Learning about Incontinence aSsociated wiTh fEmale genital mutilatioN (LISTEN)

What is the problem?

Approximately 103,000 women aged 15 to 49 and approximately 24,000 women aged 50 and over who have migrated to England and Wales are living with the consequences of Female Genital Mutilation. Bladder symptoms are problematic amongst women who have undergone FGM. Problems with passing urine, leakage of urine and the bladder not behaving as it should are reported, as well as symptoms such as repeated urinary tract infections, prolapse and issues around toileting linked to the FGM experience. Whilst symptoms are described in the literature, the impact of these symptoms have not been explored. This emerged in a recent project conducted in our local area and through a thorough review of the papers written about this – we don’t know how bladder symptoms linked with FGM affect these women as we haven’t heard their voices.

This is important as our local priorities are focussed on tackling inequalities, strengthening the building blocks of good health and wellbeing, preventing illness and working with communities to support healthy behaviours. In addition, we are currently developing our local hub to improve women’s health nationally. This study will help to identify the needs of women experiencing these symptoms and opportunities for other services that may come into contact with women with experience of FGM more frequently, to enable bladder symptoms to be improved. Our services do not take into account the needs of these women at the moment as we haven’t asked.

What is the aim of the research?

The aim of the future project is to work with women who have experience of these issues to develop resources and services that are fit for purpose. What we produce will be of use for the NHS and charities for women who have experienced FGM. We plan to work together to work out what will help women with these symptoms to be aware that their symptoms can be improved and reassure them that services they use will be inclusive and appropriate for their specific needs.

How will Bristol, North Somerset and South Gloucestershire ICB RCF be used?

This initial project will work with women who have experience of these symptoms to build trusting relationships and then explore their experiences through private interviews. We aim to:

• understand the specific impact these symptoms have on their everyday lives,
• work with them to hear what would help them to raise awareness in the community, and,
• start to understand what is needed to improve health promotion and services to provide opportunities for bladder improvements for women with FGM.

What we hear will shape the project that follows to enable the development of resources and service needs that improve outcomes for women who experience bladder difficulties due to FGM.

Specifically, this funding will enable the researcher to work closely with the Sirona Health Links team to enable appropriate engagement with women and carry out the interviews. The funding will also make sure we can provide appropriate support for women to take part in this project including sessions to hear more about the project and fund translators to help with the interviews.

As part of this project, a wider team will be established for the NIHR research that will follow.

Who is leading the research?

The research is being led by Professor Nikki Cotterill, from the Centre for Health and Clinical Research, School of Health and Social Wellbeing, University of West of England, Bristol.

Further information

For more information or to get involved in this project, please contact bnssg.research@nhs.net.