Caregiver Objective Burden and Assessments of Patient-Centered, Family-Focused Care for Frail Elderly Veterans


“Purpose: There is a growing consensus that quality of care for frail elders should include family and be evaluated in terms of patient-centered, family-focused care (PCFFC). Family caregivers are in a unique and sometimes sole position to evaluate such care. In the context of caring for physically frail elders, this study examined the extent to which objective burden was associated with caregiver perceptions of PCFFC and the extent to which it mediated the influence of other variables on perceptions of PCFFC. Design and Methods: In a study of frail elderly veterans receiving care in U.S. Department of Veterans Affairs ambulatory primary care clinics, informal caregivers assessed quality of care with 13 questions. Factor analysis of these items revealed an eight-item scale that specifically assessed PCFFC (a = .90). Regression analysis identified variables associated with caregiver (N = 210) assessments of PCFFC and the potential mediating effect of objective burden. Results: Caregiver assessments of PCFFC were positively associated with care recipient instrumental activity of daily living limitations (p=.04) and perspectives on the quality of their own patient care (p , .001). Greater objective burden was negatively associated with caregiver assessments of PCFFC (p , .001) and mediated (i.e., reduced) the relationship between care recipient perceptions of the quality of their own patient care and caregiver assessments of PCFFC (R2 = .06). Implications: These findings support recommendations for conducting caregiver assessments as part of routine care and highlight the importance of measuring objective burden and expectations for PCFFC in assisting physically frail elders. Primary care providers will require additional training in order to effectively implement and translate such caregiver assessments into clinical practice improvement”


For Practice

Health care providers may be able to reduce the burdens on caregivers, but they must first be aware of caregivers’ needs and challenges. Providers should involve family caregivers in discussions to address the challenges that family members in their care face, in order to provide the best care possible for elderly veterans. Findings from this study show that poorer mental health and functional limitation are associated with greater objective burden for caregivers. Poorer mental health appears to be even more important than other caregiver attributes, such as availability of other family members to step in and/or living with the frail elder, in terms of increasing caregiver burden. Caregivers should communicate openly with physicians to work together to address issues that increase their care burden, as well as their expectations for patient-centered and family-focused care. It is especially important for primary care providers to understand the ways in which caregiver burden affects both the informal caregivers and elderly care recipients. Primary care providers must be instructed in seeking patient permission and guidance, involving appropriate informal caregivers on patient care, and following a course of treatment consistent with patient and caregiver wishes. This can be especially difficult in cases where patients are physically frail but cognitively intact. Regular assessments of patient and caregiver needs, and interventions based on these demonstrated needs, can increase the quality of care and benefit patients, caregivers, and providers. Findings from this study provide an opportunity for specialized training focused on elements of care that will affect perceived quality of care over the long-term.

For Policy

Policies addressing the needs of informal caregivers are sorely needed, especially for caregivers who are burdened by the physical limitations and mental health needs of those in their care. Veterans’ health organizations could implement training programs that address caregiver concerns, including how to manage their own health problems alongside those of the physically frail and elderly veteran patients that they are assisting, in order to benefit both caregivers and veterans. Policy makers could also implement training programs aimed at enhancing physicians’ skills in working and communicating with family caregivers about their expectations for the care of veterans, and improving the quality of that care. Because overburdened caregivers have greater needs and expectations for support, policies insuring that physicians and primary care teams are trained to effectively communicate with caregivers of elderly veterans would have a significant impact on the quality of care for this population.

For Future Research

In this study, the authors present a brief assessment scale measuring patient- centered and family-focused care of elderly veterans. Future researchers should modify the current scale to assess perceptions and expectations of care for both elderly veterans and their caregivers, and test the assessment scale in larger populations with various settings to determine its reliability. Researchers may also address the questions of whether assessments of care are associated with utilization rates and quality of life outcomes for elderly patients and their caregivers. Because this study was only able to gather data on frail elders and their family caregivers at one point in time, future research should investigate caregiver experiences using more longitudinal data. Researchers can also gather further data on frail, elder veteran experiences outside of the VA system, as this study used health utilization data based solely on primary care received in the VA. Another area for future research includes documentation of interactions with physicians, including communication between patients, their family members, and physicians during care visits. Observational data based on these encounters would provide a wealth of information on care processes and assist researchers in assessing the importance of variables determining quality of care.

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