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Supporting Patients in Care
Guide for HIV/AIDS Clinical Care, HRSA HIV/AIDS Bureau
* Based on Sheffield and Casale, see "References."
Patients infected with HIV face a complex array of medical, psychological, and social challenges. A strong provider-patient relationship, the assistance of a multidisciplinary care team, and frequent office visits are key aspects of care. Through both the specific services they provide and their overall approach to patients, clinics can have a substantial impact on the quality of care for HIV-infected persons. For example, a patient-centered clinic environment in which education and supportive interventions are emphasized will greatly enhance patients' knowledge about HIV infection. Improving patients' skills in self-management will increase their participation in making health care decisions and provide a stimulus for more active involvement in their own care.
Providers need to be mindful of several special issues, including the following:
These issues are discussed further in the sections that follow.
A first step in ensuring that patients are "engaged in care" is the establishment of systems that include mechanisms for coordination and communication of care.
Providing comprehensive care for HIV-infected patients requires a patient-centered focus, a multidisciplinary team, and a willingness to spend time on building relationships with patients. Providers should do the following:
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 because health, employment, income, relationships with friends, lovers, and family, and hope all may be threatened. Many patients feel overwhelmed, and even patients who seem to be adjusting reasonably well can find it difficult to keep all of the many appointments that may be scheduled as they initiate care. Providers need to recognize that patients' emotional states affect their ability to solve problems and attend to important medical or social issues. Providers can do the following:
Self-management support is defined by the Institute of Medicine as the systematic provision of education and supportive interventions by health care staff to increase patients' skills and confidence in managing their health problems, including regular assessment of progress and setbacks, goal setting, and help with problem solving.
It can be viewed as a portfolio of techniques and tools to help patients choose healthy behaviors, and as a fundamental shift of the provider-patient relationship toward a collaborative partnership.
After patients have come to terms with their HIV infection, they are ready to embark upon the lifelong process of caring for themselves. Patient self-management involves adopting new health behaviors and requires changes that will occur as a progression of motivational skills. Motivation is defined as the "probability" that a person will enter into, continue, and adhere to a specific change strategy. Patients will feel empowered as they gain the skills and confidence to be active participants in their care.
Providers need to do the following:
Regardless of whether a patient is new to care or has been in care for many years, the burden of a chronic disease is wearing. Positive change in behavior needs to be an ongoing focus of patient-centered care. After patients have self-management skills, they still need help setting action plans for their health care. The provider needs to help patients adopt realistic action plans by:
Patients need to be active participants in making decisions regarding their health care. Peer educators and patient advisory groups can help patients become more involved in their care.
In order to best support patients, it is helpful to have peer educators available for them during initial and subsequent visits. This helps to decrease patient anxiety and promotes a patient-centered atmosphere. Providers need to realize that peer educators:
Another valuable tool for patient-centered care is the use of a patient advisory group (PAG). The PAG is the voice of the people that the clinic serves. The HIV program will listen to this group's suggestions and use them to improve patient satisfaction and clinic functionality. The PAG's role could involve identifying clinic problems, recommending changes in the care delivery system, and discussing new treatment approaches. A successful PAG does the following:
Stigma is founded on fear and misinformation. Theodore de Bruyn observed that stigma is associated with HIV/AIDS because, "It is a life-threatening 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."
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 therefore may not trust care providers. It is essential for providers to be supportive of patients who are dealing with the burden of stigma.
Unfortunately, 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 that, and also taught what to do in situations that do pose risk, such as when bleeding occurs. Clinic staff members must model behavior in this area. For example, gloves should be worn only as appropriate during physical examinations and as consistent with universal precautions. There should not be separate facilities or special procedures for HIV-infected patients.
Demonstrating respect and providing excellent care to patients with various cultural backgrounds, beliefs, and sexual orientations are central to medical professionalism. Providers should approach patients in an open and nonjudgmental fashion and be familiar with medical management issues unique to these populations, such as appropriate screening for sexually transmitted infections for men who have sex with men (MSM) and hormonal treatment for transgender patients. Clinic staff members also must be respectful and supportive; having a staff that is familiar with lesbian, gay, bisexual, and transgender (LGBT) cultures 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 lesbian, gay, or transgender. In addition, providers and clinic staff members should be aware of special legal issues that affect these populations. For example, designating a durable power of attorney for medical decision making can be particularly important in states that do not recognize same-sex partners as legal next of kin.
African-Americans, Hispanics, and some immigrant groups are disproportionately affected by HIV, and many people of color with HIV infection have major socioeconomic problems such as poverty, homelessness, lack of medical insurance, lack of acculturation, and undocumented immigration status. All these obstacles can make accessing health care difficult and attending to health problems less of a priority for the individual. A patient's cultural background influences health-related beliefs and behaviors, and personal or historical adverse experiences may make some patients distrustful of medical care. In addition, some patients' distrust of medical research can impede their willingness to access new drug therapies. Culturally competent communication between provider and patient may substantially affect adherence with therapies. For all these reasons, providers should do the following:
Confidentiality of medical information is always mandatory, but the stakes are particularly high for patients infected with HIV, who risk losing medical insurance, employment, and the support of friends or family if their diagnosis is disclosed inappropriately. Although people with HIV infection 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.
Adherence to the Health Insurance Portability and Accountability Act (HIPAA) regulations is an important aspect of protecting patient confidentiality. Personnel policies should reinforce measures such as requirements that papers and computer screens containing patient-identifying information not be left unattended and should include provisions for documenting whether phone messages can be left for the patient, and if so, with whom.
Patients who have a support network function better than those who are isolated. However, patients' fears of disclosure are often well founded, and providers must find a balance between accepting patients' unwillingness to disclose their HIV status and the need to develop support networks. Patients may find support groups or individual psychotherapy sessions beneficial in deciding when to disclose, and to whom.
The sex and needle-sharing partners of people with HIV need to be informed about their possible exposure to HIV. Local health departments can either assist patients in making these disclosures or provide anonymous partner notification for them.
A patient-centered clinic staff can help patients with disclosure. For example, they could encourage patients to bring their partners to one of their clinic or counselor appointments in order to disclose their HIV serostatus in the context of the clinic visit. This could allow the health care professional to answer the partners' questions and would provide a neutral environment for the disclosure discussion. Risk of intimate-partner violence should be assessed.
Primary care providers must consider their public health role in curbing the spread of HIV. The incidence of HIV remains unacceptably high, and may be increasing in some populations, especially in communities with relaxed adherence to safer sex recommendations.
All AIDS diagnoses and, in some states, all positive HIV test results must be reported to the state health department. State laws vary in reporting requirements and subsequent notification of potentially exposed individuals (see the National HIV/AIDS Clinicians' Consultation Center Compendium of State HIV Testing Laws), 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 department. (The Association of State and Territorial Health Officers provides links to all state health departments.) Providers are required to do the following:
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