Theodore R. Burnes, PhD
Individuals at high risk for contracting the HIV virus or who are living with it pose a set of unique challenges for professional psychologists. These challenges are complicated by the evolving nature of HIV transmission, and in particular demographic shifts in individuals and groups that are at higher risk for contracting the virus. This article presents an understanding of working with consumers living with HIV from a thematic framework that centers clients’ multiple experiences with marginalization, wellness, and intersecting identities, while simultaneously addressing the demographic and societal shifts that are redefining those at highest risk. Four themes for psychologists to consider when working with clients who are at high risk for HIV are presented, along with thematically–oriented intervention strategies.
The past decade has seen not only an increasing emphasis on care and treatment for persons with human immunodeficiency virus (HIV) in the United States, but also renewed emphasis on prevention, including the use of antiretroviral therapy to decrease risks of transmission and for increasing longevity in seropositive individuals (Johnson, et al., 2014). Nevertheless prevalence rates among “high risk” populations continue to steadily increase at alarming rates. The prevalence rate of HIV infection in jails and prisons, for example, is now approximately five times the rate in the U. S. general population (Lyons, et al., 2014). The scientific knowledge base regarding psychological intervention with HIV has grown over the past several decades (Pence et al., 2014), but professional psychologists working with clients living with this chronic illness must update their skills and knowledge in order to provide optimum care.
This need is at least in part driven by changing demographics of HIV/AIDS in the U.S. The U.S. Center for Disease Control (CDC) estimates that 1,144,500 persons aged 13 years and older are living with HIV infection in the U.S. Of these, an estimated 180,900 (15.8%) are unaware of their infection (CDC, 2014a). Over the past decade, the number of people living with HIV has increased while the annual number of new HIV infections has remained stable – a stark contrast to HIV-related statistics in the U.S. ten years ago. Although stable, the rate and pace of new HIV-related infections continues at far too high a level – particularly among certain groups of people (CDC, 2014a). Specifically, African Americans of various genders, gender identities and sexual orientations continue to carry the largest burden related to HIV in comparison to other racial groups in the U.S. This group of Americans have consistently accounted for between 40%-50% of individuals living with HIV. Historically, HIV has predominantly conceptualized as a disease occurring in gay male communities (CDC, 2014a); although gay, bisexual, and same-gender-loving men who have sex with men (MSM) remain the population most impacted by HIV (CDC, 2014a), it is likely that transgender communities are increasingly disproportionately impacted by the virus. Exact numbers for the transgender community are difficult to obtain due to a variety of factors (e.g., fear of coming out to health care providers and others and inadequate transgender access to safe and accepting medical care; Richmond, Burnes, & Carroll, 2012). Given that these heavily affected populations also face oppression and marginalization for reasons other than their HIV status, their psychological well being may be further impacted by intersections between stigmatized cultural identities and health status (Sue & Sue, 2013).
Increasingly, scholars have demonstrated that individuals living with HIV have high rates of mental health and substance use disorders in comparison with community samples (Chartier, et al., 2014). Although there have been common misconceptions that many individuals living with HIV are be involved with sex work, analysis of HIV infection data paint a different picture. HIV prevention programs (especially those utilizing a framework of resilience and wellness) targeted at sex workers have shown increasing effectiveness (Bungay et al., 2013) as rates of infection in this community are stable. Regardless of the community involved, individuals with HIV present with complex medical needs and often with substance abuse needs as well (Chartier, et al., 2014), necessitating that psychologists working with them have competence in the areas of substance abuse and interdisciplinary health care management (HSPEC, 2013).
Thus, the changing face of HIV often directly challenges the training of professional psychologists, who may have been trained to work with clients living with HIV/AIDS using an outdated understanding of disease transmission and affected populations (Chartier et al., 2014). Possessing the knowledge, attitudes, and skills to work competently with clients living with HIV is a needed competency for health service psychologists. Such competencies include not only knowledge of disease characteristics, but those of populations and subcultures at higher risk.
