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Published in final edited form as: AIDS Care. 2022 Apr 25;35(3):359–365. doi: 10.1080/09540121.2022.2068494

“Is it Worth Living?” Psychosocial Challenges of Childhood Sexual Abuse Survivors Aging with HIV

Mackenzie J Hart 1,2, Monique J Brown 2,3,4,5, Sayward E Harrison 1,2, Chigozie A Nkwonta 3, Titilayo James 2,3, Amandeep Kaur 2,3
PMCID: PMC9592683  NIHMSID: NIHMS1803598  PMID: 35468013

Abstract

Older adults living with HIV (OALH) undergo challenges such as comorbidities, social isolation, and ‘double stigma’ associated with their HIV and aging statuses. Simultaneously, research has shown that experiences of childhood sexual abuse (CSA) continue to impact the quality of life across the lifespan and may pose unique hardships for older adults. Despite the high prevalence of trauma among people living with HIV, research examining the psychosocial challenges of OALH with a CSA history is scant. To address this gap in the literature, this study aimed to explore psychosocial challenges among OALH who are CSA survivors using a qualitative approach. Twenty-four in-depth, semi-structured interviews were completed with OALH (age 50 years and older) who reported histories of CSA. Multiple coders and an inductive coding process were employed for data analysis. Four main themes regarding psychosocial challenges emerged from the analysis: 1) depression and suicidal ideation, 2) fear and anxiety, 3) social support issues, and 4) memory issues. The authors discuss the implications of these findings and the importance of trauma-informed treatment for these individuals.

Keywords: older adults, HIV, childhood sexual abuse, psychosocial, trauma

Introduction

People living with HIV face complex health-related challenges. For example, they must take antiretroviral therapy (ART) to achieve suppression and prevent transmission to others (Bavinton et al., 2018; Cohen et al., 2016), and they may experience short- and long-term side effects (e.g., diarrhea, loss of bone density; Montessori et al., 2004; NIH, 2019). Scientists have also studied the psychosocial experiences of individuals living with HIV, as these factors affect medical outcomes (Deeks et al., 2013). Depression, housing stability, and social support, for example, have previously been linked with ART adherence (Magidson et al., 2015; Mi et al., 2020).

As widespread uptake of ART has extended life expectancies (Bhochhibhoya et al., 2020; Nakagawa et al., 2013), the population of older adults living with HIV (OALH) is growing. However, compared to advances in understanding the biomedical aspects of aging with HIV, knowledge about psychosocial aspects of aging with HIV and the influence of early life events on later outcomes for OALH is lacking. Increased life expectancy may be accompanied by health-related and psychological challenges at different stages of life (Mitchell et al., 2004).

Moreover, the relationship between HIV status and psychosocial stressors can be complicated by a history of trauma (Remien & Mellins, 2007). Trauma is common among people living with HIV: 60% of adolescents and young adults with HIV report childhood physical abuse (Kidman et al., 2018), and an estimated 40% of women living with HIV are survivors of childhood sexual abuse (CSA; Machtinger et al., 2012). Experiencing CSA is a risk factor for many deleterious outcomes, including mental health disorders (e.g., depression, substance use disorders), medical conditions (e.g., autoimmune disorders, obesity, pain), and social repercussions—many of which leave lasting effects (Irish et al., 2010; Wilson, 2009).

Exposure to CSA may present unique challenges for OALH. Consequences of surviving CSA include hesitance trusting others later in life (Romano et al., 2019) and relationship challenges (Brown et al., 2021). At the same time, finding social support is a challenge for many OALH due to concerns surrounding HIV status disclosure and high levels of HIV-related stigma (O’Connell et al., 2015); these challenges may be compounded for individuals with histories of CSA. Moreover, there may be treatment-related considerations due to CSA, such as medication use and/or psychotherapy (Johnson et al., 2019; Olley et al., 2017), comorbid substance use (Chander et al., 2006; Fletcher, 2020) and maladaptive coping behaviors that need addressing in an integrated care plan for OALH.

A recent systematic review highlights the lack of psychosocial interventions for OALH despite the challenges encountered by this population (Bhochhibhoya et al., 2020). Other research describes data on the CSA/HIV intersection as “sparse” and theorizes the lack of research is due to the sensitive/stigmatized nature of CSA (Brown et al., 2021). Indeed, while there is growing recognition of the importance of trauma-informed care for OALH (Brezing et al., 2015), to the best of our knowledge, there has not yet been a study investigating psychosocial functioning of OALH who are survivors of CSA and unique stressors that they may experience. Understanding the psychosocial challenges among this population is necessary to develop appropriate and effective treatments, and is the goal of the present study. We used qualitative methodology to query OALH who are CSA survivors regarding psychosocial challenges to better understand if and how HIV status and CSA intersect at later stages of life.

