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. Author manuscript; available in PMC: 2023 Jul 1.
Published in final edited form as: Arch Sex Behav. 2022 Jun 8;51(5):2465–2472. doi: 10.1007/s10508-021-02277-1

A Qualitative Study of the Impact of HIV on Intimacy and Sexuality Among Older Childhood Sexual Abuse Survivors Living With HIV

Titilayo James 1, Chigozie Nkwonta 5, Amandeep Kaur 1, Mackenzie Hart 6, Monique J Brown 1,2,3,4
PMCID: PMC9308640  NIHMSID: NIHMS1794161  PMID: 35674853

Abstract

Childhood sexual abuse (CSA) is a traumatic event known to influence health outcomes, and the rate of CSA among people living with HIV is more than twice that of the general population. Individuals living with HIV with a history of CSA may find establishing intimacy and sexual relations more challenging due to the dual adverse impact of HIV and CSA. This study aimed to explore the impact of HIV on intimacy and sexuality among older CSA survivors living with HIV. We collected data from 24 older adults living with HIV (OALH) aged 50 and older with a history of CSA in South Carolina via in-depth, semi-structured, one-on-one interviews. We used a thematic analysis approach comprising discussion of initial thoughts and key concepts, identifying and reconciling codes, and naming emergent themes for analysis. Five themes emerged: rejection, avoidance, vulnerability, relationship with a partner living with HIV, and no or low sexual intimacy. Study participants reported that they desired to establish intimate relationships; however, living with HIV impacted their ability to do so, affecting their overall health and quality of life. Our findings suggest that addressing the intimacy and sexuality of older CSA survivors living with HIV is warranted in their continuum of care to improve their health outcomes and overall quality of life.

Keywords: intimacy, sexuality, older adults, HIV, CSA

INTRODUCTION

As a result of effective HIV treatment, about half (51%) of people living with HIV (PLWH) are age 50 and older (Centers for Disease Control & Prevention, 2020). Studies have associated childhood sexual abuse (CSA) with engaging in high-risk sexual behaviors, which predisposes survivors of CSA to HIV infection and transmission (Mimiaga et al., 2009; O’Leary et al., 2003; Zierler et al., 1991). Hence, there is a high prevalence of CSA among PLWH (Kalichman et al., 2002). Notably, a history of CSA is prevalent among sexual minorities, including men who have sex with men (MSM), who account for the majority of PLWH (Centers for Disease & Prevention, 2020; Mimiaga et al., 2009 ). Furthermore, CSA is a vital risk factor for multiple types of negative mental, health, behavioral, and social outcomes such as alcohol problems, substance abuse, suicide attempts, depression, marital issues, and family problems in older adults (Dube et al., 2005; Draper et al., 2008; Gagnon & Hersen, 2000; Kamiya et al., 2016; Sachs-Ericsson et al., 2011).

Several studies have shown that older adults have persistent desires for romantic partnerships and engage in sexual activities even as they age (Golub et al., 2010; Lindau et al., 2007; Lovejoy et al., 2008; Schick et al., 2010; Taylor et al.,2017). Intimate relationships and sexuality play a significant role in the health and quality of life of older adults (Ganong & Larson 2011; Skałacka & Gerymski 2019). However, some individuals, including health professionals, often disregard sexuality and intimate relationships when considering factors that impact the health and well-being of older adults ( Gewirtz-Meydan et al., 2020; Gott et al., 2004; Minichiello et al., 2011).

HIV causes disruption and restraint to the sexuality and intimacy of older adults living with HIV (OALH) compared to older adults living without HIV; the stigmatization of HIV affects intimate relationships and sexuality among this population (Nevedal & Sankar, 2016). Wallach and Brotman (2018) highlighted the several challenges with intimacy and sexuality among OALH, including HIV-related stigma, physical changes due to aging or HIV, physiological changes, reduced sexual desire, and difficulties with condom use. Furthermore, prior studies have shown that OALH who are black gay and bisexual men experience increased HIV-related stigma, further limiting their chances of engaging in intimate relationships (Haile et al., 2011; Nevedal & Sankar, 2016).

