Abstract
Background:
Compared with the general public, people with HIV (PWH) experience more psychological trauma and higher rates of post-traumatic stress disorder (PTSD), yet limited research explores how PWH may uniquely experience trauma. The primary goal of this study was to investigate trauma exposure typologies and sequelae among PWH to inform trauma screening and interventions.
Methods:
Qualitative interviews were conducted with a convenience sample of 20 PWH with PTSD, receiving services from an urban, Tennessee-based HIV Service Organization. Interview guides were conducted to gain a rich understanding of exposure types from the Life Events Checklist-5 (LEC-5), explore potential social determinants of trauma, and uncover effects of chronic trauma or traumata. Thematic content analysis was used to examine typologies and effects.
Results:
Exposure typologies appeared as social determinants of trauma, including molestation as the most common followed by racial trauma, community violence, incarceration, addiction, interpersonal violence, poverty cycles, and stigma. Standard PTSD symptoms were reported in addition to emerging effects of complexity, synergism, and resilience. Complex effects spanned socioecological contexts and included sequelae of affective dysregulation, negative self-concept/self-organization, and disturbances in relationships.
Conclusion:
Many typologies were not well accounted for in the LEC-5, underscoring the potential to miss exposure types and thus treatment indication. Similarly, effects expanded beyond standard PTSD symptoms, suggesting that nuanced treatment needs may also be overlooked. Findings are consistent with literature indicating the need for updated trauma screening and assessment measures to most comprehensively and accurately direct treatment needs.
Introduction
Psychological trauma is associated with various adverse health outcomes among people with HIV (PWH). 1 Trauma refers to lasting effects resulting from psychologically distressing experiences, with real or perceived threat of death or serious injury 2 (e.g., motor vehicle accident, assault, interpersonal violence, molestation). 3 PWH endure additional exposures related to seroconversion (e.g., diagnosis, stigma, perceived threat to life), 4 and many report HIV diagnosis as the most traumatic of all experiences. 5 Long thought to be the most symptomatic trauma disorder, post-traumatic stress disorder (PTSD) is characterized by oscillations between avoidant coping and intrusive re-experiences of stimuli, causing neurophysiological dysregulation and negative cognitions/mood. 2 Complex PTSD (C-PTSD), however, resulting from chronic trauma usually beginning in childhood, is associated with pervasive disturbances in identity, relationships and self-concept, impulse control, affect dysregulation, and emotional numbing.6–10 In total, greater trauma exposure leads to more profound and constant effects, requiring more intensive clinical treatment. 11
Stemming from an interplay of factors, trauma and HIV interact synergistically as a syndemic 12 contributing to higher rates of PTSD and an increased disease burden for PWH.4,13–20 Syndemic conditions overall are associated with lower adherence to HIV medication,12,20 with PTSD specifically increasing risk for disease transmission. 20 Global PTSD rates among PWH are around 28%, compared with 3.9% in general populations, with highest rates among PWH identifying as cisgender females, cisgender males who have sex with males, 18 and transgender individuals. 21
Although the HIV-trauma syndemic is well-documented, 12 there are limitations to the study and measurement of trauma that can prevent appropriate treatment for PWH. 18 Exposure tools do not adequately include social determinants of trauma (SDOTs), arising from environmental conditions influencing health (e.g., food security, housing stability, access to resources, racial trauma)22–25 ; thus, there is limited understanding of which sociocultural factors influence the development of PTSD among PWH. 19 This lack of sensitivity and specificity of exposure detection threatens the accuracy of trauma diagnostics among PWH 18 and increases the risk for missing referrals to needed care. 26 To our knowledge, no literature explores C-PTSD among PWH. Research is needed to inform the development of contemporaneous trauma measurement tools8,18 to enhance detection of traumata (i.e., cumulative trauma effects) among PWH.4,26
We sought to better understand traumata among PWH. An enhanced understanding of trauma exposures and effects among PWH could lead to more accurate screening and assessment tools and more robust treatment modalities, with stronger potential to disrupt the HIV-trauma syndemic.27,28
Methods
Study Population
We conducted a cross-sectional, qualitative study with a purposive sample of PWH who had participated in a parent study in which all participants were offered a resilience-focused intervention. 29 Inclusion criteria for the current study entailed that participants had a probable PTSD diagnosis (PTSD Checklist 5 [PCL-5], 30 ranging from 0 to 80, with a cutoff score ≥31). All participants were 18 years or older and actively receiving services from an HIV Service Organization (HSO) in Nashville, Tennessee, between May 2020 and November 2021.
