by Jorien Breur
Working at Clínica de Familia La Romana, one of the largest HIV clinics in the Dominican Republic, has exposed me to some of the most difficult challenges in HIV management and care. A therapy session with a family that was intensely affected by HIV, provided me the opportunity to reflect on some of the psychosocial issues that are most closely associated with the experience of a child living with HIV in the Dominican Republic.
The first family member to enter the psychologist’s small office was Luisa, a 10-year-old born infected with HIV. Her mother’s own struggle with HIV ended two years ago, leaving Luisa’s father to raise two small girls, both born with this chronic and thus far incurable disease. For anyone, bearing witness to the death of one we love is difficult. Each individual’s emotional turmoil invokes a different reaction; in Luisa’s case she was acting out at school and had reverted to wetting the bed. We then met separately with Luisa’s father, also HIV positive, to discuss his family’s situation. He admitted that he was feeling increasingly powerless and overwhelmed. His physical ailments along with his family’s social challenges were becoming increasingly complicated and difficult to overcome.
Near the end of the session, the psychologist approached the topic of disclosure with Luisa’s father. Most of the clinic’s pediatric clients know their HIV status by the time they turn eleven years old. Luisa’s father could hardly find his own thoughts; he appeared to be in a state of panic. “I was hoping that I could wait until she was a bit more mature. I saw on TV a woman who didn’t find out she had the disease until she was 20. Could we wait?” As an observer, the distress of his situation and his plea spoke to me. Unfortunately, in a country where the median age at first sexual intercourse for girls is about 13.7 years (1), early disclosure of HIV status is vitally important. Research has shown that children and adolescents who know their HIV status are more likely to take responsibility for their own health and be adherent to their medications (2).
The conflict I witnessed in this single family therapy session represents a microcosm of conversations that are being held within families throughout the country. With the advent of antiretroviral treatment, which became available at no cost to people with HIV/AIDS in the Dominican Republic in 2004, many HIV-positive children who were not expected to survive childhood are entering adolescence and young adulthood. This brings new challenges related to the impact of HIV infection on physical and mental health, as well as on normative developmental processes such as growth, peer relationships, puberty, and sexuality (3). Moreover, important epidemiological shifts are becoming evident. In the Dominican Republic, which together with Haiti compromises 68 percent of the Caribbean’s HIV epidemic, 60 percent of the people living with HIV are women and HIV is now the leading cause of death among women of reproductive age (4). This growing feminization of the HIV pandemic is a reflection of women’s greater social vulnerability.
For adolescents like Luisa, her HIV status places her in a severely disadvantaged position. In a study of 1,000 men and women living with HIV in the Dominican Republic, it was shown that women suffer disproportionately in almost all aspects of life. Both men and women living with HIV had a much higher unemployment rate than the general public, but women’s rate was more than twice that of men (58% vs 28%), and 74% of women lived in households with an annual income of less than US$3000. The psychosocial impacts of HIV-related stigma and discrimination compound the difficulties of their lives. Within the Dominican society, HIV-positive people are subject to extreme discrimination, including verbal assault and physical abuse. Fifty-three percent of HIV- positive women, twice the national average, had endured violence, ranging from physical abuse to rape. Rights violations were also common to both men and women. 7% of participants said they had not given their consent to be tested for HIV and 19% said their status was revealed to other people without their consent (5).
Our location in La Romana, a major sugar, manufacturing, and tourism industry center, also places us in the region with the highest HIV prevalence in the country (6). The local epidemic is predominately driven by heterosexual transmission, which stems from the societal disenfranchisement of those individuals who engage in high-risk activities. Transactional sex, engaged in and supported by both natives and tourists, is a defining feature of tourism areas and has been implicated as a key factor in the region’s HIV/AIDS epidemic. In addition, the highest HIV prevalence rate (5%) in the country is registered among residents of the sugar cane plantation communities (bateyes), a high risk population for HIV transmission due to conditions of structural poverty, lack of health services, and a history of socio-cultural marginalization (7).
