Abstract
The HIV (human immunodeficiency virus) epidemic in the United States remains a serious public health concern. Despite treatment and prevention efforts, approximately 50,000 new HIV cases are transmitted each year. Estimates indicate that 44% of all people diagnosed with HIV are living in the southern region of the United States. African Americans represent 13.2% of the United States population; however, 44% (19,540) of reported new HIV cases in 2014 were diagnosed within this ethnic group. The majority of cases were diagnosed in men (73%, 14,305). In the United States, it is estimated that 21% of adults living with HIV are 50 years or older. There exists limited data regarding how well African American men are aging with HIV disease. The purpose of this study was to explore the perceptions and experiences of older African American men living with HIV in rural Georgia. Data were collected from 35 older African American men living with HIV using focus groups and face-to-face personal interviews. Qualitative content analysis revealed six overlapping themes: (1) Stigma; (2) Doing Fine, Most of the Time; (3) Coping With Age-Related Diseases and HIV; (4) Self-Care; (5) Family Support; and (6) Access to Resources. The findings from this study provide new insights into the lives of rural HIV-infected African American men, expands our understanding of how they manage the disease, and why many return to or remain in rural communities.
Use of antiviral medications to treat human immunodeficiency virus (HIV) infection has resulted in a dramatic decrease in the number of infected individuals advancing to AIDS and dying (Cahill & Valadéz, 2013). Despite treatment and prevention efforts, it is estimated that 50,000 new cases of HIV continue to be transmitted each year in the United States (U.S. Department of Health and Human Services [USDHHS], 2014a). Thus, the HIV epidemic in the United States remains a serious health issue for the nation.
Since the first AIDS cases were reported in Los Angeles and New York City in the 1980s the epicenter of the HIV epidemic has shifted, and the South is now experiencing the greatest burden of HIV infection, illness, and death (Centers for Disease Control and Prevention [CDC], 2015a; Prejean, Tang, & Hall, 2013). The southern epidemic was initially in urban centers; however, the region now has a greater number of newly diagnosed cases of HIV in rural and suburban areas compared with similar areas in other parts of the country (Reif, Pence, Hall, Hu, Whetten, & Wilson, 2015). In 2013, 51% of all new HIV cases were reported from southern states. National surveillance data indicate that 44% of all people diagnosed with HIV are living in the southern region of the United States. Despite declining death rates among people living with HIV, the South accounted for almost half (47%) of the 16,281 HIV-infected individuals who died in 2013 (CDC, 2015b, 2015c).
The southern United States consists of 17 states (including the District of Columbia) and more than one third (37%) of the country’s population resides in this area. This region is substantially less urban than the remainder of the country with approximately 24% of the population living outside an urban area (Mackun, Wilson, Fischetti, & Goworowska, 2011; U.S. Census Bureau, 2010). Approximately 13.2% of the U.S. population is African American, but 18.5% of this ethnic group lives in the southern region (Prejean, Tang, & Hall, 2013; U.S. Census Bureau, 2014).
In addition to geographic differences, the HIV epidemic has consistently reflected racial and ethnic disparities. More and more African Americans living in the rural South are being disproportionately affected by HIV disease (CDC, 2015a, 2016). In contrast to other racial/ethnic groups, African Americans have experienced increasing rates of HIV disease and the disparity between African Americans and other racial/ethnic groups has become worse over time. Specifically, African Americans have a higher proportion of new HIV diagnoses, individuals living with HIV, and persons dying from the disease (CDC, 2015b, 2015c, 2016). In 2013, the rate of new HIV infections per 100,000 African Americans including adults and adolescents (55.9) was nearly 9 times that of Caucasians (6.6) and almost 3 times that of Hispanics/Latinos (18.7; CDC, 2015b). Regrettably, there were 3,742 HIV-related deaths among African Americans in 2013. This represented 54% of the total deaths attributed to HIV disease in that year (CDC, 2016).
There are multiple personal and social factors that contribute to the high rates of HIV in the African American community. These include poverty, lack of access to quality health care, inadequate housing, low HIV testing rates, substance use, stigma, fear, discrimination, and homophobia (Abbott & Williams, 2015; Foster & Gaskins, 2009; Gray et al., 2016; Maulsby et al., 2014; Webel et al., 2014). Southern states struggle with disparities in health care coverage, health status, and health care relative to other areas of the United States. Because of these inequities, people living in the southern region are more likely to be uninsured, less likely to have access to needed health services, and are more likely to experience chronic health conditions such as diabetes, cancer, heart disease, and HIV (Stephens, Artiga, & Paradise, 2014). These disparities may be even greater in rural southern communities where resources are limited (Institute of Medicine, 2002; National Partnership for Action, 2011).
