Left alone and behind: Experiences of living with incontinence in a Sudanese refugee camp and how WASH practitioners can support

Incontinence – the involuntary loss of urine and/or feces by people of any gender, age, or ability – is a hidden, stigmatized issue not frequently addressed by humanitarian actors (ELRHA 2019). Incontinence can affect a wide range of people including people with disabilities, elderly or ageing people, expectant or new mothers, and those with certain types of illnesses such as cancer or diabetes (Rosato-Scott et al. 2020). People who have experienced highly stressful situations such as conflict (Summers et al. 2019) or who have faced violent assault including rape can also become incontinent due to their injuries (Rosato-Scott et al. 2020). Incontinence can have a significant negative impact on a person's quality of life, personal dignity, and physical and mental health – including anxiety and depression (House & Chatterton 2022).

Incontinence is often considered a medical or health issue, however, a multi-sectoral approach is needed to address this complex issue. While there is clear consensus that access to water, sanitation, and hygiene (WASH) services is necessary to manage incontinence (Rosato-Scott et al. 2024), collaboration with other sectors is important. Health services are essential for diagnosis, treatment, and incontinence advice (for example, access to therapy or rehabilitation including medical equipment, or management of skin sores) (IFRC 2022). Particularly in humanitarian or conflict situations, where the risk of trauma and sexual and gender-based violence is high, the mental health and psycho-social support (MHPSS) and protection sectors can provide specialist support for improving well-being, and inclusion can work to reduce risks and connect people with incontinence to specialist support or local organizations (for example, disability groups).

It is well documented that people with incontinence have significantly increased WASH needs as they need to manage leaking urine and/or feces (Bhakta et al. 2021; Wilbur et al. 2021; Adjorlolo et al. 2023). This includes extra water and soap for personal hygiene and for washing and drying soiled or smelly clothes or bedsheets, as well as private WASH facilities for laundering, drying, and disposing of materials (The Sphere Project 2018; IFRC 2022; Rosato-Scott et al. 2024). People with incontinence often face difficulties reaching communal sanitation facilities on time (and therefore leak urine and/or feces onto their clothes), as shared WASH facilities in humanitarian contexts may be far away or they may have to stand and wait in queues to access the facility (Bhakta Fisher & Reed 2019; Wilbur et al. 2021). Leakage of urine and/or feces can occur at any time, day or night. People living with incontinence often need assistive items such as toilet chairs, commodes, bed pans, and waterproof mattress covers to manage the leakage at night at home, and if they are unable to reach communal WASH facilities that are far away (WHO 2023).

Recent research on people's experience of incontinence in humanitarian contexts has focused on their WASH needs and priorities for support, and several organizations have begun to identify and support people with incontinence through WASH responses (House & Chatterton 2022). Despite this progress, there remains a lack of published evidence highlighting the lived experiences of people with incontinence in different contexts. There are gaps in evidence around non-food item (NFI) distributions for incontinence and the potential for using market-based approaches such as cash or vouchers. WASH practitioners need evidence and learning to guide their decision-making in designing and implementing programs, that enable individuals to be able to manage incontinence at the household level (ELRHA 2023).

Armed conflict broke out in the Tigray region of northern Ethiopia in late 2021, leading to large-scale internal displacement and thousands of refugees fleeing to eastern Sudan. The Sudanese Red Crescent (SRC) rapidly began implementing humanitarian WASH actions to meet immediate needs in two major camps, Um Rakuba and Tunaydbah, in Gedaref State. Assessments conducted in 2022 by SRC and partners found that camp populations were under increasing strain to meet their basic sanitation and hygiene needs – especially those often marginalized such as older persons, people with disabilities, rape survivors, and people with chronic health conditions for whom incontinence was of high concern.

In response, the SRC with the support of the Netherlands Red Cross conducted an in-depth mixed-methods assessment (including Rapid Assessment of Markets) from July to December 2022 in Um Rakuba and Tunaydbah refugee camps (approximate populations of 20,000 and 23,000 refugees, respectively). The study focused on understanding the needs of people living with incontinence in a refugee camp setting, and how these needs are (or are not) being met by the humanitarian WASH response. The purpose of the research was to inform future programming, and how humanitarian actors (particularly WASH) can better support people living with incontinence – in particular with hygiene-related NFIs, accessible and inclusive WASH facilities and referral to additional services as relevant (e.g. psycho-social support (PSS), health services).

This paper contributes to the growing body of evidence of documented experiences of people living with incontinence, from a remote refugee camp setting and with original learning from the market-based programming perspective (or cash and voucher assistance, CVA).

