A Clinical Guide to Supportive and Palliative Care for HIV/AIDS
Chapter 20. Care for the Caregiver
November 30, 1999
Major advances in highly active antiretroviral therapy (HAART) have dramatically altered the nature and duration of HIV/AIDS caregiving in the United States. Although scientists have not yet discovered a drug combination that can completely eradicate the virus, the new HAART regimens 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 HIV can be managed as a chronic disease.
The populations that require HIV management also are changing. Growing numbers of HIV-positive Americans are poor, marginalized, and uninsured or publicly insured.1 African Americans and Latinos now represent the majority of new AIDS cases and people living with AIDS in the United States.2 Women and youth are experiencing rapid rates of increase in HIV infection.3 HIV incidence remains high among men who have sex with men (MSM) and injection drug users, with young African American MSM experiencing particularly high rates of new infections.3, 4
The changing demographics of the HIV epidemic, along with the growing complexity of medical care, have created major challenges for the health professionals who provide curative and palliative care and the informal caregivers who provide emotional and practical support to relatives and friends living with the disease. Although an estimated two-thirds of U.S. adults living with HIV infection are aware of their serostatus, only one-third are receiving regular medical care.5, 6 For those who are in care, decisions must be made on when to start antiretroviral therapy, which drug combinations to use, and how to manage viral resistance and drug-specific toxicities. Therapeutic regimens often must be adapted to meet the needs of homeless individuals and patients with comorbidities, such as mental illness and chemical dependence.
As treatment options have expanded, so have the stresses experienced by caregivers. The prolongation 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 intensified the emotional and physical demands of caregiving. In-home caregivers increasingly are being asked 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 themselves HIV-positive. These developments underscore the importance of recognizing and meeting the needs of HIV/AIDS caregivers over the long term -- both for their benefit and for the well-being of people in their care.
This chapter discusses the challenges of providing HIV/AIDS care and ways of helping caregivers manage stress and maintain quality of life. The first section describes the types and prevalence of HIV/AIDS caregiving. The next two sections examine the burdens and rewards of caregiving and factors that contribute to burnout. The last two sections discuss strategies for preventing and managing burnout among informal and formal caregivers. While this chapter focuses on HIV/AIDS caregiving in the United States, the burdens experienced by caregivers are of worldwide concern. Many of the suggestions for counteracting burnout in informal caregivers may prove useful in resource-limited countries where family caregivers have little or no access to formal support systems.
Overview of HIV/AIDS Caregiving
Two types of caregivers provide clinical care and supportive services to people with HIV/AIDS. Formal caregivers include health professionals, behavioral health specialists, and social workers who are trained and compensated for their caregiving activities. The trained volunteers and spiritual counselors associated with AIDS service organizations, AIDS care teams, and hospice programs also fall in this definitional category. Informal caregivers include relatives, spouses/partners, and friends who provide in-home care -- usually on an unpaid basis. These caregivers vary in the types of tasks performed, the amount of time devoted to caregiving, and living arrangements (i.e., same or separate household).
Prevalence of Informal Caregiving
More than 54 million people -- 27% of the adult U.S. population -- served as informal caregivers for people with chronic illnesses or disabilities between August 1999 and September 2000.7 Fifty-six percent of these caregivers were female, and 37 percent lived in the same household as the care recipient. As compared to the total U.S. population, informal caregivers were more likely to have annual household incomes of less than $30,000 (43% vs. 35%).
No current data are available on the proportion of U.S. adults providing in-home care to people with HIV/AIDS. However, telephone interviews conducted with a probability sample of U.S. adults between June 1990 and February 1991 found that three percent of all adults and six percent of central-city residents were caring for HIV-positive relatives or friends.8 Nationally, 59 percent of these caregivers were female, and 22 percent were people of color. The vast majority were under age 40 (74%) and heterosexual (90%). Thirty percent had annual household incomes of $20,000 or less.
