Assessing HIV-related stigma in the clinical setting: are providers in Florida interested?

Abstract

HIV-related stigma is a key contributor to poor HIV-related health outcomes. The purpose of this study is to explore implementing a stigma measure into routine HIV care focusing on the 10-item Medical Monitoring Project measure as a proposed measure. Healthcare providers engaged in HIV-related care in Florida were recruited. Participants completed an interview about their perceptions of measures to assess stigma during clinical care. The analysis followed a directed content approach. Fifteen participants completed the interviews (87% female, 47% non-Hispanic White, case manager 40%). Most providers thought that talking about stigma would be helpful (89%). Three major themes emerged from the analysis: acceptability, subscales of interest, and utility. In acceptability, participants mentioned that assessing stigma could encourage patient-centered care and serve as a conversation starter, but some mentioned not having enough time. Participants thought that the disclosure concerns and negative self-image subscales were most relevant. Some worried they would not have resources for patients or that some issues were beyond their influence. Participants were generally supportive of routinely addressing HIV-related stigma in clinical care, but were concerned that resources, especially to address concerns about disclosure and negative self-image, were not available.

Introduction

The Ending the HIV Epidemic Initiative (EHE) seeks to reduce the number of new HIV cases by 90% over the next decade, and a key pillar of this is increasing the number of people with HIV (PWH) who achieve viral suppression (HHS, 2022). However, many barriers must be addressed to achieve the EHE’s goals, and HIV-related stigma remains relatively recalcitrant. Stigma contributes to poorer retention in care and suboptimal antiretroviral adherence (Katz et al., 2013; Pearson et al., 2021; Reif et al., 2019; Rice et al., 2017; Rueda et al., 2016). Additionally, stigma is associated with mental health conditions that decrease the likelihood of achieving viral suppression (Gokhale et al., 2019; Pence et al., 2018; Rueda et al., 2016; Valverde et al., 2018; Waldron et al., 2021). Further, stigma may contribute to disparities in HIV outcomes since higher stigma scores are also associated with social determinant factors such as homelessness, age, and sexual orientation (Baugher et al., 2017; Rueda et al., 2016).

While interventions to support those experiencing stigma have been developed, including peer support groups, empowerment messaging, and counselling, there is no guidance on measuring HIV stigma in clinical care or for referring PWH to these services (Dunbar et al., 2020). Throughout their lives PWH have extensive contact with the healthcare system, creating many opportunities for assessment. HIV care providers may already be more aware of HIV stigma and its impacts, placing these providers in a position to support to PWH experiencing stigma (Crockett et al., 2022; Geter et al., 2018; Stringer et al., 2016). Further, increased communication with patients increases trust in providers, so discussions of HIV-related stigma may have additional benefits for the patient-provider relationship (Wachira et al., 2021).

It is unclear whether a stigma measure could be implemented into HIV care to identify PWH who may be struggling with stigma so that they can be referred to local resources and provided with education that may be helpful to them. One of the most commonly used measures of stigma is the 10-item short form of the Berger HIV Stigma Scale that is used in the Centers for Disease Control and Prevention’s Medical Monitoring Project (MMP) (Berger et al., 2001; CDC, n.d.; Wright et al., 2007). While this measure is frequently used in surveillance, there has been sparse research examining the use of this measure in a clinical setting. The aims of this study are to assess the acceptability and utility of implementing a stigma measure into routine HIV care and identify subscales of interest from the MMP measure through qualitative interviews.

Materials and Methods

Recruitment

Individuals were eligible if they were directly involved in HIV clinical care (e.g., physicians, nurses) or served in a supportive role (e.g., counselors) in Florida, and were comfortable speaking English. After reviewing notes from the initial interviews, we expanded the eligibility to include social workers. Between February and June 2022, Flyers were distributed to professional networks within the Southern HIV/Alcohol Research Consortium (SHARC) and via listservs that focus on HIV-related care within Florida. Members of these groups include providers in HIV specialty care, primary care, and community-based organizations that serve PWH. Our goal was to recruit 15-20 participants from this relatively homogenous population. This goal was based on previous work that indicates that saturation is often reached within this range (M. Hennink & Kaiser, 2022; M. M. Hennink et al., 2017; Moser & Korstjens, 2018).

