A Guide to Primary Care of People with HIV/AIDS - Canadian Public ...

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A Guide to Primary Care of People with HIV/AIDS Chapter 2: Approach to the Patient 2 • Anticipate that significant time will be required for patient education (see section on Patient Education below). • Explicitly outline clinic operations and expectations for provider-patient communication. • Plan to see patients often and communicate regularly between visits to answer questions, assess treatment effectiveness, and manage side effects. • Arrange to see patients with acute problems quickly. How can providers help patients with HIV/AIDS cope with the emotional issues they face? Patients coming to terms with HIV infection often experience a range of emotions, including anger, fear, shock, disbelief, sadness, and depression. Loss is a major issue for patients with HIV disease because health, employment, income, relationships with friends, lovers, and family, and hope may all be threatened. Many patients feel overwhelmed, and providers need to recognize that a patient’s emotional state affects the ability to solve problems and attend to important medical or social issues. Even patients who seem to be adjusting reasonably well can find it difficult to keep all of the appointments that are scheduled as they initiate care. Providers can do the following: • Assess each patient’s emotional state and the availability of friends and family for emotional support. Patients may feel hesitant about seeking emotional support, and some will need counseling to help them decide whether to disclose their diagnosis to friends, family, or employers. • Deliver important information in easily understood terms and in small amounts. Reassess patient understanding of crucial information at subsequent visits, and repeat important information as necessary. • Screen for anxiety, depression (including suicidal ideation), and substance use. • Refer patients to community resources for crisis counseling, support groups, and, if appropriate, psychiatric treatment to help them achieve emotional stability (see also Chapter 14: Mental Health Disorders). • Assign a case manager who can help reduce anxiety about keeping life in order. STIGMA AND DISCRIMINATION Why is stigma associated with HIV/AIDS? Stigma is founded on fear and misinformation. Theodore de Bruyn has observed that stigma is associated with HIV/AIDS because “it is a lifethreatening disease; people are afraid of contracting HIV; it is associated with behaviors that are considered deviant; a belief that HIV/AIDS has been contracted due to unacceptable lifestyle choices; and, some believe it is the result of a moral fault which deserves punishment” (de Bruyn, Theodore. Paper prepared for the Canadian HIV/AIDS Legal Network. 1999). Stigma can adversely affect how patients are perceived by others and how they view themselves. The stigma associated with HIV/AIDS is such that individuals known to be or suspected of being infected with HIV may be excluded from community activities and suffer isolation or abandonment. Some patients may feel ambivalent about seeking medical care if by doing so they risk disclosing their condition. Others may have learned from experience to expect rejection and are therefore untrusting of all care providers. It is essential for providers to be supportive of patients dealing with the burden of stigma. How can providers support patients facing the stigma of fear of contagion? The clinic must be inviting, and all staff members must model behavior in this area. For example, gloves should be worn only as appropriate during physical exams and as consistent with universal precautions. There should not be separate facilities or procedures for HIV-infected patients. Patients and their families are often unaware that routine household contact with a person with HIV poses no risk of contagion. They should be educated about this but also taught what to do in situations that do pose risk, such as bleeding. How can providers support patients who face stigma associated with being gay, lesbian, bisexual, or transgender? Demonstrating respect and providing excellent care to patients with various cultural backgrounds, beliefs, and sexual orientations define professionalism. Providers should approach patients in an open and nonjudgmental fashion and be familiar with medical management issues unique to these populations, such as STD screening for men who have sex with men (MSM) and high-dose hormonal treatment for transgender male-to-female patients. Clinic staff members must also be respectful and supportive; having staff who are familiar with gay and lesbian culture is a natural way to create a welcoming environment. Providers and social workers should be aware of community agencies with resources available to people who are gay, lesbian, or transgender. In addition, providers and clinic staff should be aware of special legal issues that affect these populations. For 6 U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau
A Guide to Primary Care of People with HIV/AIDS Chapter 2: Approach to the Patient example, designating a durable power of attorney for medical decision making can be particularly important in states that do not recognize same-gender partners as legal next of kin. What other special cultural issues affect patients infected with HIV? Minorities are disproportionately affected by HIV, and many people of color with HIV disease have major socioeconomic problems such as poverty, homelessness, lack of medical insurance, lack of acculturation, and undocumented immigration status. All of these can make accessing health care difficult and attending to health problems less of a priority. A patient’s cultural background influences health beliefs and behaviors, and the effectiveness of provider-patient communication may affect compliance with therapy. In addition, prior adverse experiences may make some patients distrustful of medical care. For all of these reasons, providers should do the following: • Carefully explore what each patient believes about his or her health, what would be appropriate treatment, and who should be involved in medical decision making. • Use professional interpreters to help overcome language barriers. • Use case managers to help overcome social barriers. CONFIDENTIALITY AND DISCLOSURE Why is confidentiality especially important for patients with HIV disease? Confidentiality of medical information is always mandatory, but the stakes are particularly high for patients infected with HIV, who risk losing medical insurance, employment, or the support of friends or family if the wrong individuals learn of their diagnosis. Unfortunately, fear and ignorance persist regarding HIV transmission; people with HIV disease may be shunned because of the incorrect belief that HIV can be transmitted via casual contact. Although people with HIV disease are protected against discrimination under provisions of the Americans with Disabilities Act, discrimination can be difficult to prove, and there are strict time limits after which charges of discrimination can no longer be made. What steps should providers take to protect patient confidentiality? By adhering to the newly implemented Health Insurance Portability and Accountability Act (HIPAA) regulations, providers are protecting patient confidentiality. Personnel policies should reinforce measures such as requiring that papers and computer screens containing patient identifying information not be left unattended and documenting whether phone messages can be left for the patient, and if they can, with whom. How can providers help patients decide whom to disclose their HIV status to? Patients with a support network function better than those who are isolated. However, patients’ fear of disclosure is often well founded, and providers must find a balance between accepting patients’ unwillingness to disclose and the need to develop support networks. Patients may find support groups or individual psychotherapy sessions beneficial in deciding to whom and when to disclose. The sex and needle-sharing partners of people with HIV need to be informed about their possible exposure to HIV. The local health department should be able to either assist patients in making these disclosures or provide anonymous partner notification for them. What public health role do providers play in the HIV epidemic? Primary care providers must also consider their public health role in curbing the spread of HIV. The nationwide increase in the incidence of syphilis and gonorrhea, especially among MSM, suggests that the advent of potent antiretroviral therapy has resulted in relaxed adherence to safer sex recommendations. All patients with a diagnosis of AIDS and, in many states, those with a positive HIV test must be reported to the State health department. Laws vary by state regarding reporting requirements and subsequent notification of potentially exposed individuals, but the name of the source contact is never divulged to the person being notified. Providers should become familiar with the laws of their jurisdiction by contacting their health departments. (The Association of State and Territorial Health Officers provides links to all State health departments at: http://www.astho.org.) Providers are required to do the following: 2 U.S. Department of Health and Human Services, Health Resources and Services Administration, HIV/AIDS Bureau 7
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