In 2014, 44% (19,540) of newly reported HIV diagnoses were within the African American population. The majority of these new cases were diagnosed among males (73%, 14,305). The leading risk factors for HIV among African American males are men who have sex with men (MSM) and substance use (CDC, 2016; Reback & Fletcher, 2014). Gay and bisexual men represented 57% (11,201) of all HIV cases diagnosed within the African American population. From 2005 to 2014, the number of new HIV infections among gay or bisexual African American men increased by 22% (CDC, 2016).
Men who abuse drugs and alcohol are particularly at risk for HIV not only because of their substance use, but they frequently participate in high-risk sexual behavior while “high” (Ackers et al., 2012; Booth, Watters, & Chitwood, 1993; Koblin et al., 2006; Reback, Fletcher, Shoptaw, & Grella, 2013). Additionally, these men may engage in risky sexual behaviors for money to obtain drugs or alcohol and often have limited awareness or concern about their risk for HIV infection (USDHHS, 2014b).
In the United States, it is estimated that people aged 50 years and older account for 21% of all persons living with HIV disease (CDC, 2015d; Moore, 2011). Because people are living longer with the disease, they are more likely to develop age related comorbidities such as cardiovascular disease, cancer, diabetes, and osteoporosis (Cahill &Valadéz, 2013; Costagliola, 2014). Moreover, ageism and HIV are stigmatizing and can contribute to lack of social participation and support (Chambers et al., 2014; Sowell & Phillips, 2016).
While African Americans continue to have a higher mortality rate from HIV compared with other ethnic groups, appropriate care and treatment is making it possible for people to live decades if they have access to needed health and support services. There are limited data related to African American men who are living in rural or nonmetropolitan areas of the South where resources may be more limited. This lack of data is especially true for African American men older than 50 years, as they grow older with HIV within the context of other age-related illnesses and psychosocial adjustments. The purpose of this study was to explore the perceptions and experiences of older African American men living with HIV in rural Georgia.
Method
Design
This study used a qualitative exploratory approach that included a convenience sample of older HIV-infected African America men currently receiving HIV health care services from public health agencies in the state of Georgia. The three researchers involved in this study are tenured nursing faculty, who have extensive experience in working clinically and academically with HIV-infected persons. The research team is ethnically diverse and includes two females and one male.
Data were collected using focus groups and face-to-face personal interviews. For men who were concerned about confidentiality, individual interviews provided a safe and private setting for them to share their experiences and perceptions. Providing the option to participate in a focus group or interview allowed individuals to be comfortable with the data collection process and more likely to discuss sensitive issues.
Focus groups are defined as group discussions where persons from a targeted population discuss and share their perspective of a specific topic or issue of interest, conducted by a facilitator. Also, these discussions allow individuals to share and compare personal knowledge, beliefs, experiences, and feelings about living with HIV and aging while residing in a rural community (Krueger & Casey, 2015; Morgan, 1996; Rubin & Rubin, 2012). Face-to-face interviews have been identified to be equally effective, especially if there is an effective facilitator (Cohen, Manion, & Morrison, 2011; Taylor & Blake, 2015). These methods provided the researchers an opportunity to clarify participants’ responses regarding their perceptions and experiences related to aging with HIV in a rural community. All focus groups and interviews were audio-recorded and participants were asked to complete a demographic data questionnaire.
Sample and Setting
The researchers obtained approval for the study from their university’s institutional review board (IRB) and the Georgia State Department of Public Health’s IRB. The researchers then contacted 11 public health agencies that provided HIV treatment and support services to individuals living in rural areas of Georgia. All agencies were located within a 150-mile radius outside of a major metropolitan city.
Five public health agencies agreed to assist with recruitment of eligible African American males. After IRB approval, agency staff began recruiting participants. The inclusion criteria included being HIV-positive, 50 years of age or older, and living with HIV for at least 5 years. Initially the study proposed using focus groups exclusively. However, agency personnel informed the researchers that many potential participants wanted anonymity and would only agree to participate if an individual face-to-face interview was accommodated.
Procedures
Based on the day and time preferences of men and participating agencies, focus groups or interviews were conducted in a private room at the facility by two members of the research team. Conducting the focus groups and individual interviews at the recruiting public health agency provided greater security and allowed subjects to participate in a familiar environment.
After convening each focus group or individual interview, the researchers introduced themselves, thanked the men for coming, described the purpose of the research, reviewed the consent form, and answered questions about the study. The consent form included a request to audio record the focus group or interview and everyone agreed to be recorded. In order to maintain anonymity, participants did not use their real names during the discussions, but instead, self-selected fictitious names. The men were assured their self-selected names and any other identifying information on the recordings would not be transcribed, and the audio recording would be destroyed after data analysis.
