What approach did we take?

Our approach to ethics is underpinned by a Disabled Children’s Childhood Studies approach (DCCS). You can read more about this approach here.

In brief, DCCS sees disability as the starting point, rather than an ‘add on’, for studies of childhood. The voices of disabled children and young people are at the centre of any study which follows a DCCS approach, which means focusing, form the outset, on the concerns of children and young people, their families and allies to shape the research process.

On this page we focus on some key issues for ethical research with children and young people:

  • At what age can a child legally consent to take part in research?
  • Talking about sensitive issues
  • What do I do if a child discloses abuse?
  • Keeping the researcher safe
  • Risk assessment.

What did we do?

Before the project started, we used social media to engage children and young people in the design of the research. As the project progressed, we continued to work alongside young people at every stage of the process. Young people were involved in the design of the research project and questions, they carried out interviews and they were involved in the analysis, dissemination and impact generation from the project. This meaningful involvement was a key part of our ethical approach.

As university researchers, we are bound by our University’s ethical procedures and our research project was reviewed and approved by the University. We are also bound by the wider ethical codes that reflect the disciplinary and professional bodies to which we are allied. For us, this meant paying attention to British Educational Research Association Ethical guidance and to the British Psychological Society’s Code of Ethics.

A key challenge we faced in the ethics process was to design research information sheets and consent forms that are clear and accessible to anyone wanting to participate in the study.

It is important to remember that ethics is a process and not a one off event, and it was important for us to continue to check in with our participants (and their parents and families), even once the consent forms were signed, to make sure consent was ongoing and that people were comfortable within the project.

Key issues:

At what age can a child legally consent to take part in research?

The law says that a child cannot legally give consent themselves to take part in research until they are sixteen and their parent or guardian must be asked for consent. However, this does not mean that the views of children and young people should not be taken into account. Once a parent or guardian has given their permission for a child or young person to participate in a project, researchers must work with a child or young person to see if they also agree. In the past, disabled children and young people have often been excluded from research because they are judged not to have the capacity to give their consent to participate. This has meant that the voices of disabled children and young people have often been missing in studies about their lives. We believe that it is possible for all children to take part in research and that the concept of assent is useful here. To gain a child’s assent to participate means spending time with them so that the researcher can ‘tune in’ to the child’s communication (perhaps with the assistance of someone who knows them well). It is important to pay attention to body language and behaviour as much as speech and language.

Talking about sensitive issues

Our project focused on the contributions, hopes, dreams, aspirations, but also the fears of young people living with LL/LTIs. This inevitably meant that we touched on sensitive issues. In the section on an arts-informed approach, we argue that this way of working allows for new stories to be told, but we also think that this is an ethical approach. Arts-making can be a more comfortable way for children and young people to talk about sensitive issues. We used interviews too but we thought carefully about the questions we asked.

In our budget plan, we made sure we had resources so that participants could access counselling support, should they need it. However, we did not want to impose a negative assumption that disabled children and young people should find talking about their lives upsetting. And, in the end, none of the young people experienced distress in the research process that led to them accessing counselling support.

What do I do if a child discloses abuse?

It is essential that everyone involved in the research is clear about what to do if a child or young person discloses abuse. It is important that children understand that the anonymity and confidentiality (changing their names so they are not recognisable and not telling other people what they said) are not the same as keeping the information secret. Do not promise children to keep what they say secret.

If a child or young person discloses abuse, inform your organisation’s safe guarding lead immediately and, if necessary, contact the local authority safe guarding lead in your local area.

Keeping the researcher safe

Ethics applications are (rightly) most concerned with keeping the participants safe, but it is also important to think about keeping the research team members safe. This means thinking about practical matters such as where the research encounter will take place and making sure that you inform another team member of where you are, ‘checking in’ when you arrive and when you leave. But it is also important to think about the emotional impact on researchers of engaging with sensitive topics. We developed a distress protocol (which you can download below) that sets out what should happen if a member of the team were to become distressed during the research process.

Risk assessments

We routinely undertook risk assessments throughout different stages of the project. These are required as routine by the University, but often we had to provide them for our community partners and collaborator organisations. Doing a risk assessment enabled open discussions about the possible risks to ourselves and other across the project. While often instrumental, it offered a systematic method of looking at project activities, considering what could go wrong, and deciding on suitable “control” measures or actions we would take, both practically and ethically, to keep others safe and reduce or minimize some of the risks of researching with disabled children and young people and their families.