Abstract
Introduction
The Centers for Disease Control and Prevention (CDC) projects that adults older than 50 years will account for 71% of the HIV-infected population by 2020 (CDC, 2018a). Of the 39,782 HIV diagnoses in the United States in 2016, 6,812 (17%) were aged 50+ years, and 24% of them were women (CDC, 2018b). The National Academies of Sciences, Engineering, and Medicine (2017) reported that 60% of the older women diagnosed with HIV were minority group members (42% Black and 18% Hispanic). The vast majority of these women (85%) had been infected through heterosexual contact (Durvasula, 2014). Minority older women living with HIV represent a vulnerable population that is greatly affected by health disparities and traditionally underrepresented in both clinical trials and in receiving health-related services, representing a rising burden on health care, social services, research, and policy (Cahill & Valadéz, 2013; National Academies of Sciences, Engineering, and Medicine, 2017).
Many factors contribute to the high prevalence of HIV among older women. These include, but are not limited to, age-related biological changes such as decreases in vaginal lubrication and thinning of vaginal tissue. These biological changes increase the risk of vaginal tearing, yielding a higher risk of contracting HIV during unprotected sexual intercourse for women aged 50+ years (Durvasula, 2014). In addition, as people age, there is a natural weakening of the immune system and thus an increased likelihood of contracting HIV (Desai & Landay, 2010). Many older women remain sexually active and engage in risky sexual behaviors, including having casual sex partners and engaging in sexual intercourse without condoms (Cianelli et al., 2013).
HIV testing prevalence is low (<5%) among older adults (Ford et al., 2015; Tillman, 2015), and clinicians are less likely to ask older people than younger adults about their sexual history, perhaps because they perceive older patients to be at low risk for HIV or because of discomfort (Dhingra et al., 2016; Tillman, 2015; Ward et al., 2011). Moreover, minority older women living with HIV may be less aware of their HIV risk factors. Failure to consider prevention and early diagnosis of HIV among this group likely contributes to later disease presentation and progression to AIDS within 1 year of diagnosis (CDC, 2018a).
Depression may be a consequence of unmanaged psychosocial distress among people living with HIV. Psychosocial distress has been defined as unpleasant feelings or emotions resulting from psychological and social issues, such as depressive, anxiety, somatic symptoms as well as social dysfunction (Mutumba et al., 2015). People living with HIV are disproportionately affected by higher rates of depression, which is the most important contributor to disability among noncommunicable diseases (Logie et al., 2013). Depression has harmful effects on cellular immunity, and it has been associated with a decrease in CD4 cell count and the decline in several lymphocytes, accelerating the progression of HIV (Rivera-Rivera et al., 2016).
Depression has been reported in 19% to 62% of HIV-infected women and is associated with other psychosocial issues such as suicidal ideation, AIDS-related stigma, cognitive function deterioration, decreased adherence to antiretroviral therapy, and increased morbidity and mortality (Pyra et al., 2014; Schadé et al., 2013; Tao, 2016). Other studies with people living with HIV have shown an increase in psychosocial issues such as domestic violence, isolation, and fear of stigma from family and sexual partners (Cianelli et al., 2013, Villar-Loubet et al., 2011; Sangaramoorthy, 2017). The aim of this study was to explore the psychosocial impact of minority older women living with HIV.
Method
Design
This qualitative descriptive study reports the secondary findings from a study that sought to investigate the HIV-related needs of minority older women living with HIV (RWJF-ENF-71968). Qualitative descriptive design is the method of choice when a description of a phenomenon of interest is sought and where inquiry with low inference is needed (Sullivan-Bolyai et al., 2005). Interviews were performed in the natural settings where the participants received HIV-related care. Institutional review board approval for minority older women living with HIV was obtained from the University of Miami and the Jackson Health System Office of Research. All participants signed a written consent and volunteered to participate in the study.
Sample and Setting
Convenience sampling was used to recruit participants in the Ambulatory Care Center HIV Clinic at Jackson Health System in South Florida, USA. The recruitment was conducted face to face by the University of Miami clinical research team and by nurses and physicians who referred the minority older women living with HIV to the study. In addition, flyers in English and Spanish were placed in the hospital and the community.
