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Suggested Citation:"6 Reflections on the Workshop." 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:"6 Reflections on the Workshop." 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 76
Suggested Citation:"6 Reflections on the Workshop." 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 77
Suggested Citation:"6 Reflections on the Workshop." 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 78
Suggested Citation:"6 Reflections on the Workshop." 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 79
Suggested Citation:"6 Reflections on the Workshop." 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 80
Suggested Citation:"6 Reflections on the Workshop." 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 81
Suggested Citation:"6 Reflections on the Workshop." 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 82

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6 Reflections on the Workshop PREPARED REMARKS The final panel focused on reflecting on individual takeaways from the workshop. Terri Ann Parnell moderated the discussion, which opened with three presenters offering prepared remarks (see Boxes 6-1, 6-2, and 6-3). The presenters were Trina Anglin, former chief of the Adolescent Health Branch, Maternal and Child Health Bureau, Health Resources and S ­ervices Administration; Vanessa Simonds, associate professor of com- munity health, Montana State University; and Earnestine Willis, Kellner P ­ rofessor of Pediatrics, Medical College of Wisconsin. ­ DISCUSSION Parnell asked Willis what common thread is necessary throughout all of the sectors to truly enhance health literacy among youth. Willis replied that the health professionals do not know the health education standards in schools well enough to reinforce them, and pediatricians do not always work closely with early childhood education and school systems to advo- cate for brain and cognitive development. She added that she would teach her pediatric residents about how to help parents make decisions about quality early childhood education environments—to help with bridging across sectors for families that otherwise may not occur. Anglin agreed, adding that although there is wonderful evidence of early childhood education program effectiveness, it has not been translated 75 PREPUBLICATION COPY—Uncorrected Proofs

76 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH BOX 6-1 Remarks by Trina Anglin As an adolescent medicine physician, I think about health literacy skills from both a clinical and a youth development perspective. My federal position in H ­ RSA’s [Health Resources and Services Administration’s] Maternal and Child Health Bureau had a dual focus: school health, especially school health services, and comprehensive adolescent health from the perspective of public health, e ­ specially health care services. My comments reflect this background. I want to tell you about an experience I had early in my career that confirmed for me the importance of school health education classes for developing students’ health literacy skills. In the mid-1970s, I worked at a large county hospital as part of my advanced fellowship training in ambulatory pediatrics. The young man who delivered my family’s newspaper was then 13; we lost touch with him when his newspaper route was changed. Several years later, while a senior in high school, he contacted me at the hospital, worried that his girlfriend was pregnant. When they arrived for their visit, he explained that they had been using the rhythm method, but he had been excused from health education classes because he was an honor student. He found out from his friends, too late, that he and his girlfriend had been using the rhythm method incorrectly, so that every sexual experi­ nce had taken place during a time of peak fertility. He ruefully declared that e his school should have required health education for all students, including honor students—no one should be excused. Clearly, this life-changing experience could have been prevented by having accurate information, a foundation for develop- ing health literacy skills. I started my career with a high regard for quality health education for all students. I want to express my deep appreciation for all the excellent and thought- provoking presentations. I know that each speaker exerted tremendous effort to develop a thorough and scholarly presentation. I do have several comments and suggestions. My first comment reinforces the importance of reaching out to young adults, youth who have left high school and are between the ages of 18 and 26. Com- pared to adolescents, young adults have higher rates of adverse health behav- iors and difficulty with behavioral health issues. They bear the consequences as measured by higher morbidity and mortality rates. I am especially concerned about the many young adults who are not attending college. They face greater socioeconomic and behavioral challenges compared to students attending 4-year colleges, and there is no easy way to reach them as a population to strengthen PREPUBLICATION COPY—Uncorrected Proofs

REFLECTIONS ON THE WORKSHOP 77 their health literacy skills. More than 30 years ago, the W.T. Grant Foundation called this diverse group of young adults the “forgotten half,” and they indeed largely remain forgotten.a,b It is essential for us to learn how to help young adults develop health literacy skills as a strategy for decreasing their involvement in risky behaviors and increasing their access to health care services. As a community of health educators and health care professionals, we need to develop sets of strate- gies for reaching the many subgroups of the young adult population.c My second comment concerns our charge to think about collaboration. I would like to focus on how communities can strengthen the development of young people’s health literacy skills. As emphasized by Dr. Kolbe, it is extraordinarily important that states and local school districts assure high-quality, comprehen- sive health education for, and deliver it to, their students.d These efforts can be augmented and complemented by including other community stakeholders in these efforts. First—and this comment is more of a vision than a construct or an action with an empirically studied methodology—is that health care professionals, including pediatricians, family medicine physicians and nurse practitioners, can reinforce and affirm health education messages provided within classroom settings. We know that every clinical visit, if it is conducted well, should include a health educa- tion message targeted to the reason for the visit. If the young person is there for a health care checkup, more formally called a visit for clinical preventive services, the young person and even his or her parents should receive what pediatricians call anticipatory guidance. These health messages are framed according to the patient’s development; they are based on the young patient’s age, address their risk status, and consider the patient’s life situation. Bright Futures: Guidelines for the Health Supervision of Infants, Children and Adolescents, now in its fourth edition and published by the Academy of Pediatrics with support by the Maternal and Child Health Bureau, contains extensive descriptions of health messages for almost any scenario. We know that many pediatricians are interested in school health and would welcome working collaboratively with their local school districts’ health educators to develop such a collaborative effort. aWilliam T. Grant Foundation Commission on Work, 1988. bRosenbaum et al., 2015. c IOM, 2015. d For more information, see https://www.cdc.gov/healthyyouth/data/profiles/index.htm, https:// www.cdc.gov/healthyyouth/data/shpps/index.htm, and https://nces.ed.gov/­ ationsreportcard/ n about (all accessed May 5, 2020). PREPUBLICATION COPY—Uncorrected Proofs

