‘Do not forget us’: the shared experiences and needs of people living with incontinence in humanitarian contexts

Abstract

The medical condition of incontinence is defined as the involuntary loss of urine or faeces. People may also wet or soil themselves due to not wanting, or not being able, to use the sanitation facilities available (social incontinence). Nascent research conducted in humanitarian contexts has consistently found that the consequences of incontinence are many and overwhelmingly negative. This paper contributes to the growing body of evidence on the lived experiences and needs of people with incontinence in humanitarian settings. It summarises shared learnings from research funded by the Humanitarian Innovation Fund which was conducted in Bangladesh, Ethiopia, Ghana, Malawi and Uganda. It also provides practical advice to researchers and humanitarian practitioners on how to better support people with incontinence: recommendations include public education campaigns to change the perception of incontinence; improving water and sanitation facilities by ensuring safe access for all and adapting to support use by all; and a better supply (in terms of quantity and functionality) of non-food items. It concludes with a reminder that as everyone experiences incontinence differently, sufficient time and resources must be allocated to engage with people experiencing incontinence and their caregivers to truly understand how to improve their quality of life.