How to better understand the experiences of children who wet themselves

Abstract

Sometimes children wet themselves. This can be because they have the medical condition of urinary incontinence; or it can be because they don’t want to use the toilet facilities available or because they can’t use the toilet facilities available. Without adequate support, the physical health of children who wet themselves can suffer; they can miss out on educational and livelihood opportunities; and they have increased protection risks due to the stigma of self-wetting.
Understanding of the experiences of people who wet themselves in emergency settings is still in its early stages. A research partnership between University of Leeds, The University of Western Australia, University of York, Plan International UK, Plan International Uganda, UNICEF Bangladesh and World Vision Bangladesh has been aiming to better understand the barriers to inclusion that children (aged five to 11) living with self-wetting and their caregivers face, so that more holistic, effective and inclusive WASH programmes can be developed.

A story book methodology was developed to engage children based in Cox’s Bazar refugee camp (Bangladesh) and Adjumani District (Uganda) in discussions of self-wetting. The participation of children in research conducted in humanitarian contexts to understand how they experience their own health (rather than asking an adult proxy) is not commonplace. The project team would like to present a) why this is the case; b) how we developed research methods to ensure the ethical participation of children in the research; and c) preliminary lessons learned from the project.

Full text

How to better understand the experiences
of children who wet themselves
Claire Rosato-Scott & Dr Dani Barrington
[World Vision Bangladesh]

The research project
Title: Understanding children and their caregivers’ experiences with
incontinence in humanitarian contexts
Lead
organisations:
Partner
organisations:
Supporters:
Advisory Including humanitarian specialists; incontinence specialists;
Committee: and specialists in conducting research with children

What is incontinence?
“The
involuntary loss
of urine and/or
faeces” or
“leakage of
urine and/or
faeces”
Leakage can
happen
occasionally,
regularly,
constantly;
at any time, day
or night
[Rosato-Scott et al. 2020]

Urinary incontinence in children aged five to 11
-Prevalence of urinary incontinence in 7-year-olds
Daytime urinary incontinence: 3.2% to 9.0%
Nighttime urinary incontinence: 6.8% to 16.4%
(also know as bedwetting, or enuresis)
-In 2020, there were 194,000 children aged five to 11 from Myanmar living
in Bangladesh. If 5% of these children were self-wetting, that’s almost
10,000 children
[Rosato-Scott et al. 2020 / https://www.unhcr.org/refugee-statistics/download/?url=wg7S7H]

The consequences of self-wetting
Physical health can suffer
Missed educational / social
opportunities
Increased protection risks
Emotional impact
Child Caregiver
Physical / financial costs
Missed livelihood / social
opportunities
Violence to deter / punish
Emotional impact

Conducting research with children in humanitarian settings
Protectionist
discourse
Rights-based
discourse
Participation
1. Transparent and informative
2. Voluntary
3. Respectful
4. Relevant
5. Child-friendly
6. Inclusive
7. Supported by training
8. Safe and sensitive to risk
9. Accountable
[United Nations Committee on the Rights of the Child 2009 Paragraph 134]

The key question
From an initial stance of ‘involving children in research is the right thing to
do’,researchers must therefore decide if –for their particular project –it
shouldn’t be done because:
a) the matter being researched doesn’t concern the child participants
directly or indirectly;
b) the researchers lack the capacity to either conduct the research or
act on the findings; and/or
c) the research could not be conducted ethically.

The key question
From an initial stance of ‘involving children in research is the right thing to
do’,researchers must therefore decide if –for their particular project –it
shouldn’t be done because:
a) the matter being researched doesn’t concern the child participants
directly or indirectly;
b) the researchers lack the capacity to either conduct the research or
act on the findings; and/or
c) the research could not be conducted ethically.
✓

The key question
From an initial stance of ‘involving children in research is the right thing to
do’,researchers must therefore decide if –for their particular project –it
shouldn’t be done because:
a) the matter being researched doesn’t concern the child participants
directly or indirectly;
b) the researchers lack the capacity to either conduct the research or
act on the findings; and/or
c) the research could not be conducted ethically.
✓
✓

The key question
From an initial stance of ‘involving children in research is the right thing to
do’,researchers must therefore decide if –for their particular project –it
shouldn’t be done because:
a) the matter being researched doesn’t concern the child participants
directly or indirectly;
b) the researchers lack the capacity to either conduct the research or
act on the findings; and/or
c) the research could not be conducted ethically.
✓
✓
✓

The Storybook methodology: Focus group discussions
[World Vision Bangladesh]

The Storybook methodology: Drawing
[World Vision Bangladesh]

The Storybook methodology: Selection criteria
Purposive selection criteria not used
Inclusion criteria used instead:
-Gender (boys and girls);
-Age (five to 11); and
-Living with an adult caregiver

Research conducted in Cox’s Bazar, October 2021
Locations: Camps 7 and 8E in Cox’s Bazar, Bangladesh
Methods: 8 Focus Group Discussions
24 Caregiver Interviews
18 Key Informant Interviews
Child protection officers; community health workers;
community leaders (majhis); religious leaders;
teachers; traditional healers; WASH specialists

Preliminary findings: FGDs

Preliminary findings: Facilitator feedback
-Children felt free to discuss incontinence through the use of a ‘hero’
and could express their feelings and experiences
-It provided an overall picture of children who face incontinence in their
daily lives which will help when planning interventions
-The methodology creates a space to identify children with incontinence
issues and the problems they are facing for targeted support
-The methodology could be used to monitor and evaluate the progress
of interventions

Recommendations
Methodology
-Fewer scenarios
-Use of smiley face scales especially for younger children
-Fe-wer
Practical recommendations
-Child-friendly toilets closer to homes
-Products to facilitate access to toilets e.g. lights
-Products to facilitate urination in homes e.g. bedpans
-Products to facilitate cleaning clothes and bed mats

The key question
From an initial stance of ‘involving children in research is the right thing to
do’,researchers must therefore decide if –for their particular project –it
shouldn’t be done because:
a) the matter being researched doesn’t concern the child participants
directly or indirectly;
b) the researchers lack the capacity to either conduct the research or
act on the findings; and/or
c) the research could not be conducted ethically.

Thank you
cncr@leeds.ac.uk
[World Vision Bangladesh]