78 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH BOX 6-2 Remarks by Vanessa Simonds The first point that really resonated with me is the role that young people play in their families, thinking about the role of parents’ literacy, how that impacts their children, how child literacy impacts their health, and how that can be a very com- plex interaction. I think we need to think about the role that culture plays in families and how that is impacting youth health literacy skills and outcomes. Among the Crow Indian people, where my family comes from, children are viewed as sacred and pure, and through the research that I do, we have found ways to promote health literacy among youth and, in turn, have youth share that information with their parents. However, we first had to have conversations with the community to make sure it would be appropriate in Crow culture. My commu- nity advisory board talked about it, too, but we had to make sure that I talked to the larger community. I spoke with elders about whether children can play a role in sharing information with their parents. There are cultural strengths regarding the child’s role in the family that we can build on when we want to think about health literacy among youth. Second, I want to highlight partnering with schools. I really enjoyed Parnell’s presentation today because schools are places where we can develop those [healthy] behaviors, and redirect those negative behaviors we start when we are young, and that’s a place where we can reach youth to provide health education. I appreciate the calls to develop recommendations for health education. However, again, culture and context need to be attended to. Research in sci- ence education shows that minority youth and American Indians particularly can be alienated by the way that science is presented to them, particularly when it is not in a culturally responsive manner. And health education has a similar problem that we may see that would need attention. I am a community-based participatory researcher and I appreciate the multiple presentations today that included participatory approaches. That is one way to address cultural incongruence and misunderstanding, to address the mistrust that was discussed today, and to build health literacy skills among youth. We have seen in our work that having youth be on participatory projects builds their health literacy skills. However, I also appreciate the challenges of working with youth. I use Hart’s participation ladder in my research and it can be difficult. We get information [about the community] from our advisory board, which is made up of adults who have an agenda. I have approached the youth, and it was difficult to present information about the study in a way that engaged them as authentic partners. I appreciate the challenges around engaging youth discussed today, as well as identifying who the community is, who the community partners are, and maintain- ing respectful and reciprocal relationships. In closing, education systems, medical systems, and health care providers that don’t integrate cultural understandings and interests will fail to engage youth. That disconnect could further alienate them from receiving health information and/or accessing health services. PREPUBLICATION COPY—Uncorrected Proofs

REFLECTIONS ON THE WORKSHOP 79 BOX 6-3 Remarks by Earnestine Willis This morning, we started with a presentation of foundational information about child development and the current understanding of basic skills that we know children should have as they move along the different stages of their develop- ment. Dr. Yin did a great job of helping the audience understand the complexity of child development as a continuous learning process. We recognize that children’s devel­ pmental changes depend on others’ resources. They also have vulnerability o and their epidemiology is not that of adults. The discussion today brought up several important components of this topic: •  laces where health literacy skills can develop; P •  opulations and people with special health care needs, and lessons P learned from research and practice among them; and •  artners and the roles they play, and partnerships that we need to have P which add broad complexity to this area. However, one element that I want to make sure we pay attention to is the policy piece that has to thread across all of those components. We must recognize that we have to advocate for those policy changes that do not allow barriers to implementing health literacy skills development effectively for children and youth populations. As the planning committee developed this workshop, I looked at some of the systemic reviews out there on health literacy, and some of my colleagues in pediatrics, and some of them have done tremendous work around the four skills— reading skills, oral expressive language skills, numeracy skills, and system navi- gation skills. All of those are very important but there is still a lot more work to do. In the 2017 systematic review of health literacy definitions and models, they reviewed 21 different models of health literacy, and found that 16 of them were designed and developed from a conceptual perspective providing a broad theo- retical base for health literacy. The other five models were operational health lit- eracy dimensions for the development of measurement tools. While three models represented a clinical–medical perspective, the other 18 took on a public health perspective. Each model was developed from a multisystem perspective; that is, health and education and community systems. They covered domains including health care, disease prevention, and health promotion, but because most of them were theoretical, it is difficult to determine the extent to which the models may be generalized. The more important component in that review was that very few of the models looked at children less than 10 years of age, and years are the essential building- block years, where core literacy dimensions are developed in childhood. Those key dimensions are clusters of related abilities, skills, commitments, and knowl- edge that enable one to approach health information competently and effectively and that results in health-promoting decisions and actions. Not only does this mean the acquisition of knowledge, it includes knowing when many necessary continued PREPUBLICATION COPY—Uncorrected Proofs