Study Procedures
A racially diverse clinical team of HSO personnel (three Black and three White), trained as trauma-specialized licensed master social workers, developed a semistructured interview guide (Appendix I) via four 2-h workgroup meetings to: (1) explore open-ended happened to me items from the Life Events Checklist 5 (LEC-5)8,31 most predictive of PTSD in the parent study; (2) explore SDOTs such as racial trauma and discrimination; and (3) understand effects of traumata along socioecological contexts of health (e.g., physiological, psychological, social/interpersonal, and/or spiritual). 32
All participants from the parent study, with a probable PTSD diagnosis, were invited to participate during routine HSO appointments. Interviews, lasting 30–60 min, were conducted by phone (due to COVID-19 mandates), with data entered into Excel in real time by interviewers, as a patient-centered strategy for handling sensitive qualitative data.33–37 All participants underwent informed consent processes, provided consent, and received $25 Visa gift cards for completing interviews. Ethics approval was obtained from the Vanderbilt University Human Protection Program (protocol #171596).
Statistical Analysis
Quantitative results were reviewed from the parent study for the LEC-5 and the PCL-5. Q-Q plots were generated to inspect data normalcy, with mean used for normally distributed data and median otherwise. Qualitative analytical methods followed an inductive–deductive approach using thematic content analysis. 38 An a priori sample size of 20 was sought to determine data saturation. Two cycles of initial coding were conducted, allowing themes to emerge de novo, with two investigators (L.L.B. and A.J.A.) conducting coding by entering data into Excel.38,39 First cycle codes were organized as descriptions of each LEC-5 item explored. Coders discussed the first item together, and then individually coded the remaining items. Codes were reviewed during second cycle coding, with discrepancies discussed and saturation determined. From here, social determinant typologies 22 and C-PTSD effects emerged as deductive frameworks7,40 applied during the third cycle coding. A codebook of themes was created by separating codes into exposures and effects. Data were then reorganized by participant to gain an understanding of clinical presentation. Theme descriptions were then refined until 100% consensus was reached. The codebook was discussed with a third investigator (L.C.P.) before the final fourth cycle coding.
Results
Characteristics of the Study Population
Among 20 PWH enrolled, 10 (50%) identified as cisgender male, nine as cisgender female (40%), and one as transgender female (5%); most (80%) cisgender males identified as same-gender loving; most (n = 14, 70%) as Black and six (30%) White, ages from 40 to 65 years (median = 52; interquartile range = 42–61). LEC-5 scores were approximately normally distributed, with a mean of nine events (SD = 1.65). Physical assault was most common (n = 19, 95%), followed by assault with a weapon (n = 18, 90%), sexual assault (n = 16, 80%), other unwanted sexual experiences (n = 15, 75%), other stressful experiences (n = 13, 65%), severe human suffering (n = 12, 60%, and serious injury/harm/death you caused to someone else (n = 6, 30%). PCL-5 scores were approximately normally distributed, with a mean score of 53.16 (SD = 15.63).
Identified Exposure Typologies as SDOTs
Trauma typologies emerged as SDOTs, with the most common typology as molestation (i.e., sexual assault in childhood), followed by racial trauma, poverty cycles, stigma, addiction, interpersonal violence, incarceration, and community violence. All (n = 20, 100%) participants experienced ≥1 of the emerging SDOT typologies, with a mean of 3.3 (SD = 1.01). Table 1 includes descriptions and examples of typologies.
