A Transdiagnostic Treatment to Improve Biomedical and Syndemic Outcomes in People Living With HIV

Abstract

People living with HIV (PLWH) experience a range of co-occurring psychosocial stressors, mental health symptoms, and structural barriers (e.g., “syndemics”) that can impair their ability to adhere to medical recommendations for treatment. This has consequences for their health and the health of others as nonadherence increases the likelihood of unsuppressed HIV viral load, and therefore the ability to transmit HIV to others. Transdiagnostic treatment, or treatment not focused on a single mental health condition, can efficiently address a range of mental health problems by skills training to reduce symptoms. Additionally, cognitive behavioral and problem-solving approaches can be used to address larger, structural factors by helping individuals navigate systemic challenges using evidence-based skills. This article describes the development of a transdiagnostic treatment for PLWH and illustrates the application of the treatment through case examples. This treatment might be appropriate for integration into an HIV clinic or within an outpatient setting when working with a patient who is experiencing syndemic conditions and living with HIV.

Behavioral health concerns, such as mental health and substance use disorders, are disproportionally prevalent among people living with HIV (PLWH) and interfere with antiretroviral (ART) adherence and viral suppression (Blashill et al., 2015; Bucek et al., 2018; Harkness et al., 2018; Mizuno et al., 2015; Sullivan et al., 2015). Left untreated, these problems likely undermine individual-based and public-health prevention and treatment programs. Despite the potency and increased tolerability of current antiretroviral treatment for HIV (which in most cases is an oral medication taken once daily), many individuals experience difficulties with adherence to daily medication, and, as a result, do not attain viral suppression (Nachega et al., 2014). Viral suppression (undetectable or below minimum levels) is beneficial both for the individual due to enhanced immune functioning and their sexual and drug-using partners as individuals who are virally suppressed are not able to transmit HIV to their sexual partners (Cohen et al., 2011).

The United Nation’s 90–90-90 goals aimed to have 90% of individuals living with HIV aware of their diagnosis, 90% of those linked to clinical care, and 90% of those virally suppressed by 2020, which unfortunately was not achieved (UN AIDS, 2014). Since then, these goals have been revised and are now 95–95-95 goals by 2030 (UN AIDS, 2021). We are still very far from reaching that goal internationally or within the U.S. Nationally, approximately 65.5% of those in care are reaching viral suppression with significant socioeconomic, racial, and ethnic disparities (“AHEAD American’s HIV Epidemic Analysis Dashboard,” 2021). The reasons for this are varied and complicated, but can be best described as being attributable to structural, social, and psychological factors that contribute to disproportionate barriers to viral suppression for certain segments of the population (Blashill et al., 2015; Sullivan et al., 2015).

The combination of these factors (e.g., behavioral health, poverty, violence, homelessness) that affect people living with HIV are often referred to as synergistic epidemics or “syndemics” (Pellowski et al., 2013; Singer et al., 2017; Singer & Clair, 2003). The United Nations has set a new goal of ending the HIV epidemic globally by 2030 (UN AIDS, 2021), with a particular focus on reducing inequalities among people and communities affected by HIV; however, in order to achieve these goals it will be necessary to address the range of syndemics affecting people living with HIV, including psychosocial, interpersonal, and structural, to facilitate increased rates of viral suppression and improved health outcomes (Abas & O’Cleirigh, 2018).

Prior studies have demonstrated the efficacy of cognitive behavioral therapy (CBT)-based interventions for medication adherence in PLWH (Safren et al., 1999) and for combined approaches addressing different behavioral health problems in the context of promoting adherence, such as with PLWH with depression (Safren et al., 2016, 2009), PLWH with injection drug use histories (Safren et al., 2012), and PLWH with trauma and posttraumatic stress (Dale & Safren, 2018). These CBT and medical adherence interventions have been tested in a variety of settings with various types of interventionists, including nurse-delivered CBT in HIV clinics in South Africa (Andersen et al., 2018; Safren et al., 2021), China (Simoni et al., 2011, 2015), the U.S. Mexico-Border (Simoni et al., 2013), and Zimbabwe (Abas et al., 2018). These trials have consistently shown that addressing emotional disorders and substance use while addressing HIV medication adherence improves both psychosocial and biological outcomes.

The trials referenced above have generally focused on one specific behavioral health problem (e.g., depression, substance use) and integrate treating that problem with adherence counseling. Yet, in most of those trials, participants experienced multiple psychiatric comorbidities and not just the condition on which the trial was focused. There is therefore a need to examine approaches that address a variety of presenting psychiatric problems simultaneously to potentially optimize treatment effects within these clinical trials and in “real world” contexts in which clients’ presenting concerns must be addressed simultaneously.

Our intervention is an individual, behavioral treatment, but it purposely takes into consideration and addresses (with skills) other factors, including poverty, homelessness, incarceration, education access, racial and LGBTQ-related discrimination, that also affect people living with HIV at higher rates than the general population. Although individual treatment cannot fully address the numerous structural challenges PLWH encounter, the use of problem-solving and assertiveness combined with validating the challenges of their lived experience can be an effective way to address issues in a way that empowers the client to advocate for themselves. This may involve planning safer walking routes to avoid harassment or how to search for and find work with a felony record. While these societal issues are typically outside the scope of individual behavioral psychotherapy, they are critical to address in the context of behavioral treatment with PLWH and other marginalized populations. Discrimination and structural challenges increase psychosocial stress and “stress-sensitive” disorders, and are a direct impact on the development and maintenance of psychopathology. By addressing them within the context of psychotherapy, the therapist is able to both validate the challenges of clients’ experiences and offer skills to help mitigate the effects of these challenges.

