Addressing ethical issues with children: A children’s rights-based approach
Laura Lundy, Michelle Templeton, Katrina Lloyd
The Convention on the Rights of the Child (CRC or Convention) does not mention research directly, although its successful implementation depends up on it (Lundy and McEvoy, 2012). However, that does not mean that the Convention has nothing to offer researchers and nor does it mean that its provisions do not apply to them. While the primary duties in the CRC are on governments, they are required to take steps to ensure that children’s rights are respected, protected and fulfilled, including through the actions of others, and that obligation extends to the research community.
The Centre for Children’s Rights at Queen’s coined the concept of a Child-Rights Based Approach (CRBA) to research over 15 years ago, after something of an epiphany in our own work. In 2005, Laura Lundy proposed a conceptualisation of children’s right to be heard in article 12 of the UNCRC (now referred to widely as the Lundy model) (Lundy, 2007). It did not take long for the irony to dawn on us- children had not been offered space, voice, audience or influence in our own research studies. We flipped the Lundy mirror and asked this question – what would research look like if it was fully child-rights respecting?
Drawing on the UN Statement of Common Understanding on Human Rights-Based Approaches to programming we proposed a CRBA to research which is as follows:
- Goal: the realisation of children’s human rights
- Process: compliance with children’s human rights, including, for example, rights to participation, safety and non-discrimination
- Outcome: building the capacity of children to claim their rights and adults to fulfil their obligations (Lundy and McEvoy, 2012).
The Centre’s projects always focus explicitly on children’s human rights but we began to scan them for key decision-making moments, resolving to involve children in those wherever possible. The result was the invention of what are now widely referred to as Children’s Research Advisory Groups (CPAGs) and Young People’s Advisory Groups (YPAGs). While Participatory Action Research was well established and peer research was on the rise at that time (circa 2006), we were looking for an approach that recognised the reality that much academic research is pre-determined and led by professional researchers. What we came up with enabled us to act in ways that were human rights-compliant, combining the expertise of trained researchers with the distinct expertise of children and young people in children’s lived experiences.
The Committee on the Rights of the Child has said that we should involve children anywhere that their contribution might enhance the quality of the solutions (UN, 2009). And working with CPAGs and YPAGs has certainly provided its worth time and time again with the ethical aspects of our projects. At the simplest level, they have an input into the drafting of information leaflets, helping us ensure that consent is, indeed, more likely to be informed. On other occasions, children aged 4 and 5 helped us to work out a non-stigmatising way of enabling their peers to take part in a photovoice study without using the data of these whose parents had not consented (with the sensible solution that evaded the adult researchers that we could simply change the front design on a KidiZoom camera) (Lundy, McEvoy, Byrne, 2011). They have also enabled us to question decisions of ethics committees by providing suggestions as to how to ensure voluntary consent in a study on a ‘sensitive’ topic (young people’s sexual competence) (Templeton et al, 2020). In fact, from our perspective, it is hard to imagine how research can be informed, voluntary and safe if we do not ask children what that means from their perspective and how to put it into practice.
A recent application of the CRBA was in the Covidunder19 study, which created an online survey for children aged 8-17 years on their experiences of their rights in the early stages of the Covid pandemic (Lundy et al, 2021). The survey was made available in 28 language versions (including an easy read) in both on and offline formats. Working with a coalition of international partners, led by Terres des Hommes, we developed a survey with input from child advisors from across the world. An international YRPAG composed of 18 children (aged 8-18yrs) contributed to the design of the survey, including advising on key ethical issues.
Some of the ethical issues that we had to address are common to all online surveys, including, for example, obtaining informed consent. We opted to include consent information on the front page of the survey. A hyperlink was included to a downloadable version of the approved information sheet which provided more information about the survey and what would happen to respondents’ data. The front page contained the following. Taking part in this survey is completely voluntary. If you decide to take part, please click ‘YES’ and then ‘NEXT’ below and that will take you to the survey questions. If the YES box was not checked the participant could not move the survey on. They were also given instruction on how to leave the survey ‘If you do not want to take part, you can just leave the survey by clicking the X at the top of the screen.’ If you agree and then change your mind you can stop taking part by clicking out of the survey. You can skip any question you do not want to answer by clicking the NEXT button. These were all drafted by adult researchers then checked and approved by the child advisors to be sure that it would be understood by children.
