We recently ran our side event, “Incontinence Needs in Low and Middle Income Countries (LMICs)”, at the WEDC 2017 Conference, “Local Action with International Cooperation to Improve and Sustain Water, Sanitation and Hygiene (WASH) Services” in Loughborough, UK. The conference attracts a wide audience of people working in, and around, the global WASH sector, many of whom are key in helping shape public-health in LMICs and humanitarian zones around the world. So, WEDC felt a perfect match for our aim to raise awareness of incontinence needs in these contexts, in particular describing the current knowledge base, gaps in practice and exploring future action and research needs.
A fitting preface to our workshop was the move to the UN ‘Sustainable Development Goals (SDGs)’, which define and assess our progress toward global targets for public health. For the first time, the needs of everyone – which includes those who live with incontinence – can be seen to be integral with the goal “that by 2030, achieve access to adequate and equitable sanitation and hygiene for all, and end open defecation, paying special attention to the needs of women and girls and those in vulnerable situations.” (UNDESA, 2015, SDG6.2).
With this in mind, we were pleased to be able to share experiences and ideas with those working for governments and NGOs, through to academic researchers and policy makers. Participants found themselves sat amongst an array of incontinence products – continence pads, reusable adult underwear for mild-incontinence, maybe the odd catheter – some of which can be found (if you search hard enough) in some LMICs and others that may not be at this stage. Not your ‘typical’ workshop, but intended to encourage a lively, interactive session, which it definitely turned out to be…
We first heard from Sarah House, who gave an overview of incontinence in the context of LMICs, and the limited amount of policy commitment and action in both humanitarian and development contexts which addresses this area; although she highlighted a few policy / strategy level commitments have more recently been made on this issue. Limited access to water and sanitation services, poor product availability and high costs, act to amplify the well-documented challenges faced with incontinence found in higher-income settings, including stigma, social isolation and reduced quality of life. There is also a feeling that these needs remain poorly addressed in all related sectors (WASH, health, disability, protection, logistics etc.) with the risk of falling ‘between sectors’ (as it is ‘someone else’s problem’) and receiving much less recognition than it deserves.
We then heard two fascinating field reports. Zara Ansari spoke of her research investigating the challenges, management and coping mechanisms of people with disabilities living with incontinence and their families in Pakistan. Perhaps most striking is that there exists no word for ‘incontinence’ in this region, making the topic, and condition, particularly difficult to address. Products like disposable diapers could only be found in medical stores and costs were high, rendering them largely inaccessible. As a result people often resorted to home-made solutions like cloth pads and plastic-bag diapers. Zara used a PhotoVoice [i]approach to her research which involved people who are living with incontinence themselves documenting their experiences visually and has led to some powerful images; documenting issues such as stigma and social isolation which were common and also had a big impact on caregivers – making employment difficult or impossible.
Claire Scott then discussed her field-work in Zambia to understand the coping strategies of those with incontinence and their carers. Interestingly, Claire found it difficult to uncover evidence or reporting of incontinence, either in social or clinical (hospital) contexts. However, given the general prevalence of the condition it is likely this reflects under-reporting. This could be due to many factors, including a perceived lack of importance in healthcare, but it is most likely a result of social taboo. Here there also seems to be a gender-bias, with stigma affecting women more than men. Lack of accessibility to treatment/management options was again highlighted, both in terms of cost and geographic location.
Encouragingly, both Zara and Claire ended on positive notes, that despite the challenges faced there is hope for improvement – people are willing to try new solutions (e.g. making their own pads) if they are provided the opportunity – and so take back control of their lives.
Following these field reports, Åshild Skare gave a thought-provoking account of incontinence needs and challenges in humanitarian contexts, stemming from the work of Norwegian Church Aid (NCA). We heard how conflict situations not only pose challenges to the provision of adequate water, sanitation and hygiene facilities, but also can lead to cause stress-incontinence as a result of psychosocial stress, particularly in children and teenagers. NCA have started to address incontinence in their humanitarian WASH programs by providing additional sanitary pads, underwear, bucket and soap, as well as adult diapers for use by people who have to manage incontinence as part of their non-food item distributions, with introduction in humanitarian responses in Liberia, Lebanon, Tanzania and Iraq. Both NCA and one of their key donors have expressed interest and commitment to continuing to work on this issue.
Lastly, Pete Culmer discussed products and technologies used for incontinence care. There are a wide-array of technologies for treatment and management available in higher-income contexts, however their cost and infrastructure-needs are prohibitive and render them largely inaccessible in LMICs and humanitarian contexts. With this in mind, we discussed potentially disruptive technologies and initiatives which can help to address this situation; from frugal design (e.g. low-cost manufacture of pads), to sustainable approaches (re-usable garments made locally) to mHealth [mobile based health messaging] initiatives to provide improved information.
During the discussions, it was highlighted that in Amita Bhakta’s PhD research on WASH needs of menopausal women, that incontinence was also raised an issue of concern as well as the increased need for bathing and laundry and soap; both of which also came out strongly in Zara and Clare’s research. It was also observed that as a sector we seem to be missing an opportunity; organisations increasingly work to support the manufacture of reusable sanitary pads but we are not also including re-usable incontinence pads at the same time. Health promotion also offers a positive opportunity to contribute to breaking down stigmas and taboos and to empower. It was also discussed that there is a need to think more about different age ranges related to their WASH needs – we increasingly focus on girls in school, but older people are often forgotten – and it was also observed that women who have multiple births may also face more chance of incontinence as their bodies may not so easily recover.
The issue of terminology was also discussed, as few people seem to recognise the term ‘incontinence’. Words which seemed to be more understandable included: ‘leakage’, ‘loss of control’ or ‘can’t control when going to the toilet’. One observation was also made during the follow up discussions that it might be positive to move away from the term ‘incontinence sufferers’ to find a more positive term… something for continuing discussions.
Outcomes and Themes
So, a wide-variety of topics were covered during the presentation and discussions at the end of the workshop, but common themes emerged:
Awareness and Acceptance: There is little awareness of incontinence and the challenges it poses to people affected by it in LMICs, both socially and in healthcare contexts, including by professionals such as doctors and midwives. Poor social acceptance and stigma around those with incontinence is a challenge to being able to improve the situation and quality of life for people who live with this condition. It acts as a barrier preventing improvements and should be considered a priority target to address.
Healthcare Staff Recognition: There is a failure to address the causes and management of incontinence in existing healthcare systems in LMICs. For example, care and advice to women who face incontinence after childbirth is largely overlooked.
Bathing and Laundry Needs: As well as the challenge of having access to materials that can be used to soak up fluids, major needs relate to an increased need to bathe and to do laundry and the increased soap and water requirements associated with this.
Cross-Sector Interventions: There is a risk that the WASH and other relevant sectors (Health, Disability, Protection, Logistics) will continue to overlook incontinence, leading to it falling between the gaps in sectors.
Accessible Technology: There are limitations in accessible and affordable technologies (such as materials for soaking up fluids or higher technical products such as catheters). Furthermore, interventions are required which also have a chance to be more economical, sustainable and do not contribute to additional long-term disposal problems (sanitary waste).
Associated Factors: Incontinence is often linked with a range of other factors such as age, disability, childbirth, menopause and mental health, most of which also suffer taboos – we need to consider that people’s WASH needs may be different and that some people may not have the same level of voice to discuss these needs as others.
Are you interested in these topics and would like to hear more information? Please contact the IMPRESS team and we’ll be happy to help.
[i] Photovoice is a technique where participants of a study are given a camera and asked to record their own perspective on a particular subject