Based on our approach with cognitive-behavioral therapy for adherence and depression in the studies referenced above (Safren et al., 2016, 2021, 2009), we recently demonstrated feasibility, acceptability, and a potential effect for a transdiagnostic approach to addressing syndemics among people living with HIV in the Miami area with individuals living with unsuppressed HIV (Safren et al., 2020). In this open trial (N = 27), people living with HIV were recruited from a public hospital HIV clinic. Participants were eligible if they had a recent sexually transmitted infection (indicated HIV risk) and/or had a detectable HIV plasma viral load (PVL). Outcomes were collected at baseline, 4 months, and 8 months and Log PVL improved baseline to 4 months (γ = - 1.13, 95% CI - 1.72, - 0.55, p < 0.001) and 8 months (γ = - 0.93, 95% CI - 1.57, - 0.30, p = 0.006). Negative affect declined during treatment (γ = - 0.28, 95% CI - 0.40, - 0.16, p < 0.001), with improvement at 4 months (γ = - 4.34, 95% CI - 6.99, - 1.69, p = 0.002) but not 8-month visit. There was no significant effect for positive affect during treatment (although a positive trend was observed); however, at 8 months there was significant improvement (γ = 3.84, 95% CI 0.33, 7.44, p = 0.04).

The use of a transdiagnostic treatment approach is consistent with the general movement in the field of evidence-based treatments to use interventions that can simultaneously address multiple comorbid conditions. For example, Barlow and colleagues have developed and tested the Unified Protocol (Barlow et al., 2004; Barlow et al., 2010; Barlow & Farchione, 2017; Ellard et al., 2010), which addresses transdiagnostic factors that contribute to psychopathology including identifying and addressing maladaptive cognitions, extinction learning through behavioral exposure, and addressing interoceptive cues of anxiety and distress. The Unified Protocol emphasizes decreasing emotional avoidance and increasing emotional awareness as well as engaging in avoidance-related behaviors or “emotion-driven behaviors” to manage emotional discomfort (Ellard et al., 2010). The Unified Protocol emphasizes that these core factors underlie several diagnostic categories and addressing them uniformly across patient symptom profiles can relieve many psychological symptoms across diagnostic categories (Barlow & Farchione, 2017). Therefore, the Unified Protocol suggests that all patients can receive the same treatment and benefit uniformly. Similarly, Norton and colleagues have suggested a unified approach across anxiety disorders can be helpful in addressing symptomatology and do so more efficiently than if diagnostic specific treatments were used sequentially for those who met multiple diagnostic categories, which improves the likelihood of dissemination and use in practice (Norton, 2012).

Alternatively, Chorpita and colleagues (2005) utilize a “modular” approach in which specific content and skills are matched to issues that are relevant to the client’s presenting concerns (Chorpita, 2007; Chorpita et al., 2005). In this way, there is one overall “treatment,” with modules that can be selected based on the intake assessment and presenting concerns, allowing the treatment to be “tailored” to the individual. This modular approach, when tested in treating depression, anxiety, and conduct problems in youth, was associated with steeper than typical improvements in clinical symptoms with standard treatment (Weisz, 2012). Both the unified and modular approach to transdiagnostic treatment can potentially be relevant to addressing psychosocial syndemics affecting PLWH, in that they can both target the multiple mental health and substance use concerns that interfere with overall well-being and optimal HIV-related health outcomes. Through formative work and iterative development (Harkness et al.,2020; Safren et al., 2020), we determined that a “one-size-fits-all” unified approach would not be feasible for the myriad of difficulties and diversity of clients with unsuppressed viral load. Therefore, we employed a modular approach, with various modules and worksheets available to match to clients’ presenting problems. The goal of this paper is to share our experiences in developing and field-testing this modular treatment, based in motivational interviewing (MI) and cognitive-behavioral therapy (CBT), to address syndemics and medication adherence among PLWH to promote optimal psychosocial and health outcomes.

Theoretical Approach

Our approach was based in a combination of MI and CBT (Naar & Safren, 2017). MI is a person-centered style of conversation that elicits a client’s own reason for engaging in behavioral change (Miller & Rollnick, 2012). When MI is combined with CBT, an action-oriented therapy with specific behavioral targets and goals, it can be a powerful means for achieving long-term behavioral change. Within the current protocol, we used a combined MI and CBT approach to revisit a client’s own reasons for change and link those reason to specific behavioral actions to improve psychosocial functioning and adherence to ART medication. The processes for the development of these modules and in-session materials are presented in this paper. We also provide deidentified and merged case examples of how specific modules and therapeutic skills were used to address psychosocial, interpersonal, and structural syndemics that interfered with patients’ engagement in HIV-related self-care and overall well-being. Accordingly, we tested a “package” of cognitive behavioral skills that we employed to treat people living with HIV with multiple and varied presenting concerns and difficulties with medication adherence.

Methods

Our first step was to gain additional insight into the multiple psychosocial syndemic problems that people living with HIV experience that might yield topics to address in the treatment. These topics were identified based on the feedback and exit interviews from participants in our prior trials, clinical knowledge, and feedback from a Community Advisory Board, and included: (1) medication adherence, (2) motivation for treatment, (3) planning meaningful activities/activity scheduling, (4) addressing repetitive negative thinking/cognitive restructuring, (5) problem solving, (6) relaxation training, (7) managing substance use, (8) coping with posttraumatic stress, (9) addressing substance use, (10) identifying and living consistently with values, and (11) relapse prevention.

