HIV is a disease I can never forget in my life. It led to the death of some very close friends and family members. Even years later, I mourn not just their loss, but the what-ifs—if only I’d known then what I know now, perhaps I could’ve helped alleviate their suffering and prevented their untimely passing.
Forty-one years after the first case of HIV was reported in the US, many Black families don’t have the necessary information about the disease and how to care for family members living with it. This issue needs to be addressed in caregiver communities considering the fact that this is the first generation of elderly, retired individuals with HIV. The most painful part is that Blacks are more susceptible to it. We make up just 13% of the US population; however, we account for over 42% of HIV cases, as reported by the US Department of Health and Human Services Office of Minority Health.
As a woman, it is painful to know that Black women are 15.3 times more likely to die from HIV than white women, while a Black man is 6 times more likely to die from the disease than a non-Hispanic white man. This calls for an urgent guide on how to care for those already living with the virus while we continue with the campaign on how to eradicate it from our communities.
Caring for people with HIV is no small responsibility. You must have patience, empathy, and a deep understanding of how the disease affects the patient’s body and mind. Therefore, it is crucial to have the right resources, irrespective of whether you are new or well-experienced in caring for people with HIV. Thanks to modern medicine, it’s now a manageable condition and not a death sentence. People with this disease can go on to live long, happy lives.
In this guide, I’ll share educational online resources that would help empower HIV caregivers to carry out this noble task of providing physical and daily support for the people they care for, and how they can self-care themselves.
HIV Care and Resources: Where to Get the Right Resources
Ignorance is the major fuel in the spread of this disease that has dealt a heavy blow to our Community. Voice of America News, The Center for HIV Law and Policy, and Elizabeth Glaser Pediatric AIDS Foundation listed ignorance as one of the biggest challenges of the disease despite observing World AIDS Day every 1st of December.
However, this shouldn’t be the case as there are organizations dedicated to providing easily accessible online resources you can use. Here are five of the best:
1. Centers for Disease Control and Prevention (CDC).
CDC has a section dedicated to just HIV starting from what HIV is, how it is spread, testing available, and even care.
2. National Institute of Health (NIH).
This site has well-detailed articles about the disease, including treatment guidelines, clinical research, and educational materials for patients and caregivers.
3. UNAIDS.
The UNAIDS website shares updates, reports, and tools to help prevent, treat, and care for people living with HIV/AIDS.
4. USAID HIV/AIDS.
Their website shows how they are making a difference in the fight against HIV/AIDS and their partnerships.
5. AIDSVu.
AIDSVu shows the impact and progress of HIV using maps and charts.
Physical and Daily Care Support
Every day, HIV patients need support for their physical health, which could range from medication to monitoring symptoms. Part of the caregiver’s responsibility is to promote HIV awareness, put an end to misconceptions, and stop the stigma behind HIV in our community. The following resources will help make your work easier as a caregiver:
1. Caregiver Action Network (CAN).
Although CAN is not dedicated to HIV, it has a daily guide on health maintenance and safety required in handling all varieties of caregiving, including HIV.
I love the resources here because they’re tailored to various types of caregiving, practical advice, and toolkits that explain fundamental information about caregiving. I highly recommend Caregiver Action for Blacks who are new to caregiving.
2. Human Immunodeficiency Virus Website.
HIV.org is a website dedicated to everything about HIV, including HIV caregiving. Under the Starting HIV Care menu, you have three options: Locate an HIV Care Provider, Types of Providers, and Take Charge of Your Care. I also found Staying In HIV Care, another menu worth exploring.
It has many valuable resources for caregivers. You’ll also find safe food and exercises needed to support patients with the disease.
Caregiver Self-Care: A Must
Two studies from the National Library of Medicine, one in 2016 and the other in 2017, highlighted how HIV caregiving can be both physically and emotionally demanding. Even professional caregivers are not exempted from the burnout that comes from taking care of HIV patients. Knowing how to care for yourself has become a must, otherwise, we will go from dealing with one problem to two.
To be able to deal with both the physical and psychological stress that comes with HIV caregiving, you need to check out the resources available on caregiving.org. You will learn how to balance caregiving with personal life, manage stress, and, most importantly, get resources and support on managing your mental health.
It takes a compassionate person to be a caregiver for HIV patients. You need a multifaceted approach, hence the need for the resources I’ve provided here. Every step you take in caregiving is a step in giving life. Don’t look back and wish you had known better.
Try as much as possible to leverage all the available resources I have shared here. They’ll help you stay informed and empowered while ensuring you have the support needed to give Blacks living with HIV a meaningful life as long as possible.
At Elevate Black Health, we recommend that you do not neglect your health in the process of caregiving. You can only care well for others when you are healthy yourself.
For resources on how you can be part of a change, see the links below:
