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Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop (2020)

Chapter: 5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs

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Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Page 62
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Page 63
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
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Page 64
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 65
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 66
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 67
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 68
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 69
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 70
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 71
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 72
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 73
Suggested Citation:"5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs." National Academies of Sciences, Engineering, and Medicine. 2020. Developing Health Literacy Skills in Children and Youth: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: 10.17226/25888.
×
Page 74

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5 Partnerships and Community: Working with Youth and Their Communities to Address Their Health Literacy Needs The next panel of the workshop was moderated by Elaine Auld, chief executive officer at the Society for Public Health Education (SOPHE). Auld introduced the three panelists: Hannah Lane, medical instructor, Duke University School of Medicine Department of Population Health Sciences; Rory Parnell, principal, August Martin High School, New York City Department of Education; and Sneha Dave, a student at Indiana Uni- versity studying chronic illness, advocacy, and journalism and founder of the Health Advocacy Summit (HAS) and its program, Crohn’s and Colitis Young Adults Network. The panel was charged with exploring the importance of partnerships and intersectoral work to develop health literacy skills among youth. DEVELOPING YOUTH PARTICIPATORY RESEARCH Hannah Lane, Duke University School of Medicine Youth participatory research is a research process that draws equally on the expertise and resources of researchers and youth community mem- bers. Youth and adults recognize each other’s unique strengths, combine their collective knowledge, and take action to improve the conditions of young peoples’ lives and communities through research. Youth participa- tory research is driven by five key principles: 1. Youth opinions are solicited, respected, and applied. 2. Youth identify their own issues, problems, and possible solutions. 61 PREPUBLICATION COPY—Uncorrected Proofs

62 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH 3. Youth initiate project ideas, carry out goal setting, planning, and action. 4. Youth drive the process and are involved in all states of decision making. 5. Youth teach and empower other youth. Civically engaged youth are less likely to participate in health-­ amaging d behaviors. Including youth voices results in more appropriate youth-focused health prevention and intervention programs. This is especially true for communities that face stark health inequities, who may have skepticism toward outside programs, or who have deep mistrust of health care profes- sionals. Youth engagement in participatory research also builds skills in strategizing, critical thinking, leadership, communication, and a sense of community responsibility. Some benefits of youth participatory research include 1. Participation as researchers helps build health literacy skills. 2. Partnering with young people helps researchers stay relevant. 3. Young people can help researchers design age-appropriate measures. 4. When young people drive the data, adults listen. The Kids SIPsmartER (KSS) Study is illustrative of these benefits. Con- ducted in the Central Appalachian region of Virginia, the study focused on sugar-sweetened beverage (SSB) consumption. Children and adolescents in this highly rural, highly medically underserved region consume three to four times the amount of SSBs compared with the average American, but few intervention efforts had been attempted. The study aimed to engage children in a participatory research process to build local capacity for SSB- focused programs and adapt an existing health literacy–based curriculum for adults; the sample included nine rising 6th through 8th graders in a small Central Appalachian Virginia community. The theoretical framework for the curriculum was guided in part by the adult intervention, which focused on the theory of planned behavior, health literacy, and media ­iteracy. Researchers added public health literacy, a concept developed in l 2009 by Darcy Freedman, which encourages understanding information ­ to make public health decisions that benefit an entire community, under- standing health disparities, and understanding that kids can play a role in eliminating those disparities. An adult community advisory board helped researchers recruit a group of kids, who they called Youth Ambassadors. The ambassadors attended a summer camp to help researchers adapt the curriculum, helped with the feasibility testing of the curriculum as well as some of the intervention delivery, and planned and executed a community advocacy event. Last, the Youth Ambassadors attended a few meetings PREPUBLICATION COPY—Uncorrected Proofs