Findings from the HIV Cost and Services Utilization Study (HCSUS), a nationally representative sample of U.S. adults receiving medical care for HIV disease, indicate that 21 percent used in-home nursing and supportive services during early 1996.9 AIDS-diagnosed individuals were much more likely to use home care services than people in earlier stages of disease (40% vs. 10%). Of the home care users with AIDS, 42 percent used unpaid (informal) care only, 35 percent used paid (formal) care only, and 23 percent used both types of care. The most common sources of unpaid care were family members other than a spouse or partner (38%) and friends (27%). While most AIDS-diagnosed individuals relied upon relatives and friends for help with household tasks and personal care, 22 percent received in-home nursing services (e.g., injections, infusion therapy, parenteral nutrition) from informal caregivers.
Economic Value of Informal Caregiving
Two studies offer important insights on the economic value of informal caregiving. The first study10 estimated the national economic value of all informal care provided to people with chronic illnesses or disabilities during 1997. Using a midrange estimate of caregiving prevalence (25.8 million), a national average of 17.9 hours per week spent on informal caregiving, and a wage rate of $8.18 per hour, the researchers determined that this care was worth $196 billion, an amount equivalent to 18% of total health care spending.
An older study11 estimated the economic value of housework and personal care tasks performed by HIV/AIDS caregivers during 1990. The informal caregivers in this study reported spending an average 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 these services, the researchers estimated the annual per capita value of informal HIV care to be $25,858.
Roles of Informal Caregivers
Informal caregivers perform a variety of roles that help people with HIV/AIDS adhere to treatment regimens, avoid unnecessary hospital admissions, reduce reliance on formal caregivers, remain at home longer, and maintain quality of life. Traditionally, family members have served as the primary caregivers for seriously ill individuals. Because HIV care involves more diverse social networks, many HIV-positive individuals have redefined family boundaries to include lovers, friends, and other "chosen kin." 12, 13
Findings from a 1997 national survey indicate that the typical caregiver devotes more than 20 hours per week to caregiving tasks.14 These tasks may include:
Although informal caregivers increasingly are being asked to administer pain medications, manage epidural catheters and home infusions, and provide wound care, relatively few studies have examined their contributions to palliative care. Informal caregivers can play an important role in identifying and managing symptoms and side effects, yet most are thrust into these roles with little or no training.15
Burdens 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 objective or subjective impact. Objective burden assesses the extent to which caregiving disrupts daily routines and social relationships and negatively affects resources.17, 18 Examples include forced changes 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 perceptions of and reactions to caregiving demands.17, 19 Caregivers with high levels of subjective burden may report "feeling trapped," "feeling nervous or depressed about their relationship with the care recipient," or "resenting caregiving tasks" even when their objective burden is relatively low.
Causes of Burden for Informal Caregivers
Multiple factors contribute to caregiver burden. First, caregiving usually comes as an unexpected role, one for which people are neither socialized nor prepared.20 To assume this new role, caregivers must restructure preexisting role obligations and social activities and the ways in which they relate to the care recipient.20, 21 Interpersonal strains may intensify as the caregiver and care recipient attempt to resolve issues of autonomy and reciprocity within the context of an increasingly asymmetrical relationship.22 Progressive enlargement of the caregiver's role over the course of illness may require further adjustments in family, work, and social commitments.23
The physical demands of informal caregiving also contribute to burden. Unlike formal caregivers, the relatives and friends providing in-home care often are "on call" 24 hours a day.24 While working this 24-hour shift, caregivers may be required to perform multiple, and sometimes conflicting roles.25 Those who have never cared for a seriously ill person must learn basic nursing skills, often under extremely stressful circumstances. They must also find ways to oversee complex medication schedules while meeting their own home and work obligations. Some have the added burden of caring for entire families infected/affected by HIV disease.
