Recently or newly diagnosed HIV infected Latino/Hispanic youth in care report stressors similar to non-Latino/Hispanic youth.28
These stressors included: (1) adapting to receiving the initial HIV diagnosis; (2) conflict of disclosing or withholding their HIV diagnosis from family, friends, and or sexual partners; (3) HIV stigma, (4) concerns with body image, (5) concerns with medication side effects; (6) disruption with future life goals, and (7) reproductive health concerns.
Mental health services for youth newly diagnosed with HIV are thus important in order to assist them with stressors stemming from an HIV diagnosis. Not addressing these stressors can result in compliance problems with appointments and adherence issues to medications.33,34
Thus, mental health services appear to be critical in assisting these youth in adapting to their HIV diagnosis. The acceptance of mental health services does vary by ethnicity with Euro-Americans more likely than Latinos (and African Americans) to accept and seek mental health services. Furthermore, Latinos report higher levels of mental health related stigma in contrast to Caucasians.35
Thus, health care settings must be able to provide culturally appropriate mental health care that includes considerations of the context within which these youth live as well as their fear of accepting mental health services. Culturally appropriate mental health services focuses not only the youth's symptoms meeting DSM criteria but also of the community, cultural, and family context of the youth.36–38
While some of the stressors identified by youth arise in response to HIV stigma, there are several insights on how practitioners can use this information to help minimize HIV/AIDS-related stress. For example, disclosure of their HIV status was identified as a major stressor by these youth study participants. Skills building opportunities that assist youth to prepare for disclosure of their HIV status may add to the overall well being and quality of life for these youth. Disclosure is difficult even among HIV infected adults with 42% of adult MSM, 19% of heterosexual men, and 17% women not disclosing to sexual partners.39
Disclosure of HIV status to sex partners among youth has been positively correlated with length of time since diagnosis although youth are less likely to disclose to HIV negative and to casual sex partners.40
Disclosure of HIV status has been demonstrated to be difficult but also rewarding in that youth who disclose have been assessed as achieving better psychosocial outcomes like higher self competence in peer relationships and less post traumatic stress.41
Confidential services have also been found to be key in provision of health care for youth living with HIV who fear HIV stigma. HIV stigma was described as by these study participants as rejection and negative reactions from family, friends, gatekeepers/providers of health services, and they worried that their diagnosis may unwillingly be shared with others. Previous studies of minors who are sexually active and may be pregnant, or with an STD or seeking contraceptive services demonstrated that confidential services were important and that they would forego health care if it required parental consent.42,43
Thus, breaching confidentiality by a health provider or by an educator adds to the stress of being HIV infected. The rights to privacy for youth are not as clear cut as for adults, and varies by state or local jurisprudence. Providers should respect an adolescent's request for privacy, when permitted by local statues. In instances where local jurisprudence overrides the youth's request for confidentiality, the youth should be informed and the provider should ensure the safety and well being of said youth when disclosure to parents occurs.44,45
Several states through legislation, have attempted to strike a balance between authorizing a minor to make decisions about some areas of their own medical care, especially reproductive or sexual health (including HIV), against the disclosure of health care information to parents.46
Confidentiality in the health care setting which extends to the relationship between youth and parents is broad enough to also protect the privacy of youth from disclosure of health information to others including classmates and sexual partners. Further, the issue of confidentiality and privacy of health care information is important not only for minors but also for older youth whose diagnosis may be disclosed due to dependence on parental health insurance, and is protected by The Health Insurance Portability and Accountability Act (HIPAA).47
However, even HIPAA is vague on the extent of health information that is or can be disclosed of youth 18 years and older to parents when insurance companies bill for service.