Inclusion criteria to participate in the study were (a) self-identify as Hispanic or Black woman, (b) be aged 50 years or older, (c) speak and read in English or Spanish and be able to provide informed consent, and (d) self-report as HIV positive. The sample size was determined during the interviewing process using the concept of redundancy or saturation. Saturation was judged to have occurred when no new data emerged, indicating that the limits of the phenomenon of the study were covered (Creswell & Poth, 2018). Saturation of data in this study was achieved with 28 participants.
Data Collection
Data were generated through face-to-face in-depth interviews with 28 minority older women living with HIV. Each woman was interviewed one time in a private office in the Ambulatory Care Center at Jackson Health System. Semistructured interviews were conducted in English or Spanish according to the participants’ preference.
The bilingual research team developed the interview questions in English and Spanish, based on the literature and experience in the area of minority older women and HIV. The interview questions were piloted with three volunteer women who satisfied the majority of the selection criteria. Women verbalized understanding all of the questions and found the semistructured interview guide easy to follow. Examples of the interview questions include the following:
How would you describe your life after you were diagnosed with HIV? Probe: Tell me about your feelings after the diagnosis; describe your emotions after the diagnosis.
What have been the most challenging aspects of your life since your diagnosis? Probe: Tell me more about your family life after the diagnosis.
Would you describe your daily activities after your HIV diagnosis? Probe: Describe any changes that took place in your day to day activities from before to after the diagnosis, tell me more about them.
The in-depth semistructured interviews lasted 45 to 60 minutes and were audio-recorded. The interviews were conducted using a semistructured interview guide with prescripted questions and probing follow-up questions to ensure consistency among participants. Active listening and sensitivity to the verbal and nonverbal responses of the study participants were important aspects considered by the interviewers. Interviewers responded neutrally to the participants throughout the interviews, without influencing their answers, as suggested by Munhall (2012).
Data Analysis
All audio-recordings were transcribed verbatim in English or Spanish. The bilingual research team members reviewed the transcriptions to verify that there were no discrepancies in either the Spanish or English versions. Research files were stored in a locked area, and digital files were saved in password-protected computers.
Conventional content analysis was used to identify and define the major themes that emerged from the interviews (Patton, 2002; Sandelowski, 2000). This type of analysis was appropriate because the existing literature about the psychosocial impact of HIV among minority older women is very limited. In conventional content analysis, coding categories are derived directly from the text data using an inductive method to identify recurring content (Hsieh & Shannon, 2005). Analysis of the data was conducted manually, and the themes and codes were built by analyzing the data line by line. Similar codes were grouped into clusters to create themes (Sandelowski, 2000). To identify codes and to create the themes, members of the research team independently read through the interview transcripts multiple times to obtain the meaning and context (Hsieh & Shannon, 2005).
A codebook and a coding sheet were developed following an iterative process of discussion among the investigators to facilitate the coding process. A parallel analysis approach among three members of the research team helped with identification and redefinition of identified themes. This process worked to ensure rigor and quality regarding the method of data, as suggested by Creswell and Poth (2018).
Results
Participant Characteristics
Twenty-eight older minority women participated in the study; 17 were Black and 11 were Hispanic. The mean age of participants was 57.36 years (SD = 6.36, range 50-77 years), with a mean number of years of education of 11.39 years (SD = 2.10). The majority of the participants reported being single or in a relationship (n = 20) and living alone (n = 17). In terms of religion, most participants were Baptist (n = 13), followed by Episcopalian (n = 6). Most also reported having public health insurance (n = 27) and not working currently (n = 24). Participants were diagnosed with HIV a mean of 20.95 years ago (SD = 7.07). Analysis of the interview transcript provided an enriched perspective regarding minority older women living with HIV. In their narrative, women described psychosocial-related factors such as depressed mood, isolation, economic challenges, stigma, anhedonia, and fear of death, among others. Although the researchers did not explore whether these minority older women living with HIV had a prior diagnosis of mental illness (i.e., depression), it was evident during the interview that living with HIV brought about psychosocial distress, noted by changes in their speech volume, rate, and rhythm, as well as a change in their affect. The analysis of the interview data yielded five main themes: (I) Social Impact of HIV, (II) Threats to Health and Well-Being, (III) HIV as a Death Sentence, (IV) Spirituality, and (V) HIV Treatment Adherence (see Table 1). Pseudonyms were used to maintain anonymity while allowing us to illustrate the themes.
