Caregiver burden among Chinese family caregivers of patients with lung cancer: A cross-sectional survey

Highlights

• Patient age, disclosure of the diagnosis to the patient, payment type, and caregivers’ social support are factors related to caregiver burden.

• A well-designed communication skills training programme with the integration of Chinese customs is recommended.

• Family caregivers may benefit from healthcare insurance initiatives, a communication training programme, and social and economic support.

Abstract

Purpose

To investigate the status of caregiver burden and to identify the factors related to caregiver burden among Chinese family caregivers of patients with lung cancer.

Methods

A cross-sectional design with convenience sampling was used in this study. Participants (N = 116) from the oncology inpatient ward at one teaching hospital in Chengdu were recruited from June 2015 to June 2016. The following measurement tools were used: a demographic questionnaire, the Social Support Rating Scale, the General Self-efficacy Scale, and the Zarit Burden Interview. Multiple linear regression analysis was used to identify factors associated with caregiver burden.

Results

The average ZBI score was 38.8 (SD = 13.4). Patient age (p < 0.01), medical and other types of insurance (p < 0.01), disclosure of the diagnosis to patients (p < 0.01), and social support of the caregiver (p < 0.05) were related to caregiver burden. Fifty-three percent of the variance in caregivers’ burden was explained by these identified factors.

Conclusions

Caregiver burden was higher among Chinese caregivers of lung cancer patients compared with the results of previous studies. Patient age, medical and other types of insurance, disclosure of cancer diagnosis to the patient, and caregivers’ social support are factors associated with caregiver burden. The results suggest that social support, comprehensive healthcare insurance initiatives, and culture-based communication skill training are potential areas for future intervention.

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.