As many mental health care professionals are not taught about HIV or AIDS in their graduate programs unless they seek out specific training (Myers, Bernstein, Morin, & Reyes, 2007), understanding language related to the virus becomes extremely important. The human immunodeficiency virus, or HIV, is a lentivirus (a subgroup of retroviruses) that causes the acquired immunodeficiency syndrome (AIDS; Douek, Roederer, & Koup, 2009). AIDS is defined as a long-term, chronic condition in humans in which stepwise, progressive failure of the immune system serves as a catalyst for life-threatening cancers and opportunistic infections (Douek, Roederer & Koup, 2009). Without treatment, average survival time after infection with HIV is estimated to be 9 to 11 years, depending on the HIV subtype. Infection with HIV occurs by the transfer of various bodily fluids (e.g., blood, semen, breast milk) between humans during various types of human contact.
Although a medical illness, HIV infected individuals continue to be stigmatized and suffer economic, social, and/or political oppression. This may take the form of social rejection and isolation, avoidance of HIV infected people, compulsory HIV testing without prior consent or protection of confidentiality, violence against HIV infected individuals or people who are perceived to be infected with HIV, and the quarantine of HIV infected individuals (Joint United Nations Programme, 2006). Scholars (e.g., Herek & Capitanio, 1999; Snyder, Omoto, & Crain, 1999) have operationalized the construct of AIDS-related stigma into three distinct categories: (a) Symbolic AIDS stigma, or the use of HIV/AIDS to inadvertently or intentionally express attitudes toward groups of people or perceived to be associated with the disease; (b) Instrumental AIDS stigma, or a reflection of the apprehension and fear that are likely to be associated with any transmissible and deadly illness; and (c) Courtesy AIDS stigma, or the stigmatization of people who are supporters, family friends, allies, or loved ones of HIV/AIDS or HIV positive people.
These various understandings of HIV-related stigma can often make psychologists’ understanding of their clients’ lived experience more complex. This complexity is often deepened by other sources of oppression, marginalization, and lack of privilege in these high-risk populations. Often, AIDS stigma is expressed in conjunction with one or more other stigmas, particularly those associated with LGB sexual orientations, transgender or gender-diverse identities (American Counseling Association, 2010), promiscuity and prostitution (Burnes, Long, & Schept, 2012), and intravenous drug use (De Cock, Jaffe, & Curran, 2012). The perception that AIDs is primarily related to sexual activity between men remains in spite of the fact that the dominant mode of worldwide-spread for HIV remains heterosexual transmission (De Cock, Jaffe, & Curran, 2012).
What is “High Risk?”
The infectious disease literature uses the term “high risk” to identify specific groups who have disproportionate rates of infection in comparison to community samples. Scholars of psychology have often identified and presented individuals who are at high risk for contracting the HIV virus as a group of people who are in immediate need of secondary prevention strategies, and who need psychoeducation related to their vulnerability (Conyne, 2010). The Center for Disease Control (CDC) has recently noted four distinct groups of individuals who are risk for HIV: (a) racial/ethnic groups, (b) substance users, (c) gay and bisexual men, and (d) youth (CDC, 2014b). As mentioned above, there may be other groups of individuals who are at high risk but may not be a group that is being directly targeted for intervention due to underreporting and issues of healthcare access.
Cole (2009) notes the importance of understanding multiple intersecting identities for individuals who experience cultural marginalization and oppression. Specifically, the author noted the importance of understanding the unique ways that marginalized identities impact one another to create a unique experience for each individual. Cole also identified the importance of psychologists’ consideration of within-group variability for those in a specific cultural group, illuminating the importance of understanding unique ways that combinations of cultural identities affect, and are expressed by, each individual client.
The values, cultures, and experiences of intersecting oppression and marginalization for individuals that identify as being part of a high-risk HIV infection population should, then, alter the clinician’s methods in providing them psychological services. For example, the concept of intersecting oppressions can aid psychologists in understanding the intersections between substance use and contracting HIV while concurrently hold some important knowledge that non-injection drug use plays a role more subtle but evident role within HIV.
