivers, as well as patients. Studies have reported that caregiver burden was related to deteriorating financial status (Haley, 2003; Northouse et al., 2012), caregiver social isolation (Haley, 2003; Northouse et al., 2012), caregiver psychological distress (Fujinami et al., 2015; Milbury et al., 2013), and reduced quality of life of the caregivers (Fujinami et al., 2015; Rha et al., 2015). In addition, the increased burden on caregivers might reduce the quality of care provided to the patients and, subsequently, deteriorate the patients’ psychological well-being (Milbury et al., 2013).
Although caregivers of patients with lung cancer experienced deteriorated well-being with regard to caregiving, they receive less attention from healthcare providers, who pay more attention to the cancer patients. There are few studies focused on lung cancer caregivers. The available literature from Western countries has reported that family caregivers of patients with lung cancer perceived high levels of caregiver burden (Grant et al., 2013; Murray et al., 2010). Patient characteristics (the diagnosis and stages of cancer) (Ferrell and Mazanec, 2009; Given et al., 2011), caregiver characteristics (age, economic status and relationship to the patient) (Ferrell and Mazanec, 2009; Gaugler et al., 2005), caregiving related variables (the duration of caregiving, number of caregiving hours per day, and type of caregiving tasks) (Ferrell &Mazanec, 2009; Stenberg, Ruland and Miaskowski, 2010; van Ryn et al., 2011; Williams and McCorkle, 2011) were associated with the burden of caregivers of cancer patients. In addition, social support and self-efficacy are resources to reduce caregiver burden (Lazarus, 1996). Caregivers with more social support may have more time and resource to care for patients as well as deal with caregiving task. Self-efficacy also has a positive effect on reducing the caregiver burden (Pinquart and Sörensen, 2007). In many western countries, there are nonprofit organizations like Family Caregiver Alliance or social works address the needs of caregivers. However, in current China, there are no social workers and organizations specialized in this area. Thus Chinese family caregivers of lung cancer patients experience additional burdens in their caregiving roles. Caregiving is a subjective and complex concept that differs in diverse caregiver communities due to different cultures and customs; it is important to understand the caregiver burden among family caregivers from a Chinese perspective. Thus far, however, there have been no available published studies about the caregiver burden among Chinese family caregivers of patients with lung cancer. Given the close relationship to the wellbeing of cancer patients and caregivers, a deep understanding of the status of and factors associated with caregiver burden is essential to provide appropriate support for Chinese caregivers of patients with lung cancer to decrease their stress and improve their well-being.
Thus, this study aimed to (1) investigate the status of caregiver burden among Chinese caregivers of patients with lung cancer and (2) determine the factors that are associated with caregiver burden, including the characteristics of patients and caregivers, caregiving variables, and caregivers’ resources.
Section snippets
Design
This cross-sectional study used convenience sampling. The participants were recruited from the oncology inpatient wards at a teaching and research hospital in Chengdu, China from June 2015 to June 2016. Research assistants identified eligible participants through interviews and medical records. All participants were informed of the study purpose and procedure. Approval from the Ethics Committees of Sichuan University was obtained and written informed consent was received from all enrolled
Data collection
Data were collected at the inpatient oncology ward in the hospital prior to discharge, including the characteristics of the patients and caregivers, caregiving burden, caregiving related variables, caregiver social support, and self-efficacy. Patient demographic and clinical data were obtained from their medical records. Other data were obtained through caregiver reports. The following instruments were used in this study: (1) a demographic survey, (2) the Zarit Burden Interview (ZBI), (3)
Results
Among the 143 potential eligible participants we contacted, ten caregivers declined because of psychological distress, nine caregivers declined due to tight schedules, and eight caregivers refused, without providing a reason. A total of 116 participants (patient-caregiver dyads) completing the survey were recruited for the analysis. The clinical and demographic characteristics of patients and caregivers who didn't participate in the survey were similar to those participated.
Discussion
This study showed the family caregivers for lung cancer patients in our sample experienced a high level of caregiver burden. The factors related to caregiver burden among lung cancer caregivers were the age of the patients, disclosure of cancer diagnosis to the patient, medical and other types of insurance, and caregivers’ social support.
The caregiver burden of patients with lung cancer in this study was 38.8 (SD = 13.4). The findings were consistent with those of previous studies conducted in
Conclusion
The study adds to prior work by identifying a vulnerable population of caregivers who are at a higher risk of caregiver burden (from a Chinese context) and suggesting strategies that are suitable for Chinese cancer caregivers. Patient age, having medical and other types of insurance (compared with self-pay), disclosure of the cancer diagnosis to the patient, and caregivers’ social support are factors related to caregiver burden among Chinese caregivers of lung cancer patients. These findings
Conflicts of interest
No conflict of interest exists reported.
Funding
The study is funded by the National Natural Sciences Foundation of China (81803104), the Science and Technology Department of Sichuan Province (2016FZ0087 and 2017KZ0033), the Science and Technology Bureau of Chengdu (2018-YFYF-00122-SN), the Health and Family Planning Commission of Sichuan Province (16PJ344 and 17PJ394), the Sichuan Medical Association (S16055), the China Scholarship Council (201706245002), and the initial Science Fund of Sichuan University for the Young Teachers (2017SCU11012
Acknowledgements
We would like to thank the executives and participating staff of the hospital for their support and assistance. Special thanks give to all participants for their understanding and cooperation.
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Xiaolin Hu, Xingchen Peng, and Yonglin Su contributed equally to this article.