Other ethical issues that arose are more specific to children. For example, a key issue was whether and how to ask questions about children’s safety and protection from harm when we were aware that many children might be completing the survey at home and in some instances where they might not themselves feel safe. Some potentially sensitive questions on abuse, suggested by one of our partner organisations, led to a debate about their suitability for an online survey. A decision was made with the child advisors that this was a key issue for some children and that we should ask about it. However, they advised that we should not ask the children if they had experienced ‘violence’ but should ask them whether they felt ‘safe’ (more, less or the same as before Coronavirus). There was an open-ended question where they could tell us more and many chose to do that. We were also aware that some children might be upset by issues raised in the survey and would want support. Some partner countries provided their national child helpline contact details which were included on specific national versions of the survey. For others we added a hyperlink to Childline International’s website so that children could access the helpline number for their country.
The Centre for Children’s Rights has been undertaking global online consultations with children, supported by a range of international partners since 2014. We have learnt a lot in this time – and much of that learning has come from our child advisors. The scale of the Covidunder19 study – and the context in which it was conducted – focused our attention squarely on the ongoing ethical dilemmas of this type of approach. While adults were rightly concerned that participants would not experience harm, the child advisors were equally clear that they should be asked about all aspects of their lives and worked with us to find solutions that would enable that. From a children’s rights perspective, an imperative is to ensure that children are able to express their views freely on ‘all matters affecting them’. In a CRBA, it is not acceptable to deny children the right to be heard solely on the basis that they may experience harm. Rather there is an immediate obligation to do all that is possible to ensure that they are safe and to only restrict the right if it is necessary and in ways that are proportionate. Taking advice from children themselves, as we did in Covidunder19, is not only an obvious, but also a rights-compliant, way to achieve that.
Laura Lundy is co-Director of the Centre for Children’s Rights, Professor of Children’s Rights in the School of Social Sciences, Education and Social Work at Queen’s University, Belfast and Professor of Law in the School of Law, University College Cork. She is joint Editor in Chief of the International Journal of Children’s Rights. Her expertise is in law and human rights with a particular focus on children’s right to participate in decision-making, education rights and the implementation of the UNCRC in law and policy.
Michelle is Research Project Coordinator at The Centre for Children’s Rights at Queen’s University Belfast. She has extensive experience applying the centre’s methodology for conducting rights-based participatory research with children and young people – The Lundy Model. Her work on children’s rights and participation spans diverse social and geographical contexts, and she has a particular interest in facilitating the co-design of research material and health and education interventions, with children and young people, for children and young people. A further practical application of this methodology is the co-production of many child/youth-friendly versions of legal texts, research documents, reports etc., to make rights information accessible to children and young people.
Katrina Lloyd is a lecturer in the School of Social Sciences, Education and Social Work and a member of the Centre for Children’s Rights (CCR) at Queen’s University Belfast. She is Director of the Kids’ Life and Times, an annual online survey of 10/11 years olds in Northern Ireland. She has extensive experience running surveys and analysing quantitative data. In recent years she has worked in conjunction with staff in the CCR to involve children and young people in the development of questionnaires.
Lundy, L. (2007). ‘Voice’is not enough: conceptualising Article 12 of the United Nations Convention on the Rights of the Child. British educational research journal, 33(6), 927-942.
Lundy, L., McEvoy, L., & Byrne, B. (2011). Working with young children as co-researchers: An approach informed by the United Nations Convention on the Rights of the Child. Early education & development, 22(5), 714-736.
Lundy, L., & McEvoy, L. (2012). What Constitutes a ‘Rights-Based’Approach?. Law and childhood studies: current legal issues, 14, 75. (Oxford: Oxford University Press)
Lundy, L et al . (2021). Life Under Coronavirus: Children’s Views on their Experiences of their Human Rights. The International Journal of Children’s Rights, 29(2), 261-285.
Templeton, M., Lohan, M., Lundy, L., & Kelly, C. (2020). Young people’s sexual readiness: insights gained from comparing a researchers’ and youth advisory group’s interpretation. Culture, health & sexuality, 22(9), 987-1000.
UN Committee on the Rights of the Child (2009). General Comment No. 12 on the Child’s Right to be Heard (UN: Geneva).