Themes and Example Quotes Depicting Social Determinants of Trauma
Childhood molestation was the primary theme describing other unwanted sexual experiences and severe human suffering, discussed by more than half (n = 11, 55%) of the participants. These experiences were described as watershed events initiating lifelong cycles of damaging relationships (e.g., violence, mistrust, assault during sex work), exacerbated by parents/family or legal systems not intervening. Long-term difficulty trusting others and perceived “unbreakable cycles” of polyvictimization were connected with incest.
… molestation takes away your childhood. I was between 6–8 years old, and the perpetrator was a “friend’ of the family. Additionally, as an adult in relationships, partners can rape you and that doesn’t make it not rape. -White cisgender female, age 40
Racial trauma had three subthemes—ubiquitous and perpetual, perpetrated by authority figures, and minimization/intersectionality—between Black (n = 10, 71%) and White (n = 4, 67%) participants. When White participants described these experiences, examples indicated attention to intersectional minority status (e.g., sexual orientation, HIV, or gender identity).
The area that I live in has been discriminatory. I have never experienced it until now. You can tell they hate me because I’m white. They have looked at me in complete hate. […] I think also me disclosing my HIV factor is a factor. That has been brought in arguments. -White cisgender female, age 40
When Black participants described these experiences, 8/10 (80%) labeled them as “traumatizing,” and 9/10 (90%) identified that recent local or national racial violence had exacerbated mental health symptoms. Perpetration by authority figures was connected to lost financial opportunities and long-term impacts on livelihood.
Racism will never go nowhere. It will always be here. […] It is taught by people who raised children. […] The police we used to look up to are now killing us. You can’t deal with them anymore or you may end up in a body bag. -Black cisgender female, age 53
Community violence was endorsed by 10 (50%) participants and connected to ongoing stress that impaired one’s sense of safety.
I have seen people get killed before. It’s nothing around here. It’s common, and I’ve been seeing it since I was a child […] I thought it was okay because that’s all I knew. -Black cisgender female, age 40
Incarceration was endorsed by seven (35%) participants and connected to multifactorial traumatic experiences, including inhumane or unfair treatment by legal system personnel, and worsened health or missed opportunities.
When my mother was sick, I was not able to go see her in the hospital. Then she died. They denied me going to the funeral. […] It just hurt me so much. I wanted to react and hurt people. […] I can’t even describe it to you. […] I’ve been at the breaking point many times. […] It all just traumatized me. It was affecting my health, my blood pressure, my nerves. -Black cisgender male, age 57
Addiction was endorsed by 13 (65%) participants and focused specifically on substance use by one’s self or the impact of family members’ use during developmental ages.
I caused a lot of harm to my family. I was dealing and using drugs. I […] caught a charge I didn’t deserve. That really affected my family. It hurt them to see me do that and spend so much time in prison. People who love and care about me suffered. -Black cisgender male, age 57
Interpersonal violence was endorsed by 13 (65%) participants, often as cyclical in families of origin and continuing through adulthood with romantic partners and family.
The physical abuse I witnessed between my father and mother, and now I carry around the sense that a woman should never be hit period, and I don’t hit anybody in an argument, I will always take the hit. -White cisgender male, age 43
Poverty cycles were endorsed by five (25%) participants and connected to contagion for further traumatic experiences (e.g., addiction, coupled with other behaviors such as sex work).
Just living a life of being a homeless drug addict on the street can be a stressful experience. I never want to go through that again. That was the worst out of all the things I’ve experienced. Black cisgender female, age 49
Stigma was endorsed by four (20%) related to HIV and/or felony status, with the former seen as a primary contributor to loneliness due to family estrangement/abandonment or challenges with romantic relationships.
After gaining the HIV, I still feel traumatized and feel triggered every time I take the medications. -Black cisgender female, age 50
Identified Trauma Effects
Trauma effects included standard PTSD symptoms (e.g., avoidance, intrusive thoughts) in addition to the three emerging effects as follows: complex, synergistic, and resilience. Complex effects spanned socioecological contexts, aligning with C-PTSD sequelae of affective dysregulation, negative self-concept/self-organization, and disturbances in relationships.6,7 Table 2 presents these themes with sample quotes.
