Parents Find Available Information on ADHD Inadequate

Parents of children with ADHD feel they have insufficient and impersonal knowledge about the condition.

Parents of children with ADHD feel they have insufficient and impersonal knowledge about the condition, according to research published online in Patient Preference and Adherence.

For their study, Rana Ahmed and colleagues at the University of Sydney conducted 3 one-hour or 1.5-hour focus groups with 16 parents of children with ADHD. To address the study’s needs, the groups were moderated by a guide who asked open-ended questions. Additionally, the children’s age at ADHD diagnosis, the parents’ education level, household income, gender, and relationship status were recorded.

The researchers centered on 3 major themes presented during the focus groups: parents’ knowledge of ADHD pre- and post-diagnosis, where they received the information from, and whether they were satisfied with the information they received.

Upon analyzing the recordings and transcripts, the investigators found the parents became more educated about ADHD following their child’s diagnosis. Due to media reports, many parents had a negative perception of ADHD medications prior to the diagnosis.

However, the researchers reported the parents were dissatisfied with the information they received, citing the inability of healthcare professionals (HCPs) to personalize medical recommendations based on their child’s present and future needs.

“Parents expressed a need for access to services which would allow them to develop skills and techniques that would assist in the management of their child’s condition,” the investigators wrote. “Parents suggested that the diagnosing HCP should refer them to support groups to allow them to witness firsthand what other parents were going through, particularly with regards to the impacts of medicating or not medicating the affected child.”

Although the researchers cautioned that their participants were from a localized area and no specific question was tested, they claimed their study is one of the most intensive reports available on this issue.

“Although this qualitative investigation may not be generalizable to the entire population, the rich data collected can be used as the basis of future quantitative investigations,” the investigators penned.

The researchers mentioned that parents discovered inaccuracies in a myriad of sources they had accessed, which made them feel “unsupported and isolated.”

“It is essential that future research focuses on providing parents with alternative avenues to access relevant and reliable information and support in order to empower parents to make the best decision for their child,” the study authors concluded.