University of Nebraska Medical Center
Project Title: Development of a Menstrual Hygiene Management (MHM) Assessment and Intervention Tool for Individuals with Autism Spectrum Disorder and Intellectual Disability
Rebecca (she/her) is a doctoral student at the University of Nebraska Medical Center studying Applied Behavior Analysis. She is under the mentorship of Dr. Alice Shillingsburg and Dr. Amanda Zangrillo. Her research interests include the study of verbal behavior, particularly with alternative and augmentative communication systems; understanding and treating severe behavior disorders; dissemination of behavior analysis in school settings; brain injury; and diversity, equity, access, and inclusion, with a focus on addressing gender disparities for access to behavioral health services.
Rebecca’s research project will develop an assessment and intervention decision-making tool to address menstrual hygiene management (MHM) for individuals with autism spectrum disorder (ASD) and intellectual and developmental disabilities (ID/DD). This research project will develop a guide for practitioners of behavior analysis to address MHM using person-centered, evidence-based methods. Rebecca is passionate about the development of resources to guide practitioners to address MHM. She previously served as a special education teacher and saw first-hand how inadequate menstrual management can contribute to skill regression, loss of access to educational services, increased isolation, long-term dependence on medical suppression, and significant health and safety concerns for menstruators and their caregivers.
MHM refers to management of hygiene associated with menstruation. Access to education and resources for safe menstruation is a human right. Researchers estimate globally over 700 million women and girls with disabilities experience monthly menstruation (UN Secretary General, 2017). Menstrual hygiene is a critical issue connected to gender equality, gender equity, education, empowerment, and human dignity (UNICEF, 2019).
Persons who menstruate may experience multiple layers of social stigma and taboos associated with gender, menstruation, and having a disability (Wilbur et al., 2019). Inadequate resources for MHM may increase negative psychosocial outcomes, including shame, insecurity, anxiety, and embarrassment (Hennegan et al., 2016). The lack of knowledge and awareness about menstruation contributes to harmful practices and health-related outcomes, including cervical cancer, pelvic infections, school drop-out, low academic performance, increased abuse risk, and poor quality of life (Belayneh & Mekuriaw, 2019). This project will address a critical gap in ABA services that negatively impacts individuals with ASD and ID/DD during menstruation.
This resource will be designed to be applicable across relevant settings in which MHM intervention may occur (i.e., home, school, and clinic settings) and to promote socially and ecologically valid interventions (e.g., affordability, feasibility). Questions to be addressed in this research will include how practitioners assess participant and caregiver preference for menstrual care items and how to consider idiosyncratic or individual variables during intervention. This research project aims to include the diverse perspectives and experiences of caregivers, individuals with ASD and ID/DD, and trans and non-binary menstruators into the development of this project. Rebecca would like to express her tremendous gratitude to the SABA and DEI boards for their support for this project, and she is looking forward to disseminating the results.
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