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

Chapter 20.26 picasCare for the CaregiverJoseph F O’Neill, MD, MPH, and Martha M McKinney, PhDINTRODUCTION■ Major advances in highly active antiretroviral therapy (HAART) have dramatically alteredthe nature and duration of HIV/AIDS caregiving in the United States. Although scientists havenot yet discovered a drug combination that can completely eradicate the virus, the new HAARTregimens are helping many HIV-positive individuals live longer and enjoy a better quality of life.Marked declines in rates of opportunistic infections and deaths have brought the hope that HIVcan be managed as a chronic disease.The populations that require HIV management also are changing. Growing numbers of HIVpositiveAmericans are poor, marginalized, and uninsured or publicly insured. 1 African Americansand Latinos now represent the majority of new AIDS cases and people living with AIDS in theUnited States. 2 Women and youth are experiencing rapid rates of increase in HIV infection. 3HIV incidence remains high among men who have sex with men (MSM) and injection drugusers, with young African American MSM experiencing particularly high rates of newinfections. 3, 4The changing demographics of the HIV epidemic, along with the growing complexity of medicalcare, have created major challenges for the health professionals who provide curative andpalliative care and the informal caregivers who provide emotional and practical support torelatives and friends living with the disease. Although an estimated two-thirds of U.S. adultsliving with HIV infection are aware of their serostatus, only one-third are receiving regular medicalcare. 5, 6 For those who are in care, decisions must be made on when to start antiretroviraltherapy, which drug combinations to use, and how to manage viral resistance and drug-specifictoxicities. Therapeutic regimens often must be adapted to meet the needs of homeless individualsand patients with comorbidities, such as mental illness and chemical dependence.As treatment options have expanded, so have the stresses experienced by caregivers. Theprolongation of the disease course, uncertainty about overall prognosis, and a “roller coaster”pattern of repeated exacerbations and remissions in later stages of HIV disease have intensifiedthe emotional and physical demands of caregiving. In-home caregivers increasingly are beingasked to help patients manage sizable pill burdens, frequent and complicated dosing schedules,and therapy-related side effects. Many of these caregivers face the added burdens of poverty,inadequate housing, and lack of knowledge about available resources. Some are themselvesHIV-positive. These developments underscore the importance of recognizing and meeting theneeds of HIV/AIDS caregivers over the long term—both for their benefit and for the well-beingof people in their care.This chapter discusses the challenges of providing HIV/AIDS care and ways of helping caregiversmanage stress and maintain quality of life. The first section describes the types and prevalenceof HIV/AIDS caregiving. The next two sections examine the burdens and rewards of caregivingand factors that contribute to burnout. The last two sections discuss strategies for preventingXXU.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 409