Deciding about sterilisation: perspectives from women with an intellectual disability and their families in Taiwan.
Sterilisation choices for Taiwanese women with ID are made by others, mirroring older UK court data and showing global need to amplify client voice.
01Research in Context
What this study did
Researchers talked with women with intellectual disability and their families in Taiwan. They asked how choices about sterilisation were made. The team used open interviews to capture real-life stories.
What they found
Mothers, doctors, and agency staff drove the decision. The women themselves had little say. Rights talk was almost absent. Families wanted to stop pregnancy and ease care burdens.
How this fits with other research
Stancliffe et al. (2007) shows the same pattern in England and Wales. Courts approved 79 % of sterilisation requests for people with ID. Almost all were women living at home without partners. The two studies echo: third parties control fertility.
Lin et al. (2010) looked at Taiwanese doctors who deliver Pap smears. Those doctors also felt women with ID needed help but lacked agency. Together the papers map a system that speaks for, not with, these women.
Libero et al. (2016) asked adults with ID about research benefits. The adults valued choice more than families expected. This small contradiction hints that women might want voice in sterilisation too, if anyone asked them.
Why it matters
When you serve adults with ID, pause before you sign off on medical choices. Ask the client directly, using plain language and pictures. Document her own words in the file. If the team skips her voice, you can flag an ethics gap and call for supported-decision aids.
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02At a glance
03Original abstract
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.
Journal of intellectual disability research : JIDR, 2011 · doi:10.1111/j.1365-2788.2010.01347.x