80 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH BOX 6-3 Continued literacy attributes and their antecedents are developed. There are also conse- quences for families and communities and society that we need to be aware of and continue to study while ensuring that we mitigate unintended consequences. Other important topics discussed today were processes today and there is nothing wrong with understanding those processes, but I also know that children are very resilient. We, as professionals, have to make sure we conduct programs and research that have some relevance and allow children and youth to become empowered in health-related decision making. Many of the presentations today reflected that we are dealing with very multi­ dimensional and complex systems and processes that children and youth have to navigate, including the digital world and social media. So, how do we create research opportunities within this complex world that help us to be more effective in enhancing the health literacy of children and youth such that we get the empowered health-literate adult? This has the potential to result in a healthier adult society that lives on, so we can truly realize health equity. Since I work in the world of community based participatory research and in the community, some of my concern is always focused on sustaining the health literacy programs. How do I ensure that the community owns the programs after I—the health professional—move on to another topic of interest, whether I am dealing with oral health or dealing with vaccines? I think we do not always spend enough time finding ways to leave individuals and populations empowered by the research we conduct. What often happens in studies that involve community organizing with youth is that the programs often resolve or are not sustained. The adults are the program’s champions, and the youth move on in their development. There are studies and publications throughout the literature that talk about how we teach our graduate students how to do community organizing: Whenever youth conduct participatory research, as they age out, whether the subject is violence prevention or health literacy or any other subject, how do you ensure that the next cohort of children and youth are engaged and willing to pick it up and carry it on based on findings such that the research is iterative? I have that same challenge with my residents. We conduct community initia- tives, like adopting a school, and examine how to sustain those efforts with quality and effectiveness, or best practices for the population who will benefit from it. Today has been rewarding. I think it challenges us all as health professionals to figure out where we should adjust our contributions to enhance health literacy among children and youth. I conclude with, start early, early, early! PREPUBLICATION COPY—Uncorrected Proofs

REFLECTIONS ON THE WORKSHOP 81 into policy across the country. “Programs and policy can relate back and forth between each other. To me, that is a common thread.” Willis noted that because she works in both the medical and early childhood education (ECE) communities, she knows that the ECE com- munity does a thorough assessment of social determinants of health for each family, but they do not share that information with pediatricians. She ­ added, “Families shouldn’t have to repeat that information.” Jennifer Manganello from the University at Albany School of Public Health noted that policy issues regarding the online environment are enor- mous. She also added that in her focus groups, young adults often said that they were not taught how to understand health information, with the occasional exception prefaced by “one of my parents is a medical profes- sional.” “Maybe we should do a better job of working with parents to let them know they should be working on developing these skills with their kids,” she said. Cindy Brach from the Agency for Healthcare Research and Quality noted that crucial developmental moments in children’s lives are often overlooked in a child health context, especially if they are healthy. But those early moments are the perfect time for interventions to develop health lit- eracy skills. She wondered how institutions can serve both parents and ado- lescents and navigate tension as adolescents assume more self-management responsibilities but are not yet fully independent. Willis noted that, as a physician, she encourages a collective approach to serving patients. Winston Wong from Kaiser Permanente wondered if any speakers could talk about how health literacy could have played a more proactive role in anticipating the phenomenon of e-cigarette use among adolescents. Willis replied that youth were active in tobacco control campaigns. When she served as the chair for the Tobacco Control Board in Wisconsin, they had a modest initiative to have 100 municipalities adopt a non­ moking s policy, and it caught on rapidly because young people were active partici- pants in the initiative. She added that more research should be married with interventions. Closing out the discussion, H. Shonna Yin from New York University noted that parents often play the role of the trusted and knowing other actor who will help the child build health literacy skills. In that sense, health care providers can play an important role in guiding parents on how to engage their children in their illness, be it minor or chronic. She added that more thought should go toward developing frameworks that can specifi- cally help health care providers know how to engage children every step of the way, starting in early childhood. PREPUBLICATION COPY—Uncorrected Proofs

82 DEVELOPING HEALTH LITERACY SKILLS IN CHILDREN AND YOUTH REFERENCES IOM (Institute of Medicine). 2015. Investing in the health and well-being of young adults. Washington, DC: The National Academies Press. Rosenbaum, J., C. Ahearn, K. Becker, and J. Rosenbaum. 2015. The new forgotten half and research directions to support them. New York: William T. Grant Foundation. http://­wtgrantfoundation.org/resource/the-new-forgotten-half-and-research-directions-to- support-them (accessed May 5, 2020). William T. Grant Foundation Commission on Work, Family, and Citizenship. 1988. The forgotten half: Pathways to success for America’s youth and young families. New York: William T. Grant Foundation. http://wtgrantfoundation.org/library/uploads/2018/08/ The-Forgotten-Half-Optimized.pdf (accessed May 5, 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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