A mixed-methods approach was used to conduct WASH and market assessment in Um Rakuba and Tunaydbah refugee camps, with a focus on specific hygiene and sanitation needs. Specific emphasis was placed on ensuring the participation of older people, people with disabilities, and people who had experienced trauma from war or sexual- or gender-based violence, to make their voices heard and their preferences included in decision-making for WASH programming in the camps.

A variety of data collection methods were used including key informant interviews (KIIs), focus group discussions (FGDs), an interviewer-administered household survey, and in-depth interviews with people living with incontinence (Table 1). A rapid market assessment (RAM) was conducted to understand the capacity and feasibility of local markets to meet the needs of refugees living with incontinence. Observations of communal (shared) WASH facilities were conducted.

A female consultant with a medical background (PhD) guided the overall WASH assessment and specific data collection related to incontinence. Oversight and technical guidance were provided by Netherlands Red Cross advisors based both in Sudan and Europe. SRC volunteers who are themselves refugees from the Tigray Region in Ethiopia were survey enumerators and supported facilitation, helping to minimize any cultural and language barriers.

Quantitative data were collected through a household survey using a structured interviewer-administered questionnaire. Households were randomly selected based on the refugee camp ‘block’ structure. The survey was administered by trained SRC volunteers using Kobo Toolbox (mobile phone-based surveys). Quantitative data was cleaned and then analyzed using SPSS.

Qualitative data were collected through FGDs, KIIs, observations, and in-depth interviews with people living with incontinence to provide a much deeper understanding of the WASH-specific needs, cultural norms and stigmas, challenges and preferences of people living with incontinence. KIIs were conducted with staff working in health facilities, local community leaders or block leaders, camp-based organizations, and relevant staff from the Ministry of Health, INGOs, and the Commission for Refugees.

People living with incontinence were identified during the household survey and through referrals from healthcare facility staff and local block leaders. In addition, several people with incontinence heard about the study and self-referred to voluntarily disclose and discuss their problem and seek further information. People with incontinence were interviewed using a semi-structured questionnaire.

Data collection took place in private spaces, with a limited number of people. FGDs were disaggregated by age and sex, to overcome cultural barriers around sensitive topics and to promote open sharing. General information and/or referral (where appropriate) was made to the local health clinic or organizations providing psycho-social or mental health support. Qualitative data was digitally recorded and/or summarized in written notes and analyzed using a Qualitative Content Analysis approach.

An RAM was carried out to investigate the availability of incontinence-related items in local markets (via a market survey), and to determine the capacities of local traders to increase the supply of specific items (e.g. waterproof mattress protectors, commodes). In addition, feasibility and challenges related to the use of cash or voucher modalities to deliver support to meet incontinence needs were analyzed. The RAM included KIIs (N = 12) with local vendors and traders in the markets of both camps.

Prospective participants were informed in the local language (Tigrayan or Sudanese dialect of Arabic) about the study aims, what the data will be used for, and what to expect in participating. Informed consent was collected from all participants who were involved. The goal of this study was to inform and guide humanitarian programming; there was no pursuit of research objectives. Therefore, formal Institutional Review Board review or ethical approval from another national agency was not required prior to conducting data collection. The Netherlands Red Cross funded this study, as part of the humanitarian response in Sudan.

Sensitive terms like ‘incontinence’ or ‘menstruation’ were translated into Arabic and Amharic and discussed first with SRC volunteers to ensure clarity and acceptability. The term used to describe ‘incontinence’ was: shanten fitanen zymekusisor (or roughly ‘difficulty waiting [with urine and/or faeces] until arriving at the toilet’). The study lead consultant trained volunteers and staff about incontinence and its social and emotional impacts of it, so they were able to explain clearly in everyday language and better address the barriers related to shame and stigma.

The self-reported prevalence of incontinence was 9% in Um Rakuba and 8% in Tunaydbah (established using data from the household survey). Incontinence was experienced by older persons (20–25%), people with disabilities (12–15%), people with certain types of illness or conditions (28–38%), women and adolescent girls (12–15%), and people who had experienced highly stressful situations (12–15%). Local health facilities confirmed receiving cases of people suffering from heavy forms of incontinence due to prostate tumor, urinary tract problems, and survivors of rape.

An overview of the diverse profile of people living with incontinence in Um Rakuba and Tunaydbah can be provided by quotes from the in-depth interviews:

Overall, there were low and varying levels of knowledge about incontinence among refugees, health staff, and key stakeholders. Thirty-five percent of survey respondents in the Um Rakuba camp indicated they had heard about incontinence before. Respondents in the Tunaydbah camp showed a slightly higher level of awareness (43% reported having heard about incontinence). Older women (50+) in the age of menopause were generally aware of incontinence but did not report it as a menopause symptom.