Likewise, adults who have experienced CSA were more likely to experience difficulty with intimacy and sexual dysfunctions than adults without a history of CSA. These include fear, guilt or shame during sex, issues of touch and sexual arousal, dissatisfaction with sex, low sexual desire, difficult or painful sexual intercourse, and multiple sexual partners associated with CSA (Easton et al., 2011; Leonard & Follette, 2002; Najman et al., 2005). Meston et al. (2006) observed that women with a history of CSA had higher levels of negative sexual consequences than women without a history of CSA, explained by their decreased romantic self-perception in addition to the depression and anxiety associated with CSA. Also, men who are CSA survivors tend to exhibit hypermasculine behaviors, including homophobic behaviors, violence, emotional detachment, and disruptive behaviors when compared with those without a history of CSA (McGuffey, 2008).

Consequently, individuals living with HIV with a history of CSA may find establishing intimacy and sexual relations more daunting due to the dual adverse impact of HIV and CSA on their health and quality of life. Invariably, this may make them more susceptible to poorer health outcomes than older adults living with HIV or CSA alone. To this end, it is essential to assess how HIV impacts intimacy and sexuality among older CSA survivors living with HIV. This type of study could provide a foundation for improving the awareness of the significance of intimate relationships and sexuality to this often-overlooked population, inform interventions, and influence policies related to their sexual health, thereby improving their overall health outcomes.

This study aimed to explore the experiences of older CSA survivors living with HIV regarding intimate relationships and sexuality and its impact on their overall health and quality of life. To the best of our knowledge, this is the first study to examine intimacy and sexuality among an HIV population of CSA survivors. In addition, we are also the first to include older adults who experienced CSA. We employed qualitative research methods to assess the effects of HIV on intimacy and sexuality among older CSA survivors living with HIV.

METHODS

Study Participants

Study participants were recruited from an immunology clinic in South Carolina via purposive sampling techniques. Eligibility criteria included a diagnosis of HIV/AIDS, ages 50 to 85 years, exposure to sexual abuse before age 18, and lack of severe cognitive impairment. Fifty-four (54) participants volunteered to participate in the study. Among these, twenty-four who met the eligibility criteria were recruited, which was adequate to reach data saturation in the study. The remaining thirty (30) participants were not eligible due to being younger than 50 years old or not experiencing or reporting CSA.

Data Collection

We conducted in-depth, semi-structured, one-on-one interviews at a scheduled time in a private room at either the immunology clinic or (held for review). The data collection process was conducted between five months, October 2019 – February 2020, by two authors (held for review) trained in qualitative interview techniques. The clinic staff helped with recruitment by informing potential study participants and pasting flyers within the clinic vicinity. We scheduled an appointment for anyone interested in the study for informed consent, screening, and the interview. Before the commencement of data collection, we presented interested participants with an invitation letter from the principal investigator (PI) detailing the purpose of the study. The study’s details and objectives were explained further to the participants to ensure they understood what they read, after which we obtained verbal consent. When verbal consent was obtained, we screened them for eligibility. We informed eligible participants that discussions were confidential, and they had the right to opt-out of the study at any time. In addition, we gave each participant a research identification number to ensure confidentiality and ease of analysis.

Research materials consisted of the screening instrument, sociodemographic questionnaire, and a standard qualitative interview guide which included open-ended questions and probes for all interviews. A multidisciplinary team with expertise in public health, sociology, HIV, and epidemiology worked to develop the qualitative interview questions. Experiences in older adults living with HIV, HIV interventions, and childhood sexual trauma informed the development of the interview questions. To explore the impact of HIV on intimacy and sexuality, questions asked included, How would you describe the impact of your status on your health and quality of life? How does getting older with HIV impact your mental health? How does getting older with HIV impact your physical health? What causes you to feel down? How would you describe your experience as you get older with HIV, and What are the other challenges you face as you get older living with HIV?

