As would be expected if caregivers are impacted by changes in reciprocity between themselves and patients, worsening in patient functioning from before to after a stroke significantly predicted subjective burden relating to consequences for caregivers' personal lives and objective burden, but baseline patient status did not. Caregiver health and subjective burden relating to dissatisfaction with the self as caregiver or with the patient, however, were not impacted by changes in patient functioning. Caregivers who were proxy respondents experienced greater subjective burden relating to consequences for caregivers' personal lives and greater objective burden than caregivers who were not proxy respondents.
Similar to other studies (Choi-Kwon et al., 2005
; Scholte op Reimer, de Haan, Rijnders, Limburg, & Bos, 1998
; Tooth et al., 2005
), we found subjective burden resulting from consequences on the caregiver's personal life to be more salient than other dimensions of burden in caregivers of stroke patients. These other studies focused either on change in patient functional status (Tooth et al., 2005
) or on baseline measures of patient disability (Choi-Kwon et al., 2005
, Scholte op Reimer, de Haan, Rijnders, et al., 1998
) but not both. Our study adds significantly to this nascent literature by including measures of both baseline and change in health and by incorporating neurological functioning in addition to physical functioning. We were able to show that change, rather than baseline functioning, affects subjective caregiver burden the most and that change in neurological functioning might be more relevant than changes in physical functioning.
Worsening in patient functioning, rather than baseline functioning, also predicts caregiver objective burden. In contrast to Tooth et al. (2005)
, we did not find that worsening in patient physical functioning predicted objective burden, but we did find that worsening neurological functioning predicted objective burden. These results were contrary to our expectations that objective burden would be predicted mainly by the patient's baseline health status. We believed that objective burden would be more stable than subjective burden in the face of worsening patient health status as caregivers might have an established amount of care to provide that corresponded with the consequences of the stroke, regardless of whether or not the caregiver was satisfied with the amount of asymmetry in the relationship. Instead, our results support the conclusion that caregivers who have not had a chance to adjust to increasing neurological deficits in the patient spend more time providing care. Our study is one of very few that have examined hours spent caring as an outcome measure.
Similar to other studies, we did not find a relationship between worsening patient functioning and caregiver health (Beach et al., 2000
; Tooth et al., 2005
). We did, however, find that worse caregiver health was predicted for caregivers who were proxies. Other studies of caregiver health that include baseline measures of patient functioning have either not found a relationship between patient baseline health and caregiver health (Clark et al., 2004
), or they have found the relationship to occur inconsistently over time (McCullagh et al., 2005
). To our knowledge, no other studies have simultaneously examined the effect of changes in patient physical and neurological functioning on caregiver health. Other authors have suggested that caregiver health is predicted more by caregiver burden than by changes in patient functional status (Hughes et al., 1999
; McCullagh et al., 2005
). Future studies will be needed to address the possible link between changes in patient functioning, caregiver burden, and caregiver health.
As with all studies, we have several limitations. First, we only analyzed data from interviews of caregivers and patients within four months of hospital discharge. We might find significant relationships between patient changes in functioning and caregiver health and burden if we study a longer time period or had a greater sample size. Secondly, our sample is not ethnically or racially diverse. It is, however, representative of the Minneapolis-St. Paul metro area. Data were obtained from a large HMO that enrolls approximately 10% of the area population. Also, for this analysis, we combined variables representing changes in physical functioning from “prior to stroke to discharge” and from “discharge to the interview” into one measure as these variables were highly correlated. This did not allow us to distinguish change between these two time periods, but the high correlation suggests that little change occurred. Finally, our R-squared values for overall model fit were low (see Tables and ), but this is often the case even with extremely good models (Schemper, 2003
Regression results for objective burdenb and caregiver health
Because we used data from a study that was initially designed to examine other outcomes, we lacked some information that would have been useful for our analyses. Specifically, we did not have explicit measures of reciprocity in the caregiver-patient relationship, and the burden measures reflect objective and subjective changes in the relationship from only the caregiver's point of view. Understanding the patient's emotional experience might improve our understanding of caregiver burden. We also did not have information on unpaid assistance received by caregivers. Unpaid assistance from other family members or friends may lessen the impact of changes in patient status on caregiver burden.
The magnitude of change, not patient's baseline status, influences a stroke's degree of impact on a caregiver's personal life and the number of hours spent caring for the patient. Our results suggest that a social exchange framework is useful for examining the effects of stroke patient health status on caregiver subjective and objective burden. Caregivers may not be adversely affected by patient characteristics and needs to which they have adapted, but unexpected or large changes in patient neurological functioning cause changes in the symmetry of a relationship and might lead to increased caregiver subjective and objective burden and perhaps even poorer health.
Our results also can be used to identify caregivers at risk for increased burden and poor health outcomes. In particular, caregivers of patients who are more severely ill, have communication difficulties, or have large declines in neurological functioning after stroke might be at risk for decreased health. If these results are confirmed, interventions to protect caregivers may be indicated for severely ill or communication-impaired stroke patients who continue to decline after hospital discharge. Currently, interventions to address the needs of caregivers have been disappointing and criticized as methodologically weak (Knapp, Young, House, & Forster, 2000
). More complex interventions to assist carers have been proposed but await randomized controlled trials to evaluate effectiveness (Robinson et al., 2005
). Specifically, assessment and targeting of these interventions to caregivers of certain stroke patients may be indicated. Assuming caregivers accompany patients to physician visits, physicians of stroke patients who have experienced significant declines in functioning also may be engaged and can refer caregivers to specific interventions, support groups, or other community resources.