Further, it is important for psychologists to link sexual behavior and HIV but to not equalize them. Although having various types of sexual intercourse with individuals who are at higher risk for HIV may increase the chance of infection, certain types of sexual behavior (e.g., anal sex versus vaginal sex) should not be synonymous with infection. Such explicit clarifications can help practicing psychologists to reframe “high risk” from a culturally sensitive lens while also having accurate knowledge to help prevent HIV transmission.
Thus, the need for psychologists to understand living with HIV as a series of intersecting bio-psycho-social processes becomes paramount. Because such processes are experienced and expressed differently by each affected individual, (Earnshaw, Lippitt, Jin & Chaudoir, 2014; Quinn & Earnshaw, 2011) and do not conform to linear or developmental models of chronic illness, a more fluid conceptualization of interlocking themes is needed for HIV-affected individuals who also must cope with the stigma of other marginalized identities. A case conceptualization framework of working with HIV-affected individuals can be broken into four distinct themes, each having distinct strategies for psychological intervention.
Theme 1: Testing and Initial Symptoms
One of the first issues that may occur early in treatment relates to the client’s acceptance of him or herself as HIV-positive, generally a decision associated with experiencing signs or symptoms of HIV related illnesses The primary tasks at this stage involve becoming informed about the testing process, assessing personal risk, and obtaining social support. Adolescents, a high risk group, may be worried about accessing testing for fear of having to disclose to parents and may not know that free and confidential testing is available to them. For clinicians working with clients at this stage of their engagement with HIV illness, it is essential to conceptualize clients as needing information, and to assess psychological symptoms such as anxiety or distress that are related to a lack of information. Here, psychologists can assist by providing information and helping to normalize the testing process. At this stage, clinicians must not only assist clients in understanding the threat of untreated infection but assessing individual factors that may increase risk (e.g., internalized messages that protected sex is less intimate or pleasurable). It is vital for clinicians explore a high-risk client’s personal and cultural beliefs in relation to HIV as well as possible sources of stigma and HIV-related fears in the client’s environment (Koh, 2010).
Theme 2: Medical Care Access and Test Results
With this theme, individuals living with HIV need to learn about HIV disease, medications and treatments. Specifically, clients engaging with this theme should monitor their medical status through routine laboratory testing and health checkups, while also addressing non-medical issues like depression and beginning a regimen of self-care. At this stage clinicians have noted the importance of self-care interventions such as wellness programs, assistance with behavior changes and engagement in alternative treatments such as meditation (Johnson, et al., 2014). Clients should make informed decisions about being a proactive medical patient, select a course of treatment in collaboration with healthcare providers, and learn about possible interactions between psychopharmacological agents and HIV medications. Psychologists working with clients from one of the four high risk groups noted earlier in this article may want to explore worries about accessing healthcare, experiences of oppression and/or prejudice based on previous negative interactions with health-care providers, and should be able to provide a local referral list for culturally sensitive medical care providers. Psychologists should also address coping mechanisms for psychological and physiological changes that may be due to HIV or the side effects of HIV medications.
Theme 3: Living with HIV/the Personal Health Maintenance Action Plan
When engaging with this theme, people living with HIV have a primary task of gathering more sophisticated information about opportunistic infections, treatment options and side effects. Clients are beginning to develop their own health maintenance action plan (H-MAP), or a sequential, organized plan of health and wellness strategies tailored to the consumer’s individual needs. HIV-positive consumers also need to examine health insurance coverage and access to HIV-informed health care. Individuals at this stage may need to avoid relapsing into maladaptive ways of coping like substance abuse or social isolation. In addition, they may be confronting a crisis of faith, feelings of personal failure and/or disillusionment with medical care. Such issues may best be processed within a group context as individuals learn how to reassert control over their illness (Mason, Vasquez, & Mason, 2014); thus, psychologists may want to refer clients to groups when clients are presenting with symptoms related to this theme.
