The authors examined the interconnectedness of stigma experiences in families living with HIV, from the perspective of multiple family members.
Living with HIV: Understanding the Patient Experience
HIV is now considered a chronic, rather than fatal, disease. Experts understand much more about managing HIV than they did 30 years ago. But patients living with HIV still face multiple challenges. Some of these are persistent issues, first highlighted in the historic HIV Cost and Services Utilization Study (HCSUS). For example, patients may still face discrimination due to misconceptions about how HIV is transmitted. Individuals who have psychiatric conditions or who abuse drugs or alcohol are still the least likely to adhere to treatment.
But those living with HIV may also face new challenges. For example, should HIV+ individuals plan a family? Should they even tell their partners that they are HIV+? How can patients find the time and the motivation to commit themselves to a medication plan for life?
Ongoing RAND work focuses on problems that HIV+ individuals struggle with every day—stigma, medical mistrust, and patient engagement, among others.
HIV is an epidemic fueled, in part, by stigma. Fear of HIV-related stigma and associated discrimination can discourage individuals from HIV testing and subsequent treatment. This is especially true among African Americans and Latino populations. Biases related to race/ethnicity, HIV serostatus, and sexual orientation can negatively affect adherence to treatment, especially when the biases are expressed by an individual's social network.
The stigma associated with HIV poses special challenges to the families of HIV+ individuals. For example, parents are reluctant to tell their children they are HIV+ because they are afraid others will treat the children unfairly. It may also be especially difficult to take medications when children or other family members are not aware that a parent is HIV+.
A series of studies demonstrated the feasibility of engaging urban congregations serving racial and ethnic minority populations in efforts to reduce stigma and promote testing. Programs designed in collaboration with church and community leaders reduced the stigma associated with HIV and increased testing, among other results. Because testing was integrated with other church-based health activities, HIV seemed to become viewed more as a health issue than a moral issue. Efforts to reduce stigma and HIV testing appear to interact in positive ways.
"Latino and African American churches that implemented the HIV stigma reduction program had increased HIV testing among congregation members."
Katie DeRose, Senior Policy Researcher
Effects of a Pilot Church-Based Intervention to Reduce HIV Stigma and Promote HIV Testing Among African Americans and Latinos
Programs to reduce HIV stigma in churches may have synergistic effects with HIV testing when provided in combination.
Societal stigma contributes to racial and ethic disparities in who acquires HIV, is aware of their sero-status, receives treatment, and dies early.
Social Network Characteristics Moderate the Association Between Stigmatizing Attributions About HIV and Non-Adherence Among Black Americans Living with HIV: A Longitudinal Assessment
This study examines whether social network characteristics moderate stigma's effects among HIV-positive Black Americans.
Do People Know I'm Poz? Factors Associated with Knowledge of Serostatus Among HIV-positive African Americans' Social Network Members
We examined how functional social support, HIV-related discrimination, internalized HIV stigma, and social network structure and composition were cross-sectionally associated with network members' knowledge of respondents' serostatus among 244 HIV-positive African Americans in Los Angeles.
Mental Health: Treating Depression and Substance Abuse
Individuals with HIV are much more likely to have mental health or substance abuse problems than individuals in the general population. Among HCSUS participants, most HIV+ people got the care they need for these conditions. But more than half of those receiving ART didn't take their medications as directed; compliance was even lower for those suffering from depression or addiction.
Depression and substance abuse remain barriers to treatment adherence, and eliminating them has remained a research priority. Depression undercuts the prevention benefits of ART, highlighting the need to integrate mental health services into HIV care. HIV providers can screen for psychiatric symptoms and for both drug dependence or heavy drinking and provide appropriate early treatment, improving patients' quality of life and decreasing overall treatment costs.
Impact of HIV Antiretroviral Therapy on Depression and Mental Health Among Clients with HIV in Uganda
With wide-reaching harmful effects of depression, and the absence of psychiatric treatment in most HIV care programs in sub-Saharan Africa, we examined the effects of antiretroviral therapy (ART) on depression and other mental health indicators.
Cognitive depressive symptoms and severe depression appear to pose strong challenges to adherence and highlight the need for early detection and treatment of depression.
The Differential Impact of PTSD and Depression on HIV Disease Markers and Adherence to HAART in People Living with HIV
Despite high rates of comorbidity, research has typically focused on the independent impact of PTSD and depression symptoms in people living with HIV.
Co-occurring psychiatric symptoms and either or both drug dependence or heavy drinking among people with HIV can reduce their quality of life and interfere with treatment adherence; therefore HIV service providers should screen for these conditions and provide appropriate services.
Effects of Drug Abuse and Mental Disorders on Use and Type of Antiretroviral Therapy in HIV-infected Persons
Drug abuse-related factors were greater barriers to ART use in this national sample than mental disorders.
The transformation of HIV from death sentence to chronic disease raises many family-related issues. Should HIV+ individuals tell their partners about the disease? Should they tell their children? Should they plan a family?