Data collection

Participants filled out a brief questionnaire on their demographics, attitudes and beliefs towards HIV stigma, and comfort in addressing stigma before the interview. The interview guide was developed based on the study’s goals and reviewing other HIV stigma intervention studies. The guide was adjusted based on input from experts on HIV-related stigma through the SHARC Stigma Working Group and experts in qualitative research through the Qualitative Research Colloquium at the University of Florida and was continuously refined (see supplementary materials). The guide included questions about stigma’s impacts, measuring stigma generally and with the MMP measure, and a potential training scenario to help clinicians respond to the MMP measure. All interviews were conducted and recorded in Zoom to allow statewide participation and lasted 25-40 minutes. Most interviews were one-on-one, but two participants opted to be interviewed together. The initial interviews were conducted by KV, a senior researcher, and later interviews were conducted by the RFH with KV supervising.

Data analysis

The interview recordings were transcribed by a HIPAA-compliant company. These transcriptions were reviewed by the team to ensure accuracy and then uploaded into Atlas.ti (v23 Berlin, Germany) for analysis. Coding did not begin until all interviews were completed. The data used for the present analyses focused on the sections related to measuring stigma generally and with the MMP measure specifically. Given the exploratory and descriptive nature of this study, the analysis of the interviews’ manifest content followed a directed content approach (Hsieh & Shannon, 2005; Vaismoradi et al., 2013). First, two members of the team (RFH and AW) reviewed all transcripts to immerse themselves in the data. Then, guided by the study questions, they independently coded each transcript using open coding. The research team met weekly to review the coded transcripts, seek coding agreement when initial coding differed, and develop coding categories and sub-categories. A senior member of the team with extensive qualitative experience was available to help when a consensus could not be reached and provide input on the proposed code groups. Descriptive statistics were generated to describe the demographics and beliefs of the participants within the study.

Ethics statement

This study was approved by the local Institutional Review Board (IRB# 202001321) and all participants gave written informed consent.

Results

Fifteen participants completed the interviews (see Table 1). Most participants (87%) identified as female, 47% identified as non-Hispanic White, and most common clinical role was social worker or case manager (40%). Most providers thought that talking about stigma would be helpful (89%) and most (89%) said they would be comfortable talking about stigma. All agreed that talking about HIV-related stigma was a part of their role.

Table 1.

Demographics of participants and beliefs about HIV-related stigma

Demographics, Attitudes, and Beliefs	N (%)
Race/Ethnicity
White	7 (46.7%)
Black	4 (26.7%)
Hispanic	1 (6.7%)
Other or Multi Racial	3 (20.0%)
Gender
Male	2 (13.3%)
Female	13 (86.7%)
Years in practice (median, IQR) [2 missing]	12 (6, 20)
HIV Primary Focus
No	4 (26.7%)
Yes	11 (73.3%)
“I think talking about stigma with my patients is helpful”
Agree	14 (93.3%)
Do not agree	1 (6.7%)
“I would not know how to help a patient experiencing stigma”
Agree	1 (6.7%)
Do not agree	14 (93.3%)
“I think talking about stigma is important”
Agree	14 (93.3%)
Do not agree	1 (6.7%)
“I do not think it’s the provider’s role to discuss stigma”
Agree	0 (0%)
Do not agree	15 (100%)
“I feel comfortable talking about HIV-related stigma”
Agree	14 (93.3%)
Do not agree	1 (6.7%)
“I think focusing on their HIV labs, medications, and other health conditions is more important than talking about stigma” [1 missing]
Agree	3 (20.0%)
Do not agree	11 (73.3%)
“I would not have time to talk about stigma during a routine visit”
Agree	3 (20.0%)
Do not agree	12 (80.0%)
“I do not think stigma is a major issue among my patients”
Agree	2 (13.3%)
Do not agree	13 (86.7%)

During the interviews, all participants reported that measuring stigma would be useful in their respective care settings. Participants shared that this 10-item MMP measure created an opportunity for a brief entry into conversations about the types of issues patients are dealing with outside the clinic. Moreover, they believed that it may provide insight into barriers to care and viral suppression. Concerns regarding the logistics of implementation of the tool and the responsibility of providers to respond to issues for which they lack resources were also shared. The qualitative themes are further explored below and are outlined in Table 2.

Table 2.

Initial SP Interview Themes and Subthemes

Theme	Sub-theme
Acceptability, Feasibility, and Utility	A formal assessment of stigma would be helpful
	The tool provides a structured way to establish lines of communication about complex topics.
	Provides an opportunity for patient-centered care.
	Implementation presents challenges related to time and ability to follow-up
Sub-scales of interest	Providers believed disclosure was of most concern to their patients and tied into other forms of stigma.
	Negative self-image was most within the providers control and influence
	Public attitudes and personalized stigma were viewed as more important by some
Responsibility and Resources for Follow-up	Participants were concerned about degrading the therapeutic relationship by bringing up issues they did not have the resources to manage.
	Concern that the use of the scale may recontextualize past experiences that the patient did not originally view as stigmatizing.