PARTNERSHIPS AND COMMUNITY 63 of the adult community advisory board to provide testimonials on their experiences. During the week-long summer camp, researchers delivered the six KSS lessons, pausing after each one to solicit feedback from the Youth Ambas- sadors. The researchers used structured forms and discussions to help the middle school–aged participants provide input, asking what they liked and did not like, what they learned, and more pointed questions about what they might improve. The researchers also asked the Youth Ambassadors to review the measures the researchers had planned and highlight any items that they did not understand or that they thought might be confus- ing to their peers. The researchers conducted focus groups and surveys with the Youth Ambassadors at the beginning and end of the camp to see if the learning objectives targeted in the curriculum were satisfied, and f ­acilitated some brainstorming among the Youth Ambassadors about how they wanted to continue to build capacity in their community. During the feasibility study, conducted at a middle school in the region, the Youth Ambassadors helped researchers with some of the intervention delivery, including automated phone calls, writing and recording a public service announcement (which was included as a media literacy lesson), and helping with other general intervention delivery elements. In preparation for the community advocacy event, the Youth Ambassa- dors designed a flier. They selected the most relevant information they wanted to include and distributed the flyers at a local grocery store with sugar-free hot chocolate samples. They also tracked who they spoke with and their responses. The researchers found that right after the summer camp, the Youth Ambassadors recognized the health effects of high rates of SSB on their community, and they had many ideas about communicating that message through environmental changes to improve their community’s health. Although the Youth Ambassadors were initially less sure about their role in improving their community’s health, their confidence increased with each conversation and brainstorming discussion, as did their understanding that this public health threat to their community was not inevitable. They developed a critical public health literacy skill: They believed that public health issues were not inevitable and that they had agency and power to help address them. At the end of the KSS study and year, follow-up interviews revealed that the Youth Ambassadors continued to learn more about the excessive intake of SSB in their community. They continued to pay attention and they continued to associate SSB consumption with adverse health and environ- mental outcomes, and they understood the costs beyond health. The Youth Ambassadors were also confident that they could make a difference and reduce the problem long term, and many of them felt they had already made PREPUBLICATION COPY—Uncorrected Proofs

64 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH a difference. They were proud of their contributions in helping deliver the interventions to their school, and also felt they had made a difference at home with their families. They felt they had learned the skills they needed and gained the confidence to continue to advocate for reducing SSB in their community. Not only does participation in research build the skills targeted by the intervention the youth are meant to help develop, it can also lead to additional exposure to the importance of healthy behaviors and the costs of unhealthy behaviors for individuals and communities. It can also build capacity for skills like problem-solving, communication, and leadership. Finally, it can encourage kids to become advocates for others to understand the adverse health outcomes others might experience even if they do not experience these outcomes themselves. Another benefit of participatory research is that partnering with young people helps researchers stay relevant. It ensures that materials reflect real- ity in a fast-changing world, and that they are interesting, and combat misinformation as a trusted resource. Having youth involved in the devel- opment process also generates hype within the community, so researchers were more easily able to recruit youths for the second phase of the study. Youth research participants help researchers design age-appropriate measures, ensuring that tools are relevant, understandable, and measure what is intended. They can also provide creative ideas to improve read- ability and make data collection more fun. Some common examples among young people include Photo Voice, apps, reflection journals, mapping, and community surveys. Also, when data collectors are peers, youth are more likely to respond with enthusiasm. Youth participants collecting data and providing interpretation of the data increases the relevance, ensures information is shared with appropriate parties (the community advisory board, the middle school board), and can improve relationships, respect, and trust between youth and adults. Youth driving data can also increase the belief that programs should be expanded and institutionalized or well-funded. For example, in KSS, the community advisory board was enthusiastic about the SSB efforts but skeptical about scaling. They were only convinced to fully support the expansion of the project after several of the Youth Ambassadors came to the advisory board meeting to share their experiences and explain how it had built their skills and affected their health behaviors. Youth participatory research is crucial but not without its challenges. It is time and resource intensive, especially to scale. Researchers must provide incentives, transportation, food, and prizes, all of which would be difficult to do on a larger scale. Youth will also age, and their interests and moti- vations may shift over time. Also, when conducting youth participatory research, the sample may not be representative of youth with the highest need. In that vein, it is important to authentically engage youth, and not PREPUBLICATION COPY—Uncorrected Proofs

PARTNERSHIPS AND COMMUNITY 65 BOX 5-1 Best Practices for Youth Participatory Research Identified by Hannah Lane •  nderstand the readiness of the community organizations that will be U involved. •  ake sure research team members are well trained in youth participatory M research principles and that you have a plan in place to deal with turnover of adult staff. •  e realistic about your time frame based on your budget, age group, loca- B tion, and priorities, and be transparent if things are not going as planned. •  ffer youth multiple ways to participate and be clear on specific tasks. O •  onitor the implementation process, make adjustments if necessary, and M share your successes! SOURCES: Adapted from a presentation by Hannah Lane at the workshop on Developing Health Literacy Skills in Children and Youth on November 19, 2019; LPC Consulting Associates, Inc., 2012. tokenize them to further a project. Lane’s best practices can be found in Box 5-1. WORKING WITH PARENTS, STUDENTS, AND COMMUNITY ORGANIZATIONS TO IMPLEMENT HEALTH LITERACY IN A SCHOOL Rory Parnell, August Martin High School, New York State Department of Education Parnell was presented with the opportunity to become principal of August Martin High School (AMHS) in 2015. At the time, the school was formally labeled as “out of time,” and slated to close its doors. It was consid- ered persistently dangerous and persistently struggling. It was also recognized as the least chosen high school in New York City. It was a less than ideal principalship for Parnell, but she could not reconcile the idea that children would need to travel even further to get to school, or the idea that closing the school was the solution. Students at August Martin High School are referred to as scholars. Two-thirds of AMHS scholars are Black, and most of them live in displaced housing. Many of them began grade 9 with a reading level between grades 4 and 6. AMHS scholars have working parents, three or more siblings in PREPUBLICATION COPY—Uncorrected Proofs

66 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH their household, and travel between 45 minutes and 2 hours using multiple modes of public transport to get to school. When AMHS graduates go to college, they are likely to be the first in their family to attend. What never makes it into the demographic profile of AMHS scholars is their “unquan- tifiable resiliency that is innate in each of their spirits,” said Parnell. Before Parnell became principal of AMHS, 98 percent of AMHS par- ents did not engage in school activities, and less than two-thirds of scholars attended school on average. Additionally, in a school of 550 scholars, 174 had long-term absences, meaning they had 10 or more consecutive days of absences, or they had never attended at all. The year Parnell started, the June graduation rate was about 24 percent, scholars had no access to mental health services within the school building, and there was one school nurse who was available 3 days per week. The social, emotional, physical, and academic challenges that AMHS scholars faced needed to be met with a triangulation of support (see Fig- ure 5-1). Closing the achievement gap academically required closing the FIGURE 5-1  Health literacy partnership to close the access gap. NOTE: CBO = community-based organization. SOURCE: As presented by Rory Parnell at the workshop on Developing Health Literacy Skills in Children and Youth on November 19, 2019. PREPUBLICATION COPY—Uncorrected Proofs

PARTNERSHIPS AND COMMUNITY 67 access gap to health literacy: The language of academics would depend on the language of health in order for AMHS to achieve its mission to inspire lifelong learners, and not just by sustaining life for youth but by enabling a high quality of life for them. To this end, AMHS utilized two main partner- ships: a community-based organization (CBO) and a medical health clinic. Parnell replaced between 10 and 15 CBOs that were already affiliated with the school, but who focused their services on extracurricular engagement, and replaced them with one CBO, whose sole focus was on the social and emotional welfare of youths, the Child Center of New York (CCNY). CCNY was also rooted in Jamaica, Queens, and familiar with the needs of the youth in the community. In an effort to support the school’s turnaround, the Cohen Children’s Medical Center (CCMC) collaborated with the school construction author- ity to open a medical clinic on the campus. Together, AMHS worked with CCNY and CCMC to create the support the scholars and their families needed. CCNY offered vision screening and free eyewear, as well as family and individual counseling. They also provided support groups during lunch, including gay–straight alliances, mindfulness, yoga, leadership, and con- flict resolution. They provided immigration services and clinics for AMHS families, along with relationship abuse prevention, attendance outreach and interventions, and home visits with the school to help scholars reengage. They also provided nutritional snacks, breakfasts, lunches, and dinners for scholars. CCNY also offered a restorative justice advisory whereby scholars participated in reflective processes to create action plans for their behavior as opposed to suspending them. CCMC provided physical and behavioral health services, right on cam- pus. This allowed students to have materials and regular services accessible to them, including physicals for school or sport registration or job appli- cations, immunizations, urgent visits for illnesses and injuries, laboratory screenings, reproductive health care, chronic illness care, weight manage- ment and nutritional counseling, HIV and sexually transmitted infection screenings, pregnancy screenings, diabetes care and management, health education counseling, and specialist referrals. The mental health services provided included clinical assessments and evaluation; individual, group, and family therapy; reproductive health counseling; crisis intervention; classroom education; and trauma-informed care. CCNY and CCMC aligned their values with the values the school embedded in its learning community: • High expectations academically, socially, and emotionally • Scholar-centered (voice, choice, and leadership) • Unity: uniform, community gatherings PREPUBLICATION COPY—Uncorrected Proofs

