Youth Voice
Participants expressed a desire to have a voice on all levels of decision-making, from state policies to local programs to individual-provider interactions. Participants described feeling engaged when their opinions were sought, and disengaged when their opinions were disregarded. They felt that their experiences should be a part of the planning process:
“Cause a lot of times they say that, but they don't give a shit what we think. They're like ‘Oh this is good for them, let's do this.’ We are different people, we have different thoughts, and we are unique in every aspect of everything.”
19 year old male
The following analyses are based upon this perspective of adolescents as “experts” about their own health.
Conceptual Model: Three Levels of Health
When asked, “What makes a teen healthy?,” all participants initially stated well known risk behaviors and morbidities such as obesity, smoking, drinking, and unprotected sex. However, on further discussion, it became clear that nearly all viewed health as a much broader construct. Across focus groups, we observed three consistent aspects of discussion about health: an individual level, a relationship level, and a contextual level (see ).
Individual-Level Factors
At the individual level, participants identified common morbidities and risk behaviors: (1) obesity, (2) stress and fatigue, (3) alcohol, tobacco and substance use, (4) sexual behaviors, sexually transmitted infections (STIs), HIV and adolescent pregnancy, and (5) violence and personal safety. This list was similar to the CDC's 21 Critical Objectives, with two important distinctions.
First, nearly all participants (6 focus groups) highlighted the complex interrelationships between risk and protective factors and morbidities. A participant describes the interplay between alcohol, stress, school, and future aspirations:
“People want to experiment and that's part of your life. But you're being stacked with all this stuff that's supposedly going to be the foundation for the rest of your life. So you're doing things that are gonna take you away from that and then expecting to rise to that occasion at the same time. And, the stress of all that leads some people more in the direction [of alcohol use] because they need a release. It's a balancing act between what you want to do and what you're supposed to do.”
20 year old male
Second, across all focus groups, participants described mental health issues differently. While policy makers focus on depression and anxiety, diseases within individuals [
5], adolescent participants described stress and fatigue, an interaction between an individual and their environment. A participant describes juggling school and work:
“….you don't ever get a break. It's a constant stress….like oh I have to get this done. Oh, but that's done now I have to get this done. It's like so like, draining and you just drone on in the same sort of like, deadlines….it really does mess with you.”
19 year old male
Relationships
Supportive relationships with family, schools and community members were considered necessary to initiate and maintain healthy behaviors, and to create a healthy environment. These relationships provided a connection, remained positive and non-judgmental, and respected the adolescent's evolving abilities. A participant describes the importance of adult support for losing weight:
“Someone to help motivate them, keep them going, cause after awhile you just get burnt out on it. You don't have anyone motivating you and….[exercise and sticking to a diet] just gets boring and everything”
17 year old male
An adult who provided a connection talked about difficult issues, lived through similar life experiences (e.g. poverty, drug use, school failure), and expressed an interest in listening to adolescent's issues:
“I have a pastor at my church that's really good… he was the rock n' roll type, you know the partying type. He finally turned his life around. He helps all of the youth at our church. Any kind of problems they have got, he has been through it.”
16 year old male
Participants also differentiated adults willing to “talk with” adolescents as opposed to “talk to” them.
It was important for adults to be positive and non-judgmental. All participants spoke of the importance of feeling valued and having adults encourage their self worth. Examples ranged from receiving a simple compliment to being provided with feedback without being criticized. Participants were particularly sensitive to stigma and shame, as illustrated by this parenting adolescent's description of a teacher who commented on her decision to have a child:
“I mean, like don't use your personal judgment on my schooling. When I'm in school that's my focus. Yeah, I have a kid, but I'm here to learn….Your job is to teach me. You're not getting paid to criticize me about having a kid at my age.”
16 year old female
A third characteristic was respect for adolescents' evolving decision-making capacity, especially as it related to the healthcare setting. Adolescents who were able to provide input into their treatment described being more invested and engaged:
“At the counseling center they totally give you the option. Do you wanna be prescribed something or do you wanna go a different route? I totally said different route. The stuff they worked on, like breathing techniques and stuff, I feel totally work a lot better than just being put on something.”
19 year old female
In contrast, when adolescents' input and preferences were not acknowledged, participants described feeling disengaged from provider and their treatment.
Parents were considered the most important people in supporting healthy decision-making and outcomes. Criticism was acceptable, if the parents remained supportive:
“If your parents or your friends they support you, they basically have your back. Or they don't have your back, and they should give you positive criticism if criticism is needed. Nobody wants to be down all the time. You need that type of support and encouragement.”
17 year old male
Peers, teachers, and other adults were called upon in situations where the parent was unable to provide support, or the adolescent was uncomfortable asking. Topics generally involved relationships, sex, contraception, or substance use.
