Researcher Strives to Add Youth Voices to Health Measures

As any pediatrician will tell you, children are not just little adults. Assessing and treating pediatric health issues is not the same as assessing and treating adult health issues, only in miniature. Children are different from adults in myriad ways — physically, developmentally, and emotionally.

They also use language differently than adults do. For one, children have much smaller vocabularies than adults. And according to the American Speech-Language-Hearing Association, even children without language disorders may have issues with language pragmatics, such as using language appropriately and following conversational rules.

Acknowledging that children use language in unique ways, one CHOP researcher has been striving to incorporate their voices into public health measures. With the support of the Philadelphia-based Stoneleigh Foundation, The Children’s Hospital of Philadelphia’s Roy Wade, Jr., MD, PhD, MPH, has been working on a new project that will add children’s voices and language feedback to tools used to assess and respond to childhood adversity. An attending physician and public health researcher, Dr. Wade’s current investigation builds on the results of a major study published today in Pediatrics.

Focus on Low-Income Urban Youth

Dr. Wade’s Pediatrics study, which he conducted alongside Children’s Hospital’s Joanne Wood, MD, MSHP, and David Rubin, MD, MSCE, as well as the University of Pennsylvania’s Judy A. Shea, PhD, sought to add the perspectives of low-income inner-city youth to measures of adverse childhood experiences (ACEs). The Pediatrics study follows the CDC’s landmark Adverse Childhood Experiences Study, which was initially conducted from 1995 to 1997. Designed to assess the associations between adverse childhood experiences and “later-life health and well-being, the CDC study’s findings “suggest that certain experiences are major risk factors for the leading causes of illness and death as well as poor quality of life in the United States,” according to the CDC site.

Dr. Wade’s research seeks to build on the original ACE study by adding youth voices. For example, chronic ACEs experienced by inner-city youth like pervasive community violence, economic hardship, and racial discrimination were not assessed in the CDC study. Therefore, by partnering with community organizations in Philadelphia, for the Pediatrics study Dr. Wade conducted a series of focus groups with low-income inner-city young adults aged 18 to 26 years old to get their perspectives on ACEs.

After meeting with a total of 105 participants, the researchers found that stress related to family relationships (such as domestic substance abuse and domestic violence) was the most common ACE cited. The second most commonly cited area was community stressors, including “neighborhood violence, crime, and death.”

Chronic exposure to violence has been associated with a number of adverse outcomes, including a propensity to engage in or commit acts of violence. In addition, per a study led by New York University’s Patrick Sharkey, PhD, experiencing community violence such as homicides “generates acute psychological distress among caregivers and impairs children’s self-regulatory behavior and cognitive functioning.”

Overall, Dr. Wade and his team note assessments of childhood adversity “should include experiences relevant to the target population,” and ACE research “should be broadened to include stressors experienced by youth in low-income urban settings.”

From Youth to Younger Children

Which is precisely what Dr. Wade’s current project, funded both by the Stoneleigh Foundation as well as the Perelman School of Medicine’s Center of Excellence for Diversity in Health Education and Research, aims to do. Over the course of this three-year project, Dr. Wade will be working “to build a youth-informed measure of childhood adversity that is informed by kids but is also informed by the organizations that actually use the instrument,” he said.

He has been collaborating with organizations across healthcare, social service, and youth mentoring groups to create the measure, which will eventually be adopted by the partner organizations. The measure itself will be a series of questions, Dr. Wade said, as part of interviews that will be concerned with validating the framework of areas of concern established by the Pediatrics study.

Dr. Wade then plans to gauge the impact of the tool and adversity assessment on each organization’s work, seeking to measure how it changes practice “in unforeseen ways,” he said.

In contrast to the Pediatrics study, with this project Dr. Wade is looking to recruit children as young as 8 years old. And because the children involved could be so young, Dr. Wade said he will be looking to use the kids’ language to reform questions and fill holes in the questionnaire. For example, in Dr. Wade’s measure he might avoid using words like “incarcerated” (used in the original CDC study) in favor of simpler language.

“We’re giving these kids a voice where they didn’t have one,” he said, adding that the project will give children who have experienced adversity “an opportunity to speak about their life experiences.” After all, Dr. Wade said, it is the children who experience trauma who “are the true experts in understanding what childhood exposures were stressful and traumatic for them.”

To read more, see the Stoneleigh Foundation page about Dr. Wade’s new project. And for more information about his study with Drs. Wood, Rubin, and Shea, see Pediatrics.