Incontinence in Developing Countries: What Do We Know?

In 2013/14, when working in the WASH sector in East Africa, I would often see ‘vulnerable groups’ identified in emergency assessment reports and humanitarian plans. It seemed to be expected that older people, those with physical disabilities and/or learning difficulties, GBV survivors etc... were identified as ‘vulnerable’ and that it was important to show that activities were either targeted towards them, or supported them through their vulnerabilities.

But what makes these people vulnerable? What are the day to day activities they need support with to live with dignity? Is there more WASH actors could – and should – be doing to support these groups (other than designing and constructing accessible and disability-friendly latrines and water points)? Are we missing something? I began to realise that we were; we were missing the issue of incontinence.

Why incontinence?

This really hit home when I was part of an evaluation of a Red Cross project following a cyclone in the Seychelles. I spoke with a man who stated that the most important thing he had needed, but had not been supported with, was adult nappies and mattress protectors for his brother who has learning disabilities and suffers from incontinence.

The more I talked with colleagues about incontinence, the more stories came to light. A colleague in Ethiopia working with refugees in South Sudan recalled an elderly woman with urinary incontinence who needed help to collect food and other items at the distribution point. Everyone, including some working for humanitarian agencies, flat-out refused to help her because of the offensive smell, and the fear of being associated with her if they assisted.

What do we know?

The International Continence Society estimates that incontinence affects 1 in 4 women over the age of 35 years, and 1 in 10 adult men. Incontinence can be urinary and/or faecal, and the type and severity of leakage varies dramatically from person to person.

Incontinence affects 1 in 4 women over the age of 35 years, and 1 in 10 adult men

People living with incontinence may be concerned with how to prevent themselves from leaking urine and/or faeces, how to clean themselves discretely, and how to dispose of any materials they may have used to soak up the urine and/or faeces. Many people living with incontinence suffer embarrassment and fear of leakage or smell, and may be ostracised, isolated or teased. All of these factors can have severe negative impacts on day-to-day activities, everyday life and personal confidence and dignity.

Taking stock: incontinence in humanitarian and development settings

In 2015, as an initial step toward capturing information, resources and experiences around incontinence in such settings, SHARE and partner WaterAid co-funded me to conduct a desk-review. Aimed primarily at WASH actors, the review provides an overview of incontinence, gives information about how people generally manage their incontinence, and outlines experiences and resources that may be useful, as well as recommendations for the future.

Very little information from humanitarian and/or development contexts was found. Rates of incontinence in these contexts may even be higher than global estimates, due to poor access to health care and services and a higher number of young mothers, in addition to the physical and psychological effects of conflict. Further, people may not have access or be able to afford products such as: disposable or reusable pads and diapers, commodes (pictured), and mattress protectors. Incontinence may prevent people from being able to work or contribute towards a livelihood for their family. In humanitarian contexts, incontinence may restrict people’s ability to access distributions or to collect water, for example.

The desk-review found just three resources (relevant to the humanitarian/development context) that had specific mention of incontinence, two of which are the SPHERE handbook and the Minimum Standards for Age and Disability Inclusion in Humanitarian Action.

Resources and experiences from other programmes, such as MHM and USAID’s Hygiene Improvement Project around the integration of WASH into HIV/AIDS home-based care programming, could have the potential to be adapted and may also provide useful learning.

The way forward

Although currently incontinence is a neglected issue, momentum seems to be building. A few humanitarian and development actors have started talking about incontinence, recognising its importance, and are beginning to address it through their programmes.

Further research is urgently needed to explore the needs of incontinence sufferers – particularly their hygiene and WASH needs, and what options are available in terms of simple re-usable materials – and to increase action in the field and learning on what works. References to incontinence should be incorporated into existing resources, assessment tools, and guidance notes. WASH and health staff need to be sensitised on the issue of incontinence, and their confidence and capacity built to address incontinence in activities and programmes. Lastly, the monitoring of the inclusion of and support to vulnerable people (including those who suffer from incontinence) in WASH activities and interventions needs to be strengthened.