Many people living with incontinence reported misconceptions and misinformation, most commonly related to spiritual or supernatural powers, or that incontinence was contagious:

Staff working in the camp health facilities in both camps did not have knowledge or special medical training to support people with incontinence. In addition, they reported a lack of medical supplies and equipment to help patients manage incontinence, either in the health clinic or to support them to manage incontinence at home. Other local service providers and organizations interviewed, as well as WASH practitioners, reported limited to no knowledge about incontinence.

Very high levels of perceived stigma associated with incontinence were reported. Ninety-seven percent of respondents in Um Rakuba and 93% of respondents in Tunaydbah reported there is some stigma associated with incontinence or that it remains a taboo subject.

Qualitative data indicated that the most common feeling was social marginalization due to uncontrolled leaks, odors (smell), and shame. For example, older men who need to move around carrying an empty plastic bottle (to be used to catch urine urgently) reported being mocked and feeling humiliated. People with incontinence experience strong feelings of shame, derision, and isolation.

Family members and sometimes neighbors or refugee volunteers (when the person has no family) are key actors in supporting people with incontinence. They provide help with bathing and washing clothes, despite reporting having little or no access to water and detergents in many cases. Many felt unsupported, shamed, and marginalized.

Few NGOs or social services were reported as actively assisting older people or people with disabilities in the refugee camps. In FGDs, Norwegian Church Aid (NCA) was mentioned as providing specific assistance to the elderly, and Norwegian Refugee Council (NRC) and the DRC (Danish Refugee Council) were the main known actors distributing cash or in-kind hygiene items. None of these organizations were able to be interviewed during the assessment and therefore the team could not verify if there was a component specifically related to incontinence, or only broad age and disability inclusion support.

The main reported challenges related to incontinence were increased time and money spent on washing, drying, and purchasing hygiene items (41% of respondents in Um Rakuba and 36% in Tunaydbah). Exclusion from personal relations and community participation (18% in Um Rakuba and 45% in Tunaydbah) and no access to basic services (23% in Um Rakuba and 11% in Tunaydbah) were also reported to be a considerable challenge.

A severe lack of appropriate WASH facilities was identified as part of the broader WASH assessment, affecting all camp residents not only those living with incontinence. Long distances from the household, waiting time, and the need to queue at latrine facilities were key factors that enhanced the risk of leaking and feeling embarrassed.

Another key theme from qualitative data was the increased need for frequent washing of clothes and bed linen, despite many reporting a lack of water and detergent they needed for this. Those living with a physical disability reported having difficulties in accessing communal latrines. All respondents (100%) across both camps reported that there was not enough water and that the water was not clean.

People with incontinence reported their lack of or reduced mobility as a main barrier to accessing the hygiene kit distribution sites.

Psychological suffering, a sense of isolation, and a lack of means to take care of themselves were highlighted as key challenges for people living with incontinence. For some, the psychological impact of incontinence and feelings of hopelessness were severe, with one 78-year-old man saying:

Findings from the FGDs and KIIs were similar in all age and sex categories. Respondents reported receiving soap, water containers, hand sanitizer, and dignity kits or pads and underwear. Older men (those 65 years or older) including men living with disability reported receiving less than other groups. Older women (50 years or older) including women living with disability reported receiving more hygiene items compared with other groups, however not specifically targeted with menstrual hygiene management (MHM) kits or sanitary pads.

Low levels of satisfaction were reported regarding the type, quantity, and quality of hygiene items. The quantity of items received was considered not enough to meet their needs, and items were not distributed on a regular basis. Data indicated that refugees in Tunaydbah had generally received more than those in Um Rakouba.

A variety of preferred hygiene items to manage incontinence at the household level were reported by people living with incontinence in Um Rakuba and Tunaydbah camps (Table 2). Many respondents stated that these items were not available in nearby markets and shops in the camps. At the time of the study (prior to the civil war), many of these items could be ordered through larger markets from Khartoum and supplied in approximately 1 week. However, the situation and availability are likely to be completely different now with supply chains affected or non-functioning.

No specific trend or preference between reusable and disposable items, especially absorbents such as pads. In Um Rakouba, 56% of survey respondents preferred reusable products, with qualitative data indicating one main reason as avoiding dependence on the sporadic relief distributions. In Tunaydbah, 63% of respondents preferred disposable products. Key reasons for preferring disposable items included the burden of washing and drying the reusable items, not being familiar with them, lack of water, and not knowing how to wash soiled items in a safe way. Older women (50 years or more) and men (60 years or more) who participated in the FGDs reported a strong preference for disposable pads to avoid cleaning them all the time, because soap is scarce and access to water is a challenge.