Themes and Additional Sample Quotes Depicting Trauma Effects Among PWH
Psychological effects included the following four categories: (1) Disturbances in self-concept, such as lowered self-efficacy/sense of devaluation primarily following molestation; (2) Impulsivity, presenting as irritability that easily shifts to volatility, impairing relationships, and leading to involvement with legal systems; (3) Affect dysregulation, presenting as avolition, depression, dissociative periods, and lability; and (4) Emotional numbing, via maladaptive coping (e.g., substance use).
“… It [molestation and adult sexual assault: polyvictimization] makes you feel devalued and that [is] what you are only good for.” -White cisgender female, age 40
Interpersonal effects were most commonly connected to childhood molestation, appearing as disturbances in adult relationships (e.g., Intimate Partner Violence [IPV], inability to trust) and withdrawal despite a recognized need for social ties for coping.
I don’t trust people a lot. And I don’t trust myself around them. […] It makes me introverted, sheltered and stay around my house. I don’t do well in public. I don’t do well when case managers change—people change. […] I open myself up, and then I got to shut down and open up again. I don’t like opening up my wounds over and over again. -Black cisgender female, age 49
Physiological effects were direct—poor psychological health connected to chronic health conditions—and indirect—negative health consequences of maladaptive coping, such as substance use, or psychological sequelae, including avolition/“giving up” or losing motivation to care for one’s self (e.g., abstaining from life-saving medications or food/drink, engaging in risky behaviors).
It put a spike on a drinking spree I went on for about 3 years to deal with things. I used the alcohol to ease the anger. So yeah, my physical health suffered during that time. I took dumb risks and chances that I didn’t need to. Worked myself to death and hurt my body in a lot of ways. Not paying attention to my health, and I lost my leg. -Black cisgender male, age 65
Spiritual effects were often described by participants as questioning religious faith or contemplating suicide but also as finding resilience and inner strength through a sense of faith or spiritual beliefs that combated negative thoughts.
It affected everything. It affects me feeling like there is a God sometimes. I just don’t know what to believe. -White cisgender male, age 64
Synergistic effects were observed with most participants, stemming from chronic exposures as contagions for subsequent trauma. Intergenerational effects were noted, often related to molestation.
It [traumata] affects my life and my kids’ lives. […] I wouldn’t leave the house. I was paranoid […] that someone would try to kill me or hurt me. […] I still don’t let my kid go stay at peoples’ houses. I don’t like big crowds—I can’t be around a whole lot of people. -Black cisgender female, age 40
Finally, Resilience was reported by a large portion of participants as developed from overcoming adversity or managing challenges by leveraging resources (e.g., psychological attributes of tenacity, sustaining beliefs from spirituality/faith, or interpersonal resources from HSO staff and family/friends) or through the sharing of lived experiences, which fostered pride and altruism.
People helped me—they saw the good in me. They gave me a chance, and I took that chance. […] hearing these guys talking positively and boosting me up, I took heed. -Black cisgender male, age 57
Discussion
Study findings contribute to a growing body of knowledge on trauma exposures and effects. Novel contributions include the study setting (i.e., HSOs are less represented in HIV literature), 41 rich descriptions of SDOTs among PWH, and observed C-PTSD symptomology. Contextualization is provided for findings and recommendations made for future research.
