Falling through the Cracks of the Big Cities: Who Is Meeting the Needs of HIV-Positive Youth?
Flicker, Sarah, Skinner, Harvey, Read, Stanley, Veinot, Tiffany, et al., Canadian Journal of Public Health
Background: Globally, half of all new HIV infections occur among youth under 25. As of June 30, 2002, more than 13,000 youth and young adults had tested positive for HIV in Canada. Despite this prevalence, there is a lack of resources for Canadian HIV-positive youth.
Objective: To investigate what can be done to better support the needs of HIV-positive youth in Canada.
Methods: A community-based participatory research approach was adopted. Thirty-four qualitative in-depth semi-structured interviews were conducted with youth (ages 12-24) living with HIV in Ontario. A stakeholder group of youth living with HIV, professionals and researchers collaboratively analyzed the data for emerging themes.
Results: When asked about areas in their lives where youth needed support, three major themes emerged: 1) Personal feelings about HIV: Youth identified a wide range of emotional response to their HIV status; however feelings of isolation, loneliness and hopelessness were dominant. 2) Barriers to full participation in society: Youth described a number of social and structural barriers to their full participation in society. 3) Specific support needs: Youth had difficulty accessing appropriate support services; they had very mixed feelings about both youth- and AIDS-serving organizations.
Interpretation: The youth we interviewed are interested in targeted programs, have difficulty accessing appropriate resources and would benefit greatly from increased social support. Specialized health and support services that are developmentally appropriate may be necessary. Where specialized services do exist, more research may be necessary to understand why they are underutilized and/or perceived as inappropriate. While this was a small exploratory study, our data suggest that better supporting the needs of HIV-positive youth might directly benefit this vulnerable population.
MeSH terms: Youth; HIV; support; community health services; stigma
Globally, half of all new HIV infections occur among young people.1 Youth represent a growing population in Canada to experience HIV and AIDS.2,3 As of June 2002, 13,279 Canadians under the age of 29 had tested positive for HIV.4 As a result of major improvements in HIV therapies, the first generation of perinatally infected youth are maturing to adolescence.5,6
HIV-positive youth are particularly vulnerable: they experience disproportionate rates of homelessness,7,8 sexual and physical abuse,9,10 financial difficulties,11-14 addictions,15 legal concerns,13,16 social isolation and stigma,16,17 and mental health concerns.9,18 Youth with HIV have a wide range of specific service needs, ranging from medical care, financial/housing support and vocational training to social support, substance abuse counselling and mental health resources.19-22 Programs targeting American HIV-positive youth have been able to demonstrate significant reductions in risk-taking behaviours and significant improvements in quality of life indicators.15,20,23
Despite this prevalence, incidence, vulnerability and opportunity, there is a lack of resources for HIV-positive youth in Canada.24 Few studies have investigated the needs of Canadian HIV-positive youth. Two exceptions include a program evaluation conducted by Positive Youth Outreach11 and a study investigating HIV-positive lesbian, gay, bisexual and transgendered youth (LGBT).16 While both confirmed much of what has been found in the American literature, they were focussed on specific subpopulations. The aim of this qualitative study was to investigate what can be done to better support Canadian HIV-positive youth. A diverse group of Ontario youth were studied.
A community-based participatory research model25,26 was adopted. A stakeholder group of HIV-positive youth, supporting professionals and university-based researchers collaboratively developed the research protocol and were involved in all aspects of data analysis and interpretation. …