Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates
Introduction
Cancer is a chronic disease that is associated with considerable, continuing, and fluctuating needs and problems for patients (Nijboer et al., 1998). Advances in cancer treatment and current trends toward outpatient cancer treatment enables care to be implemented in the home setting, and the engagement of family members to assume important roles as caregivers (Given et al., 2001, Teschendorf et al., 2007). Caregiving is typically something that people neither anticipate nor choose; In confrontation with cancer diagnosis and treatment, family members feel responsible for providing care (Senden et al., 2015) and committed to provide limitless care (Coolbrandt et al., 2014).
Family caregivers take on this responsibility with little or no training and with limited resources (Ferrell et al., 2013). Nevertheless, family caregivers are required to provide a broad range of assistance, including disease and treatment monitoring, symptom management, medication administration, emotional support, assistance with personal and instrumental care, and financial support (Given et al., 2001, Yun et al., 2005). Family caregivers experience a considerable amount of distress in their efforts to provide care for cancer patients.
Caregiving burden is defined as the distress that caregivers feel as a result of providing care. It is specific to the care and varies from anxiety and depression to other emotional and more general responses (Given et al., 2001). Caregiving burden includes physical (Fletcher et al., 2008, Mosher et al., 2013, Osse et al., 2006, Stenberg et al., 2010), psychological (Braun et al., 2007, Deshields et al., 2012, Grunfeld et al., 2004, Mosher et al., 2013, Osse et al., 2006, Song et al., 2011, Stenberg et al., 2010, Williams and McCorkle, 2011), social (Deshields et al., 2012, Goldstein et al., 2004, Song et al., 2011), and financial domains (Deshields et al., 2012, Song et al., 2011, Yun et al., 2005). Physical burden such as sleep disturbance, fatigue and pain were often experienced by caregivers (Fletcher et al., 2008, Osse et al., 2006). Helping cancer patients to deal with their feelings about cancer and providing emotional support for cancer patients were considered as difficult psychological tasks (Deshields et al., 2012). Missing work because of caregiving responsibility (Grunfeld et al., 2004) and caring others besides cancer patient (Deshields et al., 2012) could be considered as social burden. Financial burden could be derived from paying high medical expenses and losing income and savings (Deshields et al., 2012, Song et al., 2011, Yun et al., 2005).
Caregivers of cancer patients are prone to deterioration of their quality of life (QOL) due to the caregiving burden (Song et al., 2011, Tang et al., 2008, Yun et al., 2005). A high caregiving burden and low QOL were found to be common among caregivers of non-small-cell lung cancer patients (Grant et al., 2013). Family caregivers of leukemia patients regarded caregiving burden as the most influential factor for their QOL (Tamayo et al., 2010). The factors contributing to caregiver burden (Coristine et al., 2003, Goldstein et al., 2004, Kim et al., 2006, Papastavrou et al., 2012, Park et al., 2012, Schumacher et al., 2008) or QOL (Alptekin et al., 2010, Wadhwa et al., 2013, Weitzner et al., 1999) have been explored extensively, but few studies have simultaneously evaluated the caregiving burden and QOL of caregivers of cancer patients (Grant et al., 2013, Son et al., 2012, Song et al., 2011, Tamayo et al., 2010, Tang et al., 2008, Yun et al., 2005). In the studies utilizing the Caregiver QOL Index–Cancer (CQOLC), burden was measured as one of the domains of QOL, thus analysis about the relationship was limited (Son et al., 2012, Tamayo et al., 2010, Yun et al., 2005). The complex and multifaceted concept of QOL (Ferrell et al., 1995, Kitrungroter and Cohen, 2006, Padilla et al., 1990, Padilla and Grant, 1985, Padilla et al., 1983) was not fully represented by simplified measures such as the EQ-5D or EQ-VAS (Song et al., 2011). Grant et al. (2013) applied the Caregiver Burden Scale (Montgomery et al., 1985) and the City of Hope QOL Scale-family version (Ferrell et al., 1999); however, the relationship between two variables while controlling for factors that might have contributed to the caregiving burden and QOL requires further exploration.
Section snippets
Purpose
The purpose of this study was to identify factors contributing the caregiving burden and QOL, and to describe the influence of caregiving burden on the QOL of family caregivers of cancer patients with consideration of correlates.
Design
A secondary data analysis of the cross-sectional descriptive study about caregiving burden, health promoting behavior and quality of life (Rha et al., 2014).
Sample
A total of 227 family caregivers of 226 adult cancer patients receiving care at the oncology inpatient wards and outpatient clinics of 2 university hospitals in Korea participated in the parent study. The inclusion criteria were: (1) family caregiver of an adult cancer patient (aged ≥18 years) and (2) main caregiver for the cancer patient.
General characteristics: caregivers
The caregivers were middle aged (age = 46.2 ± 11.84 years, mean ± SD, range 20–75 years), mostly female (79.2%), and most (69.3%) were residing with cancer patients. About half of the caregivers were spouses (48.6%) and many caregivers were the sole caregivers (65.1%). As a group, the caregivers were highly educated (52.4% received college education), but more than half of them either did not have a job (48.1%) or had resigned from their job for the purpose of caregiving (10.8%) [see Table 1].
General characteristics: cancer patients
Discussion
Current study suggested caregiving burden as the influential factor which negatively affected the QOL. Previous studies reported caregiving responsibility as having negative impact on the caregiver's QOL (Bergelt et al., 2008), and caregivers with a greater burden and low QOL were common among the caregivers of patients diagnosed with NSCLC (Grant et al., 2013). A moderate negative correlation between caregiver burden and QOL was suggested in the study about caregivers of breast cancer patients
Limitations
The cross-sectional design of this study precluded causal inferences. Convenient sampling limits generalizability of the study findings. Although caregiver and cancer patient related factors were identified and considered in the analyses of the relationship between caregiving burden and QOL, other aspects of caregiving such as caregiving difficulty, caregiver preparedness, family function, and social support that might have contributed to the burden were not investigated in this study. Five of
Conclusion
The present study provided a comprehensive description of the relationship between the caregiving burden and QOL of caregivers of cancer patients, while controlling for caregiver-related factors and patients' disease- and treatment-related factors. Caregiving burden was the influential factor that negatively affected the QOL. Assessment of caregiving burden would help to identify caregivers in need of greater levels of support. Supportive care for caregivers to improve QOL needs to be explored
Conflict of interest
The authors declare that there are no conflicts of interest.
Acknowledgment
This study was supported in part by a 2012 Eulji University Research Grant, in part by the Basic Science Research Program through the National Research Foundation of Korea, funded by the Ministry of Education, Science, and Technology (2012010107), and in part, by the faculty research grant of Yonsei University College of Medicine for 2008 (6-2008-0194).
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