Themes and Categories: Psychosocial Issues Among Minority Older Women Living With HIV.
Theme I. Social Impact of HIV: Isolation and Nondisclosure
Most of the participants described the effect that HIV had on their lives, such as a reduction in their social activities and circle of friends, as well as the challenges related to family after they were diagnosed with HIV. For other participants, a sense of resignation and passivity toward the overwhelming and complex difficulties of living with HIV was expressed in the interviews. The devastating impact of HIV on the participants’ lives as well as the feelings of loneliness were portrayed in their narratives.
Isolation From Family and Friends
Isolation from family and friends as a consequence of being diagnosed with HIV (e.g., depressed mood, fear of rejection, loneliness) was mentioned by a few participants. Some of the participants preferred to be alone and did not discuss anything related to HIV with others: My life changed a lot, I do not want to go out . . . only I go out to see the doctors, but I do not go to other places . . . I may go to the pharmacy but I do not have social life, I am always at home. Not because I am afraid that someone can talk to me [about HIV] or I should tell them. I do not need to say anything, but I do not have that desire anymore. (Mary) I am getting worse, if someone visits my house, I feel bad, I hide myself, I go to my room and I go out only when I go to the house porch, nothing else . . . I do not have friends. (Liza)
Nondisclosure
Other women did not disclose their HIV status in order to avoid burden on their family: A little bit, a little bit. I got a little bit depressed. As I said, because of my children, not for something else. I do not think I will tell them [family], they will notice later somewhere else, [for example] if one day we go to the hospital and they tell them. Why should I tell them? Why should I mortify them? No. I have one in the army, I can’t . . . no, no they won’t know. (Debby) Um, it was hard for me to share with my family, you know. And like I said, again, it was depressing. Very, very depressing because I’m a lesbian. And I didn’t—and—and the way I contracted the disease was through a blood transfusion, so it was double hard for me, the concept—the concept of having HIV. (Cathy)
Some participants felt sad because they were not able to share their feelings completely and needed to avoid disclosing their HIV status: So, now I’ve got to not only deal with HIV, I got to deal with depression, too. Because being HIV positive, it can send you in a state of depression, you know, because it’s like why me? Why’d this happen to me? Like, you know, like, why not you? You know I had to come to some conclusion, like why not you? You know, maybe I could take it for the good, or I could take it for the bad, you know. I’d rather not share my status with anyone. . . . (Cathy)
Theme II. Threats to Health and Well-Being
Participants recognized that HIV is a disease that not only threatens their physical and psychological well-being but also affects their social life and their capacity to work, which may generate socioeconomic problems. In addition, participants in their narratives described psychological issues such as loss of interest and motivation, depressed mood, weakness, nervousness, tiredness, and appetite disturbances.