One researcher facilitated the focus groups and face-to-face interviews using a semistructured interview guide. The interview guide consisted of open-ended questions such as Tell me what it is like living with HIV and Tell me what it is like aging with HIV in rural Georgia. Probes were used by the facilitator to encourage participation and clarify individuals’ comments. Another researcher kept time (2-hour limit), monitored the audio recorder, and took field notes. Demographic data were obtained by means of a short anonymous questionnaire distributed to participants at the end of each session. Refreshments were provided and each individual was given an incentive for participating, a $50 gift card to a superstore located in or near their community of residence.
Data Analysis
One research team member guided a graduate research assistant in the verbatim transcription of all audio recordings (monitoring transcribed data as completed and checking for accuracy). The research team used a constant comparative approach to analyze the qualitative data (Cho & Lee, 2014). Each researcher independently and manually coded the data for themes. These three independent sets of themes were compared for similarities and differences across all five geographical locations prior to combining them into one set, excluding any redundancy. Data from the focus groups were analyzed independent of the individual interviews. Results revealed that there were essentially no differences between focus group and interview participants’ experiences and perceptions; therefore, the data were combined for final analysis. These steps supported validity of the data reduction process. Demographic data from the study sample were analyzed using descriptive statistics.
Results
The sample comprised 35 African American males living with HIV from 5 rural communities in Georgia. During the discussions, participants were open and forthcoming in describing their life experiences. They responded to probes and were not hesitant about sharing personal aspects of their lives, especially behaviors related to substance use, risky sexual encounters, and incarceration.
Of the 35 men in the study, 27 participated in 1 of 4 focus groups with the number in each group ranging from 2 to 10. Per participant request, eight individual face-to-face interviews were completed. The average number of years living with HIV was 20.9 and the mean age for participants was 55.6 years. Five men self-reported being diagnosed with AIDS. Nine men had less than a high school education and10 men completed high school. Fourteen men completed technical or trade school or had at least some college. One man completed college and another man had a doctorate degree. Nineteen men reported an income of less than $10,000 per year. Five men had an income greater than $25,000 per year. Fourteen men reported being single, 7 were married/living with a female partner, 1 lived with a same sex partner, 8 were divorced, and 1 man was widowed. Nineteen men had at least 1 child.
The qualitative analysis of the study transcripts revealed six overlapping themes: (1) Stigma; (2) Doing Fine, Most of the Time; (3) Coping With Age-Related Diseases and HIV; (4) Self-Care; (5) Family Support; and (6) Access to Resources. Within these themes a number of subthemes were identified (see Table 1).
Themes and Subthemes of Older African American Men Living With HIV.
Men reported that Stigma was a concern they faced often while living in a rural community. Discussions related to the overall theme of stigma included issues around community attitudes toward HIV, internalized stigma by the men, presence of gay stigma that transferred to individuals who were HIV-positive, ignorance and lack of knowledge as a basis for stigma, and issues surrounding disclosure.
One man talked about stigma in his rural community and said, “It’s terrible here. Because not only is the stigma, um, bad as far as the community . . . you know, positive individuals, it keeps us from coming to the forefront and asking for things that we need.” Another man underscored this concern, he kept his HIV status secret, “. . . because a lot of people don’t want to deal with people that have HIV. They’re afraid that they might catch it. They [community residents] are more closed minded to it.” A third man reported that HIV stigma in the community extended to the health care system. He said, “. . . it’s when you be around some of them [healthcare providers] you, you get a cold feeling. . . . It’s an attitude.” One man reported that the doctor was scheduling him for surgery until he learned of his HIV status. He stated, “. . . then because they found the HIV, so, the doctor wanted me referred [to a larger city].”
Many men disclosed their personal history of drug and alcohol use and felt they faced multiple stigmas because of their HIV-positive status and history of addiction. One man said, “It is almost easier to tell people you have HIV, uh, than the drug use.”
Several men experienced stigma that they felt was a result of being gay. One man said, “If they find out you are HIV, then you must be gay, um, got it from gay sex.” The degree of gay stigma was emphasized by a second man concerned about the community finding out he was gay by saying, Wow, so it would be a whole lot of hatred. When it comes to suspecting you’re a homosexual, that’s one strike against you, and then when they find out you’re homosexual living with HIV, you know, in a small area, I don’t know what one might do [to another person], just out of hatred.
Another man reported that members of his church knew he was gay, “We [he and his partner] are active in church.” The participant felt the church would not be as accepting if it was known that he and his partner were living with HIV.
A few men indicated that they were experiencing internalized stigma. One man said, “I did not want to go to the clinic and let them find out about my HIV. I was ashamed.” A second man said, “I was the kind of person that, um, if I have a problem or something’s going on with me, I beat myself up.” Another man agreed saying, “I’m sure I’m not the only one facing this [internal stigma], we’re not the only ones facing this. And we gotta get over that [internal stigma].”