68 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH • Academics: college and career, music and art • Restorative justice: scholar ownership • Hands-on leadership • Extended learning • Trust All teachers, school partners, and administrative faculty now know the names of every single child in the school. Two scholars also sit on the Food Scholar Advisory Council, where they can decide whether the meals that scholars are receiving throughout the district and city are nutritional enough to meet their needs for a good quality of life. AMHS supports families by offering workshops on nutrition, stress management, and “who their child is,” exploring challenges to academics. AMHS also offers family counseling so that parents, families, and community members can come throughout the year to build trust and relationships. To create a true health literacy partnership, the AMHS community had to come together with reciprocal commitments from CCNY and CCMC. The changes have been remarkable. The first community school forum saw seven families show up; 4 years later, 347 families attended. The graduation rate increased from 24 percent to 84 percent. Health literacy may not be a familiar concept for everyone who teaches, but it is still important to incorporate it into education. Well-developed health literacy skills open the door for overall improved health and well- being for children as they grow into adults: It is a skill set that can inspire lifelong advocacy. FINDING COMMUNITY AND DEVELOPING SELF-ADVOCACY SKILLS Sneha Dave, Indiana University, Healthy Advocacy Summit Dave was diagnosed with ulcerative colitis at age 6. In middle school, the disease became so severe that she had colectomy surgery, along with multiple follow-up surgeries in a period lasting through the middle of high school. As Dave transitioned to adulthood, she realized there was not enough support for young adults living with invisible conditions, whether it was emotional, social, vocational, educational, or institutional sup- port. She knew that young adults with chronic conditions have a period of incredible instability as they transition to independence. They have more autonomy, sometimes resulting in breaks in medical follow-up and non-adherence to treatment. Transition and transfer into adulthood is a period of immense change, and she knew this demographic had often been forgotten or left out. PREPUBLICATION COPY—Uncorrected Proofs

PARTNERSHIPS AND COMMUNITY 69 In mid-2017, Dave decided to hold an event in Indianapolis to bring together young adults to discuss important topics, such as navigating the school system, and what transition looks like from high school to college and how to register with disability student services. The first event was held in October 2017, and the event grew into HAS. It received inquiries from all over the United States, reinforcing Dave’s belief that there is a vast unmet need to connect and share resources among young adults with chronic health issues. Though originally based exclusively in Indiana, HAS now has chapters in several states with plans to expand further throughout 2020 and beyond. HAS is a first-of-its-kind organization that focuses on peer connection, advocacy, and access to educational information and resources as funda- mental pathways to empowerment. The summits are a way to connect with peers, as well as a way to learn concrete tools and resources to use during transition through the school system and into the workplace. The summits focus on adolescents and young adults between ages 13 and 30. In many ways, living with a chronic condition can render someone “ageless.” For example, many young adults lost years-long periods of their childhood or adolescence with their condition, and they might be complet- ing their undergraduate degree when they are 28 years old, or they might still be in school, taking periodic breaks. Thus, addressing transition topics should extend beyond their early 20s. HAS is led entirely by young adults with chronic and rare diseases. The summits are exclusive to young adults, which provides a safe space for attendees to share their challenges. Some have compared this experi- ence with serving on a patient advisory council, and reported that at the summits they have been able to share a lot more and be more honest about what they need. In 2018, HAS expanded to North Carolina and Texas, and in 2019, added California. Once a summit is developed in a state, the goal is that it will sustain indefinitely, so HAS volunteers and staff work to foster a com- munity and shared connection. Their advocacy is focused on a variety of topics, and the topics change each year. They have previously included health care policy and legislative initiatives. HAS provides ways for attendees to ­ not only engage in personal advocacy but also advocate for their community and for their peers. For example, at the 2019 Indiana summit, a representa- tive from Patients for Affordable Drugs spoke about drug pricing and how attendees can get involved in advocating for a better system that works for patients. HAS also hosts speakers who focus on vocational rehabilitation and counseling. The HAS team has observed that their summit attendees tend to seek out disability student services when they already have an issue, and it can take up to 6 months to actually get accommodations. Attendees are PREPUBLICATION COPY—Uncorrected Proofs

