An exploration of issues around menstruation for women with down syndrome and their carers

Background There is little research on issues related to menstruation for women with Down syndrome, yet they may experience menstruation in a qualitatively different way from normal women, which impacts on their quality of life and that of their families and carers. The aim of this qualitative study was to explore issues with the women and/or their carers. Method Face-to-face or telephonic interviews were carried out with six women with Down syndrome, and 53 mothers of women with Down syndrome. Results The range in age and pattern of menses was similar to that of the general population. Around two-thirds of the women were coping with the self-care aspects with limited help. Heavy periods were an issue for around one-third. Use of tampons was rare, yet several women had problems with pads. Some mothers were unaware how much their daughter knew about the menstrual cycle; others deliberately withheld information. Conclusions Lack of information and preparation, heavier periods for some and reluctance to use tampons, all indicated specific issues for these women. Establishing routines was helpful and could have been applied to more of the women. Further research is suggested into heavy periods and other possible interventions.