Once the areas had been identified, we located sources that could be helpful in informing the structure of session materials. Sources referenced included prior HIV medication adherence and related interventions (Safren et al., 2016; Safren et al., 1999), substance use treatment related to HIV prevention (Mimiaga et al., 2012, 2018, 2019) and care (Parsons et al., 2007), cognitive processing therapy (Resick et al., 2016), our trial that integrated cognitive therapy for posttraumatic stress with HIV prevention (O’Cleirigh et al., 2019), and an intervention for youth living with HIV, which included values identification from acceptance and commitment therapy (Naar-King et al., 2009, 2006). To maximize engagement and intrinsic motivation for change, the general approach of delivering CBT was through a motivational interviewing style (Naar & Safren, 2017).

These materials were reviewed, condensed, and then synthesized into session content. To help facilitate ease of use in session, sessions were made into worksheets that therapists could then use to guide the treatment for that session. Intentional steps, including multiple rounds of review among therapists, the PI, and others, were taken to enhance readability and comprehension of session materials. Worksheets were printed in large font and presented with spacing to enhance readability. Worksheets also had visual depictions in the form of icons, images, and graphs to accompany words. All materials were written simply so they could be interpreted by individuals from varying educational backgrounds. This was done to help increase utility among a population with lower educational attainment and varied literacy levels, which is attributable to systems of inequity that also undergird the overall HIV syndemics leading to lower rates of viral suppression.

As stated above, our initial goal was to address psychosocial syndemics using a transdiagnostic approach: that is, all patients received the same treatment addressing core processes that drive psychosocial syndemics. However, we found that this was not feasible given the range of psychosocial concerns, as well as interpersonal and structural syndemic problems affecting clients’ lives. Based on our early clinical experience implementing this treatment, we modified the treatment to be delivered as a modular/worksheet approach, whereby all patients received “core modules” (e.g., addressing motivation, Life-Steps adherence counseling [Safren et al., 1999], learning the CBT treatment model), and additional modules were delivered based on patients’ presenting concerns and life circumstances. For instance, a patient with a significant trauma history would receive multiple sessions focused on integrating self-care/adherence with the posttraumatic stress module, whereas a patient whose interfering psychosocial syndemics were more related to stimulant use would receive more behavioral activation sessions, also integrated with self-care/adherence. This allowed us to use a transdiagnostic treatment approach, tailor treatment to patient needs and circumstances, and maintain the focus also on adherence/self-care. Specific attention was made to adapt materials so that they were culturally and locally meaningful. For example, we opted to not use the term “homework” as this may have negative associations with school and seem pejorative with a group of clients who had, on average, a high school education or lower. As such, the term “home practice” or even a softer suggestion of “maybe this week you can try the skill we talked about today” was used. Additional detail regarding the development and implementation of the treatment is described elsewhere (Harkness et al., 2020; Safren et al., 2020).

Description of Treatment Modules

Core Module: Life-Steps and MI to Enhance Treatment Engagement

This module is the original Life-Steps (Safren et al., 1999), which addresses potential barriers to optimal adherence to ART. Clients also identify their “reasons for change” or those things that ART adherence will help them achieve. Following an integrated MI style, the therapist revisits these reasons for change throughout treatment to remind the client of their commitment to this process (Naar & Safren, 2017). We use combined CBT and MI techniques throughout this initial module and all subsequent modules to elicit and reflect client’s own reasons for improving adherence.

Core Module: CBT Triangle/Rationale for Treatment

This module involves walking a client through a visual depiction of the cognitive behavioral triangle and having them identify thoughts, behaviors, and body feelings associated with various emotions in an interactive way. The therapist continues to elicit components that map onto the treatment rationale, and therefore presents this rationale throughout this discussion. The CBT skills are depicted as necessary to “break” the relationships between the arrows and redirect the path to improve emotional functioning, and therefore, adherence. Adherence and persistence to HIV treatment are prominent issues to include in the “behavioral” component of the rationale.

Behavioral Activation

The therapist interactively presents a rationale for why engaging in meaningful activities that target both pleasure and mastery are important for enhancing mood and adherence. The therapist asks the client to identify activities they could include in their lives. As current distress may interfere with a client’s ability to generate activities on their own, they are prompted using a Pleasant Activities List tailored to this client population. Clients are encouraged to implement these activities as well as track their mood during these activities in the following week for home practice. When clients return for their next session, they review their past week’s activities with their therapist and identify key activities that resulted in improved mood (e.g., spending time with family, exploring different neighborhoods, woodworking/crafts, taking a walk near the beach) and, using MI techniques, attempts to elicit intrinsic motivation to continue engaging in those activities. The conversation also turns to considering the way in which taking their medication can be an activity that also can lead to a sense of mastery and improved mood, as well as how medication can be paired with pleasurable activities, as well as scheduled around whatever activities are chosen. Part of the discussion can involve low mood as a barrier to adherence to HIV medication and how improving mood through engaging activities may be part of generally promoting positive mood and self-care.

Adaptive Thinking

This module involves basic cognitive restructuring. Accordingly, the therapist and client review the CBT model, talk about how thoughts are not “facts” but rather interpretations of the circumstances. Clients look over a list of common thinking errors (also referred to as “thinking traps” or “unhelpful thoughts”) and consider times they have experienced these. Strategies for addressing these unhelpful thoughts include Socratic questioning, gathering alternative evidence, and identifying cognitive errors or “thinking traps.” In some cases, clients might have a thought that is true but unhelpful (e.g., “A dating partner may not want to be with me when they learn I have HIV”). In these cases, the therapist and client evaluate the validity of the thought, helpfulness of this type of thought (e.g., ask “How helpful is it to hold this thought?”) and, if unhelpful, reevaluate and identify a more balanced and factual thought. Consideration to thoughts and beliefs about HIV, medications, or engagement in care are critical components for the specific population. The therapist asks about any negative thoughts about taking HIV medication, and these thoughts become targets for cognitive reappraisal (as something that can help them engage in a meaningful life).