Many men believed that the stigma they faced was because of a lack of education and ignorance in the community about HIV. One man who traveled 45 minutes to a clinic said, “I just didn’t feel comfortable going to the health clinic there [his smaller town] because, you know, so many people being ignorant and stuff like that.” He continued by saying that he was afraid that if he went to the clinic in his small town, people coming into the clinic at the same time would learn he had HIV, “I just don’t want, really want to expose that to them, because I don’t think they would really comprehend this disease.” Another man said, “I mean, it seems like everybody would have an understanding of it [HIV] by now. But there’s still some people that still believe you can [get] HIV by touchin’ ‘em.” One man summed up the group’s perspective by saying, “It’s a matter of lack of education, people are still ignorant about HIV and don’t have the right education on the matter . . . around here everyone walks backward instead of frontward.”
Because these men were acutely aware of the presence of stigma, they were careful to whom they disclosed their HIV status. It seemed that men had disclosed to their immediate family, but were not willing for their HIV status to be open to others. One man put it this way, “I don’t really tell anybody unless, less I’m dealin’ with somebody . . . or a girlfriend or somethin’ like that, but other than that, I don’t let anybody know that I have it.” Participants were aware that disclosure, even to friends, might have consequences. One man related his story about disclosing to a friend by saying, “I thought he was a friend of mine and I told him about it [HIV]. And, he went and told the boss and the boss let me go.” Another individual summarized the men’s feelings by saying, “I only tell others that need to know . . . like my girlfriend or family, or you know, those who are taking care of me in the clinic or hospital.”
Related to the theme of Doing Fine, Most of the Time, participants expressed concerns about the future as they aged with HIV, but the majority reported their needs are currently being met, even though they lived in a rural community. As previously noted, the men in this study had been living with HIV for many years. One man said, “. . . havin’ been positive for so long, I’ve dealt with it, I’m ok.” Another man stated, “Now that I’m in compliance with what my doctors and my case managers from the health department suggest that I do, I’m comfortable and healthy. . . . I feel that I will have a productive life.” A second man agreed. “I took the medication, I trust God, basically, you know, I really haven’t any major complications with it [HIV].” A man diagnosed since the 1980s reported, “So, its undetectable [viral load]. . . . So, I think that I’m getting the medications that I need and everything is right now. . . . I got no complaints.” Another man echoed the others saying, “Yeah, God has been good to me and the medicine that I take is great you know. I don’t have no health problems . . . to tell you the truth, I feel so wonderful.” One man reported that he was fine and was not taking any medication. He said, “But, I been doing good and as far as medication, that’s my choice, you see what I’m saying, it has been recommended, but it’s by choice . . . it’s been 30 years and I’m doing good.” One man seemed to sum up the feelings of most of the men by saying, “I’m doing fine, I’m good.”
Although most men felt they were receiving appropriate care and treatment in their rural communities, some men admitted they were concerned about how HIV would affect their lives as they aged. One man explained, I do worry [about getting older] because they say as you get older with this disease you gonna start having more disabilities, you know as far as being able to walk . . . you gonna need ramps and all of those things . . . but I know a couple of older people that still walks, you know, and they are about 68. But that’s the only fear that I have, I don’t know if I’ll be able to financially have a ramp built or have walls torn out and stuff like that.
Another man said he was not sure if it was HIV, but “I’m getting old, and I’m hurting, that’s part of life. . . . You goin’ hurt.” He was not sure how HIV would affect his age-related aches and pains as he got older. He also said, “That’s a concern for me.” Another man had a similar concern about getting older with HIV and who would take care of him. He said, “I think one of the biggest things . . . that we worry about is havin’ someone there with us when we need ‘em.” When asked if this was because of HIV or just getting older he reported, “Me, because I’m getting older, but HIV might make it worse.”
Closely related to aging with HIV was the theme of Coping With Age-Related Diseases and HIV and how it would affect their lives. A number of men reported having to manage diabetes, hypertension, and cardiovascular disease. One man said, “. . . and especially diabetes. I have more trouble with my diabetes than I do HIV to tell you the truth . . . and it’s getting to the point that now I’m havin’ trouble with my feet. And I think they call it neuropathy.” When probed about aging with HIV, one man said “. . . it gets rough sometimes. Sometimes it’s all right. It’s just difficult. Sometimes it’s bad. . . . It’s kinda what mood I’m in, I guess, but I know I don’t like it.” Another man told his story about getting older with HIV saying, Since 2008, I have been coming down with other medical issues, I’ve had cancer twice with three different kinds of cancer. And I have degenerative arthritis issues. I know it has a lot to do with the virus. I have a family history of cancer. . . . I think it’s exaggerated by the virus.
