A qualitative study among Black and Hispanic women living with HIV in South Florida explored how medical case managers and clinical providers helped the women stay in care and adhere to their HIV treatment through a patient-centred lens. Reported in the Journal of Racial and Ethnic Health Disparities, the study found that having a provider who knew and respected them as a person was a key theme.
Other facilitators to care included proactive and responsive case managers who provided motivation and helped them navigate stigma, and clinical providers who educated them with clear communication, reviewed lab results, spent enough time with them, and provided holistic care that addressed their physical, clinical, and emotional needs.
Women living with HIV often have worse health outcomes and higher mortality than other people living with HIV. Women from a racial and ethnic minority may face additional barriers, such as poor provider communication, lack of culturally relevant services, and limited English proficiency.
Patient-centred care has been shown to positively impact health outcomes, particularly for those with complex medical and social needs. Patient-centred care uses a coordinated, team-based approach to provide holistic and integrated services. The patient takes an active role in decision making and their care management, and services are responsive to their needs, preferences, and values.
The US federal Ryan White program that supports low income, uninsured and under-insured people living with HIV uses a patient-centred approach. Holistic HIV care and supportive services (for example, transportation assistance and peer support) are provided through a multidisciplinary team. Often, the team includes a medical case manager who helps address social and economic barriers and supports retention in care, adherence, and viral suppression.
The study
Dr Sofia Fernandez and colleagues from Florida International University set out to explore how Black and Hispanic women living with HIV felt about the care they received from their medical case managers and clinical providers at nine different Ryan White Program-funded agencies that provide case management services across Miami-Dade County.
Researchers trained in cultural sensitivity conducted semi-structured, in-depth interviews with women who had previously indicated willingness to be contacted for research purposes. Eligible participants included adult women living with HIV who had been receiving services for at least six months, who identified as Black/ African American, Hispanic/ Latina, or Haitian.
The study included 75 women. Forty per cent identified as non-Hispanic Black or African American, 40% as Hispanic/Latina, and 20% as Haitian. In total, 64% of participants identified as Black and the rest as White. The women were aged 18-35 (7%), 36-49 (31%), 50-59 (37%), and 60 or older (25%).
A minority (25%) of the women were born in the US, however a majority (88%) had lived in Miami for ten years or more. Around half of the interviews took place in English (51%), a third in Spanish, and the rest were in Haitain Creole.
Relationships with medical case managers
Participants were asked to describe the relationship with their medical case manager, how they helped them stay in care and take their HIV treatment as prescribed, and how well their case manager understood their unique needs and challenges.
Women described how proactive involvement – ‘staying on top of them’ – and responsiveness from their case managers helped them stay in care and on HIV treatment. Their case managers helped them with paperwork, made sure they got their medication, reached out if appointments were missed, and set reminders. One women shared that:
“He makes my appointments. And then he calls me and when I’m there he asks, ‘Did you go to the doctor? Are you at the doctor?’ And sometimes he says, ‘When you finish, call me.’ Then, when I finish, he tells me, ‘They gave you a prescription? Bring them so I can send you where I have to send you. Do you want an appointment with the dentist? Yes? Ok, I will make you one. Go because I already made you the appointment’. There are many things.”
Case managers were also a source of encouragement and accountability for the women. Case managers celebrated successes with clients and motivated them to stay current on required programme documents, to make medical appointments, and to adhere to treatment. They asked about barriers their clients were facing and held them accountable for taking care of their health:
“She says, ‘Ah, fam [family], do not neglect your medication.’ She always checks if I am okay. She always looks on the computer to see if I take my medication correctly. When I take it, she can see that and she says, ‘You’re okay, you’re good.’ When I am not good too, she calls me into her office … She says, ‘Fam, I am looking right now. I see you’re slacking off. What’s going on with you? Do not slack off, you have kids to take care of.’”
Emotional support was a key source of motivation. Women shared how case managers underscored that HIV did not define them and that they weren’t alone.
"Proactive involvement – ‘staying on top of them’ – and responsiveness from their case managers helped them stay in care and on HIV treatment."
“A lot of times, I fail. Like real fail cause, for me, I have HIV, I’m schizophrenic, bipolar and I’m diabetic. So at first, when I started, I feel like I was gonna give up, like I couldn’t take this no more. I feel to myself that there was no way how to feel, like it makes sense I die. But then she said no. She said to me I can live my life the same way that other people live their life … When I wanna give up. When I’m not taking my medication, not only my HIV medication. When I’m not going to mental health, she’s really mad … When I’m not doings what I’m supposed to do, she’s really mad. She don’t settle for stuff when I do wrong, she always get upset about it. So she’s a motivator and she’s a pusher.”