Problem Solving

This module involves identifying a current problem the client is facing and then using the session to brainstorm and rank possible solutions to that problem. After a discussion of the pros and cons of each possible solution, the client and therapist agree on a solution identified in session for the client to try between sessions, and then report the outcome of these efforts during the next session. This module is useful for addressing problems at multiple levels, including interpersonal and structural issues. Importantly, a distinction is drawn between when to use problem solving to address an issue versus emotion focused coping skills (e.g. deep breathing, meditation). Note that the therapist is explicit about the fact that this specific problem is an example of how to use this general problem-solving technique, to increase the likelihood that the skill will be utilized in a variety of situations and not just the specific one being discussed. Building off Life-Steps, this module may involve how to specifically apply problem solving to concerns about HIV care (e.g., communicating with doctor), treatment management (e.g., attending appointments, obtaining and storing medication), or other HIV-related concerns (e.g., disclosure).

Relaxation Skills

This module includes deep breathing skills and a basic progressive muscle relaxation exercise, both of which therapist and client complete in session together. The client is also introduced to a range of other relaxation techniques including guided imagery. These skills are promoted as being generally helpful for maintaining mental well-being and for addressing physical sensations associated with changes in anxiety and mood. Sometimes this module is used with clients who do not meet criteria for a psychological disorder but might experience stress that would be helpful to try to control with relaxation procedures. Relaxation is presented as a tool to improve self-care generally and improve psychological well-being to optimize engagement in health including HIV care.

Substance Use

The substance use module is utilized for clients who present with problematic use of substances. It uses principles and techniques from a study addressing substance use in men who have sex with men living with HIV (Parsons et al., 2007). This module involves the presentation of a visual behavioral chain to understand the impact of the use of substances on mood, behavior, and subsequent use. Importantly, the therapist asks about links between using substances and then having negative feelings after. The discussion emphasizes this in relation to repeat or chronic substance use. The therapist also asks about and discusses the extent to which substance use interferes with optimal ART adherence for the client, and they come up with strategies for remembering to take ART even while using substances. Additionally, when needed, the substance use module addresses the concept of “lapse” vs. “relapse” and helping clients think about ways to prevent a lapse from becoming a relapse. While all the modules incorporate MI, this particular module is highly balanced between CBT skills delivered with an MI conversational style (Naar & Safren, 2017). Regardless of their goals around their substance use, clients are encouraged to continue to take their HIV medications as prescribed and develop specific plans (and increased self-efficacy) about how they would remember to take them consistently, even during periods of heavy use.

Posttraumatic Stress

The posttraumatic stress module drew from tenets and techniques from cognitive processing therapy (Resick et al., 2016) as a point of departure. The client and therapist discuss an overview of posttraumatic stress symptoms during the first session—reexperiencing symptoms, hyperarousal, feeling negatively about self and the world, and associated alterations in mood. The therapist asks the client which symptoms are familiar and how they are impacting their life. After presenting a rationale, the therapist asks the client to complete an “impact statement,” which explores how the trauma affected the individual (without having to provide details about the initial trauma). The impact statement includes prompts asking “why” the trauma occurred and how it has changed the way they see themselves and others. In the next session, client and therapist review the impact statement, together identifying unhelpful thoughts or “stuck points” about the traumatic experience. If the client does not complete the impact statement between sessions, client and therapist complete it during the session. Then, client and therapist talk through how these unhelpful thoughts form and how to begin to address them within the context of cognitive therapy—exploring how true and helpful thoughts are and the ways in which unhelpful thoughts might be contributing to some of the challenges they are experiencing in their lives. Specifically, traumatic experiences are often related to their experiences of HIV (e.g., sexual assault, violence, discrimination). Themes that are examined may include safety, trust, power, control, self-esteem, and intimacy. Therefore, part of addressing the distortion or “stuck point” is to try to help the client view HIV medication adherence as an act of trauma resilience and self-care.

Values Exploration

This module was adapted from Healthy Choices (Naar et al., 2006). A list of values (e.g., doing something for my community, learning new things, being a good friend) is presented to the client on small pieces of paper. The therapist presents each value and the client identifies them as not important, somewhat important, or very important. The “very important” values are then used to anchor the client in long-term goals related to ART adherence and help them plan for the future after treatment. An abbreviated values exploration is part of the first session to enhance motivation and identify reasons for taking ART. This session emphasizes a more in-depth exploration of values to guide future goals. This was especially helpful for younger clients who had developmentally appropriate questions and considerations related to meaning and purpose in life. Clients were encouraged to develop plans for a meaningful life that included HIV medication adherence and self-care to staying healthy so they could achieve their goals.

Therapists and Supervision

The treatment was delivered by therapists across levels of training: doctoral psychology students (3) , master’s-level clinician (1) , and a postdoctoral fellow (1). All therapists were supervised by a licensed psychologist with cognitive behavioral clinical expertise and HIV-specific expertise (SAS) and a licensed psychiatrist with clinical expertise in trauma treatment (GI).

