Provider Perceptions of the Challenges Faced by Youth Newly Diagnosed with HIV ABSTRACT BACKGROUND: Adolescents with HIV confront many challenges as they struggle with normal adolescent developmental issues while living with a highly stigmatized illness. Healthcare providers have a central role in aiding youth's psychosocial adjustment during the first year following diagnosis. It is important to explore the perceptions of healthcare providers who work with HIV-infected youth regarding the challenges these youth face. METHODS: Forty semi-structured interviews were conducted with healthcare providers from 14 clinics in the US that serve HIV-infected youth. Providers were asked to discuss challenges that they perceive HIV-infected youth face during the first year after diagnosis. Notes taken during interviews were analyzed and common themes were identified. Research team members met to examine emerging themes and categorize the most commonly reported challenges. RESULTS: Providers identified several key challenges for youth. In particular, providers described the challenges of receiving an HIV diagnosis for youth with pre-existing mental health conditions, particularly for those who may be dually diagnosed with a substance abuse disorder. Providers also reported that youths' initial disclosure of their HIV status to significant others and the stress of the disclosure process presented a critical challenge for these youth. Providers discussed the important role of the healthcare team and offered suggestions for improving healthcare assistance during this critical period. CONCLUSIONS: There are many challenges facing youth who receive an HIV diagnosis. The needs of these youth as perceived by their providers are often not being met, particularly needs surrounding mental health. Implications for research and practice will be addressed. BACKGROUND For youth newly diagnosed with HIV, unique difficulties may arise that can interfere with their ability to adjust and cope with their diagnosis. One common result of receiving an HIV diagnosis among adolescents is the experience of negative affective states, such as depression and anxiety (Hosek, Harper, & Domanico, 2000). This psychological distress has also been associated with increased participation in sexual and substance use risk behaviors (Murphy et al., 2001) as well as decreased adherence to anti-retroviral therapies (Hosek, Harper, & Domanico, 2005; Murphy, Wilson, Durako, Muenz & Belzer, 2001) among adolescents living with HIV. Given the stigma associated with HIV, many of these youth are apprehensive about disclosing their HIV status to parents, friends and sexual partners (Hosek, Harper, & Robinson, 2002), although once youth disclose their status to their parents they find that parental support is typically high (D'Angelo, Abdalian, Sarr, Hoffman, Belzer, & Adolescent Medicine HIV/AIDS Research Network, 2001). RATIONALE It is critical to learn from care providers who work with HIV+ youth on a daily basis, since they have vital information about the range of stressors that newly diagnosed youth face, and can lend insight into the supports that have assisted other youth during the initial period of time after receiving diagnosis. Diana Lemos 1, MPH, Sybil G. Hosek, PhD 1, & Gary W. Harper, PhD, MPH 2 & the Adolescent Trials Network for HIV/AIDS Interventions 1 Department of Psychiatry, John H. Stroger Jr., Hospital of Cook County, Chicago, IL 2 Department of Psychology, DePaul University, Chicago, IL Contact information: METHODS Forty healthcare providers from 14 U.S. clinics that serve HIV-infected youth participated in the study as part of a larger study examining challenges youth recently diagnosed with HIV face during the 1 year of learning about their status. In order to be eligible for this study, participants were required to be a professional staff member at one of the Adolescent Trials Network sites, provide direct clinical services to HIV+ youth and have at least one year of experience working with you. Overall, there were 14 clinical providers, 13 case managers and 13 mental health providers that participated in the present study. Providers were asked to discuss difficult issues they perceive youth to have to deal with during the first year after receiving an HIV diagnosis. The interview was semi-structured, created for the purposes of this study, and asked providers to discuss the sources of stress and support for youth recently diagnosed with HIV. Extensive notes were taken during the interviews. Interviews were audio-taped and tapes were reviewed for consistency in notes. Notes were analyzed by research team and common themes were identified. RESULTS Mental Health Challenges Many of the providers reported complicated psychological and social impact on the youths’ lives before and after the diagnosis. They report that many HIV+ youth have underlying psychological stressors prior to the diagnosis and addressing these concerns is of utmost importance when dealing with newly diagnosed youth. Providers felt that many of the youth had pre-existing mental health conditions, including trauma and abuse histories, and substance use problems. In terms of dealing with mental health issues, providers generally reported having difficulty engaging youth in mental health care due to stigma associated