Critical issues in community-based participatory research.

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This thesis uses a case study approach to explore critical issues in Community-Based Participatory Research (CBPR). A compendium of three sub-studies focusing on The Positive Youth Project (PYP) is presented.CBPR is a promising approach; however, we need to continue to monitor who benefits (and how) from these changes (and at what costs). For CBPR to become an emancipatory enterprise (or at the very least one that works to address disparities in health), care needs to taken attend to the vulnerabilities of all those involved.Sub-study 1. PYP adopted a CBPR approach to investigate Internet acceptability as means for health promotion among HIV-positive youth. Thirty-five qualitative interviews and brief surveys were conducted. Data were coded using NUD*IST QSR. Five themes emerged: (1) high rates of Internet use; (2) concerns around privacy; (3) communication and entertainment are main reasons for Internet use; (4) seeking health information online is rare; (5) enthusiasm for a "one-stop shopping" e-Health site. The onus is on e-Health developers to create relevant content.Sub-study 3. Fourteen PYP stakeholders were interviewed on two occasions about their perspectives on project involvement. Data were coded using NUD*IST QSR. Youth felt the project built their self-esteem, skill sets, and enhanced their disposable income. Community-based organizations benefited through new partnerships, grant sources and service delivery models. Academic researchers highlighted new grants, research partners, publications, and career advancement. Costs to project partners included: heavy demands on time, an added burden of work, frustration with the process, missing other opportunities, potential loss of anonymity and loss of control. Care needs to be taken to ensure that concrete benefits accrue for all project partners, and that these benefits outweigh associated costs.Sub-study 2. Three options for dealing with misrepresentation in a qualitative CBPR project are presented: omit the data, treat data cautiously, and include data regardless. Theoretical, epistemological and methodological challenges of each approach are discussed. Given the CBPR context of the study, a larger stakeholder group was consulted to inform decision-making. It decided to include the data and treat it cautiously.

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