Theme 4: Resilience with Multiple Chronic Illnesses
This theme is most applicable to individuals who are living with other chronic illnesses, including substance-related medical issues, in addition to HIV/AIDS. Although the understanding of “chronic illness” has often been limited to physical illnesses, (e.g., cancer) it is important for psychologists to also conceptualize chronic illnesses from a mental health framework (e.g., major depression). Clients living with multiple chronic illnesses may need to work with and/or cope with a variety of different physical symptoms, including managing chronic pain, fatigue and/or side effects of medications; coping with changes and physical changes to the body; understanding differences in mood, affect, and connectedness with others; and ambivalence about the future. Psychologists may want to aid clients in establishing practical supports for help in daily living, including relapse prevention strategies for substance abuse or chronic psychological conditions such as major depression as well as anticipating grief associated with perceived and future losses.
Using Thematic Conceptualization to Guide Treatment Interventions
Theme 1: Initial Confrontation of the Disease
For psychologists working with high-risk clients at this stage, client empowerment regarding basic medical education (laboratory monitoring, symptom awareness) is key. This may involve assisting clients with anxiety regarding seeking medical services, especially important for those who have experienced discrimination by medical providers. Management of denial, anger and depression using empirically supported modalities is important at this stage, as is addressing issues of serious chronic illness, loss and mortality. Assisting clients in making decisions regarding disclosure of their HIV status in the context of possibly ongoing behaviors such as drug use or high-risk sexual behavior is equally important at this stage. It is important for clients to evaluate their social network and identify potential allies in their HIV discovery process so as to begin to redefine perceptions of self as a person living with HIV.
Imparting anxiety-reduction techniques to clients during periods of high anxiety in the testing or retesting process may be of assistance. Psychologists should monitor for suicidal ideation when test results are imparted, and provide crisis intervention, treat depressive symptoms, and help clients manage feelings of hopelessness. Further, clinicians should establish a shared vocabulary with clients for discussing philosophical and spiritual issues regarding life and death. With this shared vocabulary, therapists should maintain a realistic and informed stance; specifically, they avoid being overly positive but should not slip into doom and gloom. Clinicians should continue to explore clients’ personal and cultural beliefs in relation to HIV while helping clients to assess their own social network and facilitate development of a supportive circle of friends and/or family. Further, therapists can help clients to practice sharing news of their HIV status with others and deal with these individuals’ responses (such as via role plays, letter writing, etc.).
Theme 2: Accessing Medical Care
When working with clients who are engaged with this theme, it may be helpful to encourage clients to engage with other HIV-positive individuals in various stages of treatment. Clients should also begin to discuss and establish legal and economic protections (medical power of attorney, wills, etc.). In the past, examination of work and disability options was important at this stage, but more recent advances in medication management may allow clients delay this exploration, given the increasing stamina and longevity that new pharmacological treatments can confer (Pence et al., 2014). Assistance in processing grief and continued feelings of loss or mortality may continue to be important. Clients may need to negotiate changes in relationships, especially in regards to intimacy and sexuality (Koh, 2010).
It is important to facilitate appropriate referrals to supportive medical care as well as supportive HIV/AIDS advocacy resources. Clinicians should support clients in working through treatment resistance issues and decisions while helping clients to establish habits of self-care and an attitude of self-love. Psychologists can assist in developing action plans for health by addressing substance use, smoking cessation, eating patterns and exercise, medication adherence, and management of side effects. Like the previous theme, clinicians can provide anxiety-reduction techniques and depression management while helping clients strengthen their support network. Clinicians can also support clients in living with uncertainty of disease progression by supporting them in intimate relationships with education about safer sex techniques, couples work and/or sex therapy. Finally, therapists can encourage clients to explore life planning and career goals from the perspective of maximizing quality of life.
Theme 3: The Personal Health Maintenance Plan
In this theme, clinicians should begin to help high-risk clients to update perceptions of themselves while helping them to identify more with others living with HIV-related illness. Such identification can come from attending community events, going to support groups, or developing friendships with other people who have been physically impacted by HIV. These clients should reevaluate family and friend support issues while also learning and using pain management strategies if needed.
