By Cynthia Poindexter, PhD, MSW
|A Relationship Based on Partnership|
|Knowledge of HIV Disease, Treatment, and Prevention|
|Medication Adherence Support|
When you are living with HIV, you are facing a complex landscape. Everything in your life has the potential to feel frightening and complicated: the illness itself, maintaining health and managing stress, medical management and decision-making, rethinking and renegotiating social and sexual relationships, finding health and service providers who will be respectful and effective, understanding benefits and programs, and successfully using large, complex service systems.
When you have HIV it is often important to find a professional who is “in your corner,” and one option is a professional social worker. When you are choosing a social worker, it is best to find one who is able to be your partner with a helping relationship that is based on respect and maintains confidentiality. Your social worker should be knowledgeable about HIV disease and resources, and skilled at medication adherence support, service management, benefits advice, and counseling. Here are some tips to help you find a case manager or social worker who is a good “fit” with your needs.
Here are some things to consider when you are choosing a social worker:
- Does the social worker seem to listen closely to you to more fully understand your perspective, experience, beliefs, and needs?
- Does he or she offer suggestions or options in an open manner, as your partner in problem solving?
- Does he or she consistently invite your input and feedback on plans?
- Is he or she dependable and trustworthy? For example, does he or she contact you as promised and tell you the truth about difficulties or barriers?
- Does he or she acknowledge your strengths and encourage your independence?
- Does he or she help with researching resources and options?
- Does he or she treat you as a capable person who happens to need professional support, rather than as an incompetent person?
- Does he or she ask you how you are feeling about your work together and how he or she can better serve you?
If the answer to these questions is yes, it is a good indication that you have found a social worker or case manager who sees you as a partner and someone who recognizes your right and ability to make decisions about your life.
Not only do people with HIV face HIV-related stigma and discrimination, they often also feel judged or disrespected due to their race, ethnicity, culture, national origins, religion, gender or gender identity, age, sexual orientation, sexual activity, drug use, education, or income. You do not need to try to work with a service provider who cannot treat you with respect.
A professional, respectful social worker should ask you whom you define as family, what is important to you, what you believe, and what is customary in your spiritual, religious or cultural beliefs. Choosing a good social worker means working with a provider who will treat you with respect, even when he or she disagrees with you or your decisions.
Keeping private information confidential [not telling others without your permission] is required by law and by the code of ethics that social workers live by. Your history, financial situation, sexual activity, and HIV status are all examples of private information. Sometimes social workers hear about things that are disturbing to them, such as illegal drug use, drug dealing, selling sex, or lack of HIV disclosure to drug or sex partners. However, a well-trained social worker, though concerned about this information, will know how to express his or her concerns to you and help you consider the consequences of your actions without breaking confidentiality. No information should be shared with or given to another agency or professional without your signed consent.
Ask the social worker about the process for giving permission [called “consent”] for your information to be released. Also ask your social worker what information they may need to share with a supervisor or team. A special note here: many mental health and health care providers, including social workers, must report suspected abuse of a child or adult, and must act on any serious plan to commit suicide or homicide. These situations are not eligible for confidentiality.
You cannot expect a case manager or social worker to be as current about medical issues as a doctor or nurse, but you can expect that he or she is striving to keep up with the basic facts of HIV. This includes what medical treatment is available and how HIV is and is not passed from one person to another. You also want your social worker or case manager to be understanding when you have days when physical symptoms, intense emotions, or medication side effects that make it difficult for you to keep appointments. It is also important to work with a social worker who can talk to you about your sexual and drug behavior in a way that is nonjudgmental, professional, calm, and accurate so that you can assess risks to yourself and others and problem-solve about how to be healthier and safer.
It can be tough to decide when to go on anti-HIV medicines, and it can be difficult to stick to or adhere to the complicated prescriptions, directions, and schedules. You may want a support person who can be an educator and advocate for you in this process. A caring social worker can talk with you to help you (1) decide if you are ready to commit to the medicines, (2) help you figure out how to adjust your schedule, (3) tell you about tools to help you adhere, and (4) encourage you to take the medicines as prescribed so that you stay well and your HIV does not become resistant to the medicines.
You will need a social worker who knows about all the different agencies, programs, and benefits available, and strives to connect you with all resources that you may be eligible for and interested in. Good service management (also called “case management”) is designed to ensure benefits and services are available and accessible to people who need them. Sometimes it feels overwhelming to figure out how to get the money, housing, clothing, medical care, and nutrition you need to live with HIV or AIDS. A social worker can help you access medical and dental care, mental health services, or nutritional counseling. A social worker can arrange for food or housing assistance or help you apply for Medicaid or Social Security Disability. You may also ask a social worker to help you find spiritual counseling or holistic ways to maintain health (like massage or acupuncture).
There are many potential crisis points when you have HIV:
- Testing positive
- Learning that a partner or child has HIV
- Telling people you have HIV
- Having your first serious HIV-related illness
- Dealing with unexpected lab results
- Getting an AIDS diagnosis
- Being in the hospital
- Losing the ability to work
- Battling fatigue or loss of functioning, or facing a life-threatening infection or cancer.
When you have a good relationship with a social worker or case manager, you can turn to that person in times of crisis for listening, encouragement, planning, and problem-solving. Because HIV is a challenging, unpredictable illness it is not unusual to feel out of control, sad, angry, isolated, guilty, or over-stressed. You can always ask a social worker for supportive counseling, either from them or by referring you to another professional or peer counselor. It is best to find a social worker or an agency that is flexible and able to respond to you within a reasonable amount of time, rather than only offering you contact on a fixed schedule.
Sometimes a diagnosis of HIV can trigger anger, or grief, or sadness over previous abuse (such as incest) or past losses. Talk with your social worker about available services for counseling to address these past situations that have resurfaced because you are now living with HIV. Options for emotional support included one-on-one therapy, support groups, couples counseling, family counseling, and peer support. A professional social worker/case manager will help connect you to the emotional support services that you need today.
To find a licensed clinical social worker in your area that can help you, click here.