The Healthcare Experiences of African Americans with a Dual Diagnosis of HIV/AIDS and a Nutrition-Related Chronic Disease: A Pilot Study
Abstract
:1. Introduction
2. Materials and Methods
3. Results
3.1. Theme 1: Negative Interactions
“You know, you build that bond, but when you get someone different every time … And I hate needles, so they just take my … I be frustrated every time I go. ‘Cause I know I gotta give blood. I don’t like to give blood. I feel as though for somebody that I knew before might know a little bit more about me from the last visit”.
“I would like for them to actually get to know who I am and what I am going through instead of signing off a script and pushing me out the door”.
“And some doctors they’ll push you off and say, “Oh, I recommend you go here. Or I recommend you” … You know what I mean? They the same type of doctor you are. Why are you sending me there? I don’ been sent from Bergen Country to Newark to Edison, NJ, and everybody go, “I suggest you go back to Newark University.” And there, all they wanna do is give me some type of chemo treatment. Chemo for what? I ain’t got no cancer. Then they hit you with “Oh, well, your immune system is hyped up and it’s attacking your eyes”.
“I asked her, and she looked at my chart, she said, “You lucky your ass is alive.” Okay. Now she’s supposed to be the smartest one on the staff. Really? No bedside manners”.
“I have a very good rapport with my doctor, for the simple fact that I’ve been seeing him since 1998. He talks so much to me, I have to tell him I gotta go, but there’s nothing that we don’t discuss. Anything that I feel like I need to say to him, I will say it. And he’s … We sat up and even talked about diets, food that should be eaten and what not. Mind you, he’s not a nutritionist, but we cover everything. Before he place me on a medication for whatever is going on with me, he’ll do his research and say I’m not gonna put you on this right now. Let me do my research on it”.
3.2. Theme 2: Barriers to Quality Healthcare
“People are dying because they do not have health insurance. How can we bury some of these people? With HIV? With AIDS? Medicine is very important. I had to bury two of them because they didn’t have insurance”.
“Mine [insurance plan] ain’t good, I got well-care…My doctor order me Motrin but because of the well-care, I got the cheap, fake Motrin … I have to take like 5 pills because its 400 milligrams. That is what my insurance is paying for”.
“They pushed it [improvements in healthcare for HIV-positive people] under the rug. They didn’t care because it was doing damage to US. Now they pay attention because it is happening to rich White people, now they care…Now it is all over the news, but when it was right here in our community. It wasn’t like they weren’t paying attention”.
“If you go to the emergency room or places like that, if you see a doctor … You go in there for a cold or a cut on your finger, and you see somebody come in there with a mask or line all over they face, tied up, what do you think that is? You think that’s not showing you that it still exists? They look at your blood and see HIV or AIDS anything, they start masking up. Like you got something that’s contagious through the air. I feel judged, I have to put my walls up”.
“And it’s sad because a lot of even the health care professionals are ignorant. They are not educated enough to deal with HIV patients. Because the doctors should know. But some get educated, some don’t … stigma is alive and well”.
“I have a condition where my blood clots up. And then I have a blockage in my artery. And my other primary doctor, she sent me to a clinic to get these tests and once they seen HIV, I could see the difference, you know? And then I see them putting on gloves. And I’m looking around the room like, “Okay, that’s how you feeling? That was in my head. So I took the test but I never went back”.
“After I tell them all of my business, two weeks later there’s someone new. I have to start all over again with a stranger…That is where confidentiality goes out the door”.
“Doctors putting my business out there makes me want to fall back on poor behaviors. No confidentiality. I changed doctors. I did not trust her anymore. You have to be careful with what you allow certain people and things to have access to”.
3.3. Theme 3: Needs and Advocacy
“Because as long as you taking your medication as prescribed for your HIV, that’s going to take care of that, okay, but if you have other illnesses going on, it’s the HIV is not going kill you, it’s the high blood pressure, diabetes is not only from HIV. It’s just, it’s, we have to be more focused on it than someone that doesn’t have the virus”.
“Because I can remember five years ago, being diagnosed. Like I didn’t know what to do. I’m not from Patterson, I come all the way to Patterson to come to treatment to find out I’m sick. So it’s like, “Who do I tell? Like should I call my kids, because my kids don’t know about me.” I don’t have parents, I can’t call them. The person I caught it from, she’s been active using. So it’s like, who do you tell?”
“I feel like my care… could do better if I actually had a psychologist who actually took the time to help me understand … things I’m going through instead of trying to push medications on me”.
