How Older Black Women Perceive the Effects of Stigma and Social Support on Engagement in HIV Care

Abstract

As black women over age 50 represent a growing share of women living with HIV, understanding what helps them persist and engage in ongoing HIV care will become increasingly important. Delineating the specific roles of social support and stigma on HIV care experiences among this population remains unclear. We qualitatively examined how experiences with stigma and social support either facilitated or inhibited engagement in HIV care, from the perspective of older black women. Semi-structured interviews were conducted with 20 older black women currently receiving HIV care at primary care clinics in the Metropolitan Boston area. Women expressed that experiences with stigma and seeking support played an important role in evaluating the risks and benefits of engaging in care. Social support facilitated their ability to engage in care, while stigma interfered with their ability to engage in care throughout the course of their illness. Providers in particular, can facilitate engagement by understanding the changes in these women's lives as they struggle with stigma and disclosure while engaging in HIV care. The patient's experiences with social support and stigma and their perceptions about engagement are important considerations for medical teams to tailor efforts to engage older black women in regular HIV care.

Introduction

Engaging and retaining persons living with HIV (PLWH) in HIV medical care and thus having access to lifesaving treatment is vital to optimize health outcomes.^1
–3 The effectiveness of antiretroviral therapy (ART) for PLWH has led to a shift from the need for acute care to chronic care management requiring lifelong attendance to medical care.⁴ Individuals who attend regularly scheduled HIV visits initiate ART earlier,^5,6 have improved adherence to ART,^3,7 have decreased HIV-related healthcare costs,⁸ and are more likely to achieve optimal health outcomes^5,6 than those who are not engaged in consistent care. However, the reality is that once diagnosed, a substantial proportion of PLWH (49%) are not retained in ongoing HIV medical care at any point in time,⁹ and therefore face significant barriers to achieving optimal health outcomes.^3,5,10

Extant research on HIV engagement in care and vulnerable groups has been conducted primarily among younger populations¹¹—far less is known about older persons. The Centers of Disease Control and Prevention estimates that 50% of PLWH in the US will be age 50 or older by 2015. Moreover, black women have been especially affected by HIV and represent the majority of new HIV infections among all women.¹² In light of the increasing number of older PLWH^13,14 and the HIV disease burden among black women,^12,15 it is essential to understand why they may or may not persist in HIV care.

Many factors contribute to why PLWH are not engaged and retained in HIV care. Often the most vulnerable groups of PLWH, such as blacks and women, face significant barriers to obtaining care¹⁶ and are less likely to see a healthcare provider on a regular basis.^3,17,18 Barriers such as stigma, lack of access to support services, poverty, intimate partner violence, perceived racism, gender inequalities, and caregiver responsibilities, can make it more difficult to obtain needed HIV care and services.^{3,5,19

–24} HIV-related stigma has been found to be a barrier to accessing HIV prevention and care services^11,25 and can be a barrier to appointment attendance.^26,27 HIV-related stigma is manifested as discrimination, ostracism, prejudice, and negative attitudes directed toward PLWH.^28
–30 In addition, as a consequence of the negative effects of HIV-related stigma, such as perceived discrimination and feelings of isolation,^29,31,32 many individuals may lack the social support that promotes engagement and may disengage from medical care.^25,33 Blacks, in particular, may face unique challenges to remaining in care because of the confluence of stigma and lack of social support.³ Moreover, few studies have examined how stigma and social support are related to engagement and retention in HIV care from the perspective of older black women.³⁴

Given the paucity of information related to the particular challenges to receiving continuous HIV care among older black women, we designed the present qualitative study to gain an in-depth understanding of how older black women perceived their experiences with stigma and social support and how it either facilitated or inhibited engagement in HIV care.

