Caregivers who participated in the study were found to be generally younger than their patient counterparts, were mostly female, and in spousal or parent-child relationships with their patients. The predominating demographic characteristics are believed to be reflective of the cultural milieu of Asian communities, with the responsibility of care often falling into the hands of younger, usually female, family members. These individuals face the dilemma of being thrown into a labor-intensive role without receiving any formal training in care provision, leaving them feeling unprepared, in addition to the challenge of witnessing a loved one struggling with serious illness, putting them at risk for depression and anxiety, and attenuating their ability to provide care.5
Among caregiver characteristics, the study identified educational attainment, status of employment, and income as significant contributors to CB. This mirrors some of the findings in the systematic review conducted by Ge and Mordiffi, where it was found that younger caregivers were more likely to experience psychological distress as a result of less secure financial status, and activity restriction.7 This concern is heightened in the setting of a health system that remains predominantly reliant on out-of-pocket expenses rather than state-subsidized care.
In a study by Weitzner et al, in addition to caregiver characteristics, illness-related indices (such as disease site, stage, duration and prognosis) were also found to play a significant role.6 This was consistent with the findings from our study with lung cancer being the primary site most associated with CB. Patient age was likewise a contributory factor. More advanced cancer often translates to a higher complexity of treatment regimens, increased patient disability from both disease and treatment, and poorer prognosis; and this effect is magnified in older age, culminating in a higher demand for caregiving, eventually leading to caregiver burden. Unlike the Weitzner study, however, duration of illness was not found to be significantly associated with CB in our study, which might be attributed to either the relatively smaller sample size or the presumed adoption of coping mechanisms to deal with feelings of burden over time.
Additionally, literature cites the patient’s requirement for assistance as a primary factor contributing to CB, given that this involves an increased amount of time and a higher level of engagement. In our study, we found this to be true as well, with impairments in patient mobility and self-care, and the requirement of assistance in performing ADLs contributing significantly.7 However, our study did not demonstrate a strong association between patient anxiety or depression with CB.
On the other hand, when examining the inverse relationship via bivariate analysis, the study found that higher levels of CB were linked to the impairment of patient mobility, and a decreased ability to perform ADLs independently. Apart from its ill effects on the caregiver (including decreased quality of life, heath-seeking behaviors, effective partnership), CB is of particular concern from a clinical standpoint because caregivers who are “burned out” are at risk of being unable to continue providing care for the patient,1 which, in turn, will have ill effects on the patient’s condition, perpetuating a vicious cycle of patient deterioration and worsening caregiver burden. Studies also suggest that caregiver burden affects medical decisions, including the choice of placement for end-of-life care or patient institutionalization. In a cross-sectional study by Ji et al, caregivers who scored higher on questionnaires probing for burden were more likely to prefer palliative care over life-sustaining treatment, meaning that the likelihood of preferring palliation increased as the burden score increased.3
Our study likewise demonstrated a strong association between higher levels of caregiver burden and increased patient anxiety or depression. As debilitating illnesses such as cancer constrain a patient’s ability for self-care, the responsibility of care shifts to others, which the patient hands over with reluctance. Self-perceived burden (SPB) is a multi-dimensional construct arising from a patient’s feelings of dependence, and the resulting frustration and worry, which then lead to negative feelings of guilt at being responsible for the caregiver’s hardship.3
SPB greatly affects the physical and mental health of the patient. In a study by An et al, which mirrored our own findings, it was found that a higher level of CB was associated with higher levels of patient anxiety and depression. Caregivers with higher burden were more likely to report a diminished perceived health status as well as a lower sense of coherence, thus compromising the quality of caregiving. In contrast, patients whose caregivers reported less burden experienced less anxiety and depression symptoms, and a better quality of life, implying that CB plays an important role in influencing a patient’s psychological health and quality of life.2
Finally, when looking into the relationship between caregiver burden and hospital admissions for the patient, our study found that the odds of hospital admission for the patient increases fourfold when caregivers experience even moderate levels of burden. This is supported by a clinical investigation performed by Ankuda et al, where it was reported that poor caregiver well-being contributed to higher use of healthcare facilities. Caregiving demands, when exceedingly burdensome, are difficult to keep up with, especially in the context of already existing CB. In turn, this leads to worsening of patient health, requiring medical attention and added healthcare expenditures. It was also found that caregiver burnout was linked to an increased reliance on health systems (such as an emergency room) as a source of respite.4 The abovementioned findings suggest that identifying caregivers with suboptimal well-being may help to pinpoint patients with impending increases in healthcare costs, which is important given our study’s findings that factors related to economic stability were significantly associated with caregiver burden.