We’ve written a lot about the Adverse Childhood Experiences (ACE) Study and the health risks that arise when children experience toxic stress. The original ACE study was conducted with a predominantly white, middle-class population of adults in California and found a strong relationship between the number of ACEs research participants experienced (e.g., being physically abused as a child, living with mentally ill person) and poor health outcomes in adulthood (heart disease, smoking). A criticism of the ACE questionnaire, which has since been used in dozens of studies that produced some surprising findings, has been that the questions fail to capture stressful experiences that are particularly common in low-income urban communities.
Dr. Roy Wade and colleagues at the Children’s Hospital of Philadelphia and the University of Pennsylvania formulated a plan to identify what sorts of urban experiences might be missing from the ACE questionnaire: they asked people about their lives growing up in Philly. The results of the study were published this week in the journal Pediatrics.
The new study included 105 adults ages 18 to 26 who grew up in a Philadelphia neighborhood where at least 20% of the residents lived at or below the Federal Poverty Level ($23,850 for a family of four in 2014). In 17 focus groups, participants collectively generated a list of stressors they experienced while growing up. Each participant then independently ranked the five most stressful.
Many among the top 5s were captured in the original ACE questionnaire. For example, family members’ abuse of alcohol and drugs made top 5 lists 37 times. Lack of love and support in the family was listed 33 times, as was child abuse.
The most frequent top 5 stressors, however, were not asked originally. Community violence was listed 57 times by the Philadelphia participants. Negative adult behavior in the community, such as ongoing grudges between neighbors, was included 50 times. Stressors related to economic hardship were listed 67 times. Issues related to discrimination, 23 times.
There also were two categories of adverse childhood experiences in the original questionnaire that did not make these participants’ top 5 lists. One was growing up with mental illness in the household; the other was parents' separation or divorce. The separation/divorce question might be irrelevant for many because their parents were never together; growing up in a single-parent household was in fact ranked as a top 5 stressor 30 times.
One size does not fit all when it comes to research questionnaires. These findings speak to the need to integrate the voices of socioeconomically diverse groups into study designs.
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