Development and Evaluation of "Period Kits" for Adolescents with Intellectual and Developmental Disabilities: An Embedded Mixed Methods Study.

BACKGROUND

Patients with intellectual and developmental disabilities (IDD) experience greater unmet medical service needs and decreased care satisfaction compared to those without these diagnoses. There are no evidence-based resources widely available to prepare children with IDD for menarche.

METHODS

This IRB approved embedded mixed methods study investigated the efficacy of "period kits" for patients with IDD to ease anxiety and improve preparedness for menarche. Custom kits included a colorful pouch, an original social story, a resource list, and common period management items. Nine family pairs (child/adult) were enrolled. Surveys performed before and after kit exploration queried participants' understanding of menarche, and feedback about the kit itself. Data were analyzed using thematic analysis.

RESULTS

Surveys of the children showed limited knowledge about periods at baseline. Additional themes prior to provision of the "period kit" included limited knowledge, negative perceptions and emotional responses about menstruation and puberty and hesitancy approaching period conversations. After kit exposure, there was an improvement in period related knowledge and promotion of interhousehold discussion with continued room for conversation.

CONCLUSIONS

Many kids with IDD have limited baseline knowledge about menstruation. Custom "period kits" may be helpful in stimulating conversation within families and promoting increased knowledge about menses to children and families. Limitations of this study are small size and qualitative nature, potentially limiting generalizability and external data validity.