A mixed methods study looked at how health literacy and communication with healthcare providers impacted the health outcomes of women living with HIV, with a focus on Black and Latina women in the United States. Communication issues with providers, amplified by low health literacy, resulted in diminished trust, lower quality of patient and provider interactions, and poor health outcomes.
Women living with HIV, especially Black and Latina women, experience stigma and face structural discrimination for multiple aspects of their identity. Black and Latina women are more likely to receive poor health care and experience worse health outcomes, including being disproportionately impacted by HIV.
Communication greatly influences the quality of interactions between women living with HIV and healthcare providers. When patients feel stigmatised by their providers, they are less likely trust their provider and follow their recommendations and more likely to miss appointments. Poor communication, such as using unclear medical terms, also negatively impacts adherence.
Health literacy is a patient’s ability to obtain and understand relevant health information so as to make decisions about their medical condition and treatment. Low health literacy is one barrier to effective provider and patient communication that can also lead to poor health outcomes.
This study examined the intersection of provider communication and health literacy and their impact on HIV health outcomes among women who were enrolled in the Women’s Interagency HIV Study, a cohort study in the United States that looks at the impact of HIV on women.
Dr Henna Budhwani of the University of Alabama Birmingham and colleagues analysed data from a mixed-methods study which collected data between 2017 and 2018 through focus groups, interviews, and self-administered surveys using validated measures.
For the qualitative data, researchers held 12 focus groups with Black and Latina women living with HIV in Georgia, Alabama, New York, North Carolina, Illinois, and Mississippi. Three women were also interviewed in Spanish.
A total of 92 women were included. Most (89%) were Black, the rest were Latina. All participants were at least 25, and over half (57%) were older than 50. Most (65%) had been aware of their HIV status for over ten years. Over half (53%) had an annual income below the federal poverty guideline.
Several themes emerged through discussions about the communication participants had with their providers, including respect and non-verbal cues, expressions of judgement, the impact of health literacy, and how unclear and insufficient communication impacted trust.
Several women discussed non-verbal behaviour from providers that they perceived as discriminatory, disrespectful, or unsettling:
“Okay, when he walked in the room… we shook hands, which I always do... He wiped his hand on his pants, and then sat down. Whether it’s cuz I’m HIV positive, I’m black, you think I’m nasty, whatever it was. Every thought that went through my mind was negative. It was all inclusive. You are a Caucasian male. I’m an African American female. I’m HIV positive. You know my status. I don’t know yours. You wanna come in here and present yourself as being better than me? All of that went through my mind.”
Providers who used touch and other ways to connect with patients were perceived as more capable, compassionate, and empathetic:
“One of my providers shook my hand, actually said, ‘Hi, [name]. How are you? How is your son [son’s name]?’ Those kinds of…those personal things, that really makes a big difference on your whole outlook when you’re going right to the doctor… you know what I’m saying?”
Many women reported experiencing expressions of condescension and judgement from providers:
“I had unprotected sex again, caught something. I don’t know. [The provider] was just rude about it, about me catching something and not being careful. It was just the way she was talking to me, like she was downgrading me, so it just felt uncomfortable. After that, I wind up catching something again. Yeah, I thought I was being safe, but I wound up catching something again. It took me a while to actually go back to my doctor because I was scared I may get her, or they was gonna judge me…”
Low health literacy of participants was a potential barrier to provider and patient communications:
“It’s all [providers] talk about, your viral load, your CD4 count, all that stuff. You need to break it down.”
The participants appreciated when providers took the extra time to explain health conditions, new diagnoses, and medication considerations:
“Now, my doctor… I love her, cuz she will break it down to the smallest term for me, and… she’s the one that taught me, when I go to the doctor’s office, what I should ask for. And I should remember the things that I need to ask for, you know… and just explain to me about the different medicine procedures, whatever I ask about. And stuff like that, so her and I, we communicate, we communicate real good.”
In contrast, trust was harmed by insufficient or unclear communication from providers:
“Okay, I remember one time I came for labs. She didn’t tell me that I had to fast, so I came here for nothing, had to call the cab to go back home and make another -- reschedule another appointment. Then I told her, ‘Do I have to fast? Because you didn’t tell me that I have to fast. Do I have to fast?’ She goes, ‘Oh, yeah. You have to fast.’ Okay, thank you for sharing that with me.”
Some of the gaps in communications discussed may have been due to oversights or providers assuming a certain level of health literacy. However, the impact of such miscommunication led at least one participant to feel that her HIV provider was deliberately withholding information from her:
“Some of the things are -- well, some of the doctors, it’s like if I’m not saying anything is wrong, then they just take it that nothing’s wrong. Sometimes, I wanna know -- I want the doctors to tell me. I have to question everything. Like, “Has my blood pressure been good? Does my liver look good? Does my kidneys look good?” I find myself trying to think of questions to ask them, that I feel like they’re not tellin’ me.”
The researchers analysed cross-sectional survey data on 1,455 women living with HIV in New York, Washington DC, Illinois, California, Georgia, Alabama, Mississippi, Florida, and North Carolina. All participants were English speaking.
Most participants (74%) were Black, 15% were White, and 10% were another race and/or ethnicity. Participants were aged between 28 and 83 with an average age of 51. Over half (55%) of participants had a White HIV provider. Almost a third (32%) finished high school, and over a third (35%) had an average household income between $6,000 and $12,000.
The surveys used validated measures to assess health literacy, the quality of patient-provider interactions, trust in HIV care providers, HIV visit adherence, and antiretroviral (ART) therapy adherence. The results suggest that health literacy had a significant positive impact on patient-provider interaction quality (p<0.001), trust in HIV providers (p<0.001), ART adherence (p<0.01), and attendance at clinic visits(p<0.05).
To show the indirect impact of health literacy on HIV outcomes, researchers constructed three models, in which health literacy (the predictor) led to patient-provider interaction quality (the mediator), and what impact this had on trust in HIV care providers, ART adherence, and visit attendance.
In the models, health literacy was shown to have a significant positive indirect effect on trust in HIV providers (p<0.001), ART adherence (p<0.01), and visit adherence (p<0.05) by way of increasing patient-provider interaction quality.
Taken together, these results show how improving communication can improve the quality of patient and provider interactions, leading to greater trust and improved health outcomes. Improving the health literacy of women living with HIV can help achieve this goal, as can provider communication that is respectful, clear, stigma-free, and appropriate to a patient’s health literacy level.
The authors suggest that shared decision-making models, where providers and patients collaborate to make decisions about the care plan, is one way to improve both communication and health literacy.
Budhwani H et al. Patient health literacy and communication with providers among women living with HIV: a mixed methods study. AIDS and Behavior, online ahead of print October 8 2021.