Caring for a daughter with intellectual disabilities in managing menstruation: A mother's perspective

Abstract

Background The concerns of mothers and their experiences while providing help to their daughters with intellectual disability (ID) and considerable support needs during menstruation have rarely been addressed. This qualitative study explored mothers’ experiences and perceptions of managing their daughters’ menstruation.

Method Twelve Taiwanese mothers of 13 daughters with ID (1 mother had twins) were interviewed to explore their experiences of providing help to their daughters with high support needs during menstruation.

Results Support networks were limited and mothers developed their own strategies for managing their daughter's menstruation. Surgical hysterectomy or use of medication to cease or postpone menstrual bleeding was never considered by the mothers. The financial cost of menstrual pads and nappies was significant.

Conclusions Both an appropriate allowance for families involved in the menstrual care of women with ID and access to appropriate support are needed. More information and educational programs need to be provided to relevant professionals and carers.

Keywords:

• intellectual disability
• menstruation
• mother
• carer
• caregiver
• Taiwan

Acknowledgements

This paper draws on data collected for a project funded by the National Science Council in Taiwan (NSC-96-2412-H-010-002-SS2). We would like to thank the mothers who gave up their time to take part in our interviews, sharing their lifelong experience and thoughts. We also would like to thank Siao-wei Huang and Huei-Ru Huang for their help in the data collection and transcript recording. Ted Knoy's editorial assistance is appreciated.

Declaration of interest: The authors have no conflict of interest and they are alone responsible for the content and writing of the paper.