Qualitative Focus Groups with Professionals of Special Education and Parents of Young Females with Intellectual Disability Exploring Experiences with Menstrual Hygiene Management and the Trigger for the Non-Therapeutic Hysterectomy in Mexico

Abstract

How primary carers, physicians, health education professionals, and others see or understand the subject of menstruation in women with intellectual disability (ID) is rooted in the socio-cultural context and in the socio-economic structures in which all of them live. The aim of this study was to explore how parents of young females with ID and special education professionals perceive and experience menstrual hygiene management, which coping strategies are applied; and what triggers the performance of a hysterectomy. A qualitative focus group study design was conducted with 69 parents and 11 special education professionals, in 14 schools and one Down syndrome clinic, in Mexico City. Data were analysed using the method of thematic analysis. The main concern of parents was how to cope with the underlying disease. They perceived menstrual bleeding positively. Their psychological distress had to do with the reproductive health of their daughters, with their wish to avoid pregnancy, and with their fear of death and leaving their daughters alone and helpless without them. None of them favoured hysterectomy. Medical indication of hysterectomy was identified as the trigger for its performance. There is an urgent need of policy development/review on best practices for hysterectomy in the females in question.