Many participants also mentioned how their case managers knew details about their personal and family situations, and used those to motivate them:
“Every time I see my kids, it reminds me what he has told me to always do. If I want to see my kids every day, I have to take my medication. I always keep in mind that if I need something, I can call him at any time and he will answer, and he motivates me to keep living, to continue. It doesn’t matter what happened to me … You can have life quality as long as you keep doing your treatment.”
Many participants discussed how their case managers helped them navigate feelings of fear, stigma, and shame. Women appreciated when their case managers educated them about HIV to reduce their fears:
“She educates me still because like I said, I got diagnosed in 2008. It’s still a lot of things that I don’t know. Any time I ask her a question dealing with HIV, she is hands on. She breaks it down to me like a two-year-old. And for me, that’s important because sometimes fear keeps me from asking questions.”
Relationships with HIV clinical providers
Simple communication and education from HIV clinical providers (e.g. physicians, physician assistants and advanced practice registered nurses) helped participants stay in care and adhere to their treatment. They appreciated honest, simple, and educational communication about HIV and health decisions.
“He gives me advice and he shows me guidelines or things about it. And what I liked about him is he gives me, as far as my meds, he pointed out medicine to me that don’t really have side effects … Cause side effects is another thing. He goes step by step with me. He really goes step by step. If I don’t understand something, he’ll go further. ‘Let me go over to the pharmacist to talk to them’. He shows us and I appreciate him for that.”
One participant shared that:
“Sometimes he even draws for me. He draws to explain diseases or medications that I don’t understand. He does the drawing on a paper so that I can then understand it well.”
The most common way women described being involved in their own medical care was when their providers reviewed their lab results with them. The women found this to be very beneficial to staying in care and on treatment, and described how their providers offered education, reassurance, and motivation:
“He tells me, “Keep it up, [participant name].” He gives it to me – shows it to me. Yeah, he shows it to me, “[Participant name,] you are this level, you are ten, you are these. You are everything. Keep it up.” He always gives me my paper.”
The women were asked to describe if and how their provider knew them as a person and treated them with care and respect. Many cited instances when their provider asked about and gave attention to personal and family situations. The women felt valued and respected when their provider remembered details about their life:
“He always remembers how my kids are, how’s my relationship with my children, how I’m doing. He always asks, ‘How you doing?’ So, I feel seen. When he sees me, it’s about me. I visited the clinic with my son. My son that lives with me. He’s impaired. He can’t walk and he took the time to meet him and talk about whatever was going on with him and found out how things are with me.”
"The findings offer insight into practices that can help facilitate care retention and treatment adherence."
Many participants shared that providers who did not spend adequate time or personalised attention were thought of as disrespectful. Many women expressed similar sentiments to this interviewee:
“You have to be careful because, with these types of illnesses, when you have them, you don’t need someone to harass or rush you. You need someone who can talk to you, who can raise your morale. Someone who is not abrupt.”
Holistic care, where clinical providers attended to multiple emotional, physical, and clinical needs, was appreciated. Participants appreciated when providers made time to check in at the beginning of appointments and explored whether they had emotional or other needs that may be impacting their health:
“She hugs me, she smiles, she laughs, she tells me stories. But, she genuinely asks how I’m really feeling, not just physically, mentally, if there’s something bothering me, she becomes the psychiatrist. Or if something’s not feeling right in my body, she’ll make me aware, ‘[Participant name,] it’s your stress or your blood pressure.’”
Treatment like this from providers made the women feel seen as a person.
Conclusion
For the women in the study, having a provider – both medical case managers and clinical providers – who knows and respects them as a person was key facilitator to staying in care and adherent to HIV treatment.
The findings of this study offer insight into professional practices that can help facilitate care retention and treatment adherence among women living with HIV, especially those with multiple marginalised identities such as being low income, immigrants, or racial and ethnic minorities.
Results from the study may be useful in creating training to further person-centred professional practices. The authors specifically call for interdisciplinary professional training and education that can be delivered to both clinical and non-clinical providers, to ensure all members of a care team have an understanding of all the various aspects of their clients’ care.
Fernandez S et al. Clients’ perspectives on patient‑centeredness: a qualitative study with low‑income minority women receiving HIV care in South Florida. Journal of Racial and Ethnic Health Disparities, 14 April 2022.