Case Illustrations

Across the 27 participants in the field trial (Safren et al., 2020), each person experienced multiple and wide-ranging barriers to optimal adherence (i.e., psychosocial, interpersonal, and structural syndemic problems). The case illustrations below are meant to depict examples of the clinical interventions and how the modules were adapted for the emergent and existing syndemic concerns of the participants, as well as to depict, as examples, the unique complexity that every participant brought to the treatment. As illustrated below, each person’s life history and syndemic structural and mental health problems converged to increase the difficulty of adhering to the needed self-care behaviors to attain viral suppression, and dramatically affected overall quality of life. Note, to preserve confidentiality, various components of the client’s presentations were changed, but all examples come from actual clients in the trial.

Shayla, 50, Black, Cisgender Woman, Bisexual, Partnered

Shayla was a 50-year-old Black female who identified as bisexual and was partnered with a man. She had been living with HIV for 18 years and spent many of the last several years incarcerated. She lost custody of her daughter at a young age upon incarceration and reported feeling a loss of connection with family and friends resulting from stigma related to both her incarceration and HIV status. She had a trauma history significant for both sexual abuse as a child, sexual assault as an adult, and loss of her twin brother to a gang violence–related shooting, which she witnessed. She concealed her HIV status from her family due to shame and anticipated stigma and was concerned about how neighbors or acquaintances would feel about her if they discovered her HIV status. Treatment included the following modules:

Core Module: Life-Steps and MI to Enhance Treatment Engagement

Although she understood the benefits of taking HIV medication, Shayla had been living with depression and, as a result, had difficulty seeing the larger purpose in taking medication when she experienced frequent suicidal ideation and lack of interest in living. Through a conversation using an MI framework, the therapist drew out Shayla’s values, which were in turn used to help identify her motivations for taking medication and reasons for living. Shayla identified being closer to her family as an important value. She expressed a desire to feel well and to be able to attend family events. This interest was used to help her develop a purpose for taking medication that went beyond the immediate effects on her health. The Life-Steps intervention then proceeded with a plan and backup plan for the different components of adhering to medications, and the reminder of these values as part of the daily cues for taking pills.

Behavioral Activation

Shayla reported not engaging in many activities outside of attending her part-time job daily. Behavioral activation was used to identify enjoyable activities and to schedule more of them into her life. This module was tied back to her reasons for taking medication and the client started to schedule dinners with family, attend football games for her nephew, and plan time with her partner to fill her week with additional pleasurable activities. Activity scheduling and mood monitoring were used to realize the benefits of these efforts.

Posttraumatic Stress

The posttraumatic stress module was used to process her childhood sexual abuse history and her experiences with her sexuality and relationships as an adult. She processed feelings related to the circumstances that led to the abuse she experienced and its impact on trust, safety, intimacy, and self-esteem. While working on the impact statement, the therapist and Shayla identified “stuck points” in her thinking about herself and the world related to trauma (e.g., “I am disgusting and no one could ever love me,” “I am a bad person, which is why bad things happen to me” and “I am damaged/broken.”). In exploring where these thoughts originated and alternatives to these thoughts, Shayla was able to see that she had more resilience than she had been acknowledging. Rather than viewing herself as “damaged” by her experiences of sexual abuse, trauma, and loss, she began to view herself as a “survivor” of those experiences and view herself as someone deserving of positive things in her life, including taking care of her HIV health.

Cognitive Restructuring

Shayla had significant shame about living with HIV and was extremely concerned about disclosing her HIV status to others in her community. In addition to the cognitive work directly tied to the posttraumatic stress stuck points, the therapist also employed cognitive restructuring techniques to address negative thinking patterns she had about herself and the world that were related to the stigma she felt about living with HIV and fears around disclosure (e.g., “If people learned who I really was, no one would accept me”). While some of these fears were appraised as potentially accurate, Shayla was encouraged to think about those individuals in her life who already accepted her knowing about her HIV status, including her significant other. She started to navigate how to determine when and how to have a healthy disclosure of her HIV status, and through disclosing to a few close family members, Shayla learned that individuals did accept her and that her HIV did not change their existing relationship.

Problem Solving

Initially, Shayla reported challenges with taking daily medication because of her early-morning work schedule and nausea she experienced if she did not eat with her medication, which she rarely had time for on workdays. As an extension of Life-Steps, the therapist and Shalya worked on more general problem-solving skills. Through this, they identified additional ways to address these barriers and worked within her schedule. Shayla and the therapist generated a list of potential solutions: not taking the medication at all, taking it before leaving home, not eating breakfast and taking medication at home, eating breakfast and taking medication at home, not eating breakfast and taking medication in car on the way to work, eating breakfast and taking medication on the way to work, and choosing an alternate time (later in the day) to take medication. The therapist then asked Shayla to rank the solutions in terms of how useful she thought they were. Shayla then selected “eating breakfast and taking medication on the way to work” as the solution she wanted to try. The therapist asked about other steps to help make this plan successful, and they discussed solutions such as what types of small breakfast foods she could take, how she could do this in her car, and how she could make that time enjoyable. She ended up developing a routine around how to take her medication in the morning that involved her heating a breakfast sandwich before getting in the car, driving to work, and then enjoying her breakfast sandwich, orange juice, and taking her medication while watching the sunrise before walking into work. What was once the low point of her day or something she did not prioritize became an opportunity for a positive moment of self-care.

Kira, 19, Black, Cisgender Woman, Heterosexual, Partnered

Kira was a 19-year-old cisgender woman who had been living with HIV since she was 16. She learned of her HIV diagnosis when she was pregnant during her first prenatal visit. As a young mother and now someone managing a chronic illness, she encountered several barriers in managing her HIV care. The following modules guided her treatment:

Core Module: Life-Steps and MI to Enhance Treatment Engagement

Kira was relatively unfamiliar with the biology of HIV and how medication adherence helped to reduce viral load and improve her health. She found visual diagrams of how medication worked to be helpful and reflected on the utility of this information in understanding the purpose of taking medication. She had not felt “sick” from HIV, so the purpose of medication was not entirely clear to her prior to receiving this explanation. Through this module she became more informed on the benefits of taking medication and began to see how taking medication could improve her overall health and self-care.

