Informed and empowered patients are better able to achieve healthy outcomes as a result of improved communication and development of trust with their care providers. HIV patient education provides patients with knowledge about HIV infection, including prevention, treatment, and other aspects of care, along with tools that enable them to participate more actively in decisions regarding their medical care. Given the complexity and the rapid evolution of HIV information, education and skills-building should be an ongoing activity and a key aspect of the clinical care of HIV patients. This chapter provides a brief review of the areas that should be addressed in patient education and discusses some strategies for integrating patient education into HIV care; additional information on patient education is found in many other chapters, particularly Supporting Patients in Care, Preventing HIV Transmission/Prevention with Positives, Smoking Cessation, and Adherence, as well as in the "Patient Education" sections found at the end of most of the clinical chapters.
A newly diagnosed patient presents to clinic after being referred from a testing center in the community. The patient received the positive HIV test results more than a year ago, but has not been ready to seek care until now. The patient feared hearing that he/she was "going to die." Now, he/she is ready to consider facing this "terminal" illness. The patient received some information about HIV infection at the testing center, but that was months ago.
The patient will need extensive information and education about HIV infection in general, his/her individual health status and prognosis, and the support and care systems that are available. Below are some suggestions about specific areas to review with a new patient.
Patient education should cover the following topics:
In most clinics, a number of different personnel may take on the responsibilities of providing health education to patients. They may include primary care providers, nurses, social workers, case managers, and pharmacists. Some clinics have designated health educators whose role is to provide this type of support for patients. Even when a formal health educator is available, a collaborative, multidisciplinary approach to patient education serves both patients and providers optimally. However, it is important to ensure that patient education messages are coordinated and that patients are receiving consistent information.
Patient education must be provided in a language and at a literacy level appropriate for the patient. Patient education should be conducted in the patient's primary language, if possible; otherwise, skilled medical interpreters should be involved.
Rarely are patients able to absorb all of the necessary information in a single session. Attention and comprehension levels are optimal during the first 15-20 minutes of a visit, after which an individual's ability to absorb and retain information declines. Therefore, clinics should consider strategies to integrate brief patient education messages throughout the course of patient care and to engage patients in this process. Support groups, case managers, and peer educators can be invaluable in this process of engagement.
It is important to keep the medical information specific to the patient. Although there are some areas of education that should be considered for all patients (see above), patients should not be required to have a high level of understanding in each area. Patients should be given the opportunity to learn as much about an area as they would like, and should be encouraged to gain a working knowledge of the information that is necessary to keep them healthy and safe. Patients vary widely in terms of their interest level in mastering the details of their illness. For example, in the area of "What is HIV?" there may be some patients who want to know details about the basic science and immunologic impact of HIV. With this information, these patients might then want to take the lead in making treatment and care decisions for themselves, in consultation with their care providers. Other patients, however, would feel overwhelmed by this volume of information and involvement and may be best engaged in participating in their care by knowing how HIV is transmitted, how to keep themselves healthy, and how to access more information if they want it. Some patients would prefer for their care providers to "just tell them what to do" rather than take the lead in making their own treatment decisions.
There are a number of websites that provide HIV information for patients (see chapter Web-Based Resources). Many patients may prefer this form of self-education. Encourage patients to convey any information they discover to their care providers for further discussion. Reminding patients that they can be teachers as well as students can be a useful strategy for engaging patients in this process. In addition, patients may learn of novel tools and information sources that could be useful to others.
The following are some useful suggestions that providers can convey to their patients: