The GCPFF was designed to benefit caregivers of high-risk older adults within the context of a new model of comprehensive primary care that combines several of the previous two decades’ most successful chronic disease innovations. Our developmental work and initial implementation experiences substantiate the feasibility of a nurse, based in primary practice, working simultaneously with patients and their caregivers. Moreover, early data from this cluster-randomized controlled trial indicate that some benefit may have been experienced by caregivers who remained enrolled in GC for 6 months.
The GCPFF appears to have provided modest benefit to primary caregivers in terms of reducing depression, and, more notably, strain, at 6 months. At 6 months, intervention caregivers’ mean depression scores trended downward more than controls; mean strain scores remained stable in the intervention group but trended toward an increase in the control group. These findings were amplified among caregivers who were providing more than 14 hours of weekly assistance at baseline, for whom strain at 6 months was significantly lower in the intervention group. That the observed effects of the intervention were both stronger among higher intensity caregivers and consistent across two distinct outcomes suggests that observed effects were due to the intervention.
Relative to other caregiver interventions, this study is unconventional in its approach to identifying caregivers, its primary care orientation, and its explicit recognition of both caregivers and receivers. However, there are important consistencies between this study and other studies of caregiver interventions in terms of the age, gender, identity of caregivers, and intensity of care provided (4
). Observed effect sizes during the first 6 months of this study were small but comparable to those achieved in other randomized studies of caregiver interventions in regard to depression (–0.16 in this study vs –0.14 for others) and strain (–0.25 in this study vs –0.07 for others). Consistent with other multicomponent caregiver interventions, the GCPFF had a larger impact on strain than depression. The magnitude of effect on strain that was achieved in this study among caregivers who were providing more hours of care at baseline diverges from other intervention studies, where strain has been less amenable to improvement among high-intensity caregivers. Outcomes of the GCPFF will continue to be monitored for consistency and strength after 18-months of follow-up.
The development and early implementation experiences of the GCPFF have yielded several insights regarding how to structure the support of family caregivers within the context of the health care delivery system.
Ambiguity in Defining Family Caregivers
Our strategy of recruiting and working with caregivers within primary care practice resulted in a surprising challenge regarding how to identify family caregivers and differentiate their needs from those of the patients to whom they provide assistance. We found that some individuals actively provide care but do not identify themselves as “caregivers.” Some caregivers are challenged by health issues that rival or even surpass those of patients, whereas some patients also fulfill the role of caregiver. To address this issue, GCNs are empowered to work with any family member or friend whom they determine to be engaged in helping their patients. In fact, some GC patients with substantial caregiving responsibilities were invited and actively participated in the GCPFF Workshop. It is our impression that the inclusive definition used to identify caregivers and the discretion afforded to GCNs has engendered more family-focused care and greater flexibility in meeting patients’ and families’ needs.
Logistical Challenges of Group Activities
Participation in the GCPFF Workshop and Support Groups was lower than anticipated and may have been impeded by the diversity of caregivers enrolled in this study. Workshop and Support Groups were conducted during workday hours to accommodate GCN schedules but likely impeded participation among working caregivers. Some caregivers may have been unable to participate due to substantial caregiving responsibilities; others may have elected to forego participation even without logistical obstacles.
Integration of Caregivers Within Health Care Delivery Processes
The GCPFF represents only one component of the GC model, which was designed for mainstream health care delivery systems. The separation of family caregivers’ experiences and needs from the broader health care system is a point that has been under-recognized to date. Our experience has been that complexity in how patients and families accommodate to chronic disease and disability defies simplistic notions regarding “patient” and “caregiver” roles and challenges the boundaries of traditional patient care delivery. Although much remains to be learned, GC and GCPFF represent a first step in developing comprehensive models of chronic care delivery to promote partnerships among family caregivers and health professionals.