Methods

Participants

We conducted a qualitative study that involved in-depth semi-structured interviews with a sample of older HIV-infected black women (age 50+) who were currently receiving HIV care at primary care clinics in the Metropolitan Boston area. Eligibility criteria included being female, aged 50 or older, self-identified as black or African American, able to understand and speak English, currently in HIV care in Metropolitan Boston, and ability to consent to a qualitative interview. A purposeful sampling technique³⁵ was used to select participants. Purposeful sampling is a qualitative method aimed at deliberately selecting information-rich cases who have experienced a particular phenomenon or exhibit unique characteristics (e.g., black, older, women).³⁵ To ensure a range of participants for inclusion, participants were recruited through several methods including: primary care provider referral within a HIV primary care clinic at a large urban safety net hospital, recruitment flyers posted in that clinic, and snowball sampling. Interested individuals recruited through snowball sampling and flyers were instructed to contact the lead author for an assessment of their eligibility to participate in the study.

Of the final 20 participants, 15 participants were referred from primary care providers at the HIV primary care clinic and five were referred through the snowball sampling mechanism. These five women indicated being in HIV care at another location. No women were recruited through the posted flyers.

Data collection

Interviews were conducted using a semi-structured interview guide; data were collected between February and September 2011. The interview began with general questions related to each participant's background and HIV diagnosis. We asked open-ended questions that allowed participants to self-identify their background. Specifically, we asked participants to self-identify their: age, race/ethnicity, highest level of education, and current employment status. We then followed with questions about how social support and experiences of stigma affected their ability to engage in HIV care. We had a total of 9 main questions, along with follow-up questions probing topics that emerged during the interviews. Table 1 provides examples of the interview questions.

Table 1.

Examples of Questions Used During Interviews

1. Tell me about the time you found out you were diagnosed with HIV/AIDS.

2. Have you ever felt discrimination because you are HIV-positive? Can you described what happened?

3. Have you experienced stigma because you are HIV-positive? Can you describe your experience?

4. Participants were asked to list people within their support network and followed-up by asking “Who did you specifically tell you had HIV?”

5. Participants described how these individuals provided social support in response to the question “How have any the individuals that we talked about earlier helped you with your HIV care?”

6. When you initially found out about your HIV/AIDS status how often did you come to the doctor?

7. Can you tell me about some things that help you to stay in care?

8. Can you tell me about some things that might interfere with you staying in care?

Interviews were conducted in a private room and audio-recorded. The first author (MM), who is an experienced HIV researcher and identifies as a black female, interviewed the women for this study. Participants were given a $25 gift card to a local store for participation. The interviews lasted as long as participants were willing to talk; interview times ranged from 26 min to 2 h 45 min, with a median interview time of 51 min.

Data analysis

Interviews were transcribed verbatim and assigned a pseudonym to preserve participant anonymity. Data were analyzed using qualitative analytic techniques informed by grounded theory.^35,36 This included systematic analysis of each interview transcript with constant comparison and evaluation of commonalities among themes across interviews.³⁶ The first three transcripts were examined jointly by three members of the research team to develop a common set of content codes, formulate definitions to standardize coding, and develop the codebook. Then, using the codebook, the subsequent 17 transcripts were coded independently by the lead author. Passages in the transcripts that represented distinct domains related to concepts of support, stigma, and engagement in care were identified and a set of analytic codes that reflected these domains developed. Passages that represented the domain of support were noted when participants mentioned receiving assistance or advice from other individuals or groups; described being cared for; and perceived compassion, understanding, and acceptance. The code for stigma was noted anytime an individual stated or was fearful of being treated differently because of their illness. The code for engagement in care was established to include experiences related to HIV care such as attending appointments, missing appointments, or interactions with medical providers. Codes related to the broader concepts of support, stigma, and engagement in care were then linked conceptually into larger themes to answer the key study questions. Data were coded and analyzed in HyperResearch 3.0.2 Computer Software (ResearchWare, Inc., 2011).

This study was approved by the Boston University Medical Campus Institutional Review Board (IRB). To protect participant confidentiality, the IRB granted a waiver of documentation of informed consent.

