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 CaregiverEducating CaregiversMany of the stressors contributing to caregiver burnout are caused by misinformation or thelack of26usefulpicasinformation. After assessing the caregiver’s level of knowledge about HIV/AIDSand the types of tasks performed, health professionals should offer appropriate education. Theeducational topics may include:• Modes of HIV transmission• Effects and side effects of medications• Drug-taking schedules and strategies for improving adherence• Basic information on nutrition• Symptoms and problems to expect as the disease progressesInformal caregivers also may benefit from instruction on infection control, pain and symptommanagement, and simple nursing techniques (e.g., administering injections, cleaning and dressingulcers).As new treatments are discovered and standards of care change, informal caregivers need toreceive ongoing education. Topics should be introduced slowly, over an extended period, sinceindividuals under stress can process only small amounts of information at a given time. 42 To theextent possible, these topics should be explained in nonmedical terms, with ample opportunityfor caregivers to ask questions. The use of educationally and linguistically appropriate videosand written materials may help reinforce key concepts.PREVENTING AND MANAGING BURNOUT IN FORMAL CAREGIVERS■ Counteracting burnout among formal caregivers requires a two-pronged approach. In additionto helping individual caregivers develop more effective coping strategies, interventions shouldtarget policies and practices in the workplace that create or exacerbate stress. 28 Formal caregiverscan benefit from coping effectiveness training, but these techniques will be only partially effectiveif the work environment is not supportive. 47Situational strategies attempt to reduce the incidence of burnout by eliminating or modifyingworksite stressors. These strategies promote engagement with work (i.e., high energy, stronginvolvement, and a sense of self-efficacy) by:• Establishing clear job descriptions and good referral mechanisms• Setting realistic work targets• Restructuring jobs to make workloads more manageable• Providing training on HIV management, new approaches to pain and symptommanagement, and effective ways of communicating with patients and familymembers• Offering on-site health promotion programs• Encouraging staff to participate in policy decisions that affect their work• Providing regular time off and appropriate rewards• Scheduling regular memorial services for staff wishing to remember and grievelost patientsConflict among formal caregivers can be prevented, or at least managed, by scheduling regularforums for case discussion. 40 Although these sessions reduce the time available for direct service,422U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau