How do you facilitate conversations with children about a personal and potentially sensitive health issue, making sure that all steps are taken to encourage fun and avoid upset?
This was the dilemma recently faced by a team of researchers from University of Leeds, The University of Western Australia, University of York, Plan International Uganda, Plan International UK, Uganda Christian University, UNICEF Bangladesh and World Vision Bangladesh, who had been awarded funding to develop a methodology to engage children aged five to 11 in discussions of incontinence. Incontinence is the involuntary leakage of urine or faeces, whilst awake or asleep.
The Research Team (RT) aimed to build “on existing evidence and insights to further understand the barriers to inclusion that people living with incontinence face, so that more holistic, effective and inclusive WASH programmes can be developed” (Elrha’s 2019 Innovation Challenge). Having first decided that they specifically wanted to conduct research with children – find out why, here – the RT then had to figure out how to conduct effective, ethical and meaningful research in both Adjumani District (Uganda) and Cox’s Bazar refugee camps (Bangladesh).
To the best of the RT’s knowledge, children in humanitarian contexts had rarely been asked about their personal health experiences; and none had ever been spoken to about incontinence, which is a highly sensitive and often stigmatised medical condition. Without this knowledge emergency programmes across multiple sectors may not meet the needs of child users with incontinence, but where to start? Luckily a team of advisors – specialists in humanitarian response, incontinence and conducting research with children – were at hand to provide guidance.
Step 1: Deciding Who to Speak To
The RT wanted to understand more about urinary incontinence experienced by children aged five to 11. Why children aged five to 11? Five is the age at which several organisations, including the World Health Organisation, define urinary incontinence to be clinically significant as it is deemed to be the developmental age when bladder control is ordinarily expected. But some children may wet themselves not because they have the medical condition of incontinence, but because they do not want to use, or aren’t able to use, the toilet facilities available. So the project focused on an upper age limit of 11, being the age at which children are more likely to be able to safely and confidently use adult toilets during both the day and night.
Step 2: Choosing a Research Methodology
The research methodology was developed with the competencies and capacities of the data collectors (World Vision Bangladesh and Plan International Uganda staff) in mind; their day-to-day work includes conducting focus group discussions and interviews with children aged five to 11. The RT wanted to avoid conducting interviews as it was felt that an interview on incontinence could be an intimidating process for a young child, and with little benefit for them. So instead the RT concentrated on focus group discussions (FGDs).
Focus groups have been found to work well with children, and particularly when discussing sensitive topics because, for example, the group context can provide mutual support for shy children. As children usually feel more comfortable in a smaller group, and given the personal and sensitive nature of the issues being discussed, the FGDS were split by gender, and by age (five to seven, and then eight to 11), with a maximum of six participants.
Step 3: Developing Research Activities
The research methods used during FGDs should reflect the capacities of the participants and ideally provide an opportunity for recreation and self-expression. This is especially true in a humanitarian context where such opportunities could be rare. In Cox’s Bazar, members of the Bangladesh RT were already adapting methods used by Clowns Without Borders to educate the children on topics such as hand-washing. These methods included singing songs, playing games, telling stories, and drawing pictures.
The RT therefore designed the ‘Story Book methodology’. Supported by a facilitator, the children would co-create an imaginary ‘hero’, and then explore the hero’s feelings by drawing how they would feel when they wet themselves, for example, at night or at school. The group would then explore how the caregivers, teachers and friends react to the hero self-wetting, again through drawing. The children could also discuss the reasons why the hero is self-wetting, and what could be done to support them.
Key to this approach was that the children would not be asked to share their own personal experiences as this could a) cause them distress and b) put the children at risk of being identified as a child that wets themselves, when the repercussions of doing so could be negative.
Step 4: Deciding a Recruitment Strategy
Inclusion criteria – gender (boys and girls); age (five to 11); living with an adult caregiver – was provided to community leaders to identify potential participants. Participants may or may not have had a disability.
The RT felt that this approach would be sufficient to gain an understanding of the general awareness about incontinence and attitudes towards the condition whilst protecting the participants from undue harm.
So How Successful was the Story Book Methodology?
Facilitators in Cox’s Bazar reported that:
The facilitators also felt that the Story Book methodology helped to create a space to identify the children with incontinence issues and the problems they face, and that the methodology could be used to monitor and evaluate the progress of any intervention targeted for children with incontinence issues.
So the initial feedback was very positive, but there are always opportunities for improvement. Analysis of the data collected in Adjumani District and Cox’s Bazar is ongoing, and the RT will be looking for ways to improve the Story Book methodology to support the development of emergency programmes across multiple sectors that truly meet the needs of child users.
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