Engaging families in research to determine health literacy needs related to the use of second-generation antipsychotics in children and adolescents.

OBJECTIVES We sought to engage parents and caregivers in research to understand their health literacy needs related to the use of second-generation antipsychotic medications (SGAs) in children and youth. METHODS Two focus groups with a total of 14 participants were conducted in two distinct geographical regions of British Columbia. RESULTS Participants expressed that they had numerous questions about the medications but had few reliable resources available to them. They currently obtain information from a wide variety of sources including: psychiatrists, pharmacy print-outs, pediatricians, other parents, the Internet, and books. They expressed a preference for information to be initially delivered verbally, on a 'one-to-one' basis by their medical professional (preferably psychiatrist, psychologist, pediatrician), and then supplemented by accessible, written- and video-reference materials that would also be available online from a single reputable source (e.g., BC Children's Hospital). The weight gain and other potential metabolic side effects were of great concern to parents. Educational resources that address healthy nutrition and promotion of physical activity need to address the specific issues that parents looking after children with mental health concerns face. CONCLUSIONS Families are key partners in the management and treatment of child and adolescent psychiatric disorders. The findings from this study support the value of including the "family" voice in developing educational strategies related to medications such as SGAs.