Incontinence and self-wetting

Many of us will experience incontinence at some point in our lives. Here you can read about some of the work Dani has been part of to help us bring this topic out of the shadow of the toilet cubicle and into the light.

Research projects

Piloting and improvement of the incontinence training package for WASH practitioners in emergency contexts (Led by Oxfam GB and HelpAge. Dani is an Expert Advisor)

Package of incontinence training materials for WASH practitioners (based on research from Uganda, Bangladesh, Ethiopia, Malawi and Ghana. Led by Oxfam GB, REGIG and The University of Western Australia. Dani was a co-lead)

Children and their caregivers’ experiences with incontinence (Uganda and Bangladesh) (including details on the development of a new disability-inclusive framework for sanitation for children in emergency contexts. Led by The University of Western Australia and University of Leeds. Dani was the Principal Investigator)

Improving the lives of older people with incontinence (led by Oxfam GB and HelpAge, Ethiopia and Malawi. Dani was an Expert Advisor)

Breaking the silence on incontinence (Dani was a co-Principal Investigator)

Guidance on supporting people in low resource contexts with incontinence

Toilet truths: An energiser activity for developing empathy with those being asked to discuss their incontinence.

Incontinence: We Need to Talk About Leaks: basic introduction to incontinence and the realities that people living with incontinence face; practical suggestions for how to identify and engage with people living with incontinence to start ‘talking about leaks’; and practical suggestions for the WASH sector (and others) to contribute to reducing inequalities associated with incontinence.

How to Talk About Incontinence: A Checklist

Guidance on supporting people with incontinence in humanitarian and low- and middle-income contexts (LMICs): an explanation of what incontinence is, who might experience the condition, and how incontinent people and their carers in LMICs (including humanitarian contexts) can be supported to manage the condition (or see summary guidance)

Case studies: a compilation of case studies related to incontinence in low- and middle-income countries (LMICs), including in humanitarian contexts; and

References: websites, peer-reviewed literature and grey literature related to incontinence in low- and middle-income countries (LMICs).

Editorials/Blogs

2022 Hear from 5 grantees striving for better health outcomes for refugees (first example), Elrha Blog

2022 Conducting research with children: Developing the story book methodology. Elrha blog

2022 Conducting research with children: Honouring a child’s right to be heard. Elrha blog

2019 Breaking the silence on women’s experiences of incontinence. University of Leeds

2017 Why we need to talk about incontinence. The Conversation

Journal articles

2024 Experiences of children’s self-wetting (including incontinence) in Cox’s Bazar’s Rohingya refugee camps, Bangladesh, PLOS Global Public Health

2024 “Do not forget us”: The shared experiences and needs of people living with incontinence in humanitarian contexts, Journal of Water, Sanitation and Hygiene for Development

2023 Understanding children’s experiences of self-wetting in humanitarian contexts: An evaluation of the Story Book methodology, PLOS Global Public Health

2021 Measuring the prevalence of urinary incontinence in children aged five to 12 in an emergency setting: lessons learned in Tukaley, Ethiopia. Waterlines

2021 CHILD-SAN: a new disability-inclusive framework for emergency sanitation for children aged five to 11, based on a systematic review of existing guidance. Journal of International Humanitarian Action

2018 Incontinence in Zambia: Understanding the coping strategies of sufferers and carers. Waterlines

Presentations

2023 CHILD-SAN: A Disability-Inclusive Framework For Emergency Sanitation For Children Aged 5 To 11 (5 mins video), Emergency Environmental Health Forum

2023 Understanding children’s experiences of self-wetting (incontinence) in humanitarian contexts (5 mins video), Emergency Environmental Health Forum

2023 Understanding Children’s Experiences of Self- wetting (incontinence) in Humanitarian Contexts (PDF of slides – you can also download the slides with audio – approx. 12 mins – from here), Water and WASH Futures Conference

2022 How to better understand the experiences of children who wet themselves (PDF of slides), Colorado WASH Systems Symposium

2022 CHILD‑SAN: a new disability‑inclusive framework for emergency sanitation for children aged five to 11, based on a systematic review of existing guidance (poster), Colorado WASH Systems Symposium

2022 Understanding children and their caregivers’ experiences with incontinence in humanitarian contexts (link to video, also embedded below. Our work is presented from 35-42 minutes), WASH Cluster Hygiene Promotion Technical Working Group Speaker Series, UNICEF

See Lead Researcher, Claire Rosato-Scott, speak about the research from 35-42 mins, and answer questions from 54 mins