Contraception for women with learning difficulties: Who Decides
A web based survey to find out more about who makes decisions about contraception was launched in the summer of 2012 by the Open University. Ninety responses were received within a two week period.
Survey headlines:
90% of respondents were female.
In a minority of cases – 15% - the idea of using contraception was first raised by the woman herself. More often support staff (residential) initiated the discussion.
A formal assessment of mental capacity was undertaken in around 30% of cases. This is quite low and raises further questions about whether the Mental Capacity Act (2005) is being used as intended and whether the needs of people with severe learning disabilities are being met.
62% of women were involved in discussing the type of contraceptive they might use, with the final decision to use contraception being made by the woman herself in just over 50% of responses. Mothers were the second most influential decision maker – 18%.
Decisions about the type of contraception were made by women themselves in 45% of responses. GPs were the other significant decision makers.
The most widely used contraception was contraceptive implant (46%), with the combined contraceptive pill second (24%). These contrast with national data which indicates the combined contraceptive pill as the most widespread form of contraception (66% of women aged 20-24 use the pill) while only 14% use Long Acting Reversible Contraception (FPA 2007).
Contraception was seen to be necessary in just under one third of cases because the woman was sexually active. Other reasons cited by more than 15% of respondents were an expectation that the woman would become sexually active; fear of pregnancy; and the management of menstruation.
The survey shows a complex picture. It is sufficient to indicate that more in depth research is needed to understand more about ‘who decides?'.
In response to the survey we received messages from women with learning difficulties and advocacy groups who wanted to talk to us about their experiences. However, the survey was not designed, or given ethical approval with this in mind.
Future work
The area covering reproductive choices made by people with learning difficulties and the associated decision-making process remains under-researched. Relatively little has been written about the experiences of people and their supporters who have received or are currently in receipt of contraceptive advice.
We are seeking funding to enable us to speak directly to people with learning difficulties, their families, supporters and advocacy groups. The aim of this will be to gain an improved understanding of experiences and views on this sensitive and often hidden subject.
We will be in touch through the choice forum as soon as we receive funding to take this work forward.
If you would like to be involved once the funding is received, please contact Dr Sarah Earle at the Open University via sarah.earle@open.ac.uk
Reference:
FPA (2007) Factsheet Contraception: Patterns of Use