Acceptability and utility

All 15 participants expressed that measuring stigma generally, and using the MMP measure specifically, would be appropriate in their care setting. Three sub-themes were identified, the utility of the MMP measure in establishing lines of communication, helping to promote patient-centered care, and concerns about implementation.

Establishing lines of communication

Providers mentioned that using the MMP measure could be a way to engage patients on a complicated but common experience in a trusting manner. Some shared that the MMP measure provided a framework for the patient to process their experiences and verbalize them. Finding the language to express stigma experiences can be challenging. Participant 10 (counselor) said, “Once you give them a word, this is what’s happening. It’s called stigma. Then they can start talking about it and start to maybe deal with it better.” Similarly, Participant 12 (social worker) felt that the structure of the MMP measure created a shared language for the provider and patient to use in discussing their experiences.

It also created a natural opportunity for conversations around complicated topics with patients who may not be seen very often. Participant 2 (physician) said that most of their patients, “…come in once a year and we have to catch up on a year’s worth of things in 30 minutes. This gives us the opportunity to bring attention to it.” Participant 15 (nurse practitioner) expressed that the straightforward, simple nature of the questions made it easy for both the provider and the patients to address complicated topics.

Patient-centered care

Participants discussed the ways in which having information about their patients’ stigma experiences would promote patient-centered care and help direct their care decisions. For example, participant 14 (social worker) shared that knowing a patient had high stigma around disclosure might allow them to reconsider transportation services: “I’ve seen where clients don’t come to their appointments because…they don’t wanna be in the same transportation with another person.” An opportunity to elicit this information may lead to simple interventions that could improve engagement. Participant 6 (social worker) shared that it created opportunities for pro-active care. “I want them to self-actualize so, if you feel the need to tell the world you’re HIV positive, we could work through what your need is and how relevant it is to your well-being.”

Participant 9 (physician) expressed that the MMP measure score would help them understand when a referral to other support services was needed. “I don’t have a psychology or psychiatry background so if I felt like they might benefit from someone with a stronger background in [that], I might ask them…if they would be okay if I put in a referral.” Participant 12 (social worker) discussed how knowing about a patient’s experiences of stigma could help them create an environment that met their needs by ensuring that others involved in their care were “on the same page.”

Implementation concerns

While many of the interviewees had longer appointment windows, they acknowledged that this is not the case for everyone. “For me, I see patients every 30 minutes. I get enough time…in a busy clinic, you get eight, maybe six minutes. They’re not gonna be implementing the tool,” said Participant 1 (physician). Similarly, Participant 12 (social worker) said that, given time constraints, having the MMP measure score rather than administering the measure would be easier. Participant 9 (physician) was concerned that providers in medical settings are not prepared to address stigma. Additionally, participant 7 (social worker) worried that patients would not receive this kind of evaluation positively from their provider saying, “We have seen some reluctant to that [a stigma evaluation]. When patients come in, they want to be treated for the illness but don’t really want to be evaluated for things such as HIV-related stigma.” Similarly, Participant 13 (APRN) said that geographic differences that influence community attitudes may play a part in how well this is received.

Sub-scales of interest

Though some participants saw value in each of the four subscales, disclosure (n=9) and negative self-image (n=8) were seen as the most relevant by the majority.

Disclosure

Disclosure was the theme that arose most frequently in interviews. Participants felt not only that this subscale was most relevant to their patients but also that it was related to other domains. Participant 6 (social worker) said, “the negative self-image is attached to the disclosure because, if I don’t disclose, I can pretend I don’t have it. I can be in denial.” Additionally, participant 1 (physician) shared their belief that disclosure concerns are tied to public attitudes, sharing that patients worry about how to navigate conversations about their HIV with people because of these attitudes. Several participants discussed the lengths patients go to avoid disclosure, including missing appointments and repackaging medications. In this context, understanding disclosure concerns and the related sources of stigma may play a significant role in viral suppression.

Negative self-image

Negative self-image was selected as one of the most clinically relevant sub-scales. Many participants shared how they felt it related to other aspects of stigma such as disclosure and public attitudes. One reason participants expressed that this subscale was more relevant related to their ability to manage it. Participant 9 (physician) said, “I think because all of the other ones seem to be more outside factors, things that perhaps a physician or clinician or provider can’t control and the patient can’t control. The internalized stigma, I think that in developing a close relationship with their providers, feeling supported, having resources at hand, being able to talk to peers, this is something that can be, I feel like out of all of them, much more easily addressed as opposed to changing societal and cultural and other people’s views.”

