The domains of child caregiver burden that emerged from the factor analysis (positive emotional, negative emotional, social, and financial) are consistent with findings from previous studies on caregivers which assessed the different and often coinciding positive and negative effects of caregiving [12, 19, 21, 22]. The social burden domain exhibited with the factor analysis points to the isolation and disruption that may occur when serving as a caregiver. Other studies have shown that caregivers who are able to participate socially in activities outside of caregiving are better able to cope with the stresses of caregiving compared to those who give up their social activities . Participation in social activities may potentially alleviate the reported social burden of caregiving. It is also possible that engaging in social activities may lessen the negative emotional impact of caregiving.
The financial burden domain is again in line with previous findings. In 2009, 27 % of adult caregivers reported that they experienced a moderate to high financial burden as a result of caregiving . Surveys have shown out-of-pocket costs related to caregiving averaged $5,500 annually for all informal caregivers . With respect to the negative emotional domain, caregiving and the magnitude of burden can have negative emotional effects on caregivers, perhaps through the process of causing life disruption as a result of the caregiving process [1, 11, 12, 19].
However, the effects of caregiving are not entirely negative. Consistent with prior studies, our results suggest that caregiving can have a positive influence on the caregiver . Caregivers may receive personal satisfaction by feeling valued, learning new skills, and building relationships with family members and friends .
There are important limitations to consider in this analysis. First, this study sample of caregivers focused primarily on adult children of care recipients. The experience of adult children may be inherently different from those who care for a friend, grandparent, spouse, or another relative. However, the majority of informal caregivers are adult children . We also conducted a sensitivity analysis using other sample subsets. In that analysis, the burden domains were fairly consistent across these demographic groups. A second limitation is that this analysis did not account for caregiving intensity. Higher caregiving intensity is associated with increased caregiver burden . It is possible that caregivers providing higher levels of care may experience caregiver burden differently than caregivers who provide lower levels or lower frequency of care.
Despite these limitations, this study highlights the patterns of burdens that child caregivers face, and provide important areas to consider for the health and well-being of an important sub-group of health care providers. Developers of health care policy and programs should consider exploring and targeting the identified domains (negative emotional, positive emotional, social, and financial) to ensure new policy has a positive impact on informal child caregivers and provides a more supportive environment for these individuals. As the population continues to age, older adults will more heavily contribute to the overall rise in health care costs in the United States. Medicare costs alone are projected to rise to 20 % of the GDP in 2050 . However, informal caregivers, particularly child caregivers, play a critical role in decreasing this costly utilization. They not only provide direct care, which decreases overall health care utilization, but caregivers are often able to maintain community-based living arrangements for care recipients, thereby delaying the care recipient’s transition to more intensive and costly long-term care . Nationally, the savings resulting from informal caregiving totals more than 75 % of annual Medicare spending . Therefore, improved understanding of caregiver burden is essential to ultimately maintain and even strengthen this vital component of the health care system as the population continues to age.
The exploratory analysis presented may help inform future research in this field in several important ways. First, this analysis represents the first such exploratory analysis of caregiver burden domains specifically in child caregivers. As the population continues to age and with increasing intergenerational age gaps, the number of child caregivers to elderly parents will continue to increase. The needs of child caregivers who may simultaneously balance work and child caregiving obligations are distinct from those of spousal and other types of informal caregivers. Second, this preliminary analysis is among the first to explore the new National Study of Caregiving, which offers a unique and comprehensive examination of informal caregivers across the United States. Lastly, this preliminary analysis explored the multidimensionality of caregiver burden in child caregivers to elderly parents. Identifying potential domains of burden can inform future research in informal caregiving and highlights the breadth of consequences, both positive and negative, of informal caregiving above and beyond physical effects.