He went on to say, “I’m not going to succumb to it either. It’s going to be a fight, either way you want to look at it [either HIV or family history].” A third man reported “I’m experiencing issues already with my vision, night is getting’ really hard, and I’m only 53 years old . . . welcome to my world.” Yet another man said, “I just recently had a stroke. I got meningitis on the brain and I gotta take medication for that every day. I had to learn to walk again.” One man summarized the uncertainty that men were facing by saying “So it, it’s [a concern] based on getting these symptoms and not knowing if it is because you getting old or it is the disease . . .”
The men attributed the fact that they were doing fine to their Self-Care behaviors. Many of the men disclosed they had abused drugs and alcohol for many years and a number of them had been in prison. One man reported “I was in and out of trouble… and, I found out [HIV positive status] when I took a test when I was in prison.” When describing behaviors that led to incarceration and HIV infection, another man said, “Before my HIV diagnosis I was drugging, drinking, and having sex with anybody around.” Some men reported that they had increased their drug use when they received their diagnosis. One man reported, I was diagnosed with HIV at 45 and went to smoke [crack] when I found out. Man I want to tell you something, I already was smoking crack. . . . I went crazy with it then. . . . I went to drinking like it was going to make it better.
However, some 20 years later he realized that he had to “. . . clean up, if he wanted to live.” He went on to say, “I had to stop and think and change, and get on that medicine . . . that is what I did. I’m proud of myself.” Someone else reported, So, as far as aging with it, it doesn’t really bother me because I try to do all the good things like eating right, exercising, and you know, do the things that stop it from spreading, like when I have sex, I have . . . use a condom.
The value of taking care of yourself was echoed when one man said, When I was diagnosed, my CD4 count was down to 125, but I had never had any kind of health issues or anything . . . I’m 62 years old now and I still work out and exercise. And I think that’s got a lot to do with me being as healthy as I am right now.
Men consistently touted the value of maintaining a positive attitude. One man said “You’re talking to a very positive person. And I’m not fixin’ to let nobody take that away from me; if anything, I’m trying to give them some of it [positive outlook].” A second person agreed saying, “. . . it’s very important to be happy and to be positive. And, you can make life a lot easier for yourself.” Since a large number of participants had a history of drug and alcohol use, many were in a 12-step program and embracing their inner spirituality and put their faith in God to help them stay well. One man explained, . . . and I had all the information I needed [to stop using drugs], the only other thing was the desire. What we do is we take 12 steps and give Biblical counterpart to where it actually came from . . . recovering, it’s called Celebrating Recovery . . . and it’s rooted in the Word, it gives a person the understanding where the actual help is coming from.
Several men reported a belief that their HIV diagnosis had been a benefit to them. One man said, “For me, being diagnosed with HIV was a blessing . . . if I had not gotten the diagnosis, I would have continued to be in the streets drugging and drinking. . . . I would be dead by now.”
The men in this study indicated that their HIV diagnosis was a wake-up call to change negative behaviors and focus on a healthier lifestyle. In fact, a number of men reported that their current self-care behaviors had resulted in them aging well, and in some cases they were aging better than their HIV-negative peers. One man talked about his HIV-negative friends and said, “Actually, some of ‘em [friends], I feel like I’m aging better.” A second man supported this perspective by saying, “So, I’ve had friends who, I just had a sponsor in NA [Narcotics Anonymous] that had a heart attack, and he wasn’t positive. And he was younger than me.” Another man supported this belief saying, Actually, I think I am doing better, much better [than HIV negative friends]. Because they don’t take care of themselves, you know, and I don’t really think about the disease like I once did, you know it’s just basically a part of my life now.
Family Support was a frequent theme in the men’s discussions. Family members were the main source of physical and emotional support. The majority of men disclosed to family, with only a few reporting that some family members treated them differently after disclosure. One of the men said, “Well, all my family members know about it [HIV diagnosis], and my mother was a nurse for 40 years . . . so, she knew the medical side of what I was taking [medications] because she had worked with HIV positive mothers.” A second man agreed saying, . . . when I told my mom, my mom never even flinched as far as her love and devotion was concerned. The only thing with her, I had to let her know because she was over cautious. Every time I coughed or I grunted, that don’t mean it’s the virus.
A third man described his relationship with his children who know his HIV status. He said, I am very cautious, you know, as long as my kids and closest contacts don’t have the virus . . . you’re just hugging and kissing, and you know, it’s not that easy to give [the virus to family]. I’m so glad that my family was so accepting.
Men in the study were confident their families accepted them and provided the needed support to deal with HIV and maintain sobriety. Several men talked about their wives’ acceptance after being diagnosed with HIV and other men developed new romantic relationships even after disclosing their status. One man described this experience saying, . . . because she’s been good to me, and I love her to death. I really do. That really built me up too, when she came into my life, it made me stronger you know, and less ashamed because I know somebody loved me for just being me.
Another man echoed acceptance by saying, I thank God for her because she accepted me for that—when I explained to her that I was HIV and how many years . . . That woman did not turn away from me, she said I love you, said I’m gonna work with you with this, and she is negative.