A sociodemographic assessment questionnaire was given to each participant to complete before the qualitative interview began. Discussions were centered around the qualitative interview guide questions though participants were encouraged to talk freely and openly about their experiences. Interviews were audio-recorded and scheduled to last for approximately one hour; however, most of the interviews took less time ranging from 16–62 minutes, with a mean time of 31 minutes. Upon completing the interview, we provided participants with a resource list, pointing out resources that participants may find meaningful based on responses and a $20 gift card as compensation for participating in the study (Brown et al., 2021). The Institutional Review Board of the (held for review) approved the study protocol.

Data Analysis

We used a thematic analytic approach for data analysis comprising discussion of initial thoughts and critical concepts, identifying and reconciling codes, and naming emergent themes (Saldaña, 2013). Verbatim transcription of the twenty-four interviews was carried out using Otter.ai software (Los Altos, CA). Data analysis began with two authors (held for review) independently reviewing and comparing the transcripts with the audio recording to ensure that they represented the participants’ statements as accurately as possible and correcting the errors to ensure methodological rigor. Coding was done manually using an inductive, semantic, and realist approach to thematic analysis by; identifying themes within the data based on surface meanings of the participants statements, slangs and nonverbal communication (Braun & Clarke, 2012; Maxwell, 2012). Four authors (held for review) carried out line by line coding of the transcribed interviews’, independently identifying significant or relevant phrases and words. Two analysts then used the transcripts for independent reading and to begin initial coding. They individually coded the interviews, identifying important or salient phrases and words. All the authors independently reviewed transcripts and developed the codebook following iterations of deductive and inductive coding (Hsieh & Shannon, 2005). A coding scheme was developed based on the identification of emergent issues and themes, which ultimately provided the framework for describing impact of HIV on intimacy and sexuality. Emergent themes were subsequently underlined in the transcribed text, with corresponding codes for these themes written in the margin. To improve inter-rater reliability, all the authors met regularly to review coded transcripts; compare the coding schemes developed by all the authors; to verify the coding system and make the necessary adjustments. Disagreements in description or assignment of codes were resolved by consensus among these four authors and led to the refinement of codes. The Consolidated Criteria for Reporting Qualitative Research steered the reporting of this study (Tong et al., 2007).

RESULTS

All those who participated in this study received HIV care at the immunology clinic, and they ranged in age between 50 and 67 years with a mean age of 58 years. Twelve participants were males, eleven were females, and one was transgender female. Of all the participants, 16 were African American, six were White, one was Native Hawaiian/Pacific Islander, one was American Indian/Alaska native, and one was Latinx/Hispanic. Twelve (12) participants identified as heterosexual, three as bisexual, and nine as gay/lesbian.

Study participants’ descriptions of how their HIV status impacted their intimate relationships and sexuality fell into five broad themes: rejection, avoidance, vulnerability, relationship with a partner living with HIV, and low sexual intimacy/sexual drive, which were interrelated. We describe these themes in additional detail below:

Rejection

Participants stated that they desired intimate relationships but experienced rejection while trying to establish intimate relationships, which impacted their health and quality of life. They talked about their past experiences of rejection or the fear of rejection due to HIV related stigma. They described their experiences as challenging, a struggle, hurtful and traumatic.

