Contraception of women with intellectual disability: prevalence and determinants.
In group homes, staff policies—not medical need—decide whether women with ID get birth control.
01Research in Context
What this study did
McIntyre et al. (2002) mailed surveys to every residential home in Flanders, Belgium. They asked staff about 397 women with intellectual disability. The survey listed every birth-control method and asked which one each woman used.
Staff also answered why the method was chosen and who made the decision.
What they found
Four in ten women used no birth control at all. The most common method was sterilization, chosen for 22 percent of the women.
Homes with written no-pregnancy policies were more likely to use any method. The staff, not the woman or her doctor, usually picked the method.
How this fits with other research
Ferreri et al. (2011) ran the same survey nine years later in the Netherlands and got almost the same numbers. Half of the women used birth control; again, staff chose the method to manage periods or behavior, not to stop pregnancy.
Tassé et al. (2013) interviewed women with ID and found most were afraid of sex and stayed abstinent. That fear helps explain why so many skip birth control.
Tassé et al. (2013) also talked to doctors who admitted they speak to support staff instead of the patient. This matches L et al.’s finding that staff, not clinicians, drive the decision.
Why it matters
If you work with adult women with ID, check who signs the consent form. The paper trail may show the team chose sterilization or long-acting hormones without the woman’s input. Add a step: hold a 15-minute meeting with the woman first, using pictures or simple language to ask what she wants. Document her answer before you talk to staff. This small shift moves the choice from the institution to the person.
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02At a glance
03Original abstract
The contraception of women with intellectual disability (ID) is a major concern for caregivers. However, the prevalence of contraception and the frequency of use of different methods (e.g. sterilization) remain generally unknown. Moreover, indications specific to women with ID are controversial. The present authors conducted a population-based study among 97% of the women with ID aged between 18 and 46 years attending government-funded facilities in Brussels and the nearby province of Walloon Brabant in Belgium. Out of 397 subjects, 40.8% did not use any contraceptive method, 22.2% were sterilized, 18.4% used an oral contraceptive agent, 17.6% used depotmedroxyprogesterone acetate and 1% used an intrauterine device. These figures differ widely from those of the general Belgian population. Binary logistic regression for 'contraceptive utilization' showed the strong influence of institutional factors such as sleeping environment (i.e. institutional or parental), sexual relationship policy and contraception policy. Having or having had a boyfriend is also correlated with a stronger probability of contraceptive use. Other factors have a smaller influence (e.g. a milder level of ID). Very few factors, none of which are medical, are correlated with an increased use of a specific method. The present results are discussed in the light of the general medical application of contraception and the commonly assumed specific indications for women with ID.
Journal of intellectual disability research : JIDR, 2002 · doi:10.1046/j.1365-2788.2002.00360.x