Understanding children’s experiences of self-wetting (incontinence) in humanitarian contexts

Humanitarian contexts – characterised by disruption and instability – present unique challenges to researchers. Conducting research with children in these contexts presents further difficulties. Children have a right to be heard, including in situations of crisis, but their participation in the design of emergency WASH programmes may be limited due to humanitarian professionals – aware of the vulnerabilities of children during a crisis – emphasising protection instead. As a result, emergency WASH programmes may not meet the specific needs of children, including children who sometimes wet themselves.

Children self-wetting can be due to them having the medical condition of urinary incontinence, defined as the involuntary leakage of urine. Or it can be due to them not wanting to use, or not being able to use, the toilet facilities available (known as social or functional incontinence). Self-wetting is a global public health challenge: the physical health of children can suffer; they can miss out on educational and social opportunities; they may have increased protection risks due to caregiver frustrations in the home and/or the stigma of incontinence in the community; and the emotional effect of the condition on daily life can be significantly negative.

Yet little is known about how children in humanitarian contexts experience self-wetting and therefore how the WASH sector can best meet their needs. This project designed a participatory research method – the Story Book methodology – to understand the experiences and needs of children who self-wet living in refugee camps in Cox’s Bazar, Bangladesh, and refugee settlements in Adjumani District, Uganda. Alongside this data from children, analysis of interviews with caregivers, key informants and data collectors has resulted in a better understanding of self-wetting in children in these contexts, and how the Story Book methodology can be adapted and improved for use in emergencies and other contexts where children self-wet.