This study examined a sample of caregivers of seriously-ill patients with cancer, CHF and COPD. Three key findings enhance our understanding of variability in caregiver outcomes. First, diagnosis was not significantly associated with caregiver burden or psychosocial-spiritual outcomes in multivariate models. Second, a desire for more help from friends and family was the most robust social resources indicator of caregiver burden. Third, anxious preoccupation coping style was significantly associated with caregiver psychosocial-spiritual well-being. All of this suggests that caregiver burden is not disease-specific in the context of the conditions studied here, but rather a relatively universal experience that may be buffered by social resources and successful coping styles. Caregiver resources, not patient diagnosis or illness severity, may be the primary factors associated with facets of caregiver burden and well-being.
Participants in this study reported similar levels of caregiver burden to those in other caregiving populations,44
but few differences between diagnosis groups. We did find significant differences in patient need and caregiver sociodemographic factors between diagnosis groups, but no differences in psychosocial-spiritual outcomes. This study corroborates the existing literature27
and advances the field by building on and extending the previous findings in several key ways. First, our sample was racially and socioeconomically diverse. Second, this study augmented previous research by assessing multiple domains of caregiver burden as well as a variety of additional caregiver psychosocial-spiritual outcomes. Third, this study moves beyond assessment of the impact of social resources on caregiver outcomes to test the influence of psychological coping styles. The inclusion of these additional measures extends the literature and highlights which characteristics have isolated effects and which demonstrate robust patterns across caregiver outcomes.
We found that the most robust social resources indicator of caregiver outcomes was desire for more help from friends and family; greater agreement with this statement was associated with significantly higher odds of facets of burden. This finding is particularly interesting given that the size of the network reported in our caregiving population was relatively large, yet the number of individuals does not appear to be translating into more help. In addition, this finding is consistent with the social support literature indicating that perceived quality of social support is more important than size of the social network in improving caregiver outcomes.45
Future research should assess where the additional help that caregivers need should come from if it is not derived from the size of the social network. The well-being of the caregiver is often the most important factor in keeping a patient out of a hospital or nursing home; therefore, it is vitally important for both the patient and the caregiver to recognize and meet the needs of informal caregivers.12
The finding regarding need for additional help from family and friends is similar to the finding reported in previous research that the caregiver’s report of need for greater help with daily tasks was the strongest predictor of caregiver burden.27
Our study corroborated that finding in a more diverse sample. Whereas the wording of the questions is slightly different, the results are strikingly similar. Taken together, these findings suggest that there may be clinical relevance to using a simple question assessing a caregiver’s need for additional help with caregiving tasks as a preliminary screening tool for burden. This single-item assessment would be used in a similar way as the question “Are you depressed?” that has demonstrated clinical validity.46
If such a simple screening question was found to be clinically valid, it could be used to refer for more in-depth assessment and treatment, if indicated, or to refer caregivers to available community resources.
This study examined the association between caregiver coping style and outcomes, and our findings suggest areas in which treatment may be helpful. Anxious preoccupation coping style was significantly associated with caregiver well-being, including depressive symptoms, anxiety, and spiritual well-being. This coping style, when applied to caregivers, is characterized by high anxiety that is often focused on seeking more information about the patient’s illness.37
Unfortunately, such information seeking may not alleviate the anxiety, and this coping style has been identified as maladaptive and associated with negative psychosocial outcomes.37, 47, 48
There is an extensive body of literature documenting increased risk for physical and mental health decrements, including increased mortality, in caregivers who report high levels of stress.8-11
Identifying caregivers who exhibit this anxious coping style and targeting them for support and interventions focusing on emotional state and coping, rather than simply informational needs, could lead to a significant improvement in caregiver well-being.
This study has several limitations. First, analyses are cross-sectional so there is no way to assess the direction of relationship between predictors and outcomes. Although steps were taken to reduce reverse causation (for example, using patient-reported functional status and disease severity measures), it is possible that caregiver burden and poor psychosocial-spiritual well-being influence caregivers’ ratings of variables like social support. Longitudinal analyses would not only clarify relationships but also inform understanding of outcomes across the caregiving career. Second, the sample was drawn from one region in the southern U.S. and included mostly white and African-American participants. Thus, findings may not be generalizable. Third, the current study lacks measures of caregiver health status, which may influence caregiver outcomes. Fourth, the large number of statistical tests increases the chance of falsely identifying significant associations. Several parameters were only significant at the P<0.05 level; however, our most important predictors of burden and well-being – need more help and anxious preoccupation coping style – stand up to more stringent tests at the P<0.01 and P<0.001 levels. Finally, the patients studied here are relatively healthy, with 77% of patients requiring no ADL assistance and an average of two IADL impairments. Similarly, the caregivers in the study report relatively high psychosocial-spiritual well-being with small variation. Patterns and outcomes may differ for caregivers who face more significant caregiving demands.
Our findings indicate that caregiver resources, not patient diagnosis or illness severity, are the primary predictors of facets of caregiver burden and other caregiver outcomes. Additionally, caregiver burden is not disease-specific, but rather a relatively universal experience among cancer, CHF, and COPD caregivers that may be buffered by social resources and successful coping styles. Thus, instead of focusing on disease category and other patient characteristics, future research and interventions should address caregiver resources, particularly the presence of a strong and effective social network and the use of healthy and adaptive coping styles.