How to Talk About Incontinence: A Checklist

Claire A. Rosato-Scott, Dani Barrington, Amita Bhakta, Sarah House, Islay Mactaggart, Jane Wilbur

Research output: Other contributionpeer-review


Incontinence is the medical term used to describe the involuntary loss of urine or faeces. Women, men, girls, boys and people of all genders, at any age, can experience incontinence. A person with incontinence can experience leakage occasionally, regularly or constantly; and leakage can happen at any time, day or night.

A person may also experience leakage of urinary or faecal matter due to not being able to get to the toilet in time or not wanting to use the toilet facilities available. This is known as social, or functional, incontinence.

In many low- and middle-income countries (LMICs) understanding of incontinence is still in its early stages: the term ‘incontinence’ may not be known, knowledge of the condition is rare, and the provision of support is lacking. Those who experience incontinence may face stigma due to having the condition, and this may affect their willingness or confidence to talk about it.

There is a need to better understand incontinence in LMICs, and how best to support people living with the condition to improve their quality of life. This requires having conversations with individuals that experience the condition, and with individuals who care for those who do: they will have the lived experiences of what it means to live with incontinence practically, emotionally and socially for them and their families.

Living with incontinence can have a range of impacts on the people living with it and their carers. These include increased stress and distress; additional needs for water and soap; and restricted ability to join in community activities, school or work. Living with incontinence can also lead to a range of protection issues. The potential challenges that people face may be quite diverse and may vary between people and households.

The checklist below, and corresponding page references to ‘Incontinence: We Need to Talk About Leaks’ can be used to increase your understanding of incontinence and the options available to support people living with the condition; and provide guidance on how to have conversations to understand how best to support people living with incontinence in your area.
Original languageEnglish
PublisherInstitute of Development Studies
Number of pages6
Place of PublicationBrighton, UK
ISBN (Print)978-1-78118-708-1
Publication statusPublished - 22 Oct 2020


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