Background This qualitative study explores decision-making regarding sterilisation for women with intellectual disabilities (ID) living with their families, including how such decisions are made and who is involved in the decision-making.
Methods Eleven families including sterilised women with ID participated in the study. Semi-structured interviews were conducted with family members and four of the women with ID; the interviews took place at the family homes during March 2009. The interview schedule sought information regarding decision-making on sterilisation including the reasons for the sterilisation, the identities of those involved in the decision-making, attitudes towards the sexuality of women with ID and the role of women with ID in decision-making about their own sterilisation. Additionally, women with ID were asked about their experiences of sterilisation.
Results The data showed that most of the women who underwent tubal ligation were married and had mild ID; the decision to perform tubal ligation was mostly made by the husband or parents-in-law, and was made after the women had given birth. The reasons given by the families of these women for deciding on sterilisation included: the woman was unable to care for the children, the family could not afford to raise many children, the concern that the ID might be hereditary, or a perceived risk of pregnancy from rape. The two women who underwent hysterectomy were unmarried and had more severe ID than the married women with ID who received tubal ligation. In these two cases, the decisions were primarily made by the mothers of the women based on concerns about managing their menstruation. Almost none of the women with ID were involved in the decision-making process, and some were not even informed of the nature of the surgery. Health professionals and service workers contacted by the families were also influential in the decision-making. The autonomy of the women to engage in decision-making regarding sterilisation thus was constrained by their families and professionals, without considering either sterilisation or hysterectomy a violation of the essential human rights of the women involved.
Conclusion The results suggest that with respect to sexuality and body images among women with ID, concern should exist among society in general and among professionals in particular, regarding human rights; furthermore, more information and better educational programmes must be provided to relevant professionals, as well as to women with ID and their families.