Methods

Sample

We recruited OALH from a comprehensive immunology center in the Southeast U.S.—a region with a high burden of HIV-related morbidity and mortality (Brown et al., 2019; CDC, 2020). Participant inclusion criteria included: 1) 50 years of age or older, 2) self-reported history of CSA, 3) diagnosed with HIV, and 4) lack of severe cognitive impairment. Information about the study was shared through paper flyers and word of mouth (e.g., discussions with staff). Interested patients scheduled an appointment with research staff to learn about the study, review and provide informed consent, and complete the study interview. Participants were offered a $20 gift card in appreciation of their time, which was not believed to undermine consent (Groth, 2010; Largent et al., 2012).

The period of recruitment and data collection spanned five months, from October 2019 to February 2020. The study sample consisted of 24 adults aged 50 to 67 years. For qualitative interviews, data saturation can occur within 12 interviews with primary themes arising as early as six interviews (Guest et al., 2006). Of participants, 50% were cisgender men (n=12), 46% were cisgender women (n=11), and 4% were transgender women (n=1). Participants primarily identified as Black (67%, n=16) or white (25%, n=6), with three participants identifying as another ethnicity (i.e., American Indian/Alaska Native, Latinx/Hispanic, Native Hawaiian/Pacific Islander). Institutional Review Board approval from the University of South Carolina was obtained prior to initiating study activities.

Data Collection

Data collection employed in-depth, one-on-one, semi-structured interviews conducted in a private space at the immunology center or on campus where the research was based. Interviews were conducted in-person by research staff (TJ and AK) who received training in interviewing techniques and qualitative methods. All interviews were anonymized (i.e., assigned an ID number), audio-recorded, and transcribed.

Content questions were developed by a team including experts in epidemiology, public health, psychology (including child development and trauma), and sociology. Interview themes addressed overall health and life experiences as well as concerns related to HIV, such as ART adherence, coping, and social support. All participants were asked questions about the impacts of CSA (Do you think your experience with [CSA] impacts your living with HIV?). Because there is little standardization in how CSA is measured and queried across populations living with HIV (Brown et al., 2021), interviewers focused on open-ended questions and provided conversation prompts to elicit information (If you don’t mind talking about it, what happened? How does this experience affect you today?). On average, interviews lasted 31 minutes with times ranging from 16–62 minutes.

Data Analysis

Authors who served as interviewers independently assessed transcript accuracy, cross-checking audio recordings with transcripts and correcting errors. Next, four team members independently conducted inductive coding and thematic analysis (Creswell & Poth, 2016; Saldaña, 2015). In this process, researchers identified meaningful concepts in the transcripts without attending to predetermined codes (Kornbluh et al., 2021). Team members met weekly to discuss convergence and reconcile differences (e.g., inconsistencies or omissions) among codes (Lincoln & Guba, 1985), and managed discrepancies by discussing divergence and selecting an agreed-upon code as a team. The team then collapsed codes into themes and subthemes, per Consolidated Criteria for Reported Qualitative Research (Tong et al., 2007). This analysis process was used for all 24 interviews and spanned a 10-month period (i.e., February to December 2020). Given the approach employed, a full discussion of study findings is beyond the scope of this article; however, for an example of related projects from the same dataset (e.g., exploration of childhood sexual abuse experiences; intervention program needs), see James and colleagues (in press).

Results

The following four themes emerged from the data and describe psychosocial challenges among OALH who have a history of CSA: (a) depression and suicidal ideation, (b) fear and anxiety, (c) social support, and (d) memory issues.

Depression and Suicidal Ideation.

Depression emerged as a frequently cited psychosocial challenge, with many participants describing recurrent periods of depression over many years. Participants described how depression impacts their energy levels and overall well-being. Moreover, participants sometimes described feeling that life was not worth living and reported contemplating suicide. Depression, suicidal ideation, and feelings of hopelessness were not described as being solely due to CSA—participants also discussed their HIV status as a source of deep sadness. Regarding his history of CSA and current HIV status, a 52-year-old Black man shared:

“It will slow me down doing a lot of things I want to do, you know, mentally… Like I said, sometimes I get depressed. Sometimes I… [ask] myself, ‘You gonna have a breakdown and start crying?’…But I don’t want to be dead… I don’t want to be dead.”