The emotional issues surrounding caregiving are a third source of burden. Because HIV is most prevalent among people under age 40, the caregivers also tend to be relatively young.22, 24 The non-normative experience of caring for someone with a terminal illness can be a major source of stress for these young adults.8 For people of all ages, HIV/AIDS caregiving creates the emotional strain of dealing with an unpredictable and currently incurable disease.26 Some caregivers are burdened by fears of contracting HIV even when they know there is little basis for concern.27 Those who are already infected may worry that no one will be around to care for them when they become ill.24 Adjusting to disease progression can be especially difficult for caregivers who have experienced multiple losses and the attenuation of social support networks.8
The financial impact of caregiving can be a major source of burden. Many families suffer severe economic hardships when a key wage earner is forced to reduce work hours or leave paid employment to care for a sick partner or relative.28 As bills accumulate, the family's most basic needs may go unmet. The loss of income also makes it difficult for caregivers to access formal resources, such as home health and respite care, that could make their tasks more manageable.
A final source of burden is the stigma surrounding HIV disease. Community rejection of HIV-positive individuals because of their disease or the mode of transmission often extends to the relatives and friends who provide care.28, 29 Rather than face stigmatization, some caregivers try to conceal their caregiving activities by withdrawing from social relationships. Those who do acknowledge their caregiving status may find it difficult to obtain support from familial or social networks.8, 22
HIV-positive parents face additional challenges that increase their sense of burden.30, 31 These challenges include arranging for guardianship of the children, balancing the needs of "sick" and "healthy" family members, and helping their children cope with the disease and possible discrimination.25 If a child is HIV-positive, the mother's guilt about transmitting the virus can be overwhelming.32 HIV-positive parents also may have unmet needs for social support. For example, in one multi-city study, only 30 percent of the HIV-positive mothers were aware of childcare services, and only 8 percent had used these services.33 In another study of African-American and Latino families with HIV-positive children, seropositive parents reported more isolation and fewer financial and support resources than uninfected caregivers.34
Causes of Burden for Formal Caregivers
Many of the burdens experienced by formal and informal caregivers are the same. For example, fear of exposure is a major source of stress for some health professionals.35, 36 Formal caregivers may experience a lack of support from their families and professional colleagues due to concerns about contagion or "stigma by association." 25, 37 They also may share the informal caregiver's emotional distress about not being able to "cure" the disease.
The unpredictable course of HIV disease and the wide range of potential complications can create significant burden, particularly for clinicians with limited HIV management experience. While attempting to control chronic symptoms and conditions, clinicians also must be prepared to treat episodes of acute illness and therapy-related side effects. Additional sources of burden include repeated exposure to the death of young patients, ethical dilemmas, and finding the time to counsel and support informal caregivers.38, 39 Formal caregivers also may be burdened by workplace-related stressors, such as work overload, unrealistic expectations of what can be accomplished, lack of decisionmaking autonomy, communication problems and role conflicts, and inadequate medical resources and referral arrangements.35, 40, 41
Consequences of Caregiver Burden
Caring for an individual with a chronic disease, such as HIV/AIDS, leaves little time or energy for self-care. The multiple tasks performed by caregivers may cause them to neglect nutrition, exercise, socialization, and sleep.42 One study of women caring for people with physical or mental disabilities found that caregivers with high levels of subjective burden were less likely to eat balanced diets, exercise, and participate in stress management and health-promoting activities.18 Another study of women caring for HIV-positive relatives and friends found that almost two-thirds had experienced at least one chronic physical symptom.27 A third study of Latinas caring for family members with HIV/AIDS documented high levels of physical health problems and affective disorders.43
Caregiver burden often produces high levels of chronic stress. The literature on caregiving distinguishes between two types of stress.20, 44 Primary stressors arise from the actual tasks of caregiving. These stressors may result from caregiving demands (i.e., number and intensity of caregiving activities), role overload, and/or the sense of being coerced into caregiving. Secondary stressors are influenced by the caregiving role but arise outside that role. For example, caregiving may adversely affect outside employment, exacerbate family frictions, and/or reduce social contacts.