Results

Characteristics of the study sample

Participant characteristics are described in Table 2. The participants had a mean age of 56.6 (range 50–63) and on average were aware of their HIV diagnosis for 16.2 years. More than half reported having at least a high school education, being born in the US, and being disabled or currently unemployed.

Table 2.

Participant Characteristics (n=20)

Characteristics	n (%)
Mean age in years (range)	56.6, (50–63)
Mean years living with HIV (range)	16.2 (2–26)
Education
Less than high school	8 (40)
High school	4 (20)
Some college or greater	8 (40)
Country of origin
United States or unknown	16 (80)
Other	4 (20)
Work status
At least part-time employed	2 (10)
Retired	2 (10)
Disabled/unemployed/unable to work	15 (75)
Unknown	1 (5)

Overview of findings

In general, the women highlighted how their experiences related to stigma and seeking support played an important role in evaluating the risks and benefits of engaging in care. Social support facilitated their ability to engage in care, while stigma interfered with their ability to engage in care throughout the course of their illness. Many women described feeling a fear of being stigmatized or of being “outed” as HIV-positive and were often reluctant to reveal their HIV status. As a result, women experienced difficulty accessing adequate social support for engaging in care. Two primary themes emerged as especially relevant to how older black women engaged in care: the role of stigma and the role of social connections.

Role of stigma when engaging in care

The ways in which stigma affected the women were evident when they talked about their HIV care experiences. Across all interviews, women characterized stigma as a fear, anxiety or perception of discrimination due to being HIV-positive. Often, these feelings and experiences with stigma discouraged or even prevented women from seeking care. Women were concerned of being judged or being exposed as HIV-positive if they engaged in care. The feeling was compounded when women perceived that providers made assumptions about how they contracted HIV or were judgmental of their lifestyles. Below we discuss the two most prominent sub-themes related to stigma in greater details: being in care can “out me” and stigma by medical providers.

Being in care can “out me.”

Women perceived stigma based on the clinic name or clinic location. Some expressed that PLWH were easily identifiable if they sought treatment at HIV-specific clinics. They specifically described being reluctant to receive medical care at clinics with the terms “HIV,” “AIDS,” or “infectious disease clinic” in their names. In addition to clinic names, other women noted that the location of a clinic could also make them easily identifiable as HIV-positive. For instance, one woman perceived that HIV-positive patients were purposely separated and segregated from other patients. She believed that being in a separate location from other primary care patients would “out” her and thus, made her less willing to engage in care. She also felt that identifying the clinic as an “infectious disease clinic” was isolating and stigmatizing because the name implied that HIV-positive patients are less than human:

“And I know it's not just the people with HIV and AIDS, it's other infectious diseases, but I don't like that. I don't like how [hospital] isolates the infectious disease clinic away from every-f******-body else, like we're not human. I find that very, very offensive…I don't like how they separate. That really hurts my feelings. I already struggle on a daily basis, having to hide the fact that I'm HIV-positive, just because even though we're in the 21st century.”

She later commented that she felt more comfortable receiving care at a neutrally named clinic that was labeled “adult medicine” rather than “infectious disease.”

Stigma by medical providers

Many women experienced stigma during medical encounters with providers, which impacted their ability to trust providers and therefore engage in care. Women were reluctant to seek care when they perceived their providers stigmatized patients. One woman reported that doctors passed judgment:

“…[they assumed] if they saw a scar on you, you were a junkie.”

These experiences interfered with her ability to trust medical providers and engage in continuous care. She perceived that doctors made patients feel that they should not attend appointments. However, more importantly, she stated that her view about providers and HIV care has changed across time.

“You've got a lot more compassionate doctors that know more. But back then, they were making people feel like they shouldn't go and get care.”

