The state plan was the product of the Indiana Coalition to Improve Adolescent Health (ICIAH), a group of youth serving agencies, government departments, healthcare providers, and educators (ICIAH and ISDH, 2009). Its goal was to provide a blueprint for policymakers, specifying adolescent health priorities and metrics to measure progress. However, as the plan progressed, it became clear that missing from the coalition were the voices and agency of adolescents.
To capture youth perspectives, we conducted focus groups across Indiana, speaking with adolescents about the aspects of health and health promotion most important to them (Ott et al., 2011). We met with adolescents with diverse life experiences, conducting focus groups in different regions, with adolescents of different ethnicities and genders, and from different socio-economic contexts. Groups met in the state capital, rural areas, an aging industrial city, and a college campus.
Why Involve Adolescents in the Policy-making process?
Health is placed in a broader developmental context. Because of adolescents’ emerging capacities and independence, it is tempting to focus on individual responsibility for behavior change. However, adolescents are embedded in families, schools, and communities. Most are not self-sufficient, and are dependent upon the adults and social capital in their lives to support healthy behaviors. Consistent with social-ecological approaches (Bronfenbrenner, 1986), adolescents were clear that they needed healthy environments and supportive adults to be healthy themselves.
Adolescents provide new perspectives, ones that policy-makers may have not previously considered. Because of their somewhat unique developmental perspective, adolescents conceptualized health issues quite differently than adult service providers and policy-makers. For example, for Indiana adolescents, the two core mental health issues were stress and fatigue. For adult ICIAH members, core mental health issues were anxiety and depression. These are quite different. Anxiety and depression are individual pathologies, whereas, stress and fatigue are interactions between the youth and the environment. The treatment of anxiety and depression are medication and therapy; stress and fatigue requires structural changes in the adolescents’ environments.
Involving youth can improve the relevance of youth health education and risk reduction messages. When a group has a role in decision-making, those decisions are likely to be more relevant to that group. We saw this clearly with health education messages. Participants made it clear that they were capable of understanding more complex risk reduction messages. Oversimplified messages (such as “Just say no to alcohol and drugs”)
How to involve youth?
The benefits of youth involvement beg the question of why we would consider making policies, creating programs, or doing research without involving youth. The answers are not surprising – cost and efficiency. To do meaningful work with youth, it requires staff and time to recruit and train youth (Klindera and Menderweld, 2001). Unfortunately, policy and research frequently have very limited lead time and budget. However, with some creativity and forethought, it is often possible to involve youth. Tips include the following:
Examine our own assumptions about youth capacity. By approximately age 14, youth make decisions in a manner similar to adults (Kuther and Posada, 2004); As youth gain life experience and progress through adolescence, that capacity expands. We found that youth were capable of, and in fact expected to be, treated like collaborators.
Move youth from informants to leaders. The ideal is to have youth at the table as co-decision-makers (Klindera and Menderweld, 2001). The reality is that there is a wide spectrum of youth involvement. In our focus groups, we only asked adolescents for input (and even this limited role was helpful!). Others, such as the Advocates for Youth, have been successful in hiring older adolescents and young adult “near peers” in decision-making roles (Klindera and Menderweld, 2001).
Account for developmental level. Younger adolescents need more support and structure, older adolescents can operate in a more independent and collaborative manner.
Bring youth in early. The earlier youth can be brought into the process, the bigger the impact. An example from our work is the Indy Teen STRONG Project, a research study examining sexually transmitted infection (STI) screening in community settings for adolescent boys. Adolescent boys are an understudied group, and less is known about uptake and acceptability of STI screening. Therefore, my team created a teen advisory board consisting of 14-18 year old boys. The advisory board met bi-monthly across the length of the project, and provided solutions to challenges such as accessing hard to reach boys, making consent forms youth-friendly, and survey incompletion.
All of these approaches are built upon a view of youth not as a liability, or even as a future asset, but as a here-and-now resource. If those of us who work closely for and with youth can make this philosophical shift, youth involvement will necessarily follow.
Author :Dr Mary Ott Associate Professor of Pediatrics Indiana University School of Medicine
Bronfenbrenner, U. (1986). Ecology of the family as a context for human development: Research perspectives. Developmental Psychology, 22 (6): 723-742.
Indiana Coalition to Improve Adolescent Health and Indiana State Department of Health Adolescent Health Program (2009). Picturing a Healthier Future: A State Strategic Plan for Indiana’s Adolescents. 5 April
Klindera, K., Menderweld, J. (2001). Youth Involvement in Prevention Programming. Advocates for Youth: Washington, D.C.
Kuther, T.L., Posada, M. (2004). Children and adolescents’ capacity to provide informed consent for participation in research. Adv Psychol Res, 32: 163-73.
Ott, M.A., Rosenberger, J.G., McBride, K.R., Woodcox, S.G. (2011). How do adolescents view health? Implications for state health policy. J Adolesc Health, 48 (4): 398-403.
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