Supporting the reproductive choices of women with intellectual disabilitiesSarah Earle1, Rohhss Chapman2, Susan Ledger1, Liz Tilley1, Lou Townson2 and Jan Walmsley1

1The Open University; 2Carlisle People First Research Team Ltd

IntroductionWomen with learning disabilities have a right to control their own bodies and to make decisions regarding their reproductive and sexual lives. However, women with learning disabilities can also be vulnerable to inappropriate reproductive control (Tilley, Walmsley & Earle, 2012). This project, which was developed by an inclusive and collaborative all-female research team, set out to explore what women with learning disabilities know about contraception and to understand how women make reproductive choices.

Nineteen women aged between 19 and 61 years of age participated in the study. Four of these women had complex and high support needs and the remainder had mild to moderate learning disabilities.

A range of flexible interview formats were used to accommodate women’s needs and all women were provided with illustrated easy read information (see Earle et al. 2015)

Findings and implications for practiceThe findings of the study show that knowledge and understanding of contraception varies. Some women can make independent reproductive decisions and had received appropriate information and advice, but others not. Women reported using contraception for a variety of reasons but, historically, women have been coerced to use contraception when it was not needed. Some of the implications of the project are:

• Women need improved access to sex education and information about contraception

• Women need illustrated easy-read information to help them make choices

• It should be recognised that sometimes women prefer to speak to a female nurse or doctor

• Closer monitoring of contraception is needed

• Women most vulnerable to coercion need specialist support.

AimsThe project aimed to explore women’s experiences of contraceptive decision making and sought to answer the following research questions:

1. Why do women believe they are receiving contraceptive care?

2. How have women made decisions about contraception?

3. Do women feel they have been supported in making decisions about contraception?

4. What support have women received to help them understand contraceptive care?

5. What do women know about how and when they can stop using contraception?

MethodA qualitative research design was chosen because the aim of the project was to hear directly from women with learning disabilities about their reproductive choices.

Women from across the UK were invited to take part in the study if they:

• had a label of learning disability

• were able to consent to take part

• and, were using, were planning to use or had used contraception in the past.

ReferencesEarle, S., Chapman, R., Ledger, S., Townson, L. and Walmsley, J. (2015) Contraceptive Choices for Women with Learning Disabilities. Final project report. The Open University Available at: http://oro.open.ac.uk/45157/

Tilley, E., Walmsley, J., & Earle, S. (2012) ‘International Perspectives on the Sterilization of Women with Intellectual Disabilities’. In: S. Earle, C. Komaromy, & L. Layne (eds) Understanding Reproductive Loss: Perspectives on Life, Death and Fertility. Surrey: Ashgate Publishers, pp. 46-63.

AcknowledgementsWe received a research grant to support this work from Open Society Foundations (Grant no: OR2014-12989).

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