Caregivers under stress exhibit a wide range of signs and symptoms (Table 20-1, PDF). The extent to which caregivers experience these symptoms depends on their personalities, belief systems, health and energy levels, and coping skills.42 Additional factors affecting caregivers' response to stress include the severity of the care recipient's illness, the duration of caregiving, and the accessibility of social support and financial resources.20, 27, 45
Rewards of Caregiving
Although studies of caregiving tend to focus on the "burden" of caring, there also are many rewards. When asked about the positive aspects of providing HIV/AIDS care, informal caregivers cite opportunities to:
One study suggests that helping caregivers define the meaningful and valued aspects of their roles and become more attuned to "brief human moments" that create positive feelings can enhance both physical and psychological well-being.24
Finding rewards in caregiving does not necessarily make these activities less stressful. A high degree of involvement, whether positive or negative, can produce stress. The term "burnout" is used to describe the process in which everyday stressors that are not addressed gradually undermine the caregiver's mental and physical health.28
Psychologists define burnout in terms of three components: emotional exhaustion, depersonalization, and reduced personal accomplishment.47 Emotional exhaustion represents the basic stress dimension of burnout. This condition is characterized by feelings of being emotionally overextended and lacking enough energy to face another day. Depersonalization represents the interpersonal dimension of burnout. Feeling drained and "used up," the caregiver develops an emotional buffer of detached concern and interacts with others in a negative and callous manner. Reduced personal accomplishment represents the self-evaluation dimension of burnout. This dimension is characterized by a growing sense of inadequacy and may result in a self-imposed verdict of failure.
Factors Contributing to Caregiver Burnout
The literature on caregiving suggests that both individual and situational factors increase the risk of burnout (Table 20-2, PDF). Empirical research suggests that situational factors are more strongly predictive of burnout than individual characteristics.47, 50, 51 Caregivers experiencing work overload and interpersonal conflict over an extended period of time are particularly vulnerable to burnout.47
Impact of Caregiver Burnout
Caregiver burnout has serious consequences for the caregiver, care recipient, and health care system. Caregivers typically experience burnout in stages.48 Early warning signs may include feeling less motivated, putting in more hours with poorer results, and/or voicing complaints about the caregiving role. During later stages, caregivers develop many of the physical, psychological, and behavioral problems listed in Table 20-1 (PDF). Because burnout occurs gradually, caregivers tend to keep working until the downward spiral goes too far and the costs in performance and well-being become unacceptably high.47
Care recipients suffer when burnout leads to lower-quality care. Caregivers struggling with emotional exhaustion often become less sensitive to the care recipient's feelings and needs. This "compassion fatigue" increases the likelihood that the care recipient will be neglected; treated in a detached, mechanical fashion; or even subjected to mental/physical abuse.42, 52 Burnout symptoms, such as decreased judgmental ability and difficulty focusing on tasks, make it more difficult for caregivers to competently perform clinical roles. As these changes occur, care recipients may be at increased risk for disrupted care or placement in a long-term care facility.50, 52
The health care system is negatively affected when burnout depletes the supply of experienced caregivers and creates a need for continual training of replacements. Burnout among caregivers who remain in the system may require greater commitments of resources for their physical and mental health care.10 The health care system incurs additional costs when relatives and family members become too exhausted to provide in-home care and responsibility shifts to formal service providers.
Preventing and Managing Burnout in Informal Caregivers
Health professionals historically have been trained to focus on the clinician-patient relationship, with little attention to the needs of the informal caregiver.48 Newer educational models encourage health professionals to develop "partnerships" with informal caregivers that include periodic assessment of the caregiver and the patient.53 By assessing the causes and levels of stress in informal caregivers, health professionals can more effectively tailor interventions to meet their needs.