Similarly, a 53-year-old Black man discussed challenges related to depression:

“Of course… I get moments of depression because of being HIV-positive. It has its psychological effects on me. I’m not often depressed about it, but I do get in my feelings about how long this virus has been out in the world and they still haven’t released a cure for it….”

A 60-year-old Black woman disclosed how her psychological challenges escalate to suicidal thoughts.

“…[I’ve been] thinking about--is it worth living? I got people in my life… you know, but I have contemplated in my head [to] just go ahead and commit suicide.”

Among CSA survivors living with HIV, the effects of depression can be consuming and widespread, as shown in the following quote from a 67-year-old Black woman:

“My mental health… Yeah, it’s not very good. I suffer with depression. [How I see] my life and the way I wanted my life to be. Sometimes I get depressed by this. Sometimes I look around my house and see how my [house]look… you know, I’m depressed.”

Fear and Anxiety.

Other psychosocial challenges cited included fear and anxiety. Participants described effects of their adverse childhood experiences, such as ongoing feelings of helplessness and vulnerability. These feelings manifested in a range of challenges and reactions, from apprehension about interacting with and trusting others, to panic attacks and other symptoms of panic disorder that interfered with daily functioning. Some experiences caused or overlapped with other psychosocial challenges, including feelings of depression, frustration, hopelessness, and shame. Other participants commented that fear and anxiety were primarily rooted in concerns about their HIV status or the current medical landscape, rather than due to CSA. A 52-year-old Black woman reflected on her history and how it affects her:

“[Following experiencing CSA], it seems like you [are] destined to fear everything else in life as you grow older, that’s what it seems like to me. And when people evade [helping] a child… that seems like there is no hope for the future.”

The same participant elaborated later in her interview:

“I’m too scared to go outside and communicate with people so right now I’m just alone. …[I’m] scared to go into the convenience store… That brings me down because I’m not able to do things like other people [are] doing, you know what I’m saying, that brings me down. …I know I’m not right because I’m scared, you know… I do, I live in fear every day.”

Sentiments of fear were echoed by a 51-year-old white transgender woman:

“It’s scary. I mean, the longer you live with HIV, the more you think, okay, am I going to develop AIDS now because I’ve had it for so long… it’s scary. It’s really scary.”

Lack of Social Support.

Another theme was feeling insufficient social support to combat or overcome difficulties, including lack of support from family members and friends. This experience was upsetting for participants; some identified the feelings of isolation and lack of support as a stressor. In some instances, participants emphasized the importance of self-reliance in overcoming loneliness, while others discussed less helpful coping responses (e.g., declining sources of social support when they were available). A 59-year-old Black man reflected on his situation, stating:

“[Other people] are somewhat supportive, [but not as] supportive as I would like… they have these hang-ups about gay, and they have… their own stigma that you didn’t choose this lifestyle correctly, like you decided you want to be this way, they don’t quite understand. Nobody chooses to be part of one [of the] most disliked or maybe hated minorities for people who don’t understand. They don’t understand me completely…”

A 52-year-old Black woman discussed other challenges related to lack of social support:

“I’m my support system, and God. …I got kids. I got a momma but she drinks too much, you can’t even talk to her. But kids they have definite lives, doing their own thing, they ain’t got time for me. …The only support system I have is when I go to meetings, go to groups. That’s about it.”

These feelings were shared by a 50-year-old Black woman:

“…I’m always the support system. I’m the one who gives people pep talks. I’m the one who gave people rise or try to help people.”

A 52-year-old Black man disclosed other challenges surrounding a lack of social support in his life:

“I always say I’m gonna come here and get in a support group, but I never did.”

Memory Issues.

The last theme identified was cognitive difficulties, particularly related to memory. Participants highlighted how forgetfulness caused them distress, both subjectively and in interacting with other people. These cognitive challenges may exacerbate other psychosocial stressors and/or impair individuals’ abilities to regularly obtain treatment. In the quote below, a 62-year-old Black woman described difficulties:

“I have a hard time trying to remember stuff. I have, like, sounds in my head… I have like four or five different sounds right now. And the only thing that bothers me about it is just, like, I have a hard time expressing myself. If you tell me something, do you know I have a hard time [remembering] it? I’m very forgetful. It’s kind of frustrating at times.

