Exploring the knowledge gap in ADHD Literacy: A mixed-methods study of parent information needs

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Ritter, Jennifer
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Although treatments for childhood attention-deficit/hyperactivity disorder (ADHD) are available, treatment uptake is low and parental misconceptions are common, indicating gaps in the knowledge translation of ADHD research to parents. Knowledge translation conceptual models may address these gaps. These encourage study of contexts and barriers where information is sought, to enhance effective dissemination to users. Objectives of this project are to improve understanding of parents’ informational needs and preferences pertaining to childhood ADHD, to identify barriers for parents’ ADHD literacy, and to better understand how ADHD literacy is related to parents’ comfort making treatment decisions. A concurrent mixed-methods design was used to study these objectives. For the quantitative strand, a purposive sample of 55 Manitoban parents of children with ADHD completed an online survey addressing their information needs, information sources, ADHD literacy, and comfort with treatment decisions. Descriptive data explored information needs and sources. Multiple regression analysis examined factors associated with ADHD literacy and decisional conflict. For the qualitative strand, semi-structured interviews were conducted with a sub-sample of 13 survey respondents allowing parents to reflect broadly on their information and treatment needs. Interviews were analysed inductively using reflexive thematic analysis . Data were merged by comparing points of convergence and divergence across datasets in relation to project objectives. Results indicated that parents experience widespread challenges accessing ADHD information due to poor readability, relatability, and distribution of informational materials. Social location and personal stress are additional barriers to ADHD literacy. Parents value both community networks and health-care providers as information sources, for unique reasons. As parents gain ADHD literacy, they report less treatment decisional conflict, yet still describe unsatisfactory treatment experiences. Results demonstrate the utility of knowledge translation frameworks within the study of mental health literacy. Recommendations include development of community-research partnerships for ongoing study of parent needs, use of community-based ADHD resource hubs, and greater collaboration across and between ADHD supports and treatment providers. Limitations include a small and homogenous sample, and generalizability concerns due to the COVID-19 pandemic. Future research identifying the determinants of parental mental health literacy is encouraged.
childhood ADHD, information needs and preferences, mental health literacy, knowledge translation, decisional conflict