The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 20: Care for the Caregiverthey help promote collegiality, information sharing, and a consensual, comprehensive approachto care. 40, 42 Case forums may need to be supplemented by support groups, where caregivers canopenly acknowledge the stresses of their work and discuss ways of eliminating or coping withstressors.26 picasCONCLUSION■ Over the past decade, improved antiretroviral regimens, concerns about the costs of inpatientcare, and consumer preferences have shifted HIV care from hospitals to home and communitybasedsettings. 9, 71 This shift has placed heavy demands on the family and friends of HIV-positiveindividuals, many of whom have very little knowledge of HIV management or available resources.Formal caregivers also are faced with intense pressures as they struggle to keep pace with rapidlychanging standards of HIV care.Because informal caregivers experience varying types of burdens and have differential access tofinancial resources and social support, strategies for counteracting burnout and promoting selfcaremust be tailored to their individual needs. Many of the strategies recommended in thecaregiving literature assume that caregivers are middle-income, fairly well educated, andsurrounded by family and friends who are willing to help. As HIV continues to penetrate poorand marginalized communities, new or modified approaches may be needed to help caregiversmanage stress and maintain good physical and mental health. These strategies are likely torequire family-centered case management and integrated primary care and behavioral healthservices for patients and caregivers.Strategies for counteracting burnout among formal caregivers must address both individualand situational factors. Formal caregivers may be able to change the ways in which they dealwith stressors by developing a better understanding of their personalities, values, and copingstrategies. However, their efforts will be only partially effective if negative policies and practicesin the workplace remain unchanged. Finding ways to enhance the working environment mayultimately prove more effective in preventing burnout than teaching caregivers how to managestress.Advances in HIV antiretroviral therapy are changing but not necessarily improving the conditionsof caregiving. Although HIV-positive individuals are living longer, many are developing therapyrelatedside effects that require monitoring and management in the home. By systematicallyassessing the causes and levels of stress in informal caregivers, health professionals can offereducation and counseling that is more responsive to individual needs.XXU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 423