Factors Associated with Caregiver Burden among Caregivers of Terminally Ill Patients with Cancer

Abstract

Objective To identify factors associated with caregiver burden among those caring for terminally ill patients with cancer. Design Cross-sectional study of interviews with primary caregivers (n=206) of consecutive patients with cancer enrolled in the largest hospice in Connecticut. Methods Data were collected on the caregivers’ sociodemographic characteristics, social network index, and number of restrictions in their own activities due to their caregiving role. The outcome was a nine-item questionnaire adapted from the Zarit Burden Inventory. Results The highest burden was reported among caregivers with more limited social networks (OR 1.38, CI 1.02–1.87), more restrictions in their daily activities (OR 1.35, CI 1.13–1.61), and who were younger (OR 1.46, CI 1.10–1.93). Conclusions Variations exist in the intensity of caregiver burden based on subjective experiences and social support, rather than on the amount of assistance provided. Clinicians should consider factors such as these when targeting caregivers for interventions to alleviate burden.

Differential levels of stress in caregivers of brain tumor patients—observations from a pilot study

“…The data indicate that younger caregivers of patients with low-grade tumors experience and report more stress. This data correspond to findings already reported on general cancer caregiver population [4,11,17].…”

“…However, when looking at descriptive means, caregivers who attended college report more stress than those who have not, high school (0.277), college (0.879), and graduate school (0.710), indicating that caregivers with more education experience and report more stress. These data contradict other data for general cancer caregiver population, which indicate that lower levels of education correlate to higher stress [6,11]. When looking at the relationship between caregiver stress and education by tumor grade, despite educational level attained, caregivers of patients with grade I/II tumors report twice as much stress as their grade III/IV counterparts (0.56 vs 1.06).…”

“…Researchers have found that increased interference in the ability of caregivers to participate in activities they normally value resulted in increased levels of emotional distress for the caregivers [4,11,17]. Lower levels of education [4,16,17] and younger caregiver age [4,6,11] have also been found to correlate to higher levels of stress in caregivers. Furthermore, providing care for patients with dementia was found to positively correlate with stress levels [8].…”

Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates

“…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).…”

Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study

“…Studies have demonstrated that social and psychological resources are central to succeeding in the caregiver role [22]. Lack of social support is associated with lower quality of life [23] and higher burden [24]. Support in providing the caregiver role may mean caregivers are better equipped to carry out the role, as caregivers who do not have support are more likely to have a patient with unmet needs [25].…”