Another stressor or challenge identified by youth was taking antiviral medications and highlights the importance of conducting treatment readiness with youth and having them understand possible side effects and strategies for dealing with said side effects. National guidelines for HIV treatment have been developed which emphasize the patients' readiness for treatment as a requirement for starting treatment,48
however said guidelines do not state how readiness is defined or assessed. Research has revealed that lack of readiness for treatment may result in interrupted treatment.49
Treatment readiness is thus important to consider in provision of care to youth who, as compared to adults, will require longer duration of treatment until a cure is found. Present research on treatment readiness screening forms is underway.50
However, until valid and reliable measures are available, providers should engage in in-depth discussions with youth addressing identified barriers to successfully initiating and adhering to their medications. In summary, Latino youth reported using meaning-focused coping strategies as a way of adjusting to their HIV diagnosis, with the addition of spirituality as a form of coping. Having knowledge of what these youth identified as coping strategies, especially seeking support from providers, peers with HIV, and significant others, can also help youth newly diagnosed with HIV. This support assists them in gaining a better appreciation of their life, reordering priorities, and achieving clarity about what really matters to them. Individual and group therapy sessions would be complementary strategies for achieving these goals, allowing youth to identify coping strategies and to be able to gain strength from sharing these adaptive processes with peers living with HIV in their same environment.
Our findings of how youth describe their coping with HIV supports Folkman's model of meaning-focused coping in describing positive emotions during a stressful experience. Youth used benefit finding strategies to learn and grow from their diagnosis. They used benefit reminding strategies to remind themselves that even with HIV, they could still live, and that there were other diseases that could be worse; they employed adaptive goal processes to achieve what was more realistically appropriate, and focused on what really mattered in their lives (reordering priorities). Furthermore, these youth, despite stressful and dire circumstances, found positive meaning in ordinary life events as a way of coping with their illness. Thus, stressful or challenging events or circumstances were dealt with not just with negative emotions (anger, fear, depression) but with positive emotions (finding meaning in life with HIV) as a way of coping and may be part of the normative process for these HIV infected youth to restore their sense of psychological and social functioning. We could not comment on the timing or duration of when positive emotions become part of the coping strategy of these youth, but can only state that these youth needed to find positive meaning within their lives with HIV infection.
Religion and faith as coping strategies are not fully explained by Folkman's model, but were noted to be important strategies for coping. Of note is that religion, attending church, references to God as a source of strength and coping, is often expressed by youth of many ethnic groups, usually in individual settings, rarely in group settings within a clinical environment. These youth study participants discussed the presence of God in their coping with HIV. A study on religion and Latinos demonstrated that 93% surveyed report identifying with a religion and less than 0.5% identified as agnostic or atheist,51
and highlights the importance of religious beliefs in their lives. Religion/God/spirituality has previously been described as important in counseling services to Latinos, wherein Latinos use religion/prayer to cope with stress. However, providers should be cautious in that some of these youth sought strength more in their religion and their belief in God than in themselves. That they become passive in caring for themselves, leaving the outcome of their health to an outside source of control could be of great concern with the potential negative impact on adherence to medications, and on strengthening character development. Holt et al.52
distinguished between an active spiritual health locus of control orientation—the individual is empowered by God to actively take healthy behaviors/actions, and a passive spiritual health locus of control—the individual believes that their own health is up to God. This cohort of youth expressed more passive spiritual health believing that their diagnosis and outcome were up to God, but many did state that they sought changes in their lives to stay healthy. The health provider must be able to assist these youth in finding strength within themselves to make behavior changes that will keep them healthy, whether through the support of family, friends, health professions or their religious/God/spiritual beliefs.
Limitations and future directions
The primary limitation of this study is the small sample size. Additionally, the data from the qualitative interviews should only be used to generate more questions about the stressors and coping strategies that face Latino youth living with HIV. The common themes identified from the interviews help us to begin to understand the stressors face by these youth but should not allow us to make conclusions that these stressors are all inclusive or that the coping strategies identified are all but exhaustive. Yet, the importance of doing more research in this area is highlighted when seen in the context of engagement and retention in care, so that Latino youth diagnosed with HIV and their communities can benefit from the available medical treatments. Medical treatment of HIV can improve the quality of life of individuals with HIV,53
reduce viral loads within genital secretions54,55
and thereby reduce transmission of HIV to other members within a community.56–58
Future research on Latino youth living with HIV should evaluate the stigma that they experience from being Latino, HIV infected and often from being immigrants and on being gay. Research should also focus on the social support of Latino youth, as many face alienation from both the religious, gay and their own Latino communities, and as result many conceal their HIV diagnosis or go without medical treatment. Thus, innovative interventions that can inform these youth about physiologic and emotional impact of HIV on their everyday lives, on coping strategies, and expectations of health care services, including HIV treatment with antiretroviral medications and information on their legal rights to privacy, may prove to be valuable.