Recent work reveals that sex without disclosing HIV status is relatively common among individuals living with HIV. About half of HIV+ parents don't tell their children about their condition+, in part because they don't know how; about one-quarter avoid common physical contact with their children due to misconceptions about how HIV is transmitted. Misconceptions also influence children’s fear of sharing food or hugging and kissing their parents.
Despite such concerns, more than 25 percent of HIV+ men and women receiving care in the U.S. want children, and about two-thirds expect to have them. The challenge is to help them make informed decisions about childbearing, then offer either contraception or safer conception counseling based on their decision.
"We want to help HIV+ clients/couples make informed decisions about childbearing and offer contraception or safer conception counseling based on their decision."
Glenn Wagner, Senior Behavioral Scientist
Fertility Desires Among HIV-infected Men and Women in Los Angeles County: Client Needs and Provider Perspectives
Combination antiretroviral therapy for persons living with HIV/AIDS (PLHA) has extended life expectancy, and enabled PLHA to live productive lives that can include having children.
Sex Without Disclosure of Positive HIV Serostatus in a US Probability Sample of Persons Receiving Medical Care for HIV Infection
The authors estimated the proportion of HIV-positive adults who have any sexual contact without disclosure and the proportion of their sexual partnerships that involve unprotected sex without disclosure.
Reports the results of interviews with HIV-positive adults concerning their expectations and desires to have children.
Do Children Know Their Parent's HIV Status? Parental Reports of Child Awareness in a Nationally Representative Sample
HIV-infected parents often worry about the emotional consequences of disclosure to their children and that their children may tell others.
Living with HIV means making a life-long commitment to consistent treatment. But individuals with other demands on their time, attention, or resources—such as parents caring for young children or an aging parent or individuals having difficulty paying for food, clothing, and housing—were less likely to avail themselves of antiretroviral treatment. Women were more likely than men to report putting off seeking care because of responsibilities for the care of others. African Americans and Hispanics were more likely than whites to report being hampered by competing economic demands.
With the emerging emphasis on Treatment as Prevention pushing patients to start ART earlier than ever, the public health risks related to non-adherence may be greater than ever. Patients with earlier stage disease may be less adherent because they have not yet experienced serious symptoms. Starting patients on treatment before they are really ready to adhere increases the risk for an expanding "community pool" of resistance.
Most interventions to increase adherence target patients once they are on antiretroviral therapy. A current study, based on successes of a small pilot, is testing whether a skills model of behavior change can help providers know when an individual is ready to adhere before they start treatment. The model includes practice pill-taking sessions and a dose regulation mechanism to tailor the amount of counseling (from pre-treatment through the full course of treatment) to the individual needs of the patients.
"HIV is a lifelong chronic disease that requires behavior change."
Sebastian Linnemayr, Senior Economist
Supporting Treatment Adherence Readiness Through Training (START) for Patients with HIV on Antiretroviral Therapy: Study Protocol for a Randomized Controlled Trial
A "new generation" adherence support program targets patients before they begin HIV treatment. If proven efficacious and cost effective, the program could give clinicians a model for assessing their patients' readiness to adhere to HIV treatment.
Patient Characteristics Associated with HCV Treatment Adherence, Treatment Completion and Sustained Virologic Response in HIV Co-Infected Patients
Good mental health may be an indicator of readiness to adhere to treatment for Hepatitis C among individuals who also have HIV.
Treatment advocacy (TA) programs, based in AIDS service organizations and clinics, aim to engage clients into care and support antiretroviral treatment (ART) adherence through client-centered counseling; advocate for patients with providers; and provide social service referrals. Systematic evaluations of TA are lacking.
Women or individuals with a child in the household should be offered services that might allow them to avoid delays in seeking their own medical care.
One of the culturally relevant factors that may contribute to riskier sexual behavior among African Americans is medical mistrust—both in general and mistrust specific to HIV. For example, HIV conspiracy beliefs in African American communities, especially those related to treatment mistrust (e.g., people who take antiretroviral treatments are human guinea pigs for the government), can contribute to health disparities by discouraging appropriate treatment behavior.
Medical mistrust among African-American males with HIV predicts lower medication adherence over time and may help to explain disparities in medication adherence rates (as well as related HIV health outcomes) between African-Americans and other racial/ethnic groups.
Conspiracy Beliefs About HIV Are Related to Antiretroviral Treatment Nonadherence Among African American Men with HIV
HIV conspiracy theories among African Americans are neither rare nor extreme, and they discourage individuals who need HIV care from adhering to treatment.
Medical Mistrust Among Social Network Members May Contribute to Antiretroviral Treatment Nonadherence in African Americans Living with HIV
Nonadherence to antiretroviral therapy among HIV-positive African Americans is linked to conspiracy beliefs among members of their social networks, especially among others who are HIV-positive.
Medical Mistrust Is Related to Lower Longitudinal Medication Adherence Among African-American Males with HIV
Medical mistrust among African American males with HIV predicts lower adherence to medication regimes.