Problem Solving

Kira lived far from the HIV clinic and had difficulties planning around attending clinic appointments and balance childcare for her son during these periods. Problem solving was used to help her generate solutions. Kira and the therapist collaboratively came up with multiple solutions that could be used to address these barriers, including: getting a ride from someone she knows with a car who could watch her son in the car and wait for her, taking a taxi or ride share and leaving her son with her mother-in-law, taking the bus and taking her son with her on the bus and into the appointment, taking the bus and leaving her son with her mother-in-law, taking the bus and leaving her son with a friend, and others. She then described the pros and cons of each potential solution, and finally, ranked the solutions from best to worst in terms of overall helpfulness in addressing the barriers to attending appointments. She decided that she would take the bus and have her mother-in-law watch her son. Because it was such a long trip and her other appointments were also in the same area of the city, she began stacking appointments for other health concerns on the same day as her HIV care appointments so she could limit her trips to reduce expenses as well as the burden on her mother-in-law of having to care for her son. By using problem solving with her therapist and planning for her HIV care visits, Kira experienced significantly less stress with upcoming appointments and had fewer cancelled appointments. After some success, it appeared that her self-efficacy regarding managing appointments also improved, and the therapist reflected this back to her throughout the sessions.

Behavioral Activation

Kira was isolated from friends and her own family and engaged in few activities that gave her a sense of pleasure or mastery at the beginning of treatment. Collaboratively with her therapist, Kira developed a list of activities that fit into her schedule that targeted both mastery and pleasure, including going to lunch with her girlfriends, going to the mall to browse, taking her son on a “field trip” to the zoo or park, reading books she enjoyed, taking a bath, and doing family members’ hair, which was something she previously enjoyed and liked learning how to improve her styling techniques. For a few weeks, Kira selected an activity and planned for doing it. She rated her mood before and after the activity and noticed how engaging in these activities improved her mood. She found that with an improved mood it also improved her parenting skills and her ability to care for herself, including taking her HIV medication.

Values Exploration

Kira had not had much time to develop a sense of self since she had been focused on raising her son and taking care of her health since her teen years. The values exploration activity was used to identify the importance of family, and especially her role as a mom as important to her overall sense of self. She and her therapist also chose activities (see behavioral activation above) that specifically aligned with these values, including going on field trips with her son or doing her family members’ hair. Kira was encouraged to see these values-aligned activities as an opportunity to further define herself as a person separate from her HIV diagnosis. The therapist also helped her see her HIV medication adherence as means to remain healthy to continue to care for and enjoy watching her son learn and grow.

Relaxation Skills

In session, Kira and her therapist practiced progressive muscle relaxation and guided imagery. Kira immediately noticed a benefit to these techniques and was eager to try them at home. She was encouraged to use them when upset or right before bed to help her unwind in the evening. She found these little moments to be easy to work into her schedule and extremely valuable in helping her manage her responsibilities as a mom or moments when she was feeling overwhelmed by external events. Kira and her therapist discussed the importance of additional stress management skills to helping her stay healthy and engage in HIV self-care.

Felix, 38, Cisgender, Man, Gay, Single

Felix was a 38-year-old cisgender gay man who was diagnosed with HIV in his mid-30s, during which time he started using crystal methamphetamine during casual sexual partnerships and acquired HIV during that time. When he presented for treatment, he was using methamphetamine daily and perceived it to be useful for “getting started” with the day, often finding himself with low energy in the morning. In the earlier years of his diagnosis, and before he started using methamphetamine, he had high ART adherence. As his use increased, he was laid off from his job, and his ART adherence and engagement in care became more intermittent. As such, he presented to treatment with a detectable viral load, which he was disappointed with after being suppressed earlier in his course of care. Treatment was guided by the following modules:

Core Module: Life-Steps and MI to Enhance Treatment Engagement

Within the Life-Steps module, Felix identified his methamphetamine use as a factor that interfered with his medication adherence. However, he was ambivalent about reducing his meth use. His therapist used MI to elicit his motivations for reducing his substance use, which included cost (particularly in the context of recent job loss and fears of losing his housing), wanting to find a partner, and to be healthier. These life goals were used to elicit motivation for taking his HIV medication more frequently.

Behavioral Activation

Following initial adherence counseling and an introduction to the overall treatment model, the therapist introduced the behavioral activation module to facilitate Felix’s exploration of how his daily substance use was impacting his daily activities, and to identify opportunities for increased engagement in activities associated with pleasure and mastery, particularly in light of his recent job loss. Through an initial session focused on behavioral activation, Felix identified that despite feeling like methamphetamine his helped him to get his day started, he was not engaging in activities he enjoyed or that gave him a sense of mastery throughout the day. Similarly, he shared with his therapist that 3–4 nights a week he used methamphetamine in the context of sex with casual partners. He reported that casual sex did align with his value of sexual pleasure but did not align with his value of finding a relationship. The therapist worked with Felix to develop a list of pleasurable/mastery activities that were aligned with his goals, which included joining an LGBTQ social group, spending time with friends who did not use, and applying for jobs to improve his financial stability and provide a daily structure to his life. They also discussed daily activities that he could pair his medication with (taking a shower in the morning). Treatment focused on helping Felix track his behaviors and gradually increase his daily behaviors that were aligned with his values and goals. The therapist and Felix observed that as his mood improved his motivation for self-care, including taking HIV medication, also increased.