Survey respondents were asked how they plan to dispose of used (soiled) items such as sanitary pads and adult diapers. In both camps, most survey respondents reported planning to dispose of a latrine (60% in Um Rakuba and 62% in Tunaydbah). Fewer respondents planned to dispose of used hygiene items in the rubbish bin (14% in both camps) or by burning (13% in Um Rakuba) or burying (14% in Tunaydbah). Data collected in the in-depth interviews confirmed the same practices, of disposal of products by ‘burying or burning or sometimes put in toilet’. – 54-year-old female, survivor of rape.

People with incontinence strongly preferred in-kind distribution for fear of unavailability of items and distance to the market. Many reported a fear of not being able to find appropriate items in the market when cash or vouchers are provided, or that they could be robbed. Many older people and those with disabilities reported not being able to stand in long queues for registration or receiving cash and the fear of being neglected (left out).

A question aligned with the Washington Group Short Set on Functioning (Washington Group on Disability Statistics 2023) was used to identify people with incontinence at the household level (‘Do you (or someone in your household, he/she/they) have difficulty controlling their urine or faeces, or have a challenge with foul odour/smell’, as well as through referral from the health clinic). Subsequently, in-depth qualitative data was collected to better understand the needs, challenges, and perceptions of people living with incontinence (especially for those groups usually identified as ‘neglected’).

This study demonstrates that with the right consultation process in place and training, data on incontinence can be collected from a very diverse group of people. Effective and fit-for-purpose data collection is possible when incontinence is incorporated into a broader WASH assessment, rather than a separate standalone study that can be resource and time-heavy. Testing of tools and feedback from people with incontinence on the appropriateness of the language is a key ingredient for success. The study team recognized that consultation with local leaders was key in facilitating discussion and acceptance among people interviewed.

In general, little is known about incontinence within the refugee population, local healthcare workers, and humanitarian practitioners. Approximately half of the people interviewed had some level of knowledge about what incontinence was, however, awareness of its causes, potential health consequences, and management of incontinence remained low. There were clear misunderstandings and stigma, such as incontinence being considered contagious or a punishment from God. These findings are consistent with others which have documented the high stigma and taboo associated with incontinence (Hafskjold et al. 2016; Rosato-Scott & Barrington 2018; Mactaggart et al. 2021; Rosato-Scott et al. 2021).

Lack of access to appropriate hygiene items, lack of clean water, and absence of adapted WASH facilities are the main challenges people with incontinence face in Um Rakuba or Tunaydbah refugee camps. These findings are consistent with other studies that have found distance to latrines and lack of incontinence products to be key challenges facing people with incontinence (Wilbur et al. 2021). Specific measures to ensure meaningful access and participation, and specific consideration about the needs of people who live with incontinence when planning distribution and designing WASH services are lacking or scattered.

Hygiene kits distributed in 2021 and 2022 were designed to meet general personal hygiene needs (some related to COVID-19 and monkeypox) and those of menstruating women and girls. These kits did not meet the needs of people with incontinence and the majority of participants considered that items received were too few, of poor quality, and distributed irregularly. No strong preference between reusable and disposable hygiene products such as pads or diapers was seen in this study.

Overall feedback from study participants was that hygiene and NFI items were not specific to their incontinence, were not sufficient in quantity, and that distributions were not regular. Standing in queues, often for a long time, and carrying heavy or bulky hygiene kits or materials back to their household can be very difficult due both to reduced mobility (related to age, ability, or other medical issues) and due to leaking urine and/or feces that might embarrass them.

The preferred method for receiving hygiene and NFI distributions was in-kind, largely due to the low availability of items in the camp markets. Study participants expressed concerns with in-kind distribution, including whether targeting would be accurate, whether access to the distribution site would be easy, excessive waiting time to get the items, tension among beneficiaries while waiting, and whether they would be treated fairly and with respect. These concerns highlight large gaps in the standard of distributions and it can be inferred that relief distributions in the two camps do not meet Sphere standards related to the inclusion of groups such as elderly, those with disabilities or who are less mobile. Many study participants reported not being consulted during the planning of the distributions or not knowing where or how to provide feedback or make a complaint.

