Clinical education should teach a broader understanding of respectful clinical care for racialised women living with HIV from low-income backgrounds, an American study finds. While respecting patient autonomy is important, a singular focus on it may result in providers neglecting other ways that respect can be shown and may have a particular impact on how racialised women receive care within HIV clinics, say Dr Sofia Fernandez of Florida International University and colleagues. The authors argue that understanding the range of ways women with HIV feel respected by clinicians may improve clinical interactions, retention and overall health outcomes.
A core part of medical training includes treating patients respectfully. However, the authors argue that this typically concentrates on respect for patient autonomy (such as informed consent, respecting patients’ choices and honesty), while other elements that make up respectful care may be minimised. Notably, healthcare professionals may not fully understand how women who face multiple marginalisations perceive respect within clinical settings.
The study
The purpose of the study was to explore the perspectives of an ethnically diverse group of women living with HIV and on a low income. All the study participants had received HIV care from the Ryan White Program in Miami-Dade County, Florida for at least six months. All participants identified as Hispanic/Latina, Black/African American and/or Haitian (the three prominent ethnic groups from the area). The interviews were held in English, Spanish or Creole, depending on the participants' preference.
Generally, the study sought to understand the patient-centred practices that facilitate retention in care and adherence to medication in this group. Fifty-seven of the total 74 participants responded to the question: "What are examples of times you felt you were treated with respect by your doctor and nurse?"
The women were African American (n=28), Latina (n=22), and Haitian (n=7). There was a diverse age range: 18 to 35 years old (7%), 36 to 49 years old (28%), 50 to 59 years old (39%) and those over 60 years (26%). The majority (38%) had been living in the Miami area for over 20 years.
Overall, the participants described respect in many ways that could be captured under two broad areas:
- Healthcare professionals’ orientation towards the patient (being treated as a person, being treated as an equal, being treated without blame or prejudice, and being treated with concern/emotional support)
- Medical professionalism (clinician availability and consideration of privacy).
Being treated as a person
The participants shared that being treated as a person was fundamental to receiving respect from their medical team. They felt healthcare professionals demonstrated this by inquiring about non-medical aspects of their lives and greeting them in a personable manner:
“When I first come in through the door, she says ‘Good Morning (name)’, with a smile. That’s respect right there, you know.” – 55 years old, Black, Non-Hispanic, from Turks and Caicos
“I think it is important that the doctor always knows your name and that he looks at you and he greets you with your name. Because they see many patients and the fact that your doctor remembers your name, that makes me feel that they are taking me into account and that I am respected” – 41 years old, White, Hispanic, from Nicaragua
In contrast, participants felt disrespected when their clinician did not look at them or "pay little attention to the things you say, as if you were unimportant".
Being treated as an equal
Feeling as though they were ‘in this together’ with their medical team was a sign of being treated equally and respectfully. Participants were keen to be treated as collaborators and have a sense of shared decision-making.
“She makes it easier, easy for me to talk about my health condition and not be afraid of it. She talks to me with respect. She makes me feel loved, like she makes me feel a connection, like we got a bond, and this is something like, we in this together, ‘cause I am here to help you” - 38 years old, Black, Non-Hispanic, from the US
Participants also appreciated providers who encouraged them to ask questions and who took the time to explain procedures and results. One participant described how their doctor would:
“Go through whatever —my blood work and stuff. He explains it to me, “This is OK. That’s OK.” You know, as far as the blood work, every time I come, he [explains that] everything is still low: cholesterol, my sugar. Everything is fine” – 51 years old, Black, Non-Hispanic, from the US
In contrast, one of the participants described feeling disrespected:
“I guess the way she was talking to me, like when she first sees me it was like, ‘You going to do this, you’re going to do that.’ And I was like, ‘I understand everything you saying, but me and you both grown people. You talk to me in a respectful way. I talk to you in a respectful way.’ So we squashed that” – 58 years old, Black, Non-Hispanic, from the US
Being treated without blame or prejudice
Healthcare professionals also showed respect by avoiding placing shame or guilt and treating those in their care without stigma.
Other participants shared when they felt disrespected specifically due to a lack of warmth, comfort and feelings of being judged or “talked down at”:
“She talked down at me, number one. Number two, you make me feel like I’m dirty. You know, like I did something wrong, you know, instead of rubbing my hand, and saying, ‘It’s going to be OK. We alright. You know, you alright.’ You’re looking down and you really looking down your nose sideways at a person, you knows... She is there for the money. Put it like that. Not for the comfort, like the bedside manner the doctor’s supposed to have" – 64 years old, Black, Non-Hispanic, from Honduras
Again, human connection and strong interpersonal actions were clear signs of treating participants with care, as demonstrated by this participant:
“Well for me, it’s like to be told something that I don’t like, like a question about the disease or a rejection. I don’t know for other people but she grabs me gives me a hug, gives me a kiss, whether I have the thing or not” – 63 years old, White, Hispanic, from Venezuela.
Being treated with concern and emotional support
Healthcare professionals acknowledging, consoling, and comforting patients in times of distress were all viewed as signs of treating them with concern and providing emotional support, which was key to showing respect.
“I remember I had got really sick. I had an abscess right under my left booty cheek, and I was like, ‘I don’t care who you are, I don’t want nobody looking at me’. She was like, ‘[Name], I got to look.’ I was like, ‘No doc, I’m just gonna tell you about it.’ But she made me start laughing and got me to such a comfortable space where like I’m okay with her looking in certain parts because she made me feel like a baby. ‘I’m just trying to help you. Don't be embarrassed.’ Because you know, I’m like 240 [pounds]... so year, we’re there now” – 51 years old, Black, Non-Hispanic, from US
Medical professionalism
Organisational procedures and the way care was delivered were also important. Healthcare professionals demonstrated respect by being available and accessible:
“I had a question and it’s not like I had to make an appointment to ask him the question. I stood there with him, or he stood with me and we discussed it for a moment. And he asked me when my next appointment was. It was a week later and he’s like okay well do what you got to do... He doesn’t treat me like a number or a paycheck, he treats me like a person. Like we’re humans, like we’re people, we’re not a statistic” – 44 years old, White, Hispanic, from the US
Steps to maintain privacy made the women feel respected. On the other hand, some spoke about feeling uncomfortable in waiting rooms which left them exposed or when additional staff attended clinical appointments:
“I do feel uncomfortable when there are people there, like the students. I wouldn’t mind if it was the nurse... But is disrespectful that they don’t ask you for permission at all. That it is” - 47 years old, White, Hispanic, from Honduras
Conclusion
Several limitations of this study may impact the wider relevance of the findings for women on low incomes. All participants were recruited from one location; they had to be registered at the clinic for at least six months; not all (in the general study) were asked to share their experiences of respect within a healthcare setting (although the majority were), and it is unclear how researchers chose who was asked this question.
Regardless, the study builds on existing research about respect to focus on how it is defined by some of the most marginalised groups accessing HIV care. The authors say that their “findings offer a more robust understanding of how respect for persons can be actualized in practice”. If this is incorporated into medical education, “these areas of training may increase respectful medical care experiences and potentially serve to influence persistent and known social and structural determinants of health through provider interactions and health care delivery.”
Fernandez S et al. How patients experience respect in healthcare: findings from a qualitative study among multicultural women living with HIV. BMC Medical Ethics, 25 (39), 2024 (open access).
DOI: 10.1186/s12910-024-01015-1