July 19 -- The Centers for Disease Control and Prevention (CDC) invites public comments by September 17, 2024 regarding a new data collection for the study titled Formative research on adverse and positive childhood experiences, social determinants of health, and health equity among young adults in the U.S. This study will help CDC to better understand the relationship between adverse childhood experiences (ACEs), positive childhood experiences (PCEs), social determinants of health (SDOH), and health outcomes among young adults from populations that have been socially and economically marginalized. This is a group at high risk for experiencing childhood adversity and has been historically underrepresented in research studies.
CDC is seeking approval to conduct a one-time information collection effort, with data collection occurring over a 12-month period. The study will include 6,000 young adults ages 18-24 living in the U.S. Primary data collection, in English and Spanish, via a probability-based web panel survey, will obtain new data on retrospective assessments of ACEs and other potentially traumatic experiences, PCEs, SDOHs, and health and violence outcomes. Sampling frameworks will be designed to ensure overrepresentation of some populations that are disproportionately impacted by ACEs. as well as underrepresented in research and violence prevention programming, including individuals with disabilities; individuals from racial and ethnic minority groups; and individuals who identify as sexual or gender minority.
This project expands the existing evidence base and addresses several gaps in extant data collection systems in the following three ways. First, this study expands how ACEs are measured. Traditional ACEs research has measured eight to 10 highly interconnected, household-level childhood stressors. These include sexual abuse, physical abuse, emotional abuse, emotional neglect, physical neglect, witnessing intimate partner violence, parent separation/divorce, and living in a home with exposure to mental illness, substance misuse, and incarceration (hereafter referred to as traditional ACEs). However, most ACE research does not account for a wide array of other potentially traumatic experiences that can exist across all levels of the social ecology, including stressors that uniquely impact populations that are socially and economically marginalized (e.g., fear of deportation; experiences of transphobia; exposure to neighborhood or community violence). These potentially traumatic experiences may have an additive or multiplicative effect on risk for poor outcomes, or may have a greater effect on risk relative to the conventional ACEs categories.
Second, this study will create a diverse sample which is statistically powered to answer questions on how to prevent ACEs and mitigate the impact of specific and cumulative ACEs exposures among communities that have been traditionally socially and economically marginalized. Most samples used in prior surveillance and research studies do not sufficiently oversample under-represented communities to allow for disaggregation of results by sub-group. Thus, there is a need for data samples that allow for disaggregated analysis and results.
Third, this study will link individual level data to community-level variables. While ACEs are individual experiences, they are influenced by the contexts in which children and families live. SDOH are the conditions in which people are born, grow, live, work, and age that are shaped by the distribution of money, power, and resources. SDOH contribute to health and social inequities for groups with disparities in access to money, power and resources. Many existing ACEs datasets involving individual-level respondents cannot be linked to community-level variables. This formative study will link survey data with publicly available data on structural factors (e.g., minimum wage; generosity of unemployment benefits) via zip code or other geographic indicators.
It is estimated that up to 6,000 young adults will complete the one-time questionnaire. On average, the web-based surveys are estimated to take 30 minutes to complete. These estimates were informed by consultations with individuals with lived experiences and individuals who participated in cognitive interviews. The study team engaged three consultants with lived experience across the three main areas of interest (individuals with a disability, individuals who identify as sexual and gender minorities, and individuals who identify as racial/ethnic minorities) to inform the development and administration of the instrument. The study team also engaged up to nine individuals, in cognitive testing to ensure the relevance, validity, and equitable nature of the survey instrument. These cognitive interviews were a key component for developing a final draft of the instrument that accurately and reliably reflects the experiences and perspectives of a diverse range of individuals, families, and communities.
Draft survey and technical documentation requested of CDC by AEAStat.
FRN:
https://www.federalregister.gov/d/2024-15968