Conducting research with children part 1: honouring a child’s right to be heard

Imagine if you weren’t feeling great and you could really do with a little support to make your days easier. How would you feel if someone visited you at home to ask how you were doing and what could be done to help? Hopeful perhaps, maybe even cheerful? 

Now imagine if someone you lived with answered all of the questions on your behalf, and they didn’t even give the correct responses. How would you feel now? Perhaps frustrated, disappointed, or maybe even sad. 

Unfortunately, this is the reality for many displaced children when researchers prioritise adult perspectives on children’s health-related issues.  Little is known about how displaced children (e.g., those living in refugee camps) understand and experience health, and, without this knowledge, emergency programmes across multiple sectors may not meet the needs of child users. 

But children do have a right to be heard and their thoughts, feelings and opinions considered. This right was the focus during research recently conducted in Adjumani District in Uganda, and Cox’s Bazar refugee camps in Bangladesh. 

Ethically Honouring a Child’s Right to be Heard 

In humanitarian contexts children of any age and ability face a range of heightened risks – particularly if separated from family and/or caregivers – including disease and violence. An awareness of this vulnerability of children inevitably (and rightly) results in those involved in humanitarian response to emphasise the protection of children (a protectionist discourse).  

Yet there has been a push in recent years to consider children as rights-holding individuals as well (a rights-based discourse) and the right of children to be heard and to be taken seriously is one of the four general principles of the United Nations Convention on the Rights of the Child. 

The concept of ‘participation’ has emerged to describe efforts to implement a child’s right to be heard. Participation can be defined as “‘having the opportunity to express a view, influencing decision making and achieving change”. The benefits of participation include “helping children to regain control over their lives … and strengthening a sense of identity”, but “care needs to be taken to protect children from exposure to situations that are likely to be traumatic or harmful” (Paragraph 125).  

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 actually shouldn’t be done by asking themselves these questions:   

1. a) Does the matter being researched concern the child participants directly or indirectly?
2. b) Do the researchers have the capacity to conduct the research and act on the findings?
3. c) How can the research be conducted ethically?

Only if the matter being researched does concern the child participants directly; the researchers have the capacity to conduct the research and act on the findings; and research methods can be adopted for children, should the research be conducted.  

A Case Study: The Humanitarian Innovation Fund’s (HIF) 2019 Innovation Challenge 

In 2019, Elrha’s HIF launched an Innovation Challenge 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”. Incontinence is the involuntary leakage of urine or faeces, whilst awake or asleep.  

 A Research Team 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 was awarded funding to develop a methodology to engage children aged five to 11 in discussions of incontinence, including the experiences of those who wet the bed due to having the medical condition of incontinence, or because they do not want to use, or aren’t able to use, the toilet facilities available. The research aimed to understand the barriers to inclusion and well-being that those living with incontinence, and their caregivers, face in Adjumani District (Uganda) and Cox’s Bazar refugee camps (Bangladesh), and whether there were practical ways in which these could be addressed.  

When planning the research activities to be undertaken, the Research Team considered the three questions above in turn: 

1. The subject matter of the research (that is, the experiences of children living with incontinence) was directly of concern to the proposed child participants, and only they – not an adult proxy – could genuinely voice their experiences; 
2. The proposed data collectors were assessed as having the minimum knowledge, skills and attitudes needed to facilitate and support meaningful participation with children; and Plan International UK, Plan International Uganda, UNICEF Bangladesh and World Vision Bangladesh confirmed that findings could be incorporated into their existing WASH programmes; and 
3. The design of a collaborative ‘Story Book methodology’ ensured that the children could participate ethically in focus group discussions, particularly through the development of imaginary characters that allowed children to communicate potentially difficult emotions through a representative character, rather than directly revealing their personal thoughts. More detail on the development of the ‘Story Book methodology’ can be found here.  

Thoughtfully answering the questions took time and the involvement of multiple specialists (in humanitarian relief, the experiences of incontinence and meaningfully involving children in research) across several teams and countries. But the end result was worth it: the research was completed in early-2022 and data analysis is ongoing to uncover – for the first time – what children in Adjumani District and Cox’s Bazar really think about incontinence and if anything can be done to support those that may experience the condition, as well as their caregivers.