Title: 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 NonTherapeutic 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 socioeconomic 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. The study here reported has a number of strengths. This is the first study of its kind in Latin America. It provides a picture of feelings, values, and beliefs that revolve around menstruation and hysterectomy and that are shared by the direct carers of Mexican women with ID. It should be mentioned that extreme care was taken in the methodological rigour with which this research was performed in order to reduce potential biases that are characteristics of focus group discussions. By way of conclusion, this study is particularly useful and has clinical and social value because it highlights the urgency of incorporating ethical thinking into quotidian clinical practice in order to transform a physician−parent/female with ID relationship that is merely technical-bureaucratic into a relationship that is truly professional and personal; that is, at the service of the patients with ID. As well, the fact that the results showed that non-therapeutic hysterectomy is still a live issue in Mexico is indicative of the need to set up effective educational and training programmes on menstrual hygiene management, sex and sexual health, in the context of IDs entities; both at the individual and community level. This study also generates new material for a normative inquiry that attempts to develop (based on evidence) and to lead to the enactment of policies and statutes in this area of public health and clinical practice to fix this serious and long-standing problem.

Biography:

Rosario has experience in public health, participating in national surveys and research projects together with PAHO, has allowed the development of clear and convincing ideas regarding the application in the first level of care and the nursing function, bringing this thought to teaching It has allowed the transmission and creation of bonds in community work. Conducting qualitative research is undoubtedly the best tool for nursing and its approach to communities, families and individuals who need to be heard and, in the same way, take care of their physical, psychological, social, health and environment needs.