Hysterectomy for the management of menstrual hygiene in women with intellectual disability. A systematic review focusing on standards and ethical considerations for developing countries

Abstract

Background: Menstruation poses particular challenges for women with intellectual disability (ID). In low-and middle-income countries, where these women do not have access to facilities and resources for adequate menstrual care, hysterectomy could be considered as an ethically acceptable procedure. We conducted the first systematic review to identify what constitutes best practice for menstrual hygiene in women with ID and explored the perspectives of actors involved in the hysterectomy decision. Methods: Theory-informed mixed-method thematic systematic review with theory development. Results: Eleven ethical guidelines and 17 studies were included. Respect for autonomy and the patient's best interest were the criteria to determine what constitutes best practice. The actors' values and attitudes expressed some dimensions of existing inequities. In low-and middle-income countries, the main concern of parents was the difficulty to train their daughters about menstrual hygiene. Parents (mothers in particular) also expressed the feeling of being excessively burdened, and complained about the limitations of their support networks. Doctors perceived hysterectomy as a safe procedure and a solution for women with ID, whose menstrual hygiene is problematic. In general, the more severe or profound the level of ID, the more likely the interested parties advocated for a hysterectomy. The women with ID perceived their menstruation as a negative experience. Hence, the three parties supported hysterectomy for menstrual hygiene. Parents and doctors considered informed consent or assent (from the women with ID) as necessary and achievable. Conclusion: The international ethical guidelines suggest that non-therapeutic hysterectomy in women with ID should not and ought not to be recommended as routine and appropriate method to cope with menstrual hygiene even if it is technically safe. Although hysterectomy to cope with menstrual hygiene is still a live issue in high-, middle-, and low-income countries, in high income countries it is performed with authorization from the Court; whilst in low-and middle-income countries there is not an active involvement of the State, or financial or training support for women with ID and their carers. Hence, in low-and middle-income countries there is an urgent need to develop and enact policies and statutes in this area of public health and clinical practice.