“I would definitely not want to be in or start a relationship with anyone without telling them that I’m positive, and in doing that over the years, yes, like a lot of guys, it’s been like, you know what, they can’t do it, you know, and this is a hurtful thing. Like when you’re really attracted to someone or would like to be with them, and they, you know, turn you down. Well, they like you at first until you tell them that you’re HIV positive; you know that they don’t want to deal with it. So yes, it is a very, very traumatic feeling to deal with… and I always used to think that, you know, I’ll never be with someone because I’m positive.” (52-year-old African American straight male)

“Being I’m single, [the impact] may be relationship-wise, you know… I mean people, I have [been] involved with somebody and I tell them [about my status] and the reaction [is] that you are like a failure with a stigma at first.” (50-year-old African American straight female)

“It’s still a stigma for me to try to tell people, still embarrassed about that. I think that’s why right now I’m not with anybody, because it’s so hard to find somebody that will accept that with the stigma that’s still out there…” (55-year-old White straight female)

“I mean, I do feel like if I meet a partner and I do want to develop relationship. I fear that they would not because of my status…” (51-year-old White lesbian, transgender female)

You know it is hard... you know to get in a relationship. It’s hard you know to open up and tell somebody your situation because a lot of the time peoples are not gonna accept [you]…” (67-year-old African American straight female)

I think it is a struggle. At least for me mentally, not knowing if I’m going to be single the rest of my life. if I’m going to be able to find somebody that will be able to accept the HIV positive status and a lot of my past, I have a very vivid past.” (55-year-old White straight female)

Avoidance

Despite their desire to establish sexual relationships, several participants indicated that they isolated themselves and avoided intimate relationships. Responses highlight that they avoided intimate relationships for several reasons, including not disclosing their HIV status to potential partners, past hurtful experiences, avoiding challenges from relationships, and the desire to remain truthful about their status.

Hmm [pause] right now [pause] I can’t be in a relationship; you know what I’m saying? Because [pause] you supposed to let somebody know, you know what I’m saying, so that kind of keep me away from women, you know what I’m saying, kind of keep me away from them, you know what I’m saying.” (52-year-old African American straight male)

“The only thing that bothered me is, say once I meet a guy, somebody I like, I have to tell them you know, what’s going on and that’s you know, I… I hate doing that…” (63-year-old African American straight female)

“I’m afraid I’ll come across somebody who [does not accept] somebody with HIV then we get a whole lot of problem. So, I stay to myself, and I won’t worry about it.” (52-year-old African American straight female)

“I’m a faithful woman, and I don’t generally go out and have sex and say, I’m gonna get mad at my boyfriend or cuz he done something and go out and have sex. No, I’m right there for him, so and that’s what makes me stick here with him because I don’t want to have to be getting into another relationship and have to keep on talking about I’m HIV to somebody, you know what I’m saying?” (53-year-old African American straight female)

Vulnerability

Study participants expressed various feelings of helplessness or vulnerability due to loneliness or being alone, inability to leave an intimate partner despite being disrespected and taken advantage of, difficulty dealing with HIV status, all of which impact their well-being and health.

“Last time, I think if I didn’t have HIV for one, if I didn’t have it and the loss of my mom and just being by myself, you know, being lonely by myself all the time, you know, not having anybody. I don’t have that many friends; I only have like one girlfriend; she’ll come to sit down and talk with me. And it bothered me because my sister and brother they got their life and they do things and here I [am], you know, by myself...” (63-year-old African American straight female)

“Lonely, I have nobody. I have a friend, been happy for three years, but we don’t sexualize, but sometimes he comes to the house, I don’t know how to tell him I am HIV ‘cuz you could either be accepted [or not]. Since I have other ways he could have helped me a lot, I definitely don’t want to lose a friendship, but it’s lonely.” (61-year-old African American straight female)

“What causes me to feel down is my boyfriend that I live with; he knows that I’m HIV positive. He accepts that I’m HIV positive, but his sense of authority on me because he knows that I don’t have the negligence to get jealous... Like thinking about another woman to make me possibly just go on a deep end. That’s what does me is just like because I’m so used to him, when he goes out the door I feel like a little baby, like my father’s leaving me, you know, and it makes me feel empty. And I don’t like feeling like that because before he moves inside the home, I was gradually a by-myself person, you know.” (53-year-old African American straight female)

Relationship With A Partner Living with HIV

Study participants in a relationship were in a relationship with partners living with HIV. They stated that the chances of finding a partner became slightly better if the other person was also living with HIV, and being in a relationship with someone living with HIV increases the likelihood of the relationship running more smoothly because of similar HIV status. Some also reported safe sexual practices by using condoms irrespective of their partners’ HIV status.