70 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH also sometimes unaware of their rights to accommodations, or that they are covered under the Rehabilitation Act of 1973, and the Americans with Disabilities Act. HAS events also address issues like workplace disclosure, including how individuals with chronic illnesses in the workplace have approached a conversation with their employer to discuss their illness. These presentations and discussions extend to the potential additional burden of disclosing an invisible illness to an employer, particularly if it is cyclical. These are complex topics about which attendees really appreciate being able to hear from their peers. Summit discussions also include Supple- mental Security Income, and possible options for those who are unable to work, along with addressing mental health issues like anxiety and depres- sion, both of which are common among young adults with chronic illnesses. This is another reason why those who do not have a chronic health condi- tion are not allowed in the summits: Attendees are able to open up about emotional barriers and isolation they might face when they are young and have a chronic illness. Summit discussions range from health insurance and managing care across states to pain management and communication strategies. Com- munication strategies are particularly helpful for the younger adults just transitioning to self-management. They start to think about how to pre- pare for a doctor’s appointment, what types of questions to ask, and more. Additional topics include recreational therapy and maintaining reasonable levels of activity post-diagnosis. The HAS community is also passionate about health policy literacy and transparency to ensure that the next generation of patients have a voice in the health care system and for policy issues that most affect them. HAS runs the Crohn’s and Colitis Young Adults Network, which facilitates an international fellowship program for young adults living with inflam- matory bowel diseases. In the coming years, they also have plans to roll out increased online programing, health equity initiatives, and a different overarching organization to encompass all of their programming for young adults. DISCUSSION Catina O’Leary from Health Literacy Media asked Dave how HAS navigates a situation in which someone’s lived experience does not match medical accuracy. She asked, “How would you advise older adults with privilege and power on navigating that? How can we do better based on what you have learned?” Dave noted that while HAS sessions are all peer led, some more tech- nical topics are led by social workers, as attendees seem to trust social workers much more than doctors or other health care professionals. Other PREPUBLICATION COPY—Uncorrected Proofs

PARTNERSHIPS AND COMMUNITY 71 peer-led discussions, such as navigating the education system and work- place, are better done by those with lived experience. They have a balance of both but strive to keep it peer led. She added that she has not encoun- tered a discussion in which someone’s personal experience was inaccurate, but that she and others are present to ensure concepts are communicated properly and that clarifying questions can be answered appropriately. She recommended following up with “how” questions, to explore further with- out making the speaker feel intimidated. Nicole Holland from the Tufts University School of Dental Medicine asked Parnell about follow-up for scholars post-graduation. Parnell replied that no AMHS scholars were attending college when she began her role as principal, and now, nearly 40 percent are attending post-secondary education. She noted that when she started, she and her team were so busy triaging the situation that when the scholars left, the school team had no capacity to follow up. Now, AMHS has a tracking mechanism to follow them through post-secondary graduation, and they link the scholar to a success mentor for their post-secondary education. Holland also asked Lane to elaborate on any of the frustrations or challenges she experienced conducting youth participatory research. Lane replied that authentically engaging community members in every step of a study process is really challenging. Projects can be hard to get off the ground because they take so much relationship building, but they can also be difficult to carry out, she added. It is the most important way to make changes that actually can be sustainable in a community, but it is also incredibly difficult to make sure your partnership and academic commu- nity relationship is authentic every step of the way. This challenge is only exacerbated with kids—for example, they are unable to provide their own transportation. Chisolm asked Dave about how attendees on Medicaid might be able to learn about their own transition process, and if there is a contingent of summit attendees who are on Medicaid. Dave replied that the summits do not only have attendees who are just turning 18, so they do not solely address the initial conversation around Medicaid transition. She added that they often have a social worker attend in order to break down every component of health insurance for attendees, which is usually helpful for all of them, and confirmed that HAS has more Medicaid-eligible attendees in Indiana compared with other summit sites. She added that health insurance is an area of greater focus for HAS because more and more attendees are worried about it. Olayinka Shiyanbola from the University of Wisconsin–Madison School of Pharmacy asked Parnell if AMHS faculty were able to track or evaluate health outcomes in terms of behavior change, and asked about the challenges they experienced and lessons learned. PREPUBLICATION COPY—Uncorrected Proofs