This change of opinion demonstrates a shift in her perspective about providers. She believed that doctors became more caring because they no longer stigmatized their patients and were less judgmental about patients' lifestyles. Similarly, several women indicated that providers they encountered later in the course of their illness were more considerate. The perceived change in provider behavior was instrumental in changing the women's' views about HIV care and thus made it easier for them to engage in care.

Role of social connections

Women were able to engage in care when they felt connected to and supported by their social environment. In order to gain support for engaging in care, women had to perceive that disclosing their HIV status was beneficial and worth any risks to their confidentiality. However, the act of disclosing to gain support was not an easy decision. Initially, most women felt apprehensive and believed they would be judged negatively if they disclosed their HIV status. As a result, they were careful about establishing and maintaining social connections. Three themes referred to the role of social connections related to engaging in care: disclosing to gain support, how women obtained support, and the role of the social world

Disclosing to gain support

Disclosure of one's HIV status was a critical step for seeking support for engaging in care. Many participants expressed that they were reluctant to disclose or seek support because people would relate HIV to carelessness or socially unacceptable behaviors such as promiscuity or drug use. In addition, disclosure was often entwined with stigma. Some women who did not disclose felt a need to hide their disease due to this perception of potential stigma. These efforts to hide their HIV impacted their ability to stay in care because many feared being alienated or rejected if people knew they were HIV-positive. Moreover, the fear of the stigma associated with HIV led the women to believe that they would not have the adequate support they might need to stay in care. Some participants recounted experiences of not being supported after they disclosed to their family and friends. One woman noted being rejected by her family when she disclosed: “My family, most of them, curse me, look at me a way. So I was like feeling down about it.”

In contrast, many women noted that when family members and friends were “supportive” and “encouraging,” they were able to engage in care. Women realized they could access support and assistance if they were able to disclose their HIV status. Several narratives depicted positive experiences when disclosing, such as emotional encouragement and strengthened familial relationships. Women who experienced strengthened relationships were able to believe that they would not have to endure their journey with HIV alone. For example, one woman talked about her experience disclosing to her family. Her family made her feel comfortable by promising their support and reinforcing the belief that she could live with HIV:

“When I found out I had HIV, I brought all my family together at the hospital, and I told them all, I have something to tell you. And I said, I have HIV. They said, Okay, you're not going to die. I said, well I don't know too much about this. They said, you'll be alright. We're here for you, so you'll be alright. It wasn't hard. It wasn't hard to tell them at all.”

How women obtained support

Supportive relationships helped mitigate the effects of stigma related to disclosure and also helped women accept responsibility for their HIV care. Women described different dimensions of support, including the sources and the types of support that were conducive for engaging in care; these groups of support were classified into two groups—formal and informal support. We categorized formal support as the support they reported receiving from healthcare providers, support groups, case managers, social workers, and HIV/AIDS service organizations (ASO). While the support received from an extended network of family, friends or neighbors was categorized as informal support.

One woman described how her family supported her to attend medical appointments despite her own reluctance to attend HIV care:

“I just didn't' want to go [to appointments]. But, I mean, I just didn't want to go, but my kids and my sisters would bring me. “Oh, you don't want to go? Come on, we'll take you.” Like I said, I have support. They wanted me to do what I was supposed to do, and plus I finally woke up and said, “Yeah, I have to do something. You don't even have to take me. I'll go. I'll go, I promise.”

Her family played a key role in facilitating a change in her attitude towards attending HIV care. Furthermore, the support gained from her family helped her to take personal ownership to remain and engage in care.

Friends also provided encouragement and support to engage in care. Some of the women could relate much better to friends than family because some of their friends were also HIV-positive or substance users. Friends who were also HIV-positive often provided guidance and offered advice on where to seek HIV care. One woman described how a friend, who also had HIV, encouraged her to engage in HIV care and receive substance abuse treatment.

“A friend of mine called me and said, “You know, I went into this program that not only can you get help around your alcohol and drug use, you can help around HIV too, because they focus on both.” So that's what brought me here, and I've been here ever since.”

