By Leah Holmes, LICSW

Health literacy is the ability to read, understand, and benefit from both written and verbal health care information. It is an important and frequently overlooked component of effective medical care. Nowhere is health literacy more critical to improved health outcomes than in the treatment of chronic diseases, such as HIV/AIDS.

AIDS (acquired immunodeficiency syndrome) is caused by HIV (human immunodeficiency virus). By killing or damaging cells of the body’s immune system, HIV progressively destroys the body’s ability to fight infections and certain cancers. People living with HIV progress to the diagnosis of AIDS when they develop life-threatening diseases called opportunistic infections. These infections are caused by microbes such as viruses or bacteria that make people with healthy immune systems sick.

The treatment of HIV/AIDS has improved dramatically since 1981. For persons living with HIV/AIDs who have access to medical treatment, the HIV/AIDS drug therapies can prolonging their lives. However, access to therapies continues to be limited in many countries. These drug therapies can be very complicated. That is why it is so important that people with AIDS are able to communicate effectively with their medical providers.

Challenges to Understanding Medical Communication

Understanding medical instructions is challenging for two reasons. First, medical practice changes rapidly. Medical tests and procedures that were unheard of a decade ago are now commonplace, meaning there is more information for patients to learn. Second, educational materials are often written using medical terms and jargon that are unfamiliar to the average person. Yet, the ability to follow health care instructions affects how consumers prepare for medical tests or take prescribed medications.

Health literacy is especially important in the treatment of HIV/AIDS. When HIV/AIDS was first identified as a disease, there were no medical tests to track or monitor the illness and few medications to treat it. In the mid-1990’s, several changes occurred to improve the management of the disease. It is now possible to monitor the effect of HIV disease on the immune system by measuring CD4 (or T-cell) counts and viral load. T-cells are white blood cells in the body that help a person fight off disease. Viral load refers to the level of the HIV virus in the body.

In addition, effective medications are now more widely available. Because of these changes, people with HIV/AIDS are living longer, healthier lives. Since the introduction of HIV antiretroviral medicines, a person’s ability to follow a complex schedule of medications is vital to obtaining maximum benefit.

Health literacy includes learning how to take medications correctly. This is especially urgent because if persons with HIV/AIDS do not take every scheduled dose of their medications on schedule every day, they might not receive the maximum benefit of the medicine.

The ability of clients/patients to understand and follow medical providers’ instructions can make a profound difference in their remaining as healthy as possible. Culture, primary language, reading ability, and health care beliefs can all be factors in miscommunication that affect health literacy. Additionally, many people living with HIV/AIDS are confused about how to take their medications and what their CD4 count and viral load mean.

Steps to Improve Communication and HIV Care

HIV medical care is complex and changes rapidly. It is important to have a doctor who listens to you and explains your medical care and test results in plain language. To improve your understanding of medical instructions, you can take these steps:

• Find a doctor with experience treating HIV who you are comfortable talking with. HIV is a chronic disease, and you will have regular doctor visits throughout your life, the frequency of which will depend on your health status, treatment, and monitoring needs. Communication and trust are vital to maintaining your health.
• Tell your doctor at the start of the medical visit if you have questions. Doing so will help the doctor fit the discussion in the available time.
• Write down in advance questions you want to ask your doctor. If you do not understand the answers, ask the doctor to explain them in plain language.
• Tell your doctor about medications you are taking and other types of treatment you are receiving. Some drugs interact with HIV medication, and your doctor will need to adjust your prescription for best effect.
• Healing practices vary between cultures and may supplement your care. If you are getting treatment with a healer in your community, let your doctor know.
• Be sure to tell your doctor if you take methadone. Several HIV medications will affect how much methadone you will need to take.
• Take a supportive person (friend or relative) with you to your appointment. The extra emotional support can increase your comfort in asking questions and listening to answers. It also provides another set of ears in case you miss something.
• A medical social worker will have information about HIV resources in your community and can help you obtain benefits and medications.
• If you do not have a support person, ask the clinic social worker to help you talk with the doctor or answer questions about your concerns.
• Often, medical information is given to you in a brochure or on a chart. If you do not understand it, ask your doctor, nurse, or social worker to explain it to you.
• Finding someone you trust to talk about HIV is very helpful. Many clinics have social workers available to provide emotional support and assist with referrals. Social workers can help you plan who to tell about your HIV disease and how to do that.
• If you need a translator or interpreter, the social worker may be able to arrange for that service.
• Your clinic or another agency may have a support group for people living with HIV/AIDS. These are important sources of help where members share experiences and tips for maintaining health.
• When you start a medication, ask to speak with a pharmacist when getting the prescription filled. The pharmacist can tell you about when to take each drug, how to take it, and answer questions about side effects. Even if the information is the same as what your doctor told you, it might be helpful to hear it again when you have had time to think about it.
• Use one drug store for all of your medications. Pharmacists are aware of possible drug interactions. This is especially important if you have more than one doctor.
• HIV medications are complicated. It is helpful to have an HIV experienced health care provider such as a nurse or nurse practitioner show you how to take the pills and what side effects may occur. Either your clinic or an HIV/AIDS agency may offer this service. Ask about it.
• Some people do not want to take HIV medications and may not get medical care for this reason. Tell your doctor about your concerns. Even if you are not taking medications, you will continue to benefit from regular medical care.
• There are still many myths about how HIV is transmitted. Ask your medical team for the facts.

Understanding and Managing HIV

Medical information is becoming increasingly challenging for the average consumer to understand. At the same time, people are increasingly responsible for managing their own health care.

HIV medical care is especially complex. Health care professionals are becoming aware of the need to make information easier to understand.

While many materials are now available with the “average patient” in mind, patients have a role to play in health literacy by asking for clear communication.

If you feel that your doctor is not listening to you, tell him or her. If talking with your doctor does not get easier, find another doctor. Ask a social worker for help in finding resources or getting emotional support. Regular medical care and good communication with medical professionals are important. Better communication helps you understand and manage HIV. Your own health depends on it.

Leah Holmes, LICSW, has received funding for her work from the Special Projects of National Significance of the Health Services and Resource Administration (HRSA).  HRSA is part of the U.S. Department of Health and Human Services.