HIV disease intensifies the normal strains of family care of the chronically ill, becoming the caregiver's all-consuming focus. Coordinating medication regimens and medical appointments, managing treatment side effects and disease symptoms, contending with the ill person's emotional needs, and providing hands- on personal care and housekeeping assistance impose overwhelming physical and emotional demands on the caregiver. Many older surrogate parents are serial caregivers for several infected relatives, often as they assume responsibility for young children, who may also be infected.
Care giving patterns for infected person in the United States are not well known, although a recent study of HIV-infected parents and their children in that country found that grandmothers were the predominant caregivers. Studying infected adults in Thailand, researchers have found that almost two-thirds of those who died of AIDS had been cared for by a parent.
Chronic fatigue and physical exhaustion (Turner and Pearlin 1989), somatic physical and psychological symptoms, emotional exhaustion (Turner, Catania, and Gagnon 1994) and depression (LeBlanc, Aneshensel, and Wight 1995) are common among HIV caregivers. A catastrophic illness with an unpredictable course, HIV disease has been termed a “physiological and emotional time bomb” (Roth, Siegel, and Black 1994). Minor health problems of childhood—colds, ear infections, flu, headaches—assume different proportions in families where the child is infected, which explains Anita Marrone's constant vigilance. Parental surrogates must learn to cope with infected babies and children who may have difficulty swallowing and eating (Marder and Linsk 1995). Caregivers can feel overwhelmed in trying to disinfect the environment to protect the infected family member (s) and in handling blood and bodily wastes to reduce transmission risk to themselves and others. How new combination therapies are transforming family care of HIV-infected children and adult has not been studied. Recent research suggests that as HIV becomes more of.......