Often men who had lived in large cities returned to their rural family home as they aged and began to seriously deal with their HIV-positive status. Men who returned home reported wanting to be close to family even though the communities were very conservative and tended to be negative about people with HIV. A man said, “I was liv’n in Atlanta when I was diagnosed. I had to move away from all that and close to my family.” He went on to say, “My whole family knows, my father, mother, brothers and sisters, and my kids. They accept me. I mainly stay around them.”
On the other hand, some men reported that they had family members who were not always supportive and treated them differently since their HIV diagnosis. One man said, “You know, your own blood relatives! Put your business out in the street; and some of mine did that to me. They couldn’t wait to let me tell people, they beat me to it.” A second man explained his experience with some family members by saying, “And then you get around some people [family members] that know you sick . . . they don’t want you around, and it makes you feel bad, you know the mental part. They don’t want you at certain functions . . . I just leave.” This man went on to say everyone in the family treated him fine except his niece’s family. When he came to her home, she wanted him to eat on paper plates and use plastic utensils. When other family members confronted the niece, she denied it, but continued to treat him differently. A couple of men disclosed to their church members and called them their church family. A man said, “I have told my church family, and they don’t treat me any different.” A number of the men had not disclosed their HIV status to friends and other members of the community. One man put it this way, “. . . you know a lot of people you don’t want in your business, so you know it’s just, you can’t have a regular life.”
When discussing the theme Access to Resources, many men reported that they had adequate resources in their community. One man stated, “. . . like I say, God has taken care of me, you know, I got everything I need . . . I started with a counselor and you know as far as health, housing, and everything, they helped with it.” A second man agreed by saying, “I am good, I have everything I need here.” Another man said he gets good health care in his community. He said, “They do a great job, I mean they care about each and every person that walks through the door . . . the doctors and nurses give you 100%. Excuse my French, but they do a damn good job.” A second man said, “I basically agree . . . my doctor’s wonderful and I go to a dentist, and my dentist is good . . . never a problem.” However, men acknowledged there might be fewer resources available to them in rural communities. One man summed it up this way, “Well, I mean, of course there’s probably more benefits in a larger city . . . resources yeah, benefits.”
The theme Access to Resources included gaps in services for people living with HIV in rural communities. Transportation was a frequent topic that was identified as a need. One man had moved from a more rural area to his current community because he needed transportation to the HIV clinic. The man said, “Transportation is rough . . . I use to live across the river and had to try to get people to bring me to appointments. It got so hard; you know that I just moved over here, closer to the clinic.” Another man explained his problem saying, So I told her [case manager], I said well, I got an appointment tomorrow. She goin’ tell me, ‘Can’t you take the money that they give you [disability] where you can get transportation to go to your doctor? They have a bad understanding of what double dipping is. Everything isn’t double dippin’, but they wanna lump it all together. You get one thing, and then you can’t get another . . . they can allocate more funds to transportation . . . so as far as bus tokens, we don’t have that here.
A few men said there was a need for housing and food support, “We have a homeless issue here. We have substance abuse issues here and I’m real sensitive to that . . . we don’t have anything addressing the meals here in this area, I didn’t know how to get help.” Additionally, age- and gender-specific medical and support resources were identified as being needed. Men felt that most services were targeted to women and children. One man complained, “They [women] have ‘She Prevails’ . . . that is a mental health and addiction program . . . men don’t have that.” Men wanted male-oriented support groups and programs. Another man said, “. . . and in that instance, you’re sayin’ that the male is not as important in the family role as the woman, when that’s not the case.” Other men also expressed the need for male-oriented medical services. One man said, How many men know the importance of taking care of those anal warts while they’re still warts? Because they can become cancerous . . . now talking about cancer, cancer of the urethra, you know, I am sharing that in the group because I’m the recipient of both . . . we don’t have anything like that here [male focused health education and services].
Overall, these men believed that fewer funds are allocated to smaller towns and rural areas as compared with large cities. This resulted in fewer available resources and access to services that focused on their needs as older adults.
Discussion
The rural southern United States has historical characteristics that can serve as barriers to HIV prevention and health care for persons living with HIV. Compared with other regions of the United States, the South has a larger number of African Americans, lower rates of education, higher rates of poverty, high rates of unemployment, poor access to health care, and high rates of chronic diseases (Reif, Geonnotti, & Whetten, 2006; Reif & McAllaster, 2015). Individuals infected with HIV in the rural South face barriers to receiving HIV care that include stigma, lack of transportation, and limited social services and public health agencies (Reif, Golin, & Smith, 2005; Vyavaharkar, Glover, Leonhirth, & Probst, 2013). Additionally, people living in rural areas often exhibit negative attitudes about HIV, stereotype people living with the disease, and support antigay beliefs (Collani, Grumm, & Streicher, 2010; Reif et al., 2014). These characteristics of the rural South provide the context in which the men participating in this study live while growing older with HIV.
