2
Setting the Stage
In her keynote remarks, H. Shonna Yin, associate professor of pediatrics and population health at the New York University Grossman School of Medicine, explained that she wanted to discuss child development milestones and frameworks. These frameworks would focus on literacy, numeracy, and cognitive development, as well as neurocognitive perspectives, particularly regarding adolescents and risk-taking behaviors. She added that she planned to conclude her keynote by describing health literacy and chronic disease management, health literacy development in the educational context, and consent and assent. Lawrence Smith from Northwell Health moderated the subsequent discussion.
HEALTH LITERACY IN YOUTH: MILESTONES AND DEVELOPMENT
H. Shonna Yin, New York University Grossman School of Medicine
Many terms are used to describe child development, and often with overlap in age range. Some common terms include the following:
- Early childhood: typically refers to the time from birth to 8 years of age
- Middle childhood: typically refers to ages 6 through 12 years
- Adolescence: typically refers to ages 10 through 19 years
- Young adulthood: typically refers to the teens through the early 20s, occasionally the early 30s
When considering health literacy in the context of early and middle childhood, the health literacy of a child’s parents or primary caregivers is considered to be most important. In a recent Pediatrics in Review article, numerous studies showed that low parent or caregiver health literacy is linked to poorer child health-related knowledge, behaviors, and outcomes, including worse asthma and diabetes-related outcomes (Morrison et al., 2019). During adolescence and young adulthood, a child’s own health literacy becomes more important as the child begins to take increasing responsibility for their health, and begins to rely on their own health literacy skills to manage their health. It is important to remember, however, that the building blocks for health literacy are created during early and middle childhood, which is why these early stages are such an important time to begin to foster the development of health literacy skills. Also, as adolescents and young adults grow up, they become parents and caregivers of young children and will take on the role of fostering health literacy skill development for the next generation.
Unfortunately, data collected as part of the National Assessment of Adult Literacy show that about 30 percent of parents in the United States have basic or below-basic health literacy, and only about 15 percent of parents are considered to have proficient health literacy levels (Yin et al., 2009). Most studies of adolescents and young adults report a prevalence of low health literacy that is between 30 and 40 percent, depending on the setting and type of measure used (Driessnack et al., 2014; Sanders et al., 2009; Sansom-Daly et al., 2016). Few studies have looked at health literacy skills in younger children, in part because it is unclear how to best measure health literacy in children. To use a child development lens to examine health literacy skills development, it is helpful to think of health literacy as a set of competencies and skills that can be categorized into three main types (Nutbeam, 2000):
- Functional health literacy, referring to the literacy skills needed to function effectively in everyday situations, including basic reading and speaking skills, and interpreting numbers (also called numeracy)
- Interactive health literacy, referring to more advanced cognitive and literacy skills, which allow someone to actively participate in their health care, often requiring social skills to help individuals interact in ways to promote health
- Critical health literacy, referring to the most advanced cognitive skills, involving the ability to critically analyze information, apply knowledge, make decisions, and evaluate information, leading to greater control over life events and situations
Literacy and Numeracy
Literacy is a key component of functional health literacy, said Yin. Understanding speech and language milestones can help researchers and practitioners think about how to best support the development of a child’s health literacy skills. From the first year of life, as language skills begin to develop and children acquire their first words, children can be introduced to concepts of healthy eating and behaviors through the early introduction of books, starting even within the first months of life. At 15 to 18 months, as children start to learn the names of body parts, they begin to acquire the vocabulary they will need to communicate about their health and bodies. Between 2 and 3 years of age, as children begin to follow more complex commands, they are acquiring the foundational steps they will need to follow medical instructions when they are older. At ages 3, 4, and 5, children begin to form complex sentences and become able to describe how they feel when they are sick and the story of how they became sick. Around ages 5 and 6, children are able to read simple text and can start to be able to process information on their own, including information that can be used to promote healthy behaviors. Around age 7, children begin to improve their writing and can begin to make written records of health-related issues. In their teenage years, youth will have advanced their speaking, writing, and language skills in a way that prepares them to take greater responsibility for their own health.
Numeracy development works in a similar way, Yin added. In infancy and childhood, children begin to understand the concept of quantities, and they begin to learn how to count and to understand that numerals stand for number names. This allows them to begin to participate in health numeracy tasks—for example, being able to describe their level of pain as early as 3 or 4 years of age. Children learn basic addition and subtraction around age 5 or 6, and multiplication and division at around age 9. They begin to understand fractions and percentages and proportions at around 10 years old. These milestones set the stage for their ability to participate in health numeracy tasks, such as reading food labels; managing medication use, including measuring medicines and determining timing for taking medicines; interpreting blood sugars or other clinical/lab data; and understanding health risks as well as the risks and benefits of different treatments.