Participants varied in the amount of responsibility they placed upon an individual for their own behaviors and health, versus the responsibility they placed upon adults and environments. Conversations with some participants (particularly those from higher income groups) reflected a tension between the individual versus the collective responsibility. Here a participant recognizes individual responsibility, but also the important role of adult support, regardless of poor decision-making on the part of the adolescent:
“The way she talks to you, she keeps it real. She be like ‘You do this, you do this you gonna have these consequences. But if you need somebody even if you make a mistake, you can come to me.’ See, people don't say that, they just tell you your mistake and your consequence.”
17 year old female
Environment and Contexts
All focus groups identified their environments, i.e, physical, financial and informative as critical to initiating and maintaining healthy behavior.
Physical Environment The physical, or built, environment included the structure of, and the way people use neighborhoods, schools, buildings, roads, and green-space. Participants described their physical environment as either health promoting or inhibiting. One participant described safety concerns walking between home and work:
“I used to live close to my job and I didn't have a car so I would walk over there but I didn't like it because there were no sidewalks. I had to walk on top of the grass.”
16 year old female
Participants linked the presence or absence of a physical environment conducive to exercise and with access to healthy foods to obesity. Lower income participants described a lack of green space and public transportation, little access to grocery stores or restaurants with healthier food options and physically unsafe neighborhoods.
Participants who lived in areas marked by violence and crime, described risks of physical injury, emotional stress, and lack of physical activity as characteristics of the environment with multiple impacts on health. A 17 year old male describes the limitations of this type of environment for those not directly involved in violence:
“I used to stay outside past a certain hour, but thanks to people around my neighborhood, stayin' outside went out the window. People stay on the Internet all the time.”
17 year old male
Financial and Other Resources Resources included family income, neighborhood and school amenities, and access to health care. Like the physical environment, participants identified their families' financial contexts as health promoting or inhibiting. Several participants described needing to work to contribute to family income or to support themselves. Several described time and stress related to this:
“If you're working however many jobs and school and everything, you don't have time to make healthy foods…You throw a hot pocket in the microwave before you leave for work.”
16 year old male
Others described parents working long hours and having no-one at home to cook meals or provide support.
Access to health insurance and quality health care providers were identified as important resource issues. Some participants mentioned only having access to emergency departments. Others said that cost was a barrier to necessary services. A college freshman said,
“When I turned eighteen I didn't have [Medicaid] anymore. If I go to the doctor I pay. The only reason I have any coverage is because my mom gets a little bit of insurance through work. So most of the time I'm sick I don't go to the doctor.”
Informational Environment Participants described concern the health information provided by schools, programs, parents and other adults. They placed a priority on honesty and truthfulness, and described multiple scenarios in which they felt that honesty and truth-telling had been compromised. Participants were skeptical of over-simplified messages around sexual behavior, drugs, and alcohol use, and generally felt that harm-reduction approaches were most appropriate. “Just say no” approaches were felt to be unhelpful, and did not reflect the complex reality of alcohol and drug use among adolescents:
“I mean, you can tell them it's better to just not [drink], but I think the best way, especially in our generation, is to teach them how to be safe while they're doing something like that. Not to do stupid stuff.”
16 year old male
Respect for youth and their decision-making capacity was perceived to be important. Participants wanted to be treated in a serious, respectful way:
“Last year, this family came [to school] and juggled and did circus acts, and then they're like, “Don't have drugs! So you can do what we do.” I think it was almost worse than actually helpful. I think it's better for someone to just be serious with them, someone from a town or a place like theirs and just be serious and talk to them.”
17 year old male
Comments were similar for information about sex, pregnancy, and STIs. Participants preferred harm reduction approaches that acknowledge the reality of adolescent sexual behavior. They described the need for information and skills, instead of scare tactics:
“They say you need to be abstinent but it doesn't help. They should spend more time showing how to do it safely instead of saying not to do it.”
16 year old male
Most participants expressed a preference for a complex harm reduction message over a simple proscriptive message. This participant felt that sex education should acknowledge the positive aspects of sex as well as the risks:
“Yeah, keep it real…I hate when people be like ‘don't have sex, it is not for you’. I want someone to tell me sex is ok, but if you do this make sure that you do it this way. I am for real, say sex is good just wrap it up.”
18 year old female
Participants were attuned to contradictory health messages. This is illustrated by several participants' observations that many schools allow soda machines, but advise against soda in their health curricula:
“You see it, you walk around the school. They say ‘Oh, you guys can't buy sodas,’ but there are soda machines everywhere. Why would they have them if they don't want us to buy them?”
16 year old female