Menstrual Support for Females with Developmental Disabilities: Survey and Interview of Parents or Caretakers

Menstruation is a difficult topic to address with as females with or without disabilities. It is a more significant challenge for females with developmental disabilities (DD) because it stimulates a variety of physical and psychological changes. Thus, some females with DD might have a qualitatively different experience compared to the general population. In this study, an online survey and follow up telephone interviews of parents/caretakers of females with DD were conducted in order to investigate how they manage menstruation, the kind of support or help needed or currently given to females to manage menstruation. The results of the study generated quantitative data for the survey study and qualitative data for the interview study. In order to examine the hypotheses of the survey study, bivariate tests (Wilcoxon-Mann-Whitney test, correlation) were conducted. A total of 61 participates (parents or primary caretakers of females with DD) completed the survey via SurveyMonkey(TM). The results showed that the mild and moderate group (M/M group) tended to be more independent on menstrual management, sought more educational support, and training and recourses related to menstrual management than the severe and profound group (S/P group). The interview study used semi-structured interviews to examine the research questions. Total five participants were interviewed. Overall, the results indicated that parents or caretakers of females with DD had negative experiences of menstrual management and they need more support and resources not only for themselves but also for females with DD.