Prins, E. (PI), Huang-Pollock, C., Schaffer, B., Toso, B.W., Woodhouse, S., & Witherspoon, D. P-PLAN: Parents planning and learning about attention-related needs. Funder: PSU College of Education Research Initiation Grant ($8304) and the PSU Children, Youth, and Families Consortium ($6500).2012-14

  • Toso, Blaire W.; Prins, Esther; Campbell, Kimeka; Schaefer, Barbara; Witherspoon, Dawn; and Woodhouse, Susan (2014). "“You have to be Proactive with Your Child’s Health”: Learning and Health Literacy among Caregivers of Children with ADHD," Adult Education Research Conference.

Raising a child with overactivity or attention difficulties can be challenging. Seeking information and treatment, understanding diagnoses, making decisions about treatment, and interacting with teachers and health care professionals can pose a number of challenges, especially for caregivers who lack access to economic, educational, or other support systems.

The purpose of this project was to understand how low-socioeconomic status (SES) parents (or other primary caregivers) of school-age children with overactivity or attention difficulties, or who are diagnosed with ADHD seek out and make sense of information about their children's diagnoses or concerns about behavior, how parents make decisions about treatment, parents' experiences of interactions with professionals involved in diagnosing and treating their children, and parents' supports and needs for support related to parenting a child with ADHD or other such difficulties (including managing challenging behaviors). The study focused both on current experiences and what would most help to promote access to services, support, empowerment, and health literacy.

The study site was a small Pennsylvania city with a racially diverse population, high levels of socioeconomic disadvantage, and low educational attainment. We conducted six focus groups with 22 women and four men; each participant attended two focus groups. The findings elucidate how caregivers developed health literacy concerning their child’s ADHD. They used a constellation of strategies to learn about ADHD and access services from insurance companies, providers, and schools. Importantly, they emphasized the need to persist, question, and advocate for their needs, which contrasts with the emphasis on passive, compliant patients implied in some health literacy research.