We observed high rates of all exposures and far-reaching, complex, and synergistic effects. Compared with a large general sample of trauma-exposed people, 42 almost double reported severe human suffering in our study (60% vs. 31.6%) as well as serious harm to someone else (30% vs. 16.9%). About a quarter more reported other unwanted sexual experiences (75% vs. 48.5%) and other stressful experiences (65% vs. 40.4%). While we did not ask about molestation experiences explicitly, more than half of the participants (55%) reported it, far higher than general samples of males (6%), females (16%), 43 or other PWH with similar sociodemographic makeup (∼37%). 44 Overall, observed trauma effects were complex and synergistic but also found to foster resilience. Observed lifelong impairments among participants align with literature showing that childhood adversity contributes to numerous comorbidities, 45 including worse HIV outcomes,14,20 maladaptive coping mechanisms, increased odds of further trauma, 26 and C-PTSD. 46
These findings have several implications. First, the connection between molestation and adult comorbidities,26,45 including HIV,13,44 is well-established, but the inclusion of C-PTSD has often been overlooked. 26 Explicit detection of molestation may enhance HIV prevention and treatment.27,28 Second, certain LEC-5 typologies have been associated with different trauma disorders (PTSD vs. C-PTSD) (e.g., 47 sexual trauma correlates with emotion dysregulation and suicide attempts, and assault correlates with substance use disorder).8,15,18,47 Thus, limits to the scope or accuracy of screening tools could impede the recognition of some exposures or increase the likelihood for inappropriate treatment modalities. Third, the LEC-5 was chosen as a gold standard instrument, but it was not developed to identify experiences that may be unique to PWH8,15,18,48 and contains vague language/descriptions (e.g., “severe human suffering”) that should be further validated among PWH. Fourth, our findings on SDOTs support past literature on SDOTs and underscore the utility of integrating SDOTs into screening tools. In summary, results suggest need to refine trauma measurement and diagnostic tools to yield more accurate results to enable more expeditious referrals to tailored treatment.49–51
Observed SDOT typologies are supported by literature 15 , 18 ,52–62 and include molestation, racial trauma, community violence, incarceration, addiction, interpersonal violence, poverty cycles, and stigma. These exposures have not generally been included in other trauma exposure scales63–65 and should be explored and validated in future research. Finally, greater efforts should be taken to focus on HSOs as an understudied setting for which PWH may feel comfortable addressing traumata. 29
Limitations
Results cannot be generalized beyond the current dataset of purposively sampled PWH and PTSD in the southern United States, with a median age of 52 years, comparatively older than the majority of PWH in the United States. Trauma typologies and effects explored were not exhaustive but instead focused on exploring experiences presenting as relevant to the parent study. Diagnostic assessments were limited to the PCL-5 and PTSD, which precluded some germane sequelae (e.g., dissociation, which is strongly associated with C-PTSD). 8 Finally, the phone format and in vivo note-taking may have led to data loss. Replication of this study is needed in younger samples, in other regions, using broader inclusion criteria, and exploring other sequelae. Future studies should more pointedly explore the various forms of resilience PWH have fostered in light of the overall trauma burden.
Conclusion
Descriptions of previously undefined trauma exposures and effects were explored among PWH and PTSD in the underresearched HSO setting. Results are consistent with a growing body of literature suggesting a need for updating trauma measurement tools. Findings provide a deeper understanding of how some PWH with PTSD experience complex symptomology, highlighting the potential benefit of trauma-informed HIV care. Future research can build on these findings by exploring the validity of the emerging trauma typologies and incorporating C-PTSD assessment into protocols.
Footnotes
Acknowledgments
The authors acknowledge the study participants who shared their very personal, difficult, and inspiring experiences with them as well as the trauma specialist team providing trauma stewardship. Finally, they also thank Dr. Sandra Bloom for her time reviewing this article and encouraging their work.
Authors’ Contributions
Ethics approval was provided by Meharry Medical College. There are no competing interests. The following authors contributed as follows: L.L.B. and L.P. oversaw funding acquisition; L.L.B. conceptualized the article, designed the methodology, oversaw project administration, conducted data curation, and wrote the first draft; L.L.B. also supervised the research team, validation of results, and the review and editing of the article. Formal analysis was conducted by L.L.B. and A.J.A. The following authors oversaw article visualization relative to tables: L.L.B., A.J.A., M.L.W., A.C.P., and L.C.P. edited the tables. L.L.B., A.J.A., A.O., L.B.W., C.M.A., M.L.W., J.M.S., S.V.H., J.F., A.C.P., and L.C.P. edited the drafts and approved the final version.