Cognitive Development: Piaget’s and Vygotsky’s Frameworks
Dr. Jean Piaget, a Swiss psychologist who believed that children’s cognitive development moves through a linear set of stages, developed a framework with four major stages: sensorimotor, preoperational, concrete operational, and formal operational (Piaget, 1952).
The sensorimotor stage encompasses the time from birth through the second birthday. During this stage, children learn new knowledge through physical manipulation of their environment and by relying on their senses. They come to recognize that personal actions will lead to certain outcomes. For example, a child will learn how to make a rattle produce sound by shaking it.
In the preoperational change, which encompasses ages 2 through 7, symbolic thought emerges and mental reasoning grows. For example, a 4-year-old in the preoperational stage will recognize a stop sign, and recognize that their parent will need to stop the car when they see a stop sign while driving. Another feature of the preoperational stage is that children are very egocentric, seeing things only from their own point of view.
The concrete operational stage occurs between ages 7 and 11. In this stage, children actively use logic. They begin to learn to apply general rules in a standard, consistent way, thinking in a more complex way, and taking into account multiple aspects of the environment. Children no longer think of themselves as the center of the world, and they begin to consider the preferences or perspectives of others.
The formal operational stage, occurring in children 11 years and older, is the stage where children start to think in an abstract way. Children at the formal operational stage can think of potential outcomes of different choices that need to be made. They can hypothesize what would be the best solution, and they can deduce what led to a bad outcome.
Using Piaget’s theories can help inform how children perceive and think about health and illness. A child in a preoperational stage may associate illness with a vague emotion, like “feeling sad.” They might believe that their illness is caused by something they did or did not do. They tend to explain illness based on observations: They have bumps on their body, or they feel like throwing up. They may believe that they can recover from illness by following strict rules like staying in bed.
Meanwhile, a child in the concrete operational stage begins to learn to attribute illness to the concept of germs. They believe that illness can be prevented by avoiding germs, and they may start associating illness with specific consequences. They believe that they can recover from illness by taking care of themselves and by following instructions from their pediatrician, like taking medicine.
In the formal operational stage, where children are typically 11 years old or older, children begin to have a better understanding of the interrelated causes of illness. They can hypothesize that certain situations put people at risk for an illness. They can also understand more advanced concepts like about how their body responds to medicine and how that is important in recovery from an illness.
This framework can also be applied to health literacy skills development. A child in the preoperational stage can name their body parts. They can start communicating with their health care providers, and they can talk about issues like pain and locate where their pain is. With help, they also may be able to perform certain tasks, like monitoring blood sugar levels.
In the concrete operational stage, children can be involved in executing preventive care, like brushing their teeth. They can provide a history of illness. They can begin to assent for treatment. They can start to self-administer medications with supervision, like an inhaler. They can begin to read and understand health information from various sources, including websites, and are able to incorporate this information into their daily life.
In the formal operational stage, teens are able to perform tasks that are more advanced. For example, children with asthma may be able to use an asthma action plan. Children in the formal operational stage may be able to provide a past medical history and family history. They may be able to administer medications themselves, or access information from multiple sources and integrate them. They may be able to perform tasks like interpreting an over-the-counter medication label, navigating a dosing chart, and identifying the right dosage.
Lev Vygotsky, a Russian psychologist, theorized about cognitive development in children and how children learn through social interactions. There are two main concepts that are part of this theory (Borzekowski, 2009). One is the idea of a child’s “zone of proximal development,” which refers to the difference between what a child can do with help and what a child can do on their own. Vygotsky’s theory is that a child’s ability is more likely to increase if tasks are presented within this zone of proximal development. The second concept is of scaffolding: Children rely on scaffolding from a “more knowing other,” that is, a parent or a teacher, to help guide them. The optimal learning environment is thus one that really challenges the child just at the edge of their current understanding so that the child can then master a new topic or skill.
Neurocognitive Perspectives Regarding Adolescents and Risk-Taking Behavior
A neurocognitive perspective can help explain why adolescents, who are able to think abstractly and are typically more cognitively advanced than young children and preadolescents, sometimes engage in unexpectedly risky behavior. For example, adolescents may engage in behaviors that put them at risk for developing alcohol or substance use disorders, or place them at risk for unplanned pregnancy or sexually transmitted infections. Two brain systems are thought to be especially important: the prefrontal cortex, called the control system, and the ventral system, called
the reward system. The control system is involved in impulse control and self-regulation, whereas the reward system involves a structure that creates dopamine. Because dopamine release causes a feeling of pleasure, it can lead to learning and an urge to repeat a behavior or experience. It is the cross talk between the control system and the reward system that is associated with emotional regulation. This is not fully developed until early adulthood.
During adolescence, the reward system is hyperresponsive such that the dopamine response to reward is much larger. This mismatch in development is associated with increased reward-seeking and sensation-seeking behavior and can account for some of the riskier decision making often seen among adolescents.
Media Literacy and e-Health Literacy
There is potential to leverage different forms of media, including technology, to promote health literacy development among children. Media literacy refers to the ability to access, analyze, evaluate, create, and act on all forms of communication. That could include sources like magazines, books, newspapers, or radio, or digital sources like the Internet, social media, movies, music lyrics, video games, and television. So-called e-health literacy has to do with the ability to seek, find, understand, and appraise health information from electronic sources and then apply that knowledge to addressing a health problem.
Some of the milestones for media and e-health literacy overlap with literacy milestones. Of note, infants and toddlers, early on, experience what is referred to as a “video deficit” (CCM, 2016; Reid Chassiakos et al., 2016). They have difficulty learning from two-dimensional video representations. Per Piaget’s (1952) framework, infants and toddlers are typically in the sensorimotor phase, learning from physically interacting with their environment and from social interactions. After age 2, they can start to develop literacy, numeracy, and other skills from watching high-quality television programs or using apps. They are able to start using touch screens in an intentional way and begin to feel comfortable using computers and other digital tools like cameras. By age 7, children can start to use search engines to look up questions and answers, and from 8 to 10 years old, they can begin to think about how media can impact their thoughts, feelings, and behaviors.
Once they are in their teens, they can think critically about the way media are used to influence behavior. Considering how media, literacy, and e-health literacy skills develop can help researchers think strategically about how to promote the development of health literacy skills in children through media and technology.
Health Literacy and Chronic Disease Management
A 2007 survey revealed that pediatricians’ opinions varied when it came to which age a child should assume primary responsibility for managing different health conditions (AAP Department of Research, 2011). For example, the median expected age for assuming primary responsibility for oral health care was 8 years, but for topics or conditions including nutrition, physical activity, or diabetes, pediatricians reported that 12, 13, or 14 years was a more reasonable age range.
To better understand how health literacy skill development can be fostered in young children with chronic diseases, developmental milestones and Piaget’s theories can be taken into consideration. In thinking about diabetes and self-management, young children who are in the preoperational phase cannot really function independently. They need an adult to provide their diabetes care. At this stage, a young child with diabetes would have difficulty recognizing that hypoglycemia is occurring. Even though their decision making is quite limited, parents and caregivers can still engage these children in decision making by allowing them to choose which finger to prick to check their blood sugar, or where they should have their medication injected.
When children reach elementary school age, they enter the more concrete operational phase. Depending on the duration of diabetes and the level of the child’s maturity, a child may begin to perform their own blood sugar checks, or begin to self-administer insulin but will usually require supervision (Jackson et al., 2015). They can also typically let their parent or caregiver know when they are experiencing issues with hypoglycemia. When it comes to decision making, Yin said, older elementary school children can begin to take on more responsibility regarding when to administer insulin with supervision, “and they begin to understand the effect of insulin, physical activity, and nutrition on their blood sugar levels.”
Older children in middle or high school, in the formal operational stage, are generally able to self-manage their diabetes, but they may need some help when having more severe issues. Typically, children in the formal operational stage can recognize signs of hypoglycemia (Jackson et al., 2015). Parents and caregivers often encourage these children to take responsibility for decision making around their diabetes management in order to prepare them for transitioning to adulthood.
This framework can help parents, caregivers, and health care providers foster the development of a child’s health literacy skills in chronic disease management.
Health Literacy Development in the Educational Context
The National Health Education Standards (NHES) can be helpful for parents, caregivers, and health care providers to refer to when looking to foster health literacy skill development. The NHES lay out expectations for what students know and should be able to do at various stages: early elementary, late elementary, middle school, and high school. The standards come in several categories, which have specific performance indicators for each grade level (CDC, 2019):
- Standard 1: Comprehend concepts related to health promotion and disease prevention
- Standard 2: Analyze influence of family, peers, culture, media, and technology on health
- Standard 3: Access valid information, products, and services
- Standard 4: Use interpersonal communication
- Standard 5: Use decision-making skills
- Standard 6: Use goal-setting skills
- Standard 7: Practice health-enhancing behaviors
- Standard 8: Advocate for personal, family, and community health
Consent and Assent
In order to give consent and assent, a child needs to have health literacy skills to be able to understand the treatments or interventions that they would be consenting to. They need to understand the implications of not adhering to treatment, or not engaging with an intervention. Informed consent refers to an individual’s agreement to participate in a medical treatment or in research (FDA, 2011; U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978). Generally, one must be 18 years or older to legally provide consent, although in some states, minors can provide consent without parental permission for medical therapies related to sexual and mental health (Katz et al., 2016).
Children who are mature enough to be part of a decision-making process but who are not yet considered legally competent to consent can provide assent and agree to participate in medical therapies, said Yin (FDA, 2011; U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978). The age at which children can begin to provide assent is “a bit controversial,” she added, but typically ranges from 7 to 14 years of age. According to the American Academy of Pediatrics (AAP, 2011) guidelines, pediatric assent includes four elements:
- Helping the patient achieve a developmentally appropriate awareness of the nature of their condition
- Telling the patient what they can expect with tests and treatment(s)
- Making a clinical assessment of the patient’s understanding of the situation and the factors influencing how they respond (including whether there is inappropriate pressure to accept testing or therapy)
- Soliciting expression of the patient’s willingness to accept the proposed care (Katz et al., 2016)
Yin noted that when children are minors, parents must provide permission for their children to participate, and this is often referred to as “consent”; however, “technically, it is permission, because a person can only provide consent for something that involves their own body.”
It is important to consider how to support health literacy skill development beginning in early childhood, and many frameworks are available to help address how to support health literacy development throughout the life span. More work is needed to think about how to support the development of child literacy skills through the health care system, and how efforts can be integrated across fields and sectors that involve children and health, including medicine, education, and media. More work is also needed to consider how to support the development of health literacy skills in parents and in family members, and how to help them pass on health literacy skills to children. A coordinated approach to these efforts is needed, and more research is needed to understand how to do this most effectively.
DISCUSSION
Smith opened the discussion for general questions and comments from the workshop participants oriented toward future research and policy (see Box 2-1).
Elaine Auld from the Society for Public Health Education (SOPHE) added that researchers need to carefully consider that cognitive development in children can be affected by many external factors, including but not limited to adverse childhood events, race, gender, and socioeconomic status. Each of these elements can greatly affect a child’s ability to give informed consent or make decisions about their health, she said.
Auld added that two relevant articles had been published the morning of the workshop that attendees might find interesting:
- SOPHE released an online supplement on digital health, health education, and behavior, which contains several articles on how people interpret and access information on the Internet.1
- Health Education and Behavior released “Constancy (the New Media “C”) and Future Generations,” which was authored by Dina Borzekowski, to whom Yin had referred during her talk.2
Yin noted that the descriptions of frameworks for cognitive development in children were “quite generalized,” and that social determinants of health are important to consider and acknowledge in the context of research and practice.
Hannah Lane from the Duke University School of Medicine noted that technology is being adapted to developmental timelines for children, so children are able to interact with technology at younger and younger ages.
We do need to focus on equipping kids with skills related to health literacy and navigating information sources, but I also think we need to work across sectors to ensure the onus is not exclusively on children interacting with media, but those who deliver that media—it’s a multisector problem that health literacy skills are a part of.
Yin agreed that children are exposed to technology at what seems like younger and younger ages. We can use some of these cognitive development frameworks to guide our thinking, she said, but we need to constantly adapt and shift our thoughts around what kids can or should do, and consider how to protect kids from material that is not age appropriate. Technology represents an opportunity, too, she added. Kids are active participants in using different technologies, so figuring out how to best use technology to encourage health-promoting behaviors is definitely on the “to-do” list.
Closing the discussion, Alice Horowitz from the University of Maryland School of Public Health added that it was important to remember that parents are ultimately still making decisions for children, even if the children are taught health literacy skills and have some knowledge and understanding of their own health situation. For example, she said,
In Head Start, all children have to brush their teeth with fluoride toothpaste every day. At home, they may not brush with fluoride toothpaste because one parent may not be able to afford it or they may not have
___________________
1 To view the SOPHE supplement “Advancing the Science and Translation of Digital Health Information and Communication Technology,” see https://journals.sagepub.com/toc/hebc/46/2_suppl (accessed March 5, 2020).
