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UBC Theses and Dissertations

Addressing the needs of young people living with perinatally-acquired HIV : promoting health through community-based research Fielden, Sarah


There is a need for community-based tertiary health promoting and risk reduction programs that target the unique psychosocial and developmental issues of adolescents living with HIV in Canada. In a climate of increased accountability, well designed and articulated planning and evaluation research is paramount to securing funding and delivering successful health and psychosocial programs in communities. This dissertation represents a case example whereby research was undertaken to support community action. A qualitative community-based participatory research approach was undertaken to create a health promotion program model for adolescents living with perinatally-acquired HIV in British Columbia, Canada. This process involved a multi-step collaborative partnership process including HIV-infected young people, their family members, their healthcare and service providers, university researchers, and international experts. The major goals were to: collaboratively assess the needs of the adolescents living with HIV in BC; to examine existing evidence in the literature for potential application to program design; to consult with international experts in the field of adolescent HIV care; and to form successful partnerships with various community stakeholders. Methods included in-depth interviews, focus groups, planning committee meetings, and facilitator training sessions, involving over 50 stakeholders. The results from the various chapters included in this dissertation provide an example of the complexity inherent in working with such a ‘hidden’ population of adolescents. They identify priority program needs for the local population of HIV-positive children which include targeting areas of HIV stigma, sexual health, and mental health in adolescence and beyond. They show that partnerships such as this are challenged by factors such as technical, socio-political, and ethical quagmires. Findings from international ‘experts’ demonstrate that services targeting this population require multifaceted strategies for successful programs and that further examination of stigma opens upon a world of silences with intricate functions and meanings. This dissertation is one of the few existing published works that incorporates the use of community-based partnership research and program development with a population of adolescents living with perinatally-acquired HIV. Implementing interdisciplinary, creative and engaging health promoting research strategies is a step towards decreasing inequities through marrying knowledge generation and program development.

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