Physical and Psychological Well-Being, and Economic Challenges of Living With HIV
Participants recognized that HIV’s psychosocial issues impaired their quality of life and prevented them from having a meaningful and productive life. As a consequence, some participants felt uncertainty about the future, nervousness, and overall weakness to the extent they could not work: Well, my life after being diagnosed was not easy, it was very hard. When they told me I did not want to believe, eh, I spent my life well—I even got sick with nerves, I took a lot of depression, I cried a lot, I did not look for it—I did not find an exit, eh, I was working, with what I worked, I felt bad; and I was several years without attending to me until I could not any longer . . . until I began to feel my body no longer, ehm, was weakening, I was very weak. (Bernice)
Those who had to leave the workforce and received disability benefits subsequently struggled with financial burdens. In some cases, family members depended on them financially. For these participants, the inability to work was a major life change: I had to leave work because I fell into a depression and as I did not seek help in time it weakened me a lot . . . and I had to take it and I was disabled at 40 years old, so I cannot maintain my family. (Teresa) And when they told me that [I have HIV] I mentally fell down, I could not do it anymore, that was very strong for me. I could not work anymore, I got into such a big depression that I went down like 40 pounds or 50 . . . I did not eat. (Clarissa)
Difficulty accepting the idea of living with HIV produces loss of interest, loss of motivation, and can impede daily functioning: Accept that I cannot be the person I want—that I wanted to be; sports, running, keeping me pretty, skinny, because I have the feeling that I am falling down . . . I get depressed, when I see that already— . . . I have to eat, I cannot say I’m going to put me on a diet because I cannot afford to say that and be skinny . . . or I can’t say I’ll exercise to keep me in shape, because if I exercise a lot I get tired. . . . (Eloise)
Theme III. HIV as a Death Sentence
Some participants felt that having HIV is like confronting death. Even though antiretroviral therapy has transformed HIV infection from a progressive and typically fatal infection to a chronic disease, the fear of dying continues to be part of participants’ lives. Some of the psychosocial impact manifested by women in this theme were sadness and fear of “the possibility of death.”
Sense of Impending Doom
The impact of living with HIV was reflected in the participants’ statements about their personal experience with the virus. Women also described the devastating impact of HIV, particularly when they see others dying because of the virus: You’re always going to think about it [HIV], “Oh, when is it I’m going to die—” When? You know, that’s the main thing, when. But now, I just live with it. (Rose) It’s sad. It’s a sad thing to think about it because, you know, one day it’s going to happen [death] eventually to anybody. But when you know you are sick already, you think that it’s going to happen sooner to you because you have HIV. (Lynda) Watching people die. You know, I had, um, a sibling to also die with the complications of from having HIV to AIDS diagnosis and where there was nothing, nobody could do. And I’m just—I—I watched him deteriorate, so that was scary, you know. (Cathy)
Theme IV. Spirituality
For most of the participants, the presence of God was an important aspect in their lives that helped them manage their HIV illness. In this study, all the participants indicated that they belonged to a specific religion and had faith in God. The faith in God may be seen as a coping mechanism for serious life events such as having HIV, which helped participants cope with psychosocial distress.
Belief in God
Belief in God was mentioned by the majority of the participants as a vital component of dealing with HIV in their lives. For them, God determines what happens in their lives, providing the energy to withstand HIV and helping them engage in positive behaviors. Believing in God provided participants a source of guidance that promoted healthy behaviors: So, I thank God that I—you know, I persevered and stuck with it and hung in there. And know that it is—you know, it is life after a disease [HIV]. You can make it so. (Felicia) I told God, He better show up and shout out. I’m depending on You . . . so when they—the doctor came and said, how you doing? I say, I’m excellent. And that was God talking through that doctor. And I see a lot of people struggling with HIV because they’re not worshipping with the heavenly Father. (Claudette) If you don’t breathe, if you don’t have sex, you don’t breathe. But I’m still here. How I’m able to do it, I don’t know how, I’m still here. I don’t know, based on what they said, but I have it [HIV]. And-, and-, and another thing is that what keeps me strong in doing it, is that I reaffirmed my faith, my, um, my, um, belief system in God. I’m Bap-, Baptist. (Armine)
Theme V. HIV Treatment Adherence
Participants reported various factors affecting their decision process related to HIV treatment adherence. Some women valued receiving HIV treatment, which helped them overcome various psychosocial issues such as depressive symptoms and achieve an overall feeling of well-being.
