Picturing Participation: Catalyzing Conversations About Community Engagement in HIV Community-Based Organizations.

Community engagement is considered a cornerstone of health promotion practice. Yet engagement is a fuzzy term signifying a range of practices. Health scholarship has focused primarily on individual effects of engagement. To understand the complexities of engagement, organizations must also consider relational, structural, and/or organizational factors that inform stakeholders' subjective understandings and experiences. Community engagement processes are not neutral; they can reproduce and/or dismantle power structures, often in contradictory or unexpected ways. This article discusses diverse stakeholders' subjective experiences and understandings of engagement within the HIV sector in Toronto, Canada. In our study, a team of community members, service providers, and academics partnered with three HIV community-based organizations to do this work. We used photovoice, a participatory and action-oriented photography method, to identify, document, and analyze participants' understandings at respective sites. Through collaborative analysis, we identified seven themes that may catalyze conversations about engagement within organizations: reflecting on journey; honoring relationships; accessibility and support mechanisms; advocacy, peer leadership, and social justice; diversity and difference; navigating grief and loss; and nonparticipation. Having frank and transparent discussions that are grounded in stakeholders' subjective experiences, and the sociopolitical and structural conditions of involvement, can help organizations take a more intersectional and nuanced approach to community engagement. Together, our findings can be used as a framework to support organizations in thinking more deeply and complexly about how to meaningfully, ethically, and sustainably engage communities (both individually and collectively) in HIV programming, and organizational policy change. The article concludes with questions for practice.

Seeking safer sexual spaces: queer and trans young people labeled with intellectual disabilities and the paradoxical risks of restriction.

Young lesbian, gay, bisexual, and transgender (LGBT) people labeled with intellectual disabilities have unique sexual health needs that are not being met. Denial by others of their right to pleasure and the exercise of heightened external control over their sexuality are commonplace. Current research indicates that these youth are at heightened risk for compromised sexual health. This study aimed to explore the ways in which social and environmental conditions influence vulnerability to adverse sexual health outcomes for this population. We used a community-based research approach to conduct qualitative interviews and focus groups with 10 young LGBT people (aged 17-26) labeled with intellectual disabilities. Participants reported multiple limitations on their autonomy that resulted in having sex in places where they did not feel comfortable and were unlikely to practice safer sex. Attempts by authority figures to protect youth through limits on their autonomy may be unintentionally leading to negative sexual health outcomes.

"Supposed to make you better but it doesn't really": HIV-positive youths' perceptions of HIV treatment.

PURPOSE: Half of new HIV infections worldwide occur among young people. Youth, particularly young women aged 15-29 years, represent a growing population to experience HIV. This study investigated HIV-positive youths' perceptions of, and experiences with, antiretroviral treatment. METHODS: A community-based, participatory approach was used to conduct a mixed methods research study. Thirty-four qualitative, in-depth, semi-structured interviews were conducted with HIV-positive youth (ages 12-24 years) in Ontario, Canada. Brief structured demographic surveys were also administered. A research team of HIV-positive youth, professionals, and researchers collaboratively analyzed the data for emerging themes. RESULTS: Four major themes emerged: Treatment knowledge: confusion and skepticism. Many participants did not understand, or believe in, antiretroviral treatment. Some youth on treatment did not understand why they were taking medications. Treatment decision-making: lack of choice and feeling emotionally unprepared. Some youth did not feel that they had choices about treatment, and others did not feel ready to make treatment decisions. Difficulties taking medications. Youth had problems with social routine disruption, feeling "different" and side effects. Many viewed costs of medications as a barrier to treatment. Inconsistent treatment adherence and treatment interruptions, which were common amongst participants. CONCLUSIONS: Youth may need support for managing difficulties with treatments, such as side effects, social impacts, and adherence. Developmentally appropriate, empowerment-based treatment education may be helpful for HIV-positive youth. The availability of social programs to provide treatment access does not guarantee that youth will be aware of them. This may indicate a need for youth-specific outreach.

Falling through the cracks of the big cities: who is meeting the needs of HIV-positive youth?

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.

HIV-positive youth's perspectives on the Internet and e-health.

BACKGROUND: Globally, half of all new HIV infections occur among young people. Despite this incidence, there is a profound lack of resources for HIV-positive youth. OBJECTIVE: To investigate Internet access, use and acceptability as means for health promotion and health service delivery among HIV-positive youth. METHODS: A community-based participatory approach was used to conduct a mixed methods research study. Thirty-five qualitative in-depth semi-structured interviews were conducted with youth (ages 12-24) living with HIV in Ontario. Also, brief structured demographic surveys were administered at the time of the interview. A stakeholder group of youth living with HIV, professionals and researchers collaboratively analyzed the data for emerging themes. RESULTS: Five main themes were identified with respect to the youth's use of and interest in the Internet as a health promotion strategy. These include: (1) high rates of Internet use and access; (2) issues around public and private terminals; (3) their use of the Internet primarily for communication and entertainment; (4) the rarity of health information seeking behavior in this group; and (5) wanting "one-stop shopping" from an e-health site. HIV-positive youth were enthusiastic about the possibility of content that was developed specifically to target them and their needs. Also, they were keen about the possibilities for increased social support that youth-specific online chat rooms and message boards might provide. CONCLUSION: Given high rates of use, access and interest, the Internet provides an important way to reach young people living with HIV using health services and health promotion programs. The onus is on e-Health developers to understand the particular needs of HIV-positive youth and create relevant content.