Therapists working with clients at this stage should provide continuity of contact and follow-through to client by helping clients to redesign a health maintenance action plan (H-MAP). Specifically, this type of plan helps clients outline goals that are customized to their own wellness using a time-series design. For example, a psychologist might co-construct a goal with a client to decrease the amount of cocaine use to once/week over a six-month period. The psychologist would then create a structured series of check-in points with appropriate assessment measures at each point (e.g. at month 1, check-in revolves around the client’s development of reduction strategies; at month 2, assessment toward goal and development of alternative coping strategies; etc.) Clinicians can assist in goal development and help clients develop tools to measure achievement. Specifically, clinicians should address unrealistic fears or fantasies about living with chronic illness while concurrently providing comfort and reassurance.
When working with clients who are engaging with this theme, it may be important for clients to invite family members to sessions to observe and learn about family dynamics and reactions to clients’ illness. Referrals for family therapy may also be appropriate. Further, clinicians may want to encourage client and/or family involvement in a HIV support group. Psychologists at this theme should help their clients to identify areas in which some sense of control remains, and support them as they surrender control over others. Finally, it can be helpful for clients to learn hypnosis, imagery, meditation, or other reflective techniques (these may later be useful for pain management).
Theme 4: Resilience and Multiple Chronic Illnesses
The need to involve an interdisciplinary team focused approach becomes key when dealing with a client’s possible cognitive impairment or decline in life-management capability. Integrated health service delivery has increasingly been documented as a critical competence area for psychologists (APA, 2011; HSPEC, 2013). This is particularly the case when managing HIV and associated chronic illnesses. The later stages of HIV disease are not predictable, and clients may thus need to develop competencies in dealing with various issues such as pain management. Living and wellness may be complicated by functional declines associated with HIV-related cognitive impairment. Adaptation to declines in functioning should be addressed forthrightly along with topics of grief and mortality. Psychologists can begin to integrate anticipatory grief into wellness-oriented regimens.
Interventions across all themes
Psychologists working with clients who may engage in high-risk behaviors can utilize motivational interviewing (Miller, Zweben, DiClemente & Rychtarik, 1992) as a way to collaborate with clients in modulating engagement in high-risk behaviors. Various group interventions may also assist high-risk clients in establishing greater awareness and control over risky behaviors. A propensity to re-engage in highly risky behaviors may result from cumulative psychological stressors combined with potential feelings of guilt and shame (Quinn & Earnshaw, 2011) and psychologists should be prepared to attend to these different sources of shame to assist clients in reducing harm-related behavior.
Advances in medical management of HIV have changed the nature of treatment from a stance of coping with inevitable death to one of coping with chronic disease. Epidemiologic shifts in populations at highest risk for contracting HIV underscore the need for psychologists to continue to stay abreast of advances in understanding of disease patterns and management. At the same time, other factors remain constant, such as the ongoing effects of discriminatory behavior on high-risk groups. Psychologists are not immune to the effects of societal perceptions of cultural stigma and erotophobia and must continually self-assess and work through their own personal prejudices about HIV and high-risk groups (Wagner et al., 2014).
It must also be acknowledged that working with chronic illness, substance abuse, oppression and marginalization is emotionally taxing, and psychologists need to be aware of and manage their own stress responses to ensure service delivery is not adversely affected. Thus, the ongoing need to for consultation and clinical supervision is essential for ethical competent practice (Wagner, et al., 2014) as well as self-wellness. It is these ongoing activities that can help psychologists to ensure quality health care service delivery to consumers without imposing bias and burnout on the clinical process. Further, these continuous self-monitoring strategies can ensure that clients with long term chronic illnesses such as HIV are receiving competent psychological services that are as free from bias and judgment as possible.
Theodore R. Burnes, PhD, is a psychologist in Los Angeles, California. He is a clinical supervisor and director of Continuing Education & Training for the Lose Angeles Gender Center, a group practice that specializes in working with gender diverse and transgender clients. He has served on the Executive Board of Divisions 17 (Counseling Psychology) and 44 (Psychological Study of LGBT Issues) of the American Psychological Association. His private practice focuses on young adult development, clients with multiple marginalized identities, and health and wellness for psychology trainees.