Ethics & Child participation – a personal account, not an academic analysis

I was pretty surprised by the interest generated by a recent tweet: Screen Shot 2020-01-24 at 14.49.03

The response suggests that child participation in research is something of interest to many, so although I am not an expert I thought it might be helpful if I set out my journey with ethics and child participation so far.

Back in 2012 I began my study into children’s rights and maternal sentencing practices. At that time my sense, as someone new to academic research, was that it wasn’t really expected that children should be participants in research. The concern seemed to be that for children to talk about their life experiences, as research subjects, would be too upsetting and would cause them further distress, which they should be saved from. The alternative viewpoint, that having the chance to talk about their life experiences might make them feel heard, empowered, or might even be a wholly uninteresting and neutral experience, was not something that seemed to have much traction.

For that reason I initially thought maybe I shouldn’t design a study which included children as research participants but very quickly I realised that I couldn’t do research using a child rights framework whilst ignoring a child’s right to be heard in all matters concerning them (UNCRC 1989 Article 12). Although I’d been told that it would be a challenge to get ethical approval I was heartened by The General Comment on Article 12 from the UN Committee on the Rights of the Child which provides a list of values which must be incorporated in all processes in which children participate. I have found it to be a useful checklist for direct research with children and it is as follows: the process must be transparent and informative, voluntary, respectful, relevant, child-friendly, inclusive, supported by training, safe and sensitive to risk, and accountable (UNCRC, 2009).

Somehow I missed (poor academic oversight on my part) the work which Professor Laura Lundy at Queen’s University Belfast had undertaken on child participation. The ‘Lundy model’ is now well established, and for anyone working with children I suggest that you do as I say and not as I did, and read all of her work!  fullsizeoutput_df

I spent a significant period of time working on my ethics application for the study on maternal sentencing, and the result was an application running to 90 pages. I designed recruitment materials, research study information sheets, assent forms and debriefing documents, for under 10s, and 11-15 year olds. I piloted all of these on children (my children’s friends and my friends’ children) and after several revamps the application was submitted. There was some correspondence back and forth with the ethics committee who were particularly concerned about issues of consent, but eventually they were persuaded that I had thought of most foreseeable issues, and I had a child centric mindset which would enable me to put children’s needs and safety first if anything unforeseen were to arise. I also completed Child Safeguarding training and attended a two day course on conducting research with children at the University of East Anglia Centre for Research on Children and Families.

Recruiting children for the study was a challenge, due to gate keeping by both organisations and individuals, but ultimately I interviewed 14 children whose mothers were at the time of interview, imprisoned, and another group of children completed questionnaires.

My next project was the development of a film series ‘Safeguarding Children when Sentencing mothers’ for use by criminal justice professionals. Again ethical approval was sought from the University of Oxford, including approval to carry out filmed interviews with children whose mothers had been in prison. I thought very carefully about the ethics of child involvement in the project, and submitted a very full application. Ethics approval was granted. Initially two children were identified by the lead professional in a children of prisoner’s support group, as being children who might want to participate in the films. For various reasons only one of the children ultimately chose to be filmed. The filmed interview with the child is not included in the film for public viewing, available on this website. The child’s interview is only on the films for sentencing professionals in accordance with the ethical approval applied for and granted. In my opinion, the inclusion of a child’s voice and child’s direct experience has increased the relevance and power of those films x100. Children do not usually get to communicate with sentencers, but the film has enabled a child to directly address criminal justice professionals on what it meant for them to experience maternal imprisonment.

When I came to put together the project I’m now working on, with the benefit of the  the previous 6 years’ experience of research with children, I was utterly convinced that Article 12 means that we cannot conduct research with children on any subject, if we have not had input from children on the research design.  For that reason I wanted to set up a Child and Young Persons Advisory Group to work with me in designing the research methodology. Spurred on by a meeting with Laura Lundy when I happened to be in Belfast and she had an hour free, where I heard Laura’s accounts of what happens when children tell you how to conduct research with children, I undertook some research into the setting up of CYPAGs.

CYPAGs are more common in health research and one reason for this may be that very often they are classified as ‘public engagement’ rather than ‘research’ and so they don’t go through any process of ethical approval. I find this really troubling, and a question I posed on twitter a few months ago suggested that other social scientists were equally troubled. I approached the relevant Ethics Committee at the University of Oxford to discuss what level of application I should make for a CYPAG. At Oxford we have a CUREC 1 and a CUREC 2. CUREC 1 is for the most straightforward applications and requires less information. CUREC 2 is always necessary when conducting research with a population perceived as vulnerable. Although a CYPAG is an advisory group, and not a research population, and in my case I will not be asking the children about their own experiences but will be facilitating their input on what questions I should ask of other children, and the best ways to do that, the view of the Ethics committee was that I should fill in a CUREC 2 but follow an approved procedure (AP 25) for conducting research with children in an institutional or approved setting.

One of the big difficulties I think a researcher might find in setting up a CYPAG to advise on research on a topic only experienced by a relatively small number of children and young people, is finding participants .  This isn’t such an issue in health CYPAGs as they are either drawn from hospital patients or the children involved do not need to have experienced the topic under discussion. With this project I want to have the expertise of children who have experienced parental imprisonment so that they can guide me in how to look at the issue of parental release from their very particular viewpoint and perspective. The solution I have found is that I will work with an organisation that support children whose parent is imprisoned, and recruit children to the CYPAG with their help. The CYPAG meetings will be held on their premises with a member of their staff present. I have to fulfil safeguarding requirements such as an enhanced DBS check (organised through the university, paid for from my research expenses fund) and both general and specialist safeguarding training.

I submitted my application for ethics approval and followed the University of Oxford’s Approved procedure 25 and approval has been given for the group to take place. Children need to be engaged with properly both in our research design and implementation, and I am pleased to work at an institution where the Ethics Committee’s response to me was not to try to stop this work, but to instead describe it as ‘an exciting proposal’.

I hope that the first meeting of the CYPAG will take place in February and it is my intention that we will meet on 4 occasions to explore the themes and topics I should research with children who are experiencing parental release from prison, and the ways in which such data should be gathered.  I’m also meeting with two adult advisory/ consultation groups who will represent the other research populations I plan to engage with (parents who have been in prison and caregivers who have looked after a child during a parent’s imprisonment).

If you’ve experience of working with CYPAGs in a social science context I’d love to hear from you so do either add a comment below or contact me via twitter.

 

 

 

 

 

 

he application for ethical approval ran to around 90 pages

 

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