Several limitations were identified. This assessment was conducted in a remote, rural refugee camp setting so findings may not be generalizable to other contexts. The refugee camps' population figures were outdated at the beginning of the study, as many had left to engage in farming activities in nearby villages. Several staff from local organizations were reluctant to participate due to a lack of approval from their managers. In-depth interviews were only collected from adults who live with incontinence.

There were differences between the two refugee camps in some outcomes and reported support received (for example, hygiene times). These differences could be attributed to the higher presence of NGOs in the Tunaydbah camp, varying distances to local markets, and differences in population structure due to where refugees had settled. In 2022, there were also repeated camp committee and government strikes and closure of the camps due to a monkeypox outbreak.

Drawing from our study results and lessons, the implications for WASH and other humanitarian practitioners are closely aligned with other published recommendations for the WASH sector (House & Chatterton 2022; Rosato-Scott et al. 2024).

• Incontinence can be investigated within wider WASH and health assessments, rather than as a standalone study. With the right consultation process and training, effective and fit-for-purpose data on incontinence can be collected from a very diverse group of people as part of a WASH assessment. In this study, ‘Washington Group’ style questions were used to identify people with incontinence at the household level, as well as through referral. In-depth qualitative data was then collected to better understand the needs, challenges, and perceptions of people living with incontinence (especially for those groups usually identified as ‘neglected’). Testing of tools and feedback from people with incontinence on the appropriateness of the language is key to success.

• Raise awareness on incontinence and train all WASH staff and volunteers. Both hygiene promotion and technical or engineering WASH staff need to understand what incontinence is, who can be affected, social and physical needs to manage incontinence, as well as common misconceptions and taboos. Incontinence should be integrated into hygiene promotion and WASH technical curriculums, as has been done for MHM. Further, a focus on disability and age inclusion is required to ensure WASH hardware solutions are adapted to the needs of older people, people with disabilities, and people with incontinence.

• Work with health and PSS actors to establish a referral pathway, including hygiene promoters who are closely linked with communities already, for cases of incontinence (especially those that have severe mental health distress or health problems such as skin sores). This will require a collaborative mapping of all actors that can provide support for the diversified health issues that people suffering from incontinence might have. Train hygiene promoters with basic PSS skills so they are better equipped to work with vulnerable, sometimes neglected groups and make referrals in a way that does not cause further stigma or embarrassment.

• Develop guidance and specifications for incontinence items – however selection of items for each situation must be directly connected to the availability of water, solid waste services, and sanitation facilities. People living with incontinence themselves should always participate in the decision-making about what items they need. The WASH situation and access to water, washing, drying, and disposal facilities will greatly impact the type of items and products selected. Without water, soap, and a private place to wash and dry pads, clothes, soiled bed sheets, etc., reusable products would be extremely difficult to manage. The design of a specific hygiene kit for incontinence is highly recommended and should be done in conjunction with an assessment of the availability of hygiene and incontinence products in local markets. Example kits (such as for menstrual hygiene on the Red Cross Red Crescent's Emergency Relief Item Catalogue) can provide guidance on the key contents and detailed product specifications.

• Consider mixed modalities for support including both ‘in-kind’ distribution and ‘cash or voucher’ assistance. A mixed modality of ‘in-kind’ and ‘cash’ assistance is considered the best option to ensure people with incontinence are supported with appropriate materials and able to access what they need. Small-scale interventions with local traders in the camp markets could be used to improve the availability of more common basic items. Accessibility for people with mobility challenges (such as older people and people with disabilities) is critical to address in the design and planning of any market-based intervention (e.g. inability to stand in long queues, carry heavy kits or bulky items, etc.).

This study found that Tigrayan refugees living with incontinence in Um Rakuba or Tunaydbah camps faced extreme challenges in managing their incontinence. These included no or limited access to hygiene items and products for managing incontinence, a lack of water for personal hygiene and washing, and long distances to communal sanitation facilities where they often needed to queue or lacked privacy. People with incontinence reported feeling isolated and excluded from accessing basic services, personal relations and community participation, as well as an inability to earn an income.

WASH programmes cannot be considered comprehensive or inclusive if incontinence continues to be ignored or largely ‘invisible’, and the basic, practical needs of the most vulnerable continue to be unmet. WASH practitioners need to take responsibility for addressing incontinence as part of humanitarian interventions, collaboratively with health, disability, and protection actors.

Further research to document the experiences of adults and children living with incontinence in other humanitarian contexts and different socio-cultural situations is needed. Further analysis of the benefits and constraints of different distribution modalities for delivering NFI items in a dignified and accessible way can strengthen the quality of support to people living with incontinence.

Data cannot be made publicly available; readers should contact the corresponding author for details.

The authors declare there is no conflict.