Relationships with formal support sources were also instrumental for women to engage in care. Women reported that providers who listened to their needs and concerns made them feel like they were not being discounted because of their HIV status. Subsequently they were more eager to engage in care. One woman described how her case manager not only linked her to resources, but also helped her realize that she could live with HIV. The case manager highlighted that he believed that this woman would be able to live with HIV based on her resilience in overcoming a previous challenging situation. He encouraged her to focus on her children instead of the negative aspects of HIV:

“I said, so where do we go from here? He [case manager] said, “Okay, your first thing to remember, you have two children in the lobby waiting for you. So think about them, and worry about this part of your life later because you're not going to die. You can survive. If you survived what you're telling me you went through already, I don't see you going anywhere anytime soon. I see we'll see each other again.”

Role of the social world

An important motivator for sustained care was being involved actively in the social world. Specifically, strong kinship ties were often described as key social motivators to engage in HIV care among the women we interviewed. While kinship ties often facilitated supportive relationships and encouragement for the women to initially engage in care, these ties were also an influential reason for women to continue in HIV care. Relationships with children and grandchildren were the most noted motivators to remain and engage in care. Each of the following statements expresses how the role of being a grandmother and mother was influential:

“Well, what helps me [stay in care] is watching my grandkids grow up…My family is what has got me staying in the care and doing what I've got to do.”

“Mind you, my kids played a role in my life to keep me in healthcare. Because if it wasn't for my four children, I would not even go [to healthcare visits]”

Additionally, anticipating life events helped many of the women to realize that being in HIV care was critical to their being able to experience these events. Women expressed that staying engaged in care would allow them to live to see important life events such as marriage, and birth of grandchildren.

Despite the influential role of family, women often had complicated social and life issues that impacted their care. Women who were socially isolated had more difficulty maintaining strong social connections for engaging in care, and this was most often described as a factor when they were newly diagnosed with HIV. Women struggled to manage and cope with issues such as depression, substance use, and trauma that resulted in social isolation and affected their ability to seek HIV care. One woman highlighted how, after her son died, she used drugs and alcohol, purposely stayed out of care, and socially isolated herself.

“There was times that I kept myself out of care. And that time was when I lost my son 5 years ago. My older son was found dead in [town name]. That devastated me. And I felt like I was going to die then…And I took myself out of here. I stopped coming. I stopped taking my meds and everything…But I did a lot of cocaine and I drank a lot after my son had passed.”

She also stated that when she decided to stop attending her medical appointments then “I don't care about me”; however, later she implied that she understood the importance HIV care by mentioning that “I'm back [in care] now.”

Discussion

Staying engaged in care is critical for the successful management of HIV. Among the black women we interviewed, we found that experiences with stigma often hindered the ability to engage in care. And yet, women who engaged in care found ways to mitigate the effects of stigma and often had supportive social connections. The interconnectedness of disclosure, stigma, and social support related to engagement in care was dominant across the women's narratives. This was often portrayed as reluctance to disclose and subsequent loss of social connections that could facilitate engagement in care. The fear of being “outed” as HIV-positive and negative experiences with being stigmatized, inhibited their ability to find positive social support. However, once women began to manage the impact of potential stigma many were able to disclose their status and obtain support that facilitated engagement in care.

Previous studies have found that engagement and retention is a substantial problem,^3,5,10 but have rarely described it in the context of how older black women experience HIV care. Our analysis indicated that solely focusing on the act of attending visits may obscure the complex interaction of both social support and stigma on engagement in HIV care. Our findings are consistent with literature that focus on understanding how different forms of stigma may intersect between high levels of perceived stigma and decreased likelihood of disclosure, particularly among HIV-infected black women.^37
–39 Once the women felt that support would provide them a major advantage in terms of being able to engage in and stay connected to HIV care, they were eventually able to disclose. The number of persons the women disclosed to varied, but many realized disclosing to someone was a decisive step in coping with HIV and decreasing barriers to HIV care. When women were no longer fearful of disclosing they were able to gain support which was facilitated by their social ties, including financial (money for transportation), emotional (encouragement, accepting the HIV diagnosis), and tangible support (taking women to appointment, reminders to take medicine, linking them to ASOs). This is also consistent with recent findings about the importance of addressing basic daily needs in order for African American women to effectively manage their HIV.⁴⁰