2 To view the Health Education and Behavior article, see https://journals.sagepub.com/doi/pdf/10.1177/1090198119863775 (accessed March 5, 2020).
the same information about fluoride toothpaste. In older age groups, some young adults are finding that they never received vaccinations they had been eligible for because of their parents’ lack of knowledge or misinformation. I think we need to direct a lot of effort toward raising health literacy among parents.
REFERENCES
AAP (American Academy of Pediatrics) Department of Research. 2011. At what age should children manage their own health? AAP News 32(7). doi: 10.1542/aapnews.2011327-9a.
Borzekowski, D. L. G. 2009. Considering children and health literacy: A theoretical approach. Pediatrics 124(Suppl 3):S282–S288. doi: 10.1542/peds.2009-1162D.
CCM (Council on Communications and Media). 2016. Media and young minds. Pediatrics 138(5). doi: 10.1542/peds.2016-2591.
CDC (Centers for Disease Control and Prevention). 2019. National health education standards: Achieving excellence, 2nd ed. Atlanta, GA: CDC. https://www.cdc.gov/healthyschools/sher/standards/index.htm (accessed January 23, 2020).
Curtin, S. C., and M. Heron. 2019. Death rates due to suicide and homicide among persons aged 10–24: United States, 2000–2017. NCHS Data Brief, No. 352. Hyattsville, MD: National Center for Health Statistics. https://www.cdc.gov/nchs/products/databriefs/db352.htm (accessed July 30, 2020).
Driessnack, M., S. Chung, E. Perkhounkova, and M. Hein. 2014. Using the “newest vital sign” to assess health literacy in children. Journal of Pediatric Health Care 28(2):165–171. doi: 10.1016/j.pedhc.2013.05.005.
FDA (U.S. Food and Drug Administration). 2011. FDA policy for the protection of human subjects, 21 C.F.R. § 50.25. Silver Spring, MD: U.S. Food and Drug Administration.
Jackson, C. C., A. Albanese-O’Neill, K. L. Butler, J. L. Chiang, L. C. Deeb, K. Hathaway, E. Kraus, J. Weissberg-Benchell, A. L. Yatvin, and L. M. Siminerio. 2015. Diabetes care in the school setting: A position statement of the American Diabetes Association. Diabetes Care 38(10):1958–1963. doi: 10.2337/dc15-1418.
Katz, A. L., S. A. Webb, and Committee on Bioethics. 2016. Informed consent in decision-making in pediatric practice. Pediatrics 138(2):e20161485. doi: 10.1542/peds.2016-1485.
Morrison, A. K., A. Glick, and H. S. Yin. 2019. Health literacy: Implications for child health. Pediatrics in Review 40(6):263–277. doi: 10.1542/pir.2018-0027.
Nutbeam, D. 2000. Health literacy as a public health goal: A challenge for contemporary health education and communication strategies into the 21st century. Health Promotion International 15(3):259–267. doi: 10.1093/heapro/15.3.259.
Piaget, J. 1952. The origins of intelligence in children. New York: International Universities Press.
Reid Chassiakos, Y. L., J. Radesky, D. Christakis, M. A. Moreno, C. Cross, and Council on Communications and Media. 2016. Children and adolescents and digital media. Pediatrics 138(5):e20162593. doi: 10.1542/peds.2016-2593.
Sanders, L. M., S. Federico, P. Klass, M. A. Abrams, and B. Dreyer. 2009. Literacy and child health: A systematic review. Archives of Pediatrics and Adolescent Medicine 163(2):131–140. doi: 10.1001/archpediatrics.2008.539.
Sansom-Daly, U. M., M. Lin, E. G. Robertson, C. E. Wakefield, B. C. McGill, A. Girgis, and R. J. Cohn. 2016. Health literacy in adolescents and young adults: An updated review. Journal of Adolescent and Young Adult Oncology 5(2):106–118. doi: 10.1089/jayao.2015.0059.
U.S. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1978. The Belmont report: Ethical principles and guidelines for the protection of human subjects of research, 3 vols. Bethesda, MD: Department of Health, Education, and Welfare: The Commission.
Yin, H. S., M. Johnson, A. L. Mendelsohn, M. A. Abrams, L. M. Sanders, and B. P. Dreyer. 2009. The health literacy of parents in the United States: A nationally representative study. Pediatrics 124(Suppl 3):S289–S298. doi: 10.1542/peds.2009-1162E.
This page intentionally left blank.