Problem Solving

As treatment progressed and Felix increasingly incorporated pleasurable- and mastery-related activities into his daily life (using the behavioral activation module across several sessions), he also sometimes encountered problems in implementing behavioral activation in his daily life. For example, he found that it was harder than expected to build and restore relationships with friends who did not use substances. To address these problems, the problem-solving module was used to help Felix generate potential solutions (e.g., joining a support group for men living with HIV at a local LGBTQ center, volunteering for the AIDS walk, joining a chorus group, disclosing early on in new friendships that he was not using, making plans with friends who use only at times when they are not planning to use) in order to find and build new relationships with individuals who were not using. He then ranked and implemented the most optimal solution to be able to carry out his plans related to the behavioral activation module. In this way, the therapist was able to alternate between the behavioral activation and problem-solving modules to help Felix build generalizable skills that he could apply beyond treatment. Felix continued to use crystal methamphetamine daily but was able to increase his medication adherence and decrease his use during sex as well as achieve a higher quality of life than he had before treatment. Although he was not able to stop using stimulants as a result of the treatment, the increased medication adherence represented a harm-reduction success, and, following an MI approach, the therapist remained nonjudgmental about his substance use.

Challenges Encountered and Lessons Learned

Because of the nature of the population and the many social and structural barriers faced, and because of the focus on individuals who were not virally suppressed and therefore already having challenges managing their health care, these issues entered the therapy space as well. We summarized some of the challenges encountered and lessons learned. While this is not an exhaustive list, we hope that this summary and our approaches can serve as a guide for those interested in implementation.

Eligibility

Eligibility for this trial included not being virally suppressed. We recruited from an HIV clinic and one of the challenges was that individuals who attend their HIV medical visits regularly are, on the whole, more likely to be engaged in care, adherent to medication, and virally suppressed. To generate referrals and identify individuals who might benefit, we worked closely with the clinic. Although designed for individuals to improve their medication adherence, the package of modules and therapy program would likely benefit of range of individuals living with HIV, including those who are virally suppressed. Implementation should consider expanding eligibility to include all patients living with HIV who feel they could benefit from therapy to address mental health comorbidities and recruiting outside of contexts where individuals receive care to ensure reach to those least engaged in medical care.

Session Attendance and Noncompletion

Individuals faced a range of barriers to attending sessions at the scheduled day and time. Some individuals had issues with transportation (e.g., having to take two buses, over 2 hours one way to arrive in person). Another had suffered a stroke after years of stimulant use and required medical transport to sessions. He had to arrange medical transport to appointments and calls had to be made several days in advance to secure the availability of the medical transport company. Additionally, some had younger children or older family members they cared for and needed to arrange sessions around caregiver availability. Still others were working and preferred sessions later in the day to not interfere with their work schedule (which was often inflexible and hourly pay, which makes it challenging to attend daytime appointments). Rather than being seen as “treatment interfering” behaviors, challenges with session attendance were reframed in the social and structural context of clients’ lives. These challenges were brought into the therapy room as problems that the clinician and client could collaboratively work to problem solve, and potentially generalize the problem solving to apply to other activities such as attending HIV treatment appointments or picking up medications. The problem-solving module was used to work through potential challenges and solutions for attendance.

There were some cases in which attending sessions became too challenging and individuals were not able to complete very many sessions. In a few cases, these individuals were offered telehealth sessions via telephone. In other cases, it was determined that the study would not fit in with their current life circumstances, and they were offered community referrals and the opportunity to return to the study if and when things changed for them. Given the significant increase in telehealth throughout health care systems following the COVID-19 pandemic, this option would likely be much more successful if offered now and could have extended the reach and engagement of individuals who were facing transportation, travel, and/or time issues. Although not tested thoroughly in this study, future implementation efforts should consider telehealth extensions of this treatment to meet the needs of those with challenges attending sessions in person.

“Homework” Completion

Few of the clients had completed schooling beyond high school and some had challenges with reading or writing. As a result, we did not call between-session assignments “homework” but rather home practice activities and not completing them was not seen as “treatment interfering” but rather as an opportunity to devise home practice activities that were less verbal (and often, more behavioral). An example might be that instead of completing a mood log with activities and mood ratings for behavioral activation, a client would plan to do three new activities and pay attention to mood before and after trying those activities. Then, this would be used to construct the ratings together in the next session and highlight patterns of activities that raised mood. Again, the clinician would partner with the client to develop activities between sessions that would fit within the client’s comfort and ability to complete.

Medical System Navigation

The treatment was designed to address psychological factors that were interfering with optimal adherence to HIV medication. However, during the course of therapy, clients would frequently reveal that they had trouble navigating the current medical system that could also impede with caring for their health and well-being. For example, some clients did not know how to schedule appointments with other providers (e.g., someone to examine an injury) or perceived it to be overly complex to make these appointments and others did not know how to take their psychiatric medication as prescribed. For this study, we had the benefit of being located within a close distance and operating within the same academic setting, and often would help link individuals to their care providers, social workers within the HIV clinic, or other support services that could help them with optimizing their health care.

