Youth participation and leadership in the fight against HIV/AIDS: ICAAP and beyond

With over 3,000 delegates in attendance the International Congress on AIDS in Asia and the Pacific (ICAAP) opened with speeches from a number of distinguished delegates in the field of HIV/AIDS. The speakers, although coming from a variety of different regions and backgrounds, championed a common theme: the importance of community leadership and youth involvement in the fight against the HIV/AIDS epidemic. The speakers’ persistence that community and youth groups (commonly referred to as “the next generation”) must lead the movement against the epidemic inspired consideration of several points related to the involvement and potential contributions of youth and community in paving the way toward a zero infection rate. Much research has been conducted on community participation in the research process, growing alongside the recognition of community-based participatory research as a significant part of the research process. However, surprisingly, much less attention has been awarded to the subject of youth participation in driving social change. Particularly, the focus here will be on the potential impact of youth leadership in HIV/AIDS prevention.

The urgent call to action conveyed by the speakers and targeted toward youth groups (among others) to lead the fight against HIV/AIDS is echoed in the literature on adolescent involvement in knowledge translation (dissemination, sharing) related to the HIV/AIDS epidemic. For example, Walsh, Mitchell, and Smith (2002) believe that “youth participation and agency, though often overlooked, is key to any attempt to halt the rising [HIV] infection rates in young people” (Walsh et al., 2002, p. 106). Similarly, Campbell, Gibbs, Maimane, Nair, and Sibiya (2009) maintain that the “involvement of young people is seen as a precondition for successful HIV/AIDS management and has become a central pillar of international AIDS policy” (UNGASS, UNICEF, & UNAIDS as cited in Campbell et al., 2009, p. 94). A pervasive theme of ICAAP11 is youth leadership and advocacy, reflecting Walsh et al.’s positioning of young people as both producers and consumers of knowledge and emphasis on capturing and harnessing youth culture toward a public health objective such as reaching zero infection rate of HIV (Walsh et al., 2002). Also important is the provision of ‘space’ for youth to act (Walsh et al., 2002, p. 110). Although recognition has been given to and steps have been taken toward involving youth groups in interventions advocating for policy change, Campbell et al. (2009) also mention a few barriers to youth participation in HIV/AIDS management: (1) the impact of adults in undermining youth participation, (2) the limited support for youth organizations from external agencies, and (3) the lack of incentives for youth to participate (Campbell et al, 2009, p. 106). Future research in this area should focus on possible methods to overcome such barriers, especially and specifically in the context of HIV/AIDS.

Finally, it is also worth considering the potential role of the knowledge broker in partnerships with vulnerable communities. Conklin, Lusk, Harris, and Stolee (2013) highlight the role of the knowledge broker as “bridge builders” who “link researchers who produce scientific knowledge and practitioners who produce experience-based knowledge with knowledge users” (Conklin et al., 2013, p. 8). (For more on the role and responsibilities of the knowledge broker, please see the resources below.) Generally, research on knowledge brokers focuses on their role in relationships between researchers and policymakers, although it is uncertain whether they can play a contributive part in the knowledge translation/sharing process between researchers-policymakers and members of youth organizations or vulnerable communities.

Resources

Dobbins, M., Robeson, P., Ciliska, D., Hanna, S., Cameron, R., O’Mara, L., DeCorby, K., & Mercer, S. (2009). A description of a knowledge broker role implemented as part of a randomized controlled trial evaluating three knowledge translation strategies. Implementation Science, 4(1), 23-31.

Russell, D. J., Rivard, L. M., Walter, S. D., Rosenbaum, P. L., Roxborough, L., Cameron, D., Darrah, J., Bartlett D. J., Hanna, S. E., Avery, L. M. (2010). Using knowledge brokers to facilitate the uptake of pediatric measurement tools into clinical practice: a before-after intervention study. Implementation Science, 5(1), 92-108.

Waqa, G., Mavoa, H., Snowdon, W., Moodie, M., Schultz, J., McCabe, M., Kremer, P., & Swinburn, B. (2013). Knowledge brokering between researchers and policymakers in Fiji to develop policies to reduce obesity: A process evaluation. Implementation Science, 8(1), 74-84.

References

Campbell, C., Gibbs, A., Maimane, S., Nair, Y., & Sibiya, Z. (2009). Youth participation in the fight against AIDS in South Africa: From policy to practice. Journal of Youth Studies, 12(1), 93-109.

Conklin, J., Lusk, E., Harris M., & Stolee, P. (2013). Knowledge brokers in a knowledge network: The case of Seniors Health Research Transfer Network knowledge brokers. Implementation Science, 8(1), 7-16.

Walsh, S., Mitchell, C., & Smith, A. (2002). The Soft Cover project: Youth participation in HIV/AIDS interventions. Agenda: Empowering Women for Gender Equity, 17(53), 106-112.

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