Author Disclosure Statement
No competing financial interests exist.
Funding Information
The authors thank the following funding agencies who supported their work: (1) Program to Enhance Collaborative and Interdisciplinary Research with the University of Memphis and Meharry Medical College, and (2) Tennessee Center for AIDS Research (P30AI110527). L.B. acknowledges salary support from K01MH131471-01A1.
Appendix
Appendix I. Interview Guide
| Domain: Unwanted sexual experiences | ➣ One of the questions we asked was if you had personally experienced sexual assault or “other unwanted sexual experiences.” the preliminary results of our trauma study suggest experiences of sexual assault in general were not predictors of post-traumatic stress disorder, but “other unwanted sexual experiences were.” We are interested to learn more about what the clients of—may have experienced as unwanted sexual experiences. |
| Domain: Severe human suffering | We also asked people if they had experienced “severe human suffering” and found that people who said they had experienced “severe human suffering” were 2.5 times more at risk for PTSD than those who had not experienced severe human suffering. If you answered “yes” that you had experienced severe human suffering, could you describe those experiences? |
| ➣Could you describe those experiences—how you have suffered and what you think might help you to improve this suffering? | |
| ➣ Can you describe how you have suffered? | |
| ➣ And what do you think might help you to improve this suffering? | |
| Domain: Harm to someone else | ➣ Another question we asked about was “Serious injury/harm/death you caused someone else.” Our preliminary results show people who answered “yes” to this were more than 5 times more likely to meet the diagnosis for PTSD. If you answered yes to this item, would you be comfortable to tell us more about your experience. |
| Domain: Other stressful life experiences | We asked about many different types of traumatic experiences. You may remember some of the questions. As a reminder, we asked if people had personally experienced a natural disaster, fire, accident at work or home, sexual assault, life-threatening illness or serious injury, motor vehicle accidents, physical assault with and without a weapon, and a few others. Though we covered a lot of different types of experiences, many people said they had “Other stressful life experiences” that were not included in this list, and “other stressful life experiences” were also connected with post-traumatic stress disorder. |
| ➣Can you think about what “other stressful life experience(s)” you may have had. If so, can you describe some of these “other” types of stressful life experiences? | |
| Domain: Effects of traumata | As part of our trauma program, when we first asked you about your experiences, we asked about many different types of potentially traumatic experiences. After doing statistical testing we found that clients who participated in the program had experienced an average of 5 or more traumatic experiences in their lifetime. We also found that people who had experienced multiple traumatic experiences had an increased risk for PTSD. If you have experienced multiple traumatic life events, could you tell me how those experiences have impacted your life? |
| ➣Do you think working with our trauma team helped improve any of the difficulties you were experiencing? Did you experience any changes as a result of working with a trauma specialist at CARES? | |
| Racial/Ethnic Discrimination Item 6: We also found that many people said they had experienced discrimination related to their race or ethnicity. Some of the questions we asked included perceived discrimination at work, school, or in public places with police or security guards. We would like to ask you a few questions about any racial or ethnic discrimination you may have experienced. This may be a difficult topic for many to discuss right now, given what has been happening throughout our country. Please let me know if you would like a break while we are talking. ➣ First, can you tell us, generally, about any discrimination you may have experienced as a result of your race or ethnicity? | |
| Given that you have gone through our trauma program you probably have a good amount of knowledge about what trauma is and how it sometimes affects someone’s health [you have a strong understanding of what we mean by “trauma”], I would like to ask how any experiences of racial/ethnic discrimination may have been traumatizing for you. Specifically, we would like to better understand how these experiences have impacted your ability to take care of yourself emotionally/psychologically, physically, spiritually, and so forth. | |
| o Emotionally/psychologically: | |
| o Physically overall and with HIV: | |
| o Spiritually: | |
| Finally, in light of the recent events in the world, in our country, and specifically in our city, I want to ask you how have you been impacted by the recent tornado, COVID-19 pandemic, and racial violence? Specifically, have any of these events impacted your overall health?…starting first with |
