A new ground-breaking guide on incontinence, seeking to break taboos and share practical advice for carers and health workers, is published today by the Institute of Development Studies (IDS). It also recommends actions needed to tackle incontinence and help achieve the targets of sanitation and hygiene, as well as health and well-being for all, by 2030.
The guide “Incontinence: We Need to Talk About Leaks” from The Sanitation Learning Hub at IDS includes personal testimonies from those experiencing involuntary loss of urine or faeces from countries including Ghana, Uganda, India and Pakistan. It also sets out sensitive but practical advice and guidance on an issue that even water, sanitation and hygiene (WASH) professionals used to talking about the safe management of human waste are reluctant to discuss.
Incontinence affects millions of people globally of all ages, backgrounds and genders in every country, for example women post-childbirth, older people with dementia, people with neurological conditions such as epilepsy, menopausal women and people who overuse alcohol and drugs. It is particularly challenging in settings with high levels of poverty and marginalisation and limited access to water and sanitation, where water or soap is not readily available to clean soiled clothes or wash with.
Aimed primarily at NGO and community workers working on sanitation and hygiene issues at a local level in low income countries around the world, the guide recommends:
- Talking about leaks: learn about the challenges people living with incontinence may be facing, have conversations to understand how best to support them, and offer practical advice or solutions.
- Support people to live with dignity and be a sensitive listener: consider the comfort of people, ask for permission to ask questions and talk in a private location.
- Normalise incontinence: advocate that incontinence is not a condition to be ashamed about, it happens to a wide range of people and there are options to improve the quality of life of those that experience it, or care for those that do.
- Challenge resistance: incontinence has a significant impact on the quality of life of people that experience the condition, or who care for people that do. It crosscuts many issues, for example, health, WASH, gender, disabilities, children and older people’s right and dignity. Everyone working across these sectors must coordinate and work together.
Claire Rosato-Scott from the University of Leeds and Research Collaborator at the Sanitation Learning Hub, who co-authored the guide, said:
“There can be so much stigma associated with incontinence that it’s rarely spoken about, even by medical professionals. And if people who experience incontinence suffer from shame they may be hidden from view, either by their family or community or due to choosing to isolate themselves.
“Incontinence is an issue we need to bring out of the shadows and help people affected live more dignified and full lives.”
“The toilet problem is a serious problem because if I open bowels or suffer from diarrhoea, I defecate where I am and they clean me … it becomes a health problem to other people around me.” (Woman, 78 with arthritis and spinal curvature, in Malawi) (White et al. 2016)
“If I was in public and were to urinate, it’ll look bad because if it occurs, I don’t know how am going to do it because of the public and I’m ashamed to have the public witness something like this from me. It is better I remain isolated and take care of myself separately from everyone” (man, walking and self-care functional limitation, in Vanuatu) (International Centre for Evidence in Disability (ICED) 2020)
“Let’s say within the night I have seizures but there is limited water. That means I cannot wash my body and clothes properly so this is a major challenge. It means there are a number of people who you can tell have epilepsy because of how they smell…It’s a tough moment for me.” (Man 27 with epilepsy) (White et al. 2016)
Notes to Editors
- The Sanitation Learning Hub is based at the Institute of Development Studies and aims to promote & facilitate learning and research in the Sanitation and Hygiene sector.
- Authors of the guide ‘Incontinence: We Need to Talk About Leaks’ are Claire Rosato-Scott (University of Leeds); Dr Dani J Barrington (The University of Western Australia); Dr Amita Bhakta (Independent Consultant); Dr Sarah J House (Independent Consultant); Dr Islay Mactaggart and Jane Wilbur (London School of Hygiene & Tropical Medicine).
- The Institute of Development Studies (IDS) delivers world-class research, learning and teaching that transforms the knowledge, action and leadership needed for more equitable and sustainable development globally. See ac.uk for more information.