Here at Women Alive we understand that communication is important! And that you as an HIV-infected woman are important! And foremost, that your questions deserve an answer and not just any answer, but the one that you can understand and one in which you are satisfied. We are piloting a new concept in the HIV arena. A column that will provide you with a safe, confidential forum to ask questions that you feel are important and answers that you can understand.
The health-care provider-patient relationship is an important relationship for individuals infected with HIV. It is a place where communication should be open, non-threatening and respectful. Your appointment time should provide a supportive environment to ask questions, get answers and make decisions about your disease and its management. However, many times patients feel intimidated, fearful, judged and powerless, and leave their appointments unsatisfied with unanswered questions. Many healthcare providers, when faced with a patient's difficult diagnosis, such as HIV infection, close down their communications (not telling you everything about your disease or treatment choices or making decisions for you); thus closing off
opportunities for shared decision-making. Appropriate professional attitudes and behaviors have come under increasing scrutiny in the United States, and current medical schools are revising their curricula to include encouragement in developing desireable attitudes.
Current literature supports that effective communication does have an impact on outcomes. Which means if you don't understand, for example, the importance of taking your medications, you may miss a few doses and then your viral load creeps up and pretty soon your medicine doesn't work anymore (this is a negative outcome). But perhaps if you felt comfortable asking the question, "what happens if I don't take my medication correctly-" and received an answer that you felt good about, you might never miss a dose and your viral load would stay undetectable (this is a positive outcome). So, through advocacy (asking the question) and education (understanding the answer) comes empowerment (becoming an active participant in
your health care); and through empowerment you begin to take an active part in your medical plan. Sometimes that active part includes not doing what your medical professional thinks is best because you know it is not what is necessarily best for you. But, hey! You have made the decision that is right for you and understand what may or may not happen (the outcome).
Here at Women Alive, we understand the difficulty of getting your questions answered, of problem solving and what it takes to learn to be an advocate. We hope that the development of this column will serve as a starting place in feeling that someone is listening and will help you to find the answers that you need to become empowered. Every question is important and we will try to select the questions that appear to be the most important and beneficial for everyone. If we cannot answer your question in our column, we will try to send you referrals that may point you in the right direction or you can always talk to our Treatment Advocates or our Peer-to-Peer Counselors.
If you have a question or concern that you would like to share with Debbie, separate the following page, fill it out, and send it in to:
Women Alive Coalition
1566 S. Burnside Ave.
Los Angeles, CA 90019
Or check out Dear Debbie online at www.women-alive.org. Questions and concerns will be accepted electronically at DearDebbie@women-alive.org. Also, feel free to stop by the agency where you can put your questions in the drop box located in the common room area of Women Alive. We look forward to hearing from you, and remember, every question is important!