Bridging Disciplinary Boundaries (January 11 - 14, 2007)

HIV/AIDS continues to be a serious public health issue. As HIV changes from an acute disease to a more chronic illness, it place increased responsibility on family caregivers to provide on-going assistance. Regardless of the nature of the population studied, most caregiving research has focused on the caregiver, with little attention given to the care recipient and even less to understanding the care recipient-caregiver dyad. Failure to consider the person receiving care as an active participant in the caregiving process excludes factors that may be central to understanding the care relationship and caregiving outcomes.

This research investigates the mental and physical health outcomes for both members of the AIDS caregiving relationship by utilizing a resilience conceptual approach. Resilience is defined as the behavioral patterns, functional competence and cultural capacities that individuals, families and communities utilize under adverse circumstances, and the ability to integrate adversity as a catalyst for growth and development (Fredriksen-Goldsen, 2003). This research will extend this conceptual model by incorporating both the person living with AIDS and caregivers' experiences and the dyadic relationship variables that may impact mental and physical health outcomes for both members of the caregiving relationship.

In this study 154 pairs of persons living with AIDS and their caregivers living in a large urban area were interviewed. A caregiver was defined as a partner or other family member, friend or neighbor that provides unpaid assistance, such as personal care, providing or arranging housekeeping or transportation, assisting with financial matters or providing emotional support, to a self-identified gay man living with an AIDS diagnosis. The participants were recruited using multiple sources and contacted via announcements regarding the study at various health, human service and community based organizations. Recruiting from a number of sites minimized biases as compared to relying on a sample drawn solely from health clinics.

When examining the caregiving dyads, the experiences and perspectives of persons living with AIDS and their caregivers were often incongruent. For example, caregivers and persons living with AIDS differed significantly (p<.05) in their ratings of the functional impairment of care recipients, with the caregivers rating persons living with AIDS as being significantly more impaired. The incongruence in their ratings of impairment was found to be a significant predictor of caregiver depression. Furthermore, the research findings identify several key factors that impact caregiving outcomes, including: (1) structural characteristics in the care relationship; (2) congruence in the perceptions of care; (3) extent of mutuality and reciprocity; (4) experiences of marginalization and discrimination; and, (5) availability of additional caregivers and the use of formal services.

This research identified several important and understudied dyadic level predictors of mental and physical distress and well-being among adults living with AIDS and their caregivers. These findings underscore that caregiving is an interactive process and that meaningful research must examine the impact of dyadic interaction on caregiving outcomes. Future research needs to consider caregiving within the context of the relationship and design appropriate community-based interventions and practice approaches to support diverse caregivers and their care recipients.