The GC model was designed to benefit high-risk older adults and their family caregivers by providing comprehensive care that combines several successful chronic disease innovations. Implementation experiences and results from the cluster-randomized controlled study substantiate the feasibility of employing a nurse in primary care practice to work simultaneously with both patients and their caregivers. Early data from this cluster-randomized controlled trial indicated that benefit was experienced by the GC caregivers who remained enrolled in GC for 6 months (Wolff et al., 2009
). Results presented here indicate that benefits related to reductions in depressive symptoms and strain did not persist at 18 months. Likewise, GC does not appear to have led to a statistically significant reduction in caregiving-related regular activity loss or work productivity loss. However, significant improvements were observed in GC caregiver reports of the quality of patients’ chronic illness care at 18 months, a result that is consistent with other findings regarding the effect of GC on patient and physician (Boult et al., 2008
) perspectives. Collectively, results from this study suggest that the GC intervention was more successful in addressing caregivers’ appraisal of recipients’ health care, rather than the objective or subjective stresses associated with care provision.
Compared with UC, GC caregiver participants reported higher quality of chronic illness care for patient participants at 18-month follow-up. Perceptions of better chronic illness care quality were detected in the aggregate as well as for four of the five PACIC subscales, reflecting dimensions of goal setting, coordination of care, decision support, and patient activation. Family caregivers’ ratings of patients’ health care quality are important. A recent national survey found nearly 40% of older adults to be typically accompanied to routine medical encounters by family and friends and that accompaniment is more common in light of advanced age, poor health, and disability (Wolff & Roter, 2008
), all of which characterize the patient participants in this study. Although not specifically investigated here, evidence that family members and friends who accompany patients to routine health care encounters actively participate in visit communication (Clayman et al., 2005
; Ishikawa et al., 2005
; Silliman, Bhatti, Khan, Dukes, & Sullivan, 1996
) and are knowledgeable about patients’ disease and treatment (Silliman et al.) lends credence to the measurement of families’ perspectives of the quality of patients’ chronic illness care.
Regression analyses do not support the hypothesis that GC reduced depressive symptoms and strain related to care provision at 18-month follow-up. It is also noteworthy that GC caregivers did not experience increases
in strain or burden relative to UC caregivers, a distinct possibility given the medical complexity and challenging care needs of study participants. This study relied on a population-based sampling strategy and defined caregivers broadly. As a consequence, enrolled caregivers did not have a high degree of depressive symptoms or strain at the outset of the study. The level of depressive symptoms reported by caregivers in this study was lower than other studies of caregivers (Belle et al., 2006
; Kim, Duberstein, Sorensen, & Larson, 2005
) and comparable to that reported for the general community population (Blazer, Landerman, Hays, Simonsick, & Saunders, 1998
; Weissman et al., 1977
). That few caregivers reported depressive symptoms or strain associated with providing assistance at baseline is likely to have had a bearing on the ability of GC to improve these outcomes.
Another factor that may have attenuated the efficacy of GC for caregivers in this study is incomplete implementation of two components of the GCPFF. For several reasons, the six-session caregiver workshops and the ongoing caregiver support groups led by the GC nurses were poorly attended by caregivers. Anecdotally, the nurses reported feeling uncomfortable in leading these activities and the caregivers reported difficulty attending because of the sessions’ timing, location, and duration. The other three components of the GCPFF (caregiver assessment, referral to community resources, and ongoing coaching of caregivers) were implemented with much greater fidelity to the GC model. Unfortunately, we did not collect research data that would allow quantitative description of the rates of implementation of GCPFF components.
Several limitations of this study merit comment. The multifaceted nature of GC and the GCPFF, as well as the heterogeneity in patient and caregiver attributes, result in several conceptual and methodological challenges to interpreting results. It is notable that we are unable to disentangle which aspects of the GC intervention did or did not work well or were most salient to patients and their family caregivers, some of whom were challenged by serious health issues of their own. Likewise, given the study context, and nature of the intervention, it is not possible for us to ascertain the extent to which nurses implemented the model of care consistently over time and across sites or in a manner that retained fidelity to the GCPFF. Conceptually, it is unclear which outcomes are most salient to caregiver participants in this study. Depression and strain are among the most widely studied outcomes of caregiver interventions. However, these measures may not be the outcomes most relevant to caregiver participants in GC, given its primary care-based focus and the relatively low levels of depression and strain reported by caregiver participants at baseline. Although several caregiver outcomes were examined, the lack of measures that encompass favorable aspects of the caregiving experience is a limitation of this study.
This study was powered on its ability to detect changes in patient, rather than caregiver, outcomes. The relatively small sample of caregivers who remained eligible and completed the 18-month interview impedes our ability to understand nuanced effects of the intervention for subgroups of caregivers. For example, we observed a trend toward less work productivity loss among GC caregivers at 18 months, but the small sample of caregivers working for pay limits our understanding of the extent to which this observation was related to the intervention or to factors beyond this study. Nevertheless, given the specific functions assumed by GCNs and the fact that both patients and their caregivers have direct access to the GCN during business hours, it is plausible that GC could improve caregivers’ work productivity.
In conclusion, results of this 18-month study support the hypothesis that employing a GC-trained nurse in primary care to work with both patients and their caregivers improves caregivers’ perceptions of the quality of care recipients’ chronic illness care but do not indicate that objective or subjective stresses associated with care provision were modified as reflected by strain, depressive symptoms, and productivity. This study provides several lessons for future caregiving intervention studies based in primary care. First, findings substantiate the importance of facilitators being fully prepared to deliver all intervention components. Second, the implementation of intervention components should be individually monitored to allow examination of model fidelity. Third, interventions should be made more broadly accessible through a variety of venues, including telephone or web-based mechanisms. Fourth, caregiver samples should be sufficiently large and diverse so as to permit meaningful subgroup analyses. Last, future research should identify end points for caregivers that are meaningful across a broader spectrum of circumstances surrounding care provision and that acknowledge caregivers’ perceptions, experiences, and roles as partners in their care recipient’s health care processes.