“Protesting can help but it only gets so far … Your voice gets heard for a little bit, they come and pacify you and then move on. When people like you [the researchers] come to ask us questions, I think you should be our voice. I think they would pay more attention to you than people like us”.
“A lot of people is they own worst enemy. They scared of everything. I wanna say that you need to be the best advocate for yourself. Listen, if you’re unhappy, you need to speak up and have changes made.”
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Category | Sample Questions |
---|---|
Attitudes and Beliefs About Health | 1. How would you describe the health care that you are currently receiving? 2. Have you had any negative experiences with seeking health care? Give an example. 3. Why do you think you had that negative experience? 4. Have you had any positive experiences with health care? Give an example. |
Relationships with Physicians | 5. What comes to mind when you think about the relationship you have with your doctor? 6. What do you look for in selecting a doctor? 7. In your opinion what makes someone a good doctor? 8. How did this influence your experience? |
Facilitators and Barriers to Quality Care | 9. What is your biggest concern or barriers that you face regarding your health care? Give an example. 10. In your opinion, what are some of the things that your health care provider/doctor/nurse can do to address these barriers? |
Needs and Advocacy | 11. In your opinion, what are some of the things that you can do to improve your healthcare? (Prompt: specific communication techniques with healthcare professionals, tasks, actions such as making priority lists, goal setting, stress management, eating better, getting enough sleep, etc.) 12. What is the role of the media/local politicians (mayor, governor, others in local/state/federal office) in helping to address/advocate for better healthcare for people diagnosed with HIV/AIDS and other chronic diseases such as diabetes, hypertension or heart disease? What are the ways in which this should be done? 13. What is your role in advocating for better healthcare for yourself? What are the ways in which this should be done? |
Sex | |
Female | n = 16 (61.5%) |
Male | n = 10 (38.5%) |
Age | Mean = 53 years, SD ± 10.8 |
History of past or present substance abuse | n = 26 (100.0%) |
Education Level | |
Less than High School | n = 4 (15.3%) |
Some High School, No GED | n = 8 (30.7%) |
High School Graduate or GED | n = 12 (46.1%) |
Some College | n = 1 (3.8%) |
B.A./B.S | n = 1 (3.8%) |
Associates Degree | n = 0 (0.0%) |
Graduate Degree | n = 0 (0.0%) |
Marital Status | |
Single | n = 16 (61.5%) |
Long-term relationship | n = 8 (30.7%) |
Married | n = 1 (3.8%) |
Separated | n = 1 (3.8%) |
Divorced | n = 0 (0.0%) |
Living Situation | |
House/apartment | n = 2 (7.6%) |
Homeless (in a shelter) | n = 23 (88.4%) |
Group home/halfway house | n = 1 (3.8%) |
Don’t know/refused | n = 0 (0.0%) |
Employment Situation | |
Unemployed or laid-off | n = 23 (88.4%) |
Working full-time | n = 1 (3.8%) |
Working part-time | n = 1 (3.8%) |
Don’t know/refused | n = 1 (3.8%) |
Chronic Conditions (in addition to HIV/AIDS) | |
Diabetes | n = 8 (30.8%) |
Heart Disease | n = 3 (11.5%) |
Hypertension | n = 15 (57.7%) |
History of past or present mental health conditions such as depression and/or anxiety | |
Yes | n = 26 (100.0%) |
No | n = 0 (0.0%) |
Currently Seeing Doctor/Nurse for Chronic Condition | |
Yes | n = 25 (96.1%) |
No | n = 1 (3.8%) |
Currently Taking Prescribed Medication for Chronic Condition | |
Yes | n = 25 (96.1%) |
No | n = 1 (3.8%) |
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Mahadevan, M.; Amutah-Onukagha, N.; Kwong, V. The Healthcare Experiences of African Americans with a Dual Diagnosis of HIV/AIDS and a Nutrition-Related Chronic Disease: A Pilot Study. Healthcare 2023, 11, 28. https://doi.org/10.3390/healthcare11010028
Mahadevan M, Amutah-Onukagha N, Kwong V. The Healthcare Experiences of African Americans with a Dual Diagnosis of HIV/AIDS and a Nutrition-Related Chronic Disease: A Pilot Study. Healthcare. 2023; 11(1):28. https://doi.org/10.3390/healthcare11010028
Chicago/Turabian StyleMahadevan, Meena, Ndidiamaka Amutah-Onukagha, and Valerie Kwong. 2023. "The Healthcare Experiences of African Americans with a Dual Diagnosis of HIV/AIDS and a Nutrition-Related Chronic Disease: A Pilot Study" Healthcare 11, no. 1: 28. https://doi.org/10.3390/healthcare11010028