with receiving mental health services. Providers also cited the difficulty of having to deal with dual or even triple diagnoses (i.e., HIV, substance abuse and mental health). Disclosure Challenges Providers reported that many youth come from troubled homes and have no immediate source of social support. They felt that an intervention should help to build social support on multiple levels. According to providers, it is very difficult for the youth to find someone they can disclose to and this places a heavy burden on them. Providers discussed the importance of addressing youth’s concerns about the process of disclosure, expectations about disclosure and moving forward after disclosing. Health Management Challenges All providers felt that attention to health management was important. Newly diagnosed youth may need assistance in learning to navigate health care systems as well as seeking and arranging medical care. Additionally, the structure of health care visits should be covered with a focus on adherence to appointments. Providers also felt that while many newly diagnosed youth would not be eligible for medications yet, an intervention should begin to prepare them for medication management. CONCLUSIONS The present study extends past research on the challenges youth newly diagnosed with HIV face by examining the challenges youth have from the provider’s perspective. Our findings indicate that mental health service needs, disclosure and health management assistance are among the major challenges youth face during the first year after receiving an HIV diagnosis. Understanding provider’s perceptions of youth’s needs during the first year after receiving an HIV diagnosis has important implications for intervention and prevention efforts. IMPLICATIONS Based on these provider’s insights, there is a need for psychosocial interventions directed at newly diagnosed youth particularly during the first 12 months. Critical components of an intervention that were suggested by providers include individual counseling, individual sessions, group sessions, and the availability of other services such as an HIV+ peer buddy system, individual counseling, nutrition services and management. Other critical skills that youth recently diagnosed with HIV need are HIV/AIDS education, stress management, social skills training, and problem solving skills. Health providers emphasized a multi-disciplinary approach, the need for specialized staff training and ongoing staff support to reduce staff burnout, and centralization of community and adolescent services. ACKNOWLEDGEMENT This research was funded through the Adolescent Trials Network for HIV/AIDS Interventions (ATN). Sponsored by the National Institute of Child Health and Human Development (NICHD) with co-funding from the National Institute of Drug Abuse (NIDA) & the National Institute of Mental Health (NIMH). Major Challenges Youth Face During the 1 st Year After Receiving an HIV Diagnosis (Sample quotes of the most commonly stated challenges) Mental Health Service Needs “They have to reduce the double-stigma (mental health issues). They (youth) don’t use therapy or give opportunity to see what they have to offer especially since they are not obligated to use these services.” Mental Health Provider “Mental health diagnoses such as depression or psychosis which are especially different systematic issues. While, others have severe substance abuse risk factors which are escalated as part of the initial denial process.” Mental Health Provider Disclosure “Disclosure, disclosure, disclosure. There is the fear of being ostracized by their sexual partner.” Case Manager “Learning who they should tell, who can they tell and what to expect.” Case Manager “HIV is seen as a “gay disease.” For youth struggling with their sexuality this can be a big concern when deciding to tell others.” Mental Health Provider Health Management Assistance “They are at a vulnerable age were they don’t want to make important decisions like making appointments or being compliant with a new treatment.” Clinical provider “It can have two polar effects. One can help person engage medically and responsibly. Or it can cause them to shut down and disappear from medical services.” Case Manager “They are going through multiple challenges. One internal struggle is whether they are going to trust their providers.” Mental Health Provider “ Involving teens in support groups is important because youth realize that they are not alone in their age group and that other teenagers have the same disease. It also helps them talk to someone about what they face.” Case Manager “Meeting them where they are is important to their adjustment. It means in the community, with home-visits, having hours outside of clinic times.” Clinical provider “A team approach may be able to intervene if they work together over time. Additionally, they (clinic staff) will have to work with other community organizations.” Clinical Provider “It’s important to provide them with support and education. However, it’s also important not to bombard them with information. There has to be a slower educational process with smaller steps.” Mental Health Provider “Involving other support is crucial whether it is a family member or peer. It is important for adherence and disclosure concerns.” Mental Health Provider