Assessing Caregiver Burden
Some informal caregivers accompany HIV-positive patients to medical appointments and can be easily identified. If a patient's sources of emotional and practical support are not known, this question should be asked when taking the family and social history. Once informal caregivers are identified, their level of perceived burden and the presence of affective disorders, such as depression and anxiety, should be assessed.52 The availability, accessibility, and appropriateness of social support resources also should be evaluated.32 Because caregiver burden tends to intensify over time, particularly among caregivers with the fewest personal and material resources, health professionals should periodically reassess each caregiver's problems and needs.45
The early detection of caregiver burden conserves resources by preventing or reducing medical visits for psychosomatic complaints.54 In many cases, health professionals can assess the degree of burden by asking just a few questions. Parks and Novielli offer the following examples:52
Information on caregiver stress and burden also can be obtained from self-administered questionnaires. For example, the American Medical Association has developed a caregiver self-assessment questionnaire for use in physician offices.53 This questionnaire contains 16 yes/no items and 2 global scale items designed to measure indices of emotional and physical distress. Health professionals can use the caregiver's total score or scores on individual questions to assess the need for medical or counseling interventions and to recommend appropriate community resources.
Information gained from the systematic assessment of caregiver burden places health professionals in a stronger position to help informal caregivers cope with stressors. Time should be set aside during each medical appointment to discuss what is happening in caregivers' lives and to give them a chance to express their feelings.32 In addition to serving as empathic listeners, clinicians may be able to offer practical suggestions for eliminating or better managing stressors. They also can help caregivers recognize and build on aspects of their lives that contribute to physical, psychological, and social well-being.55
Caregivers of HIV-positive children require comprehensive assessments of emotional burden and social support.32 One study of parents, relatives, and friends caring for HIV-positive children31 identified six psychosocial needs:
Caregivers experiencing guilt, hopelessness, or spiritual distress may need to be referred for religious or spiritual counseling. Discussions with clergy, hospital/hospice chaplains, or other spiritual counselors can help caregivers find comfort and peace even in the absence of strong religious or philosophical belief systems.56 Caregivers with affective disorders or high levels of burden should be referred to mental health professionals for assessment and counseling.
Health professionals sometimes overlook the importance of extending counseling into the bereavement period.57 If the relatives and friends providing care had a close relationship with the care recipient, grief may extend for two or more years after death.58 Bereavement counseling can help caregivers mourn appropriately, cope with the changes resulting from their loss, and plan for the future. (See Chapter 16: Grief and Bereavement.)
Strategies for Counteracting Burnout and Promoting Self-Care
The literature on caregiving describes a wide variety of strategies for preventing and managing burnout. Most of these strategies focus on ways of managing the caregiving situation rather than on eliminating or reducing stressors in the caregiving environment.59 Caregivers are advised to reevaluate caregiving demands and resources, clarify values and priorities, and adopt coping strategies that match the nature of the stressors. Anecdotal reports from informal caregivers suggest that many of these strategies are effective; however, relatively few studies have been conducted to assess actual outcomes.47 Six approaches to counteracting burnout and promoting self-care receive frequent mention in the literature:
Respite care provides short-term, temporary, nonmedical care to people with disabilities and chronic or terminal illnesses so that their primary caregivers can rest, take a vacation, or attend to personal tasks. Some respite programs send a caregiver to the care recipient's home; others require that the individual come to a respite care facility. Services are provided for varying lengths of time, depending upon the primary caregiver's needs and available resources.
Respite programs are provided by a variety of organizations, including adult day care centers, hospitals, home health agencies, nursing homes, local Red Cross chapters, schools, and faith communities. In some localities, the families of people with chronic illnesses have formed respite care exchange programs.65
The ARCH National Respite Network and Resource Center operates a national locator service (www.chtop.com/locator.htm) to help caregivers locate respite care providers in their states and communities. Contact information also can be obtained from AIDS service organizations, health departments, and United Way offices. Studies of the impact of respite care have documented significant improvements in caregivers' emotional well-being and perceived ability to cope, but these effects may be short-lived without repeated use.42 Many family caregivers who could benefit from respite services never request this help because of fears that they will be shirking their responsibilities, that something will go wrong during the stay, or that they will no longer feel needed if the temporary caregiver performs well.68 Parents of HIV-positive children may be particularly reluctant to use respite services because of the guilt and stigma associated with the mode of transmission.32 Discussions with health professionals and families who have used respite care may help informal caregivers overcome these obstacles.