Using Antiretroviral Treatment
For some participants, treatment adherence gave them new hope in life. It helped them confront their depressive symptoms, as they gained the understanding that HIV could be managed as a chronic illness: Take that medication [HIV] like you suck up that beer and you won’t have no problem. All that depression and all that stuff, it’ll go away. You can function. You can go to laundry mat. You can go get groceries. You can go shopping. You can travel. You can do almost anything you want. (Claudette) I started taking the [HIV] medicines and when I started taking the medicines I seemed to change fast and this, and I started, I started to get hungry and said to my daughter, God, but what a change! (Rosalia) And I felt better because I felt like dying. I was already in a bed, but when I took the medicines and I saw how it works, and I began to drink, to drink, and I have been to this day punctually taking my medicine. I do not fail with my medicine because if I do not take the medicine, I feel bad. (Antonia)
Discussion
The results of this study are congruent with the literature on people living with HIV, as they show that this group significantly suffers a psychosocial impact as a consequence of living with HIV (Logie et al., 2013). Women described psychosocial distress related to living with HIV by verbalizing issues such as depressed mood, isolation, economic challenges, stigma, loss of interest, fear of death, sense of impending doom, among others. These women also verbalized how these issues affected their overall functioning and quality of life. Eventually, some of these women found strength through their belief in God and realized that by adhering to the treatment for their new medical condition, their body and mind experienced some degree of healing.
The aging process itself has been linked to increasing social isolation from family and friends and to depressive symptoms as individuals grow older (Whitehead et al., 2014). Moreover, our participants had to confront being diagnosed with a chronic illness. Women in this study verbalized that their positive HIV serostatus increased their isolation and loneliness. In addition, they did not feel comfortable disclosing that they are living with HIV to friends or family for multiple reasons as discussed, which increased their isolation. In prior studies, social support has been found to be a significant protective factor against isolation, loneliness, and negative mood among minority older women living with HIV (De Oliveira et al., 2019). Thus, meaningful individual and group/community activities should be encouraged and promoted among minority older women living with HIV in order to decrease psychosocial issues affecting them.
Threats to health and well-being were also mentioned during the interviews with our participants. Although it is known that chronic illness can elicit psychosocial distress, older people dealing with HIV usually have been battling the illness for many years, which makes the psychosocial impact of HIV more significant and more difficult to deal with (Heckman et al., 2017). As the symptoms become more severe and, in many cases, comorbidities become more prevalent, minority older women living with HIV feel the burden of physical, psychological, and social distress, which in turn affects life satisfaction and treatment adherence (Milanini et al., 2017).
Somatic symptoms (e.g., lack of energy, weakness, changes in appetite, and fatigue) were also mentioned by participants during the interviews. These symptoms that have also been noted in other samples of elderly patients with HIV (Zuniga et al., 2016). Though it is difficult to determine if these complaints are associated with aging, the HIV-related disease process, treatment, or psychological ailments, it is essential to further explore and address them accordingly, as they can hinder follow-up and retention in care (Zuniga et al., 2016).
Health care providers should pay attention to symptoms of psychosocial distress that older minority women living with HIV may be confronting. It will be important to complete an early screening for depression or other symptoms of psychosocial distress, which represent a threat for these women. Interprofessional collaboration may be a useful approach to manage the psychosocial impact of HIV and to improve well-being of older minority women living with the virus. Primary care providers should facilitate referrals to mental health providers for those patients exhibiting symptoms of psychosocial distress. Bringing on-site mental health services where patients receive their HIV treatment could be a viable strategy to offer comprehensive health services in community health centers.
Some of our participants explained that they and their loved ones were extremely fearful and thought that receiving an HIV diagnosis was similar to having a death sentence. Given that most of the minority older women living with HIV interviewed were relatively young when initially diagnosed, they had the unfortunate experience of seeing many of their friends and loved ones die from the disease. This fear of death caused anxiety, which in turn could have exacerbated their psychosocial distress.
The role of religion and spirituality has been highlighted in prior studies among older people living with HIV in the United States and abroad (Emlet et al., 2018; Moura da Cruz et al., 2017; Soares Nery et al., 2018). These studies corroborate evidence from our own study, as many of the women in our sample emphasized the importance of religion and spirituality. The belief in a “higher power” makes those suffering feel loved, cared for, and accepted. It also fosters resilience, which allows them to overcome negative moods related to their HIV positive diagnosis (Emlet et al., 2018). Women from our sample were no different. They seemed to experience similar feelings and attitudes toward getting better with the help of “God.” Many women reported hearing the voice of “God” and felt steered to improve their health behaviors through “God’s” guidance. This suggests that religious guidance and finding inner spirituality may be an effective coping mechanism to prevent and reduce psychosocial distress in minority older women living with HIV (Conner et al., 2010).
