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 Caregiverof $8.18 per hour, the researchers determined that this care was worth $196 billion, an amountequivalent to 18% of total health care spending.An older26studypicas11 estimated the economic value of housework and personal care tasks performedby HIV/AIDS caregivers during 1990. The informal caregivers in this study reported spending anaverage of 8.5 hours per day on personal care tasks (e.g., meal preparation, bathing and toileting,companionship) and 19 hours per week on housework. Based on the market value of theseservices, the researchers estimated the annual per capita value of informal HIV care to be $25,858.Roles of Informal CaregiversInformal caregivers perform a variety of roles that help people with HIV/AIDS adhere totreatment regimens, avoid unnecessary hospital admissions, reduce reliance on formal caregivers,remain at home longer, and maintain quality of life. Traditionally, family members have servedas the primary caregivers for seriously ill individuals. Because HIV care involves more diversesocial networks, many HIV-positive individuals have redefined family boundaries to include lovers,12, 13friends, and other “chosen kin.”Findings from a 1997 national survey indicate that the typical caregiver devotes more than20 hours per week to caregiving tasks. 14 These tasks may include:• Emotional support (e.g., comforting, empathizing, and providing encouragement)• Help with activities of daily living (e.g., feeding, bathing, dressing, andtoileting)• Help with instrumental activities of daily living (e.g., cleaning the house,running errands, providing transportation)• Management of financial and legal matters• Health care advocacy (e.g., linking the care recipient with formal and informalservices, communicating with health professionals)• Nursing care (e.g., dispensing medications and monitoring use, administeringinjections, inserting catheters)Although informal caregivers increasingly are being asked to administer pain medications, manageepidural catheters and home infusions, and provide wound care, relatively few studies haveexamined their contributions to palliative care. Informal caregivers can play an important rolein identifying and managing symptoms and side effects, yet most are thrust into these roles withlittle or no training. 15XXBURDENS AND REWARDS OF CAREGIVING■ Psychologists use the term “caregiver burden” to describe the physical, emotional, financial,and social problems associated with caregiving. 16 Burden can be assessed in terms of objectiveor subjective impact. Objective burden assesses the extent to which caregiving disrupts dailyroutines and social relationships and negatively affects resources. 17, 18 Examples include forcedchanges in household routines, missed days of work, family frictions, reduced social contacts,loss of income, and/or reduced energy. Subjective burden assesses the caregiver’s perceptionsof and reactions to caregiving demands. 17, 19 Caregivers with high levels of subjective burdenmay report “feeling trapped,” “feeling nervous or depressed about their relationship withthe care recipient,” or “resenting caregiving tasks” even when their objective burden isrelatively low.U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 411