Informal sources of social support include:
Caregiver Support Groups
Support groups bring caregivers together to share feelings and experiences and to learn from one another. In contrast to group therapy, their purpose is not to change participants' behaviors but to enhance decision-making capacity and coping effectiveness.70 Research suggests that support groups can significantly reduce caregiver stress; however, they cannot substitute for professional counseling or therapy when these services are needed.42
One of the major benefits of support groups is to provide an outlet for emotions that cannot be expressed in the home.48 Support groups also provide opportunities to:
To take advantage of these opportunities, the relatives and friends of HIV-positive individuals must be willing to divulge their caregiving status -- something that may be very difficult to do in small, closely knit communities. They also must find the time to attend support group meetings, locate someone who can provide care in their absence, and make arrangements for transportation. Telephone support groups may be an option for caregivers who wish to maintain anonymity or who cannot attend meetings.
Many of the stressors contributing to caregiver burnout are caused by misinformation or the lack of useful information. After assessing the caregiver's level of knowledge about HIV/AIDS and the types of tasks performed, health professionals should offer appropriate education. The educational topics may include:
Informal caregivers also may benefit from instruction on infection control, pain and symptom management, and simple nursing techniques (e.g., administering injections, cleaning and dressing ulcers).
As new treatments are discovered and standards of care change, informal caregivers need to receive ongoing education. Topics should be introduced slowly, over an extended period, since individuals under stress can process only small amounts of information at a given time.42 To the extent possible, these topics should be explained in nonmedical terms, with ample opportunity for caregivers to ask questions. The use of educationally and linguistically appropriate videos and 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 addition to helping individual caregivers develop more effective coping strategies, interventions should target policies and practices in the workplace that create or exacerbate stress.28 Formal caregivers can benefit from coping effectiveness training, but these techniques will be only partially effective if the work environment is not supportive.47
Situational strategies attempt to reduce the incidence of burnout by eliminating or modifying worksite stressors. These strategies promote engagement with work (i.e., high energy, strong involvement, and a sense of self-efficacy) by:
Conflict among formal caregivers can be prevented, or at least managed, by scheduling regular forums for case discussion.40 Although these sessions reduce the time available for direct service, they help promote collegiality, information sharing, and a consensual, comprehensive approach to care.40, 42 Case forums may need to be supplemented by support groups, where caregivers can openly acknowledge the stresses of their work and discuss ways of eliminating or coping with stressors.
Over the past decade, improved antiretroviral regimens, concerns about the costs of inpatient care, and consumer preferences have shifted HIV care from hospitals to home and community-based settings.9, 71 This shift has placed heavy demands on the family and friends of HIV-positive individuals, 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 rapidly changing standards of HIV care.
Because informal caregivers experience varying types of burdens and have differential access to financial resources and social support, strategies for counteracting burnout and promoting self-care must be tailored to their individual needs. Many of the strategies recommended in the caregiving literature assume that caregivers are middle-income, fairly well educated, and surrounded by family and friends who are willing to help. As HIV continues to penetrate poor and marginalized communities, new or modified approaches may be needed to help caregivers manage stress and maintain good physical and mental health. These strategies are likely to require family-centered case management and integrated primary care and behavioral health services for patients and caregivers.
Strategies for counteracting burnout among formal caregivers must address both individual and situational factors. Formal caregivers may be able to change the ways in which they deal with stressors by developing a better understanding of their personalities, values, and coping strategies. However, their efforts will be only partially effective if negative policies and practices in the workplace remain unchanged. Finding ways to enhance the working environment may ultimately prove more effective in preventing burnout than teaching caregivers how to manage stress.
Advances in HIV antiretroviral therapy are changing but not necessarily improving the conditions of caregiving. Although HIV-positive individuals are living longer, many are developing therapy-related side effects that require monitoring and management in the home. By systematically assessing the causes and levels of stress in informal caregivers, health professionals can offer education and counseling that is more responsive to individual needs.
This article was provided by U.S. Health Resources and Services Administration.