Participants from this study reported that adherence to HIV medication made them feel better and reduced depressive symptoms. They also expressed that taking their medication allowed them to return to their former daily routine, giving them the opportunity to move on with life. Prior studies have revealed that negative mood and nonadherence to HIV treatment are highly correlated (Gonzalez et al., 2011; Magidson et al., 2015). Therefore, health care providers should emphasize adherence to treatment during every encounter with minority older women living with HIV.
Limitations and Strengths
This study targeted a subgroup of minority older women living with HIV who reside in South Florida; therefore, the findings cannot be transferred to minority older women living with HIV who live elsewhere in the state of Florida or the United States. Participants received the HIV diagnosis years ago, which may have affected their memories about the specific experience. The findings of this study contribute to the development of an intervention to screen and manage psychosocial impact of minority older women living with HIV.
Implications
Health care providers need to increase their awareness when working with this population to screen for psychosocial issues. Prompt and proper referrals should be facilitated in order to engage patients in appropriate treatment and referral early on (De Oliveira et al., 2019). Given the burden that aging and HIV impose on minority older women living with HIV, future studies should consider the findings from this study in designing and implementing specific interventions to screen early and manage psychosocial distress in this population.
It is important to acknowledge that one of the major limitations of interventions targeting psychosocial issues among older minority women is the lack of details on the cultural translation, cultural competency, and the sociocultural adaptations necessary to support these women (Camacho et al., 2018; Fuentes & Aranda, 2012). This situation is more complicated in the case of minority older women living with HIV because they are rarely addressed in HIV prevention interventions and their concerns are often missed (Durvasula, 2014). In addition, future studies should consider the life experiences of these women, their coping mechanisms, and their personal and cultural perceptions of psychosocial issues. Therefore, there is a need for rapid implementation of a culturally tailored, holistic, low-cost, multistrategy intervention to prevent the psychosocial impact of HIV among minority older women living with HIV (Anderson et al., 2015; Peragallo Montano et al., 2018).
Moreover, group therapies can be highly beneficial among minority older women living with HIV, as common experiences can be shared with other HIV positive or HIV negative women, which will help to foster resilience, improve coping skills (e.g., social support and religion/spirituality), and provide protective factors against psychosocial distress (De Oliveira, 2019; Wheeler, 2014).
Stigma associated with being HIV positive was reported by several participants. In order to address this, supportive strategies may include educational sessions for the patient’s family members, close friends, and partners about HIV prevention strategies and current treatments. These strategies could foster a culture of support from individuals that are part of the lives of older minority women with HIV.
Additionally, social/environmental issues constitute a group of risk factors that may lead to depression (American Psychiatric Association, 2013). The conditions into which people are born, grow, work, and live affect mental health among minorities (De Oliveira et al., 2017). Aging with HIV may make these women susceptible to experiencing more significant depressive symptoms and psychosocial issues. Longitudinal quantitative studies could assess the effects that social determinants have on HIV treatment compliance, which ultimately affect this particular population.
Conclusion
Findings from the proposed study reveal that minority older women living with HIV are a vulnerable population greatly affected by psychosocial issues and health disparities and are traditionally underrepresented in clinical trials and in receiving health care. Consequently, and after analyzing the common themes from our sample, it is evident that minority older women living with HIV may benefit from community-based interventions and group support. The problem is complex, but a comprehensive, interdisciplinary approach is needed in order to address the psychosocial impact of HIV in this group. Integrative care models that blend primary care, infectious disease, social support, and mental health are also crucial to tackle the complexity of the care required by minority older women with HIV.
Footnotes
Author Roles
RC conceived the study and determined the methodology and took the lead in writing and organizing the entire manuscript. CT, NV, GD, and RC collected data for the primary study. RC, GD, and NV wrote the methodology, and results. RC, GD, NPM, and ASM wrote the discussion and conclusions. SS, MS, HS wrote the background and organized all references in-text and list. All authors reviewed the final manuscript before submitting for publication.
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 work was supported by the Robert Wood Johnson Foundation #71968.
