Ethics Guidelines in Research with Children: Developing Guidelines Through Critical Collegial Engagement

1. Ethical Principles in Research with Children: Developing Guidelines Through Critical Collegial Engagement Margaret McKenzie-Davidson Dept. of Social Work and Community Development Jude MacArthur Independent Researcher on Disability and Education Children and Young People as Social Actors Research Cluster University of Otago Dunedin New Zealand http://www.otago.ac.nz/humanities/research/clusters/children/

2. University of OtagoDunedin, New Zealand

3. Children and Young People as Social Actors Research Cluster Range of disciplines represented: 24 members - law, education and teacher education, early childhood, social work, disability issues, sociology, geography, physical education, psychology, medicine, ethics, anthropology. Range of experience in research methodology and methods: Qualitative and quantitative Ethnography, case study, observation, interview, participatory action research, children as researchers etc. Shared interest in: • Research that includes children • New sociology of childhood - children as social actors • Children’s rights – UN Convention on the Rights of the Child

4. Children and Young People as Social Actors Research Cluster – examples of research projects Children's perspectives on rights, responsibilities and citizenship Children’s perspectives on physical punishment Children’s participation in family law proceedings Disabled children and young people’s school experiences and identity Young people’s experiences of rural and urban environments Youth researching youth – young people and identity Kapo Maori, the school experiences of blind Maori How children use their environment Health rights in secondary schools

5. The genesis of the Ethics Guidelines project – Cluster Seminars Researching Children’s Experiences: