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. 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.
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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. Those who do acknowledge their caregiving status may find it difficult to obtain support from familial or social networks.
HIV-positive parents face additional challenges that increase their sense of burden. 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. 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.
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.
The multiple tasks performed by caregivers may cause them to neglect nutrition, exercise, socialization, and sleep. Caregiver burden often produces high levels of chronic stress. The literature on caregiving distinguishes between two types of stress. These stressors may result from caregiving demands i. Secondary stressors are influenced by the caregiving role but arise outside that role. Caregivers under stress exhibit a wide range of signs and symptoms Table , PDF.
The extent to which caregivers experience these symptoms depends on their personalities, belief systems, health and energy levels, and coping skills. Although studies of caregiving tend to focus on the "burden" of caring, there also are many rewards. Bring mission and purpose to one's life 25 , Gain a sense of personal effectiveness by demonstrating competence under very difficult circumstances 25 , Experience the positive feelings associated with loving, caring, and feeling needed 24 , 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.
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.
Psychologists define burnout in terms of three components: emotional exhaustion, depersonalization, and reduced personal accomplishment. 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.
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The literature on caregiving suggests that both individual and situational factors increase the risk of burnout Table , PDF. Empirical research suggests that situational factors are more strongly predictive of burnout than individual characteristics. Caregiver burnout has serious consequences for the caregiver, care recipient, and health care system. Caregivers typically experience burnout in stages. During later stages, caregivers develop many of the physical, psychological, and behavioral problems listed in Table 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.
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. As these changes occur, care recipients may be at increased risk for disrupted care or placement in a long-term care facility. 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. Health professionals historically have been trained to focus on the clinician-patient relationship, with little attention to the needs of the informal caregiver. 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.
The early detection of caregiver burden conserves resources by preventing or reducing medical visits for psychosomatic complaints. Parks and Novielli offer the following examples: 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. 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. They also can help caregivers recognize and build on aspects of their lives that contribute to physical, psychological, and social well-being.
Caregivers of HIV-positive children require comprehensive assessments of emotional burden and social support. Need to Maintain Physical Integrity i. Need to Learn i. Need to Communicate i. Desire for greater support from their informal social networks. Need to Feel Worthwhile and Useful i. Need for Continuity of Care i. Caregivers experiencing guilt, hopelessness, or spiritual distress may need to be referred for religious or spiritual counseling.
Health professionals sometimes overlook the importance of extending counseling into the bereavement period. See Chapter Grief and Bereavement.
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. Anecdotal reports from informal caregivers suggest that many of these strategies are effective; however, relatively few studies have been conducted to assess actual outcomes.
Research suggests that caregivers who use problem-focused strategies to cope with stressful situations are less likely to experience burnout than those who use emotion-focused strategies. Emotion-focused strategies include efforts to escape or avoid problems, emotional outbursts, and self-accusation. Health professionals often can assess informal caregivers' risk for burnout by asking hypothetical questions about coping strategies. Specific examples of problem-focused approaches to stress can help caregivers move toward more active, engaged forms of coping.
Books and web sites for caregivers offer the following suggestions: See Table , PDF for additional web sites. Educate yourself about your care recipient's condition. Understanding the disease process and caregiving issues will make it easier to deal with day-to-day problems. Ask questions. When accompanying the care recipient to a medical appointment, don't be afraid to ask questions or to admit that you don't understand what the health professional is saying.
Keep a daily journal to record the events that cause stress in your life. After several weeks, you should be better prepared to identify problems, evaluate the criticality of the situation, and weigh possible solutions. Discuss your problems with someone else.
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In addition to learning how others deal with similar problems, you may be able to help them manage stress. If your coping strategies are not working, seek professional help. A mental health counselor may be able to help you better understand your feelings and needs and suggest new ways of managing stress. Informal caregivers sometimes get so involved with their work that they lose all perspective and burn out quickly. Once goals are established, caregiving patterns can be changed by:. Breaking down tasks into small acts of care Learning how to adjust the pace of caregiving Asking others to help with caregiving tasks , Encouraging the care recipient to help with tasks and continue self-care as long as possible Caregivers with high levels of subjective burden should be reminded that no one expects them to be perfect.
A "level of care prescription" from the physician may help them achieve a better balance between caregiving responsibilities and their own physical and mental health needs. One guide for caregivers offers the following advice:. Let go. No one person can do it all. Acknowledge that as a human you have limitations just like everyone else. Allow others to help you; delegate responsibilities.
Practice asking for help and saying no once in awhile. Lower your expectations and tolerate that things might not get done perfectly. Prioritize tasks and learn to manage your time. Many caregivers use relaxation techniques to manage stress and prevent burnout. These techniques should fit with the individual caregiver's interests, time, and resources.
Some caregivers may wish to learn yoga or tai chi, while others may prefer to take a walk, listen to music, or soak in a warm bath. Armstrong describes a visualization technique in which caregivers close their eyes and imagine a scene of beauty and tranquility into which they project themselves.
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She also suggests reserving ten minutes each day for a "worry break. Additional relaxation techniques recommended by caregivers include meditation, deep-breathing exercises, massage therapy, gardening, exercising, reading, and socializing with friends. Healthful lifestyles play an important role in burnout prevention.
By eating three balanced meals each day, engaging in regular physical activity, and sleeping 7 to 9 hours each night, caregivers can increase their capacity to manage stress.
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In addition to promoting cardiovascular fitness and building muscular strength, exercise programs increase energy and provide a needed outlet for pent-up emotions. These programs may involve vigorous workouts, but significant health benefits also can be gained from just walking 20 to 30 minutes each day. One study of informal caregivers of HIV-positive minority women suggests that maintaining a regular exercise regimen, along with a spiritual focus, can be an effective coping strategy.
Some caregivers react to stress by engaging in unhealthful behaviors such as smoking, drinking, and drug misuse. While these chemicals may provide a "quick fix," their long-term use is likely to increase anxiety and health problems -- particularly among caregivers who are not eating or sleeping properly.
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Alternative and complementary therapies, such as acupuncture, aromatherapy, acupressure, and massage, also may help to relieve stress. Caregivers often respond to stress by becoming over-involved with caregiving duties. Health professionals should encourage caregivers to take regular breaks and to keep up with their interests and hobbies as best they can.
Others may simply need to get away for a few hours. Health professionals can help caregivers "jump-start" the self-renewal process by linking them with social support resources. Although U. Social support resources should be explored if the caregiver's answers to screening questions suggest a need for outside assistance. Formal sources of social support include:. Home health agencies provide skilled nursing care, homemaker and personal care services, and rehabilitation services. Hospice programs provide in-home or residential palliative and supportive care services for patients in the terminal stages of illness.
Respite care programs provide short-term, temporary nonmedical care for people with disabilities and chronic or terminal illnesses. Patient-ventilator system checks Postural drainage therapy Pulmonary rehabilitation Pulse oximetry Resuscitation and defibrillation in the health care setting Sampling for arterial blood gas analysis Selection of a device for delivery of aerosol to the lung parenchyma Selection of an aerosol device for neonatal and pediatric patients Selection of an oxygen delivery device for neonatal and pediatric patients Selection of device, administration of bronchodilator, and evaluation of response to therapy in mechanically ventilated patients Single-breath carbon monoxide diffusing capacity Spirometry Static lung volumes Suctioning of the patient in the home Training the health care professional for the role of patient and caregiver education Use of positive airway pressure adjuncts to bronchial hygiene therapy Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine Diagnosis and treatment of respiratory illness in children and adults Placement Schedules.
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