Formal support from medical providers also fostered engagement in care at times, except when they stigma felt stigmatized by these providers. Regardless of the doctor's intention, if the women perceived that the doctor looked down on them it affected the women's desire to engage. Women were less willing to engage when they perceived that providers did not care about their well-being or had a negative attitude toward patients. These experiences with perceived stigma from providers may have contributed to disengagement from care. However, as time progressed, many women perceived positive changes in provider behavior and attitudes among providers which may have coincided with a broader shift in provider attitudes and beliefs toward PLWH. These results are consistent with findings by Bodenlos and colleagues that indicated that patient attitudes toward HIV providers and their satisfaction with social support received from providers were associated with adherence to appointments.⁴¹

These findings extend and support prior research that links social support and stigma to health outcomes.^37,42

–45 Understanding the interaction between social support and stigma on engaging in HIV care, has implications for interventions designed to improve patient engagement in care among the growing proportion of minority women who are growing older with HIV.⁴⁶ Providers need to broaden conversations to better understand factors that motivate older black women to engage in care and can also reframe discussions with older black women on how they can use social support to buffer the effects of stigma, which may further help these women remain in care. Moreover, the study points to shifts in the perceptions of social support and stigma among women who have been living with HIV for extended periods of time. These internalized perceptions may have also occurred concurrently with shifts related to HIV-stigma and the treatment of PLWH within the broader social world.^30,47,48 Thus, HIV care providers may also need to take into account the shifts related to stigma and social support in order to facilitate long-term engagement in care.

Limitations

Our findings have several limitations. First, as the interviews were conducted within a HIV primary care clinic, participants receiving care at that clinic may have been reluctant to fully report negative encounters with their providers. Inclusion of some participants who received care outside of the clinic may have mitigated this limitation. Second, while this qualitative inquiry allowed for a naturalistic approach in obtaining rich data directly from a group of women with a range of HIV care experiences, women were currently engaged in care and thus self-selection may have limited the findings and themes that emerged from the interviews. The experiences of women who were not currently in care were not included in this analysis; however, the majority of the women had past experiences of not engaging in care. Thus, participants gave insight into what kept them out of care and subsequently what helped them to return to care.

Third, we discovered that while a majority of the women were African American, a small proportion of participants (n=4/20; 20%) were from the Caribbean and Africa. We did not have sufficient numbers to distinguish the experiences of these women from each other. Thus, the narratives may have been biased towards women of African American heritage. Finally, because all women had children and grandchildren, it was difficult to determine if their experiences engaging in care were distinct from women without children and grandchildren.

Conclusions

The interrelationship between stigma and social support had a profound impact on how these women engaged in HIV care. The interviews suggest that the barriers to engaging in care may be minimized when women are able to disclose to someone and accept support. Disclosure decisions in the context of HIV care may be influenced by the social world with support from both informal and formal sources. However, their social world could also be a lasting source of distress that affects their health-seeking behavior if women continue to experience stigma or do not receive support from friends, family, or providers.

Without understanding the complex interconnectedness between social support and stigma, we cannot capitalize on the power of social support to engage older black women with HIV in ongoing medical care. Providers play an important role in successfully engaging and retaining HIV-infected individuals in ongoing care. Consequently, they are positioned to leverage the relationship between formal and informal sources of support by understanding the changes in these women's lives as they struggle with stigma and disclosure while engaging in HIV care. The focus on the patient's perception and individual behaviors related to engaging in HIV care may help providers and medical teams extend these findings to improve efforts to engage older black women in regular HIV care.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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