Similarly, a 54-year-old Black man discussed his experience with memory issues:

“That’s a problem… Somedays I’d be here, sometimes I don’t be here… [Sometimes I] forget things, sometimes I forget certain people.”

Discussion

Aging with HIV and a history of CSA have each been robustly associated with psychosocial challenges (Irish et al., 2010; Rueda et al., 2014). For example, both populations (i.e., CSA survivors and OALH) have increased risk of experiencing anxiety and depression in their lifetime (Catalan et al., 2017; Wilson et al., 2009). The current study sought to learn about psychosocial challenges faced by OALH who have a history of CSA. As findings indicate that these challenges may lead to significant impairment in daily life (e.g., agoraphobia, persistent negative mood, social isolation; Wakefield, 2007), this combination of risk factors may result in compounding or interacting symptom profiles that correspond with a high prevalence of mental health disorders.

Notably, some participants attributed challenges to aging with HIV or to having a history of CSA, or spoke in terms of general life stressors; most participants did not directly comment on the mutual effects of being an OALH survivor of CSA. Reporting patterns may be due to cognitive biases, such as hindsight bias and recency effect (e.g., experiences that are more recent seem more related to current challenges; Winters & Jeglic, 2016), and to overlapping symptomatology. However, attributions of psychosocial challenges among OALH who experienced CSA leave ample room for further study.

Although current findings are concerning, recognizing these challenges is prerequisite to creating, disseminating, and evaluating treatment programs designed to support this distinctively vulnerable population. One important treatment target may be individuals’ daily adherence to ART, which is critical for maintaining viral suppression (Arts & Hazuda, 2012). Adherence to ART can be negatively impacted by psychosocial factors, including comorbid depression and/or a history of CSA (Brown et al., 2019; Sikkema et al., 2008).

Additional research is needed to understand how other psychosocial factors identified herein (i.e., fear and anxiety, lack of social support, memory issues) impact ART adherence for OALH with histories of CSA. Understanding if and how these challenges impact ART adherence is necessary to develop effective treatment strategies. For example, employing home-based care or telemedicine could make aspects of treatment more accessible to individuals who fear leaving home. Similarly, given the high numbers of OALH who have histories of trauma, incorporating a group format for parts of treatment may be feasible and help combat feelings of social isolation.

In addition, it may be important to adapt treatment for OALH who have histories of CSA. A recent meta-analysis found improvements in depression and social support among OALH in the U.S. who received tailored psychosocial interventions (Bhochhibhoya et al., 2020). As such, adapting care to the mental health and stigma-related needs of this sub-population might improve quality of life outcomes. In practice, this could involve adjusting treatment protocols to include models of trauma-informed care, such as those that attend to adult manifestations of CSA (e.g., ACOG, 2011). Developing clinical guidelines for providers working with OALH who are also CSA survivors may further include trauma screenings and other types of adapted treatments.

Limitations

The present study is accompanied by a number of limitations, including that participants were all from the same geographic region. Given interactions between people and their environments (Cicchetti & Rogosch; 1996; Mitchell et al., 2004), findings from the current study may not represent all OALH. Further, this study recruited individuals already engaged in HIV care. These individuals may fare better than counterparts who are not engaged in HIV care/do not receive comprehensive, high-quality services. Future work should include perspectives of individuals who are not engaged in care to understand barriers to treatment and psychosocial challenges that affect subpopulations of OALH. Lastly, individuals from gender minority groups may have unique challenges.

These needs for additional inquiry ring truer during the COVID-19 pandemic, as data collection for this study was completed as the first case was recorded in the U.S. (January 2020; AJMC, 2021). As the pandemic’s progression and feelings of isolation were correlated (Pfefferbaum & North, 2020), this context adds another layer to clinical presentations and highlights a limitation of the present study. Lastly, some topics queried during interviews were sensitive in nature, and participants may have been hesitant to disclose experiences (Dunne et al., 2017). Future work is needed to expand on and replicate these findings in efforts to best understand and support this population.

Conclusion

Findings indicate OALH who have a history of CSA experience complex, diverse challenges, many of which hamper individuals’ quality of life and may complicate treatment adherence. This work suggests that interventions addressing psychosocial challenges are needed for CSA survivors aging with HIV. Programs should incorporate a trauma-informed approach and address challenges that occur while aging with HIV.

Declarations

Funding: The study was funded by the National Institute of Mental Health K01MH115794 awarded to MJB. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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