Stigma was an issue identified by the men who participated in this study. They described multiple levels of stigma in their communities. Participants experienced HIV stigma, gay stigma (even when they were heterosexual), stigma from drug and alcohol use, stigma of having a prison record, and internalized stigma. Men reported that many people in their rural community are uninformed about HIV or just ignorant about how HIV is transmitted and thought it can be easily be transmitted. Such stigma was often a major factor that influenced where participants in this study received health care, whom they told about being HIV infected, and their willingness to interact with members of the community. Researchers and government agencies have identified stigma as a major factor affecting the well-being of individuals with HIV, as well as a barrier to preventing the continued spread of HIV (Brinkley-Rubinstein, 2015; Cleek, 2014; Galvan, Davis, Banks, & Bing, 2008; Hatzenbuehler, Phelam, & Link, 2013; Sowell & Phillips, 2016; UNAIDS, 2014). Due to the potential consequences of community members learning their HIV status, the majority of men were very selective to whom they disclosed. Previous research has reported that internalized stigma and lack of disclosure are associated with depression and poor health outcomes (Galvan et al., 2008; Okello et al., 2015).
Gaskins et al. (2011) and Bairan et al. (2007) previously described this selective disclosure and provided insight into how the decision to disclose to specific individuals or groups is made. Interestingly, most men in this study had disclosed their HIV status to family and several indicated that they had disclosed to sex partners or women with whom they were developing a relationship. The majority of men had not disclosed their HIV status to members of the community due to the stigma they would encounter. To maintain confidentiality, several men traveled from their rural community to a larger town for their health care. These men felt that the close social networks in their community meant that the whole community would know they had HIV if they visited a local health care clinic. One man, who identified as gay, reported that his church family knew he was gay, but he was not willing to disclose to them that he was HIV infected. Historically, African American churches in the rural South have held a negative view of homosexuality and were not accepting of individuals who identified as gay (Lemelle & Battle, 2004; Lewis, 2003). While this man’s church family was accepting of his sexual identity, he felt that the double stigma of being gay and having HIV would be more than the church community would tolerate.
All of the men were from rural communities, but many had moved to metropolitan cities as young adults. The majority reported that living in the city was where they began to use drugs and alcohol. Previous research has suggested that African American men living in a stressful urban environment can be at increased risk for exposure to and utilization of illicit substances (Seth, Murray, Braxton, & DiClemente, 2013). This may be especially true for men who have migrated to an urban area from the more supportive and familiar environment of a rural community. All of the men felt that they had become HIV infected while living in an urban setting. Several men reported that they not only injected drugs and abused alcohol, but when using these substances, had also engaged in a number of high-risk sexual behaviors for acquiring HIV. These findings are consistent with research that reported that the use of injection drugs and crack cocaine put individuals not only at risk for acquiring HIV from sharing needles, but that these persons participated in risky sexual acts and exchanged sex for money to buy drugs (Booth, Kwiatkowski, & Chitwood, 2000; CDC, 2015d; Yan, Chiu, Stoesen, & Wang, 2007).
A number of men in this study had been in prison. This was the result of their substance use, possession of illicit drugs, and criminal acts to support their addiction. This is not surprising when considering the disproportionate number of African Americans incarcerated because of criminal charges related to illicit drugs (Drug Policy Alliance, 2015; National Institute on Drug Abuse, 2012). The men in this study seem to represent the many African American men who go to prison because of their substance use disorder and have limited opportunities to receive meaningful treatment. Galea and Vlahov (2002) have proposed that health and access to substance disorder treatment services is inextricably bound to an individual’s social environment and social processes. This may be especially true for African American men who are more likely to be socially and financially isolated from resources available to other ethnic or economically advantaged groups.
Interestingly, several men in this study with a history of drug and alcohol use stated that being diagnosed with HIV had been a blessing and likely saved their lives. They believed that if their HIV diagnosis had not been the catalyst that made them reevaluate their lives, they would likely be dead. Men shared that if they had continued to abuse drugs and alcohol and be involved in dangerous behavior, what they called the “streets,” they would not be alive to grow older with HIV. It is possible that not only did their HIV diagnosis encourage them to make life changes, but it may have also provided them with access to drug or alcohol treatment services and improved health care due to federally and privately funded HIV-related services that are focused on treatment and prevention of HIV (Janssen et al., 2001; Samet, Friedmann, & Saitz, 2001).