Responsibility and resources for follow-up

A theme that emerged during the interviews was related to questions on how to follow-up with PWH who had high stigma and concerns about what these discussions could bring up. We identified two sub-themes: ability to follow-up and recontextualizing past experiences.

Ability to follow-up

Participants worried that introducing a tool that brings up problems providers are not well equipped to manage may degrade their therapeutic relationship with the patient. Regarding how to respond to a high score, participant 3 (physician) said, “It can’t just be like me saying, ‘oh, you’re okay.’…I just don’t know that I have a lot of resources available.” Providers also brought up that contexts that contribute to stigma are important but beyond the scope of a single healthcare provider. For example, participants shared intersectional concerns, such as financial and housing stability (mentioned by participants 7 and 14), that influence the way stigma is experienced but providers may be unaware of supportive resources for these connected issues.

Recontextualizing past experiences as stigmatizing

One novel concern was that providers may exacerbate or create experiences of stigma that PWH did not feel previously. Participant 4 (physician) worried that the use of the scale may recontextualize past experiences that were once perceived as benign into experiences of discrimination. “Now they believe they’re a victim when they weren’t a victim because they’re looking for it,” they said.

Discussion

The goal of the study was to understand the acceptability and utility of implementing a measure of HIV-related stigma into care for PWH, both clinical and case management. Generally, there were positive responses to measuring stigma and the MMP measure specifically. Participants indicated that formally discussing stigma could lead to more patient-centered care and improve communication. PWH would prefer their providers to take time and interest in concerns outside of their HIV clinical care, which could include talking about stigma (Fernandez et al., 2022; Jaiswal et al., 2018). Although HIV care providers may be less likely to stigmatize their patients, stigma does still occur in these settings (Crockett et al., 2022; Stringer et al., 2016). Training providers to address the results of a stigma measure could further improve patient-provider relationships by increasing their sensitivity toward these issues.

Although most participants thought that talking about stigma would be helpful, some were concerned that the MMP measure would not give enough information to intervene in a productive way or that providers were not equipped to intervene at all. While higher levels of stigma are associated with poorer HIV-related health outcomes, cutoff scores have not been established to identify those at greater risk for these deleterious outcomes (Katz et al., 2013; Pearson et al., 2021; Reif et al., 2019; Rice et al., 2017; Rueda et al., 2016). For providers with limited time, having established cutoffs for when to intervene may increase the utility of stigma measures.

Some providers were also concerned about having resources available to help patients or clients who reported greater stigma. Additionally, providers have limited control over larger societal pressures that allow stigma to thrive. While support groups and resilience training may show promise in combatting stigma, these groups and services may not be available in many areas (Dunbar et al., 2020; Scott, 2022). Further, PWH with the greatest stigma may be disinclined to participate if that increased the risk of disclosure. Expanding the purview of HIV-related support groups could help allay these fears and address intersectional stigma (Rice et al., 2018; Rodriguez-Hart et al., 2022; Scott, 2022). PWH who may benefit from mental health counseling encounter many barriers, and a referrals do not guarantee these services will be received (Ali et al., 2022; Brenes et al., 2015; Bridges et al., 2012; Haynes et al., 2017; Moore et al., 2017). Some of these barriers could be addressed by case managers, who were also supportive of measuring stigma, administering stigma measures as they may have better knowledge of supportive services.

Most thought that disclosure concerns and negative self-image were the most relevant subscales, as these were more common and within the provider’s ability to address. Disclosure concerns and negative self-image are intertwined aspects of HIV-related stigma that may reinforce each other (Yigit et al., 2021). Both are associated with poorer HIV-related health outcomes and occur at the individual level, making interventions easier to deliver (Mitzel et al., 2019; Turan et al., 2019; Yigit et al., 2020, 2021).

This study has some limitations. First, participants were willing to engage with a study about HIV stigma and may be more open to talking about stigma than providers who did not participate. Additionally, the physicians largely came from specialty clinics where appointments are longer. Those in primary care may have different logistic concerns and interest in stigma. Lastly, PWH were not included in this study, so further study is needed to assess whether PWH would like to have stigma assessed in this way during their HIV care.

Stigma remains a key barrier to care engagement and ultimately achieving viral suppression and immune reconstitution. Adding a formal measure of HIV-related stigma as part of routine clinical care or case management was well-received with the noted benefit of improving communication with patients. Concerns were raised over the timing and resources for following up on high-stigma results. Specific questions regarding the next steps after finding that a patient has high stigma could be investigated further.

Data Availability

The data that support the findings of this study are available on request from the corresponding author, RFH. The data are not publicly available due to participants not providing informed consent for the interview transcripts to be shared publicly.