72 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH Parnell said that it is easier to track academic data than behavioral data, but the school is working on it so they have more data on specific programs and their influences on scholar behaviors. She also added that the biggest challenge was to build trust between the community outside the school and the community inside the school. “We overcommunicate,” she said. “I am at the table with the CBO and medical health clinic weekly, even daily.” H. Shonna Yin from New York University asked Lane about the extent to which she would engage youths in the process now that initial program development for the SSB study is done. Lane answered that it is also really difficult because kids may move onto high school and change interests, but she does think youths can be engaged in helping with scaling the project as well. On the flip side, she said, it could be done on a smaller scale, because the participation itself could be the intervention: “You are simultaneously building a smaller group of champions who are involved to make sure that your research is going to be sustainable and institutionalized in the school or community, and that you are also potentially developing those kids into deliverers of the intervention.” Auld asked if Lane had used PhotoVoice, a type of qualitative method in which community participants use photography and stories about their photographs to identify and represent issues of importance to them. Lane said that they did not, but she knows the method is useful and resonates with kids. Sarah Shinkman from the Hemophilia Federation of America asked Dave if there were strategies or tools she found useful in training other young people to continue to train their own communities on why health literacy is important. Dave replied that she found teaching attendees about different topics to begin with was helpful. For example, a lot of attendees ­ had never considered vocational rehabilitation as something that was appli- cable to them, and they were able to develop knowledge to talk about it with others. In this vein, attendees have been coming for years, and are now able to recruit others to attend the summits. They are able to share experiences about technical details, for example, “this is what you should do if you have a dietary restriction in college and are required to eat in dining halls.” Earnestine Willis from the Medical College of Wisconsin asked Lane about how she dealt with the Institutional Review Board (IRB) component of her research. Lane replied that there was a lot of back and forth on the IRB to ensure that the instructive structure was present and not coercive. The biggest issue they had was getting parental permission. The researchers had a very long permission form, mainly because they were providing food and transportation and working in small groups, so they relied heavily on PREPUBLICATION COPY—Uncorrected Proofs

PARTNERSHIPS AND COMMUNITY 73 parents to make sure kids got to places on time. This is an issue with data collection in general, she added. REFERENCE LPC Consulting Associates, Inc. 2012. Youth participatory action research: A review of the litera­ ture. Sacramento, CA: Public Health Institute Network for a Healthy California. http://comm. eval.org/HigherLogic/System/DownloadDocumentFile.ashx?DocumentFileKey=0c94137f- d55c-416b-913e-0be589cccd8f&forceDialog=0 (accessed August 20, 2020). PREPUBLICATION COPY—Uncorrected Proofs

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Young people develop health literacy skills in a variety of environments, facing critical thinking challenges about their health from school, home and family life, peers and social life, and online. To explore the development of health literacy skills in youth, the Roundtable on Health Literacy convened a workshop on November 19, 2019, in Washington, DC. Presenters at the workshop discussed factors relating to health literacy skills and ways to further develop those skills among youth from early childhood to young adulthood. This publication summarizes the presentation and discussion of the workshop.

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