Saturday, 15 January 2005 - 2:00 PM

This presentation is part of: HIV and AIDS

Resilience and AIDS Caregiving

AIDS continues to be a serious public health problem on national and international levels. As AIDS changes from an acute to a chronic illness, there is an increased responsibility on informal caregivers to provide long-term assistance. To date the primary emphasis in AIDS caregiving research has been on the deleterious impact of AIDS. Most often stress and coping frameworks has been applied, with limited attention to the resilience of people with AIDS and their informal caregivers.

The purpose of this research is to test a resilience model to more fully understand factors than are associated with physical and psychological well-being among caregivers of gay men living with AIDS. In this research, resilience is defined as the capability to endure and confront adversity and utilize the experience as a catalyst for growth and development. According to this formulation resilience is an interactive, dynamic process influenced by four domains: Background characteristics, resilience factors, risk factors, and outcomes.

The sample included 154 informal caregivers living in a large urban area. A caregiver was defined as a family member, partner, friend or neighbor that provides unpaid assistance to a person with AIDS such as personal care, providing or arranging housekeeping or transportation or assisting with financial matters. The caregivers were recruited using multiple sources and contacted via announcements regarding the study at various health, human service and community based organizations. Multiple regression analyses were performed to examine the contribution to the outcome variables made by the various background characteristics, and resilience and risk factors.

In this study there was high variation in caregiving outcomes with many caregivers demonstrating high levels of physical and psychological well-being despite adverse life circumstances such as the declining health of the person with AIDS. The resiliency model predicted 32 percent of the variance in psychological well-being and 39 percent of the variance in caregiver health status. Factors that contributed significantly to caregiver well-being included income, caregiver health, discrimination, multiple loss, dispositional optimism and self-empowerment. Variables that significantly predicted caregiver health included caregiver strain, discrimination, conflict and self-empowerment.

By utilizing the Caregiving Resiliency Model, this study provides important new information concerning several understudied aspects of caregiving including more fully understanding the range of experiences among caregivers, the variations they experience in caregiving outcomes and the identification of factors that support or enhance their well-being. These findings suggest that AIDS and caregiving entail more than stress and distress and that future research needs to consider the resilience of informal caregivers and their capacities at personal, cultural and community levels. In addition, the findings underscore the important role of discrimination and multiple loss in the caregiving process. The implications of these findings are discussed as they relate to the design of community-based interventions to support caregivers and persons living with AIDS.

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