Suggestions for Implementation

This treatment package is ideal for clinicians who serve people living with HIV with a range of structural, social, and psychological needs. We intentionally created materials that could be relevant for a wide range of clients, flexible in delivery, and tailored to unique patient circumstances. The benefit of using this treatment as opposed to alternative approaches is that the various parts have already been tested in trial setting with varied clients living with HIV and are tenets of more general evidence-based CBT. In this setting, we found that individuals who completed this treatment increased their self-reported medication adherence and were more likely to have a suppressed viral load by the end of treatment and 8 months later than at the beginning of treatment (Safren et al., 2020). Patients also showed some promising improvements in terms of negative affect and positive affect, which we used as transdiagnostic indicators of psychosocial symptoms. There are also implications for implementation in community settings that we address here.

With regards to the clinicians and settings of the original trial, all trial clinicians were familiar and comfortable with working with people living with HIV. This treatment is best delivered by a clinician who is already familiar with the lived experiences of this patient population. Those without experience working with this population would benefit from training in cultural competence/humility, empathically relating to the unique and multilevel barriers to care this patient population experience, and basic training in HIV education. In addition, trial clinicians were either master’s-level therapists, currently in graduate school for clinical psychology, or postdoctoral fellows in psychology. As such, clinicians already had a level of familiarity with CBT and MI and maintaining fidelity to manualized protocols. Despite the attempt to simplify the treatment content (e.g., worksheets), translation of this treatment to clinical settings may require training in CBT/MI in general, and in the context of this treatment, as well as audit and feedback, clinical supervision, and other strategies for fidelity monitoring.

In our trial, we monitored adherence using the WisePill devices and had access to clinical data including log viral load and absolute CD4 count from patient medical charts. However, within clinical and/or community settings, it may or may not be feasible to have verifiable data to confirm viral suppression. We found that often clients who completed our protocol were proud to discover they had become virally suppressed at their last medical visit and spontaneously shared that information with their mental health provider. We anticipate this would likely be the case in other settings if medication adherence and viral suppression were tracked and reviewed together with the patient. At a minimum, collecting self-reported weekly adherence can facilitate this tracking and monitoring of HIV-health goals throughout treatment.

In considering appropriate avenues for dissemination and implementation of this treatment package, the ideal therapist would be familiar with issues that affect people living with HIV and have some basic knowledge of CBT. Although these clinicians may be most equipped to rapidly integrate this treatment into their ongoing practice, we do not see this treatment as being limited to implementation by these clinicians, particularly if training, supervision, and consultation were provided. There is some evidence for the ability for other trained health care providers (e.g., nurses) to deliver therapy through training and task-shifting in low-resource regions including low- and middle-income countries (Andersen et al., 2018; Everitt-Penhale et al., 2019; Magidson et al., 2017; Safren et al., 2021). However, these therapies differ from the trial here in that they are linear and follow a session-by-session protocol instead of following a detailed case conceptualization and tailored, modular treatment plan. There is still a need to investigate whether a more complex treatment, such as the one described here, could be effectively task-shifted to non-mental health clinicians. Although our trial of this treatment was not embedded within a treatment setting, it was co-located on the same medical campus as the treatment setting where most patients received their treatment, suggesting the potential utility of co-located treatment delivery. Ideal settings for this treatment’s implementation could include Ryan White funded HIV clinics, Title X and reproductive health clinics that serve people living with HIV, and AIDS service organizations, or co-located spaces near these clinics.

Programmatic efforts have been made to develop comprehensive wraparound services, including case management, peer navigators, social workers, and co-located pharmacies within HIV clinics to remove barriers to these services and enhance the quality of care and level of services provided to patients (“About the Ryan White HIV/AIDS Program,” 2020). Programs like the Ryan White AIDS Drug Assistance Program (ADAP) help fund the cost of HIV medications for patients who are underinsured and/or would not be able to afford them (“About the Ryan White HIV/AIDS Program,” 2020; Health Resources and Services Administration Ryan White HIV/AIDS Program, 2018). These efforts to address structural barriers are necessary; however, they are not sufficient to address barriers to engagement in care and adherence to HIV medications, which often include psychological distress and mental health conditions (Bucek et al., 2018; Catz et al., 2002; Yu et al., 2018). Increasing clinic-based mental health services can positively impact not only the mental and emotional well-being of clients, but also promote physical health including improving HIV care outcomes and viral suppression (Aggarwal et al., 2019). Although not explicitly part of the treatment manual, one of the more powerful ways to address structural barriers was to actually help the clients connect to care services. There were times when therapists walked with the client to the co-located clinic to connect them to social work for case management or make their next care appointment with their provider. Offering this level of support within an existing clinic structure, especially for individuals encountering barriers at multiple levels, would be incredibly helpful in improving both psychosocial and HIV treatment outcomes.

Offering evidence-based mental health services informed by the treatment proposed here could be an advantageous addition to supporting the health and well-being of PLWH within clinical settings. The general theme is to provide evidence-based components of care based on a case conceptualization, deliver CBT within an MI conversational style, and incorporate Life-Steps adherence counseling into each session and the material to enhance self-care. Generally, our model is that by addressing mental health and other behavioral syndemics in the context of self-care for medical illness, turning the volume down on the mental health symptoms can facilitate acquisition of adherence/self-care problem solving skills. If mental health treatment is offered as part of integrated care in HIV clinics, it would also position the therapist to be able to engage in bidirectional communication with the medical care team, which we found to be useful within our trial. For example, with patient consent, therapists can inform medical providers about barriers to treatment engagement and medical providers can refer patients to the treatment and inform therapists about psychosocial concerns that are presenting in the context of their treatment provision but beyond the scope of their own expertise.

Highlights.

• People living with HIV experience “syndemics.”

• Transdiagnostic treatment can address multiple psychiatric and medical problems.

• Developed a transdiagnostic CBT treatment to address the needs of people living with HIV.

• Treatment description and case examples are provided as a guide for clinicians.