Misconceptions and denial allow the virus to flourish, while keeping HIV-positive individuals silent. For adolescents, the burden of silence can take a toll. Many struggle to form intimate relationships, both emotional and physical, without disclosing their HIV status. In addition, these children often live in compromised situations: extreme poverty, exposure to high-risk activities, loss of parents, and isolation from adequate support systems. To deal with these hardships, we need to find a way to give these HIV-positive children a pause to breathe. Supportive social contexts must be developed for vulnerable children that further facilitate their psychological coping and contribute to their resilience and well-being. Clínica de Familia can be looked at as a model for HIV care in the country – currently employing a psychologist and peer adherence counselor as well as organizing support groups and an annual summer camp for children and adolescents with HIV.
Mental health services such as those offered at Clínica de Familia are essential components of a worldwide effort to modify behaviors that fuel the epidemic and to treat those who are already infected or affected by HIV. Mental health professionals, because of their access to families, are especially well-positioned to provide ongoing and consistent support to families affected by HIV. Unfortunately, in the Dominican Republic, the government allocates less than 1% of health care expenditures to mental health services, and 50% of these resources are directed towards one hospital. Psychiatrists uniquely possess the biological knowledge of disease and the therapeutic skills necessary for the management of psychiatric and neuropsychiatric dimensions of HIV disease; however, the country has two psychiatrists per 100,000 population, with the majority (68%) working in private practice and for profit mental health facilities (8). This suggests that the psychiatric needs of patients are poorly recognized and undertreated.
As the global fight against HIV continues, the successful treatment of mental illness in the context of HIV will undoubtedly lead to improved function, quality of life, longevity, engagement, and adherence to treatment and the prevention of HIV transmission. Although I do not know what path Luisa’s life will take, I take comfort in knowing that a major chapter in the history of this child’s life, as well as the AIDS epidemic in the Dominican Republic, will be written here at Clínica de Familia.
1. Demographic and Health Surveys. Dominican Republic DHS Key Indicators. Measure DHS. http://www.measuredhs.com/publications/publication-FR146-DHS-Final-Reports.cfmPublished. October 2003. Accessed November 14, 2012.
2. Funck-Brentano, I., Costagliola, D., Seibel, N., Straub, E., Tardieu, M., & Blache, S. Patterns of disclosure and perceptions of the human immunodeficiency virus in infected elementary school-age children. Archives of Pediatric Adolescent Medicine. 1997; 151: 978-985.
3. Havens JF, Mellins CA, Hunter J. Psychiatric Aspects of HIV/AIDS in childhood and adolescence. In: Rutter M, Taylor E, ed. Child and Adolescent Psychiatry: Modern Approaches. Oxford, UK: Blackwell; 2002: 828–841.
4. Pan American Health Organization (PAHO). Health in the Americas: Dominican Republic. PAHO. http://www.paho.org/hia/archivosvol2/paisesing/Dominican%20Republic%20English.pdf. Published 2007, Accessed November 14, 2012.
5. Caceres, F. I. Estigma y discriminacion en personas que viven con el VIH, Instituto de Estudios de Poblacion y Desarrollo, PROFAMILIA, Republica Dominicana, GTZ, IPPF. 2009.
6. Monitoring the AIDS Pandemic (MAP). HIV infection and AIDS in the Americas: lessons and challenges for the future. MAP. http://www.ssrnetwork.net/document_library/detail/2348;/hiv-infection-and-aids-in-the-americas-lessons-and-challenges-for-the-future. Published 2003. Accessed November 14, 2012.
7. Social and Demographic Studies Center (CESDEM). Encuesta Demográfica y de Salud 2002 (Demographicand Health Survey 2002). ORC Macro. Published October 2003. Accessed November 14, 2012.
8. World Health Organization (WHO). Report on Mental health Systems in the Dominican Republic. WHO. http://www.who.int/mental_health/dominican_republic_who_aims_eng.pdf. Published January 2008. Accessed November 14, 2012.
Jorien is a fourth year medical student at Albert Einstein College of Medicine in Bronx, NY. She was awarded a Doris Duke International Clinical Research Fellowship which allowed her to take a year off from traditional medical school coursework to do research at Clínica de Familia La Romana and in the Dominican Republic.