Once men had accepted their HIV diagnosis and focused on living with the disease, they returned to their families in small towns and rural communities. A primary reason for returning home was to be near their families of origin and gain support as they age with HIV. The supportive ties in the African American family were addressed by Malson (1983), identifying the role of the extended African American family in providing support. The mutual aid and social support exchanged by members within an African American family can often be the strength that helps sustain the family. A second reason men returned to their rural communities was to remove themselves from environments and behaviors that contributed to becoming infected with HIV. The rural community supported a more peaceful environment that allowed these individuals to focus on health and maintain sobriety. It was clear that these men realized they had to be distant from individuals who were involved in drug and alcohol use, and they wanted an environment that supported a healthier life style.
The majority of men expressed an understanding that they needed to focus on taking care of themselves by adhering to medication regimes, eating healthy, and exercising. Additionally, a number of men reported being in a drug and/or alcohol treatment program. Many participants enrolled in a 12-step program that has its foundation in Christian religious principles. The National Institute on Drug Abuse (2016) has reported that the 12-step program is effective in treating alcohol abuse and states that research reports promising results in the treatment of drug abuse. It is essential for treatment programs to be culturally sensitive and acknowledge the strong religious and spiritual traditions in the African American community and focus on the psychospiritual aspects of the individual (Heinz et al., 2010; Shorkey, Windsor, & Spence, 2009).
Men growing older with HIV represent an evolving phenomenon when compared with the early years of the HIV epidemic. Thirty years ago, an individual diagnosed with HIV was expected to live only 1 to 2 years after diagnosis; the concept of growing old with HIV was not imagined. Today, because of advances in medication and medical treatment for individuals diagnosed with HIV, people can look forward to living 30 to 50 years, well into old age (Chambers et al., 2014). In 2012, approximately 24% of the l.2 million people living with HIV in the United States were 55 years of age or older (CDC, 2015e). The growing number of individuals who are dealing with HIV and other diseases related to aging is presenting new medical challenges for providers, as well as individuals who have to manage multiple morbidities, polypharmacy, and efforts to maintain physical and mental function (Balderson et al., 2013; Chambers et al., 2014).
Men in this study discussed having to deal with their HIV infection, as well as a number of other diseases that are associated with aging. Men reported having to deal with conditions such as diabetes, stroke, heart conditions, and decreasing mobility in addition to having to manage their HIV and potential side effects of a weakened immune system. Additionally, men acknowledged that because they lived in rural or nonmetropolitan communities, there were limited resources to address their needs. Men clearly believed that there were more resources available to people living with HIV in larger cities. One of the most frequently mentioned resources needed was transportation. For men living in very rural areas, transportation to health care appointments was particularly difficult. Some men had family who would help with transportation, but others had to solicit help from friends and acquaintances.
A second need expressed by some men was the need for male-specific education and treatment. Participants shared that they did not believe that men living with HIV, either homosexual or heterosexual, fully understood the significance of treatment for conditions such as venereal warts and prostrate problems. There was a discussion among some of the men that local services seemed to primarily target women. This was an interesting finding in that in the initial years of the HIV epidemic, the disease was thought to be a gay male disease and women were often ignored.
Despite the many challenges that come with aging with HIV in a rural community or nonmetropolitan area, the men in this study were surprisingly satisfied with their lives. In fact, several of them felt they were aging better than their HIV-negative friends. Some participants reported that family members and childhood friends who did not have HIV had died from health problems, while they continued to do well. Consistently men said that they were doing fine in their rural community. Even though they identified resources and services they wanted, men clearly suggested that they currently had what they needed. The support of family and the opportunity to live a simpler life where they could focus on taking care of themselves were important elements of the rural environment. Only one man said he was thinking of moving to a more metropolitan city and that was due to his desire to be less guarded about his HIV status. He felt that in a large city he would be more free to take part in activities without worrying about someone learning about his diagnosis and spreading it throughout the community.
This study provides important insight into the perceptions and experiences of African American men who are aging with HIV in a rural community. Based on a history of drug and alcohol use, prison, and a HIV diagnosis, it might be expected that these men would struggle with getting older while living with HIV. However, the results of this study suggest that these men are aging well and managing their HIV. While the study provides new insights into the lives of African American men aging with HIV in a rural community, there are certain limitations to the study that need to be acknowledged. The study used a qualitative approach to data collection with a small convenience sample. All of the men were accessing health care from a publicly funded HIV clinic where they had developed a relationship with staff who supported their recruitment into the study. These men may not be representative of other men living in their communities who had not accessed health care or were not willing to participate in the study. Therefore, the results of this study cannot be generalized and assumptions about the population drawn from the results should be carefully considered.
Findings from this research suggest a need to examine further the lives and challenges of African American men who are aging with HIV in rural communities. Additionally, there may be value in examining the men’s needs and functioning from the perspective of their health care providers and/or family. The results of this study may provide direction for future research and potentially new questions that need to be explored.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the WellStar College of Health and Human Services, Kennesaw State University, Kennesaw, Georgia.