“I mean, and unfortunately, my wife, the mother[of my children], is HIV too. But as I say, our children are not. They made sure of that because of the medication she is taking [which is] the medication I’m taking.” (57-year-old Native Hawaiian/Pacific Islander bisexual male)

“So that [HIV] keep me away from women, you know what I’m saying, keep me away from them you know what I’m saying, but I do get it when I want it with one that’s already HIV positive, but I still use protection. You know what I’m saying.” (52-year-old African American gay male)

“That’s just the way I have sex with my number one person, I have [sex] with protection because you ain’t wonder what your viral [is], I don’t know what your thing is, and you don’t know what my thing is, so we don’t need to be mixing in two things”. (54-year-old African American gay male)

“For me, it depends on who I would be with; if it was somebody else positive, I think that it would go over a lot better. If it was somebody that actually understood, it might work. But for most of the population, I think right now it’s still nope; you have HIV, I don’t want to have anything to do with you” (55-year-old White straight female)

Low Or No Sexual Intimacy/Sexual Drive

Some participants suggested that they experienced no or low sexual intimacy and reduced sexual drive due to fear of infecting someone else and not disclosing their HIV status to others, which impacted their health and quality of life. Some mentioned that their lack of or limited sexual intimacy and low sexual drive was the only impact their HIV status had on their health and quality of life, and to them, it was a huge impact.

“I don’t have sex, which is a big impact. You know, because even though I’m undetectable, I don’t want to risk affecting anyone. So, it has had impacts on my sex, my sexual, you know, sex. I don’t let it [HIV] affect my life very much because, first of all, I’m not sexually active, so I don’t have to tell anyone that I have HIV” (51-year-old White lesbian, transgender female)

“The impact [of HIV] on it [physical health] was on my sex drive, just the ones I really wanted to go to bed with I couldn’t do it no more, you know the ones I had a drive for I just couldn’t, so that was my sexual impact. I just couldn’t get down.” (53-year-old African American straight female)

“I can’t say there is [an impact], apart from I mean, other than my sexual health I mean I make sure I, you know, make my partners aware of my status before I engage in sexual activities.” (51-year-old African American gay male)

DISCUSSION

The present study explored how HIV impacted the intimate relationships and sexuality of older CSA survivors living with HIV. Our findings support previous studies that found that older adults desire intimate relationships (Golub et al., 2010; Lindau et al., 2007; Lovejoy et al., 2008; Schick et al., 2010; Taylor et al., 2017). Some participants emphasized the challenges of establishing intimate relationships as the only impact living with HIV had on their health and quality of life. The findings from this study expand prior research on the intimate lives of OALH (Brennan et al., 2011; Nevedal & Sankar, 2016; Wallach & Brotman, 2018) by focusing on the impact of HIV on OALH who are CSA survivors.

Unlike findings on the impact of HIV on intimacy and sexuality on non-CSA OALH, we found that women in our sample experienced feelings of vulnerability whether they were in intimate relationships or not. These results highlight the long-term influence of childhood trauma on the intimate lives of OALH. Unresolved CSA has been linked with heightened vulnerabilities in later life (Gagnon & Hersen, 2000). In addition, men in our study were more involved in intimate relationships when compared to women in our sample, suggesting that the long term effects of CSA on intimate relationships may be more pronounced among women than men (Najman et al., 2005). Women who are CSA survivors were especially likely to stay away from intimate relationships because they were scared and wary of men (Roller et al., 2009).

Participant responses bring to the core the significance of stigma due to past experiences of rejection, fear of rejection and fear of disclosing their HIV status to potential intimate partners on the intimacy and sexuality of older CSA survivors living with HIV. Stigma cuts across all the themes mentioned earlier. For example, study participants did not involve themselves in intimate relationships to avert rejection. Some isolated themselves and avoided relationships due to fear of disclosure or to avoid stigmatization. These findings on the role stigma play in intimacy are in line with prior studies (Grodensky et al., 2015; Nevedal & Sankar, 2016; Psaros et al., 2012). Therefore, stigma is a significant factor to consider and address in developing and maintaining intimate relationships.

Participants also cited the fear of transmitting the virus for their lack or diminished sexual desire and sexual drive, which has important implications for clinicians and educators working with OALH. For example, to address this fear of infecting others, clinicians and educators working with older adults need to provide precise and up-to-date information on safer sex practices and options for HIV care like pre-exposure prophylaxis (PrEP) for their HIV-negative sexual partners. These types of knowledge will also educate them and make them confident to engage in sexual relations.

The findings from this study can inform the tailoring and development of public health programming working with OALH. Clinicians and healthcare providers must continue to address the stigma and symptoms of trauma in the care and management of older CSA survivors living with HIV. The inclusion of stigma-reduction programs and trauma-focused interventions that include interventions on reducing stigma to improve the sexual health of OALH, especially those with a history of CSA, is warranted to improve their sexual health outcomes. An example of such an evidence-based intervention is Living in the Face of Trauma (L. I. F. T.) for people living with HIV with a history of trauma (Sikkema et al., 2007, 2008). Even though this intervention does not focus on older adults, interventions for older adults who have been victims of CSA are warranted (Brown et al., 2021). Also, survivors of CSA may not be aware of the role and impact of CSA on their intimate lives and well-being. Therefore, these have implications for healthcare providers and clinicians who may need to screen for a history of CSA among OALH and assist them in making this connection.

Furthermore, OALH, who are CSA survivors, may require therapy, counseling, and trauma-informed interventions as this may enhance their healing process and address the challenges and barriers to engaging in intimate relationships (Saha et al., 2011). Understanding the needs of participants would help tailor their care and management according to personal needs. Clinicians and healthcare professionals should recommend counseling, therapy and trauma-informed interventions tailored to the specific needs of CSA survivors to improve the healing process and their overall quality of life. This study could also be significant for assisting policymakers in developing new strategies for promoting intimacy and healthy sexual relationships among older CSA survivors living with HIV. They can use the information gained in the study to create interventions to help reduce or eliminate some of the adverse consequences of living with HIV and CSA history.

The study has several limitations. We recruited study participants from a single immunology clinic in South Carolina, and therefore, our results may not represent the general US population. Despite the use of probes, the qualitative interviews were shorter than average, which may be due to the sensitive nature of the study. Thirdly, participants were willing to report their CSA experience and were also receiving HIV care. Therefore, these participants may not represent those PLWH who were unwilling to share their experience with trauma or are not receiving HIV care.

Despite these limitations, this study has several strengths. The qualitative study design is a significant strength of the study as it allowed for in-depth exploration of the phenomena of interest. Also, our sample was racially diverse, reflecting the racial distribution of populations living with HIV in South Carolina. Furthermore, this is also the only study that explores the impact of HIV on intimacy and sexual relationships among older CSA survivors living with HIV. Future studies should examine the differences in the effects of HIV on intimacy and sexuality by gender and sexuality among older CSA survivors living with HIV.

CONCLUSION

Our findings seek to fill a gap in the continuum of care of older adults living with HIV who are CSA survivors. This study highlights the adverse effects of HIV on the intimacy and sexuality of participants. The results of this study are valuable in understanding the barriers and challenges encountered by older CSA survivors living with HIV, which serve as deterrents to their pursuit of intimate relationships and how this impacts their health and well-being. For some study participants, the challenges of establishing intimacy and sexual relationships were the only impact HIV had on their health, suggesting that intimate relationships are vital to the study population. Therefore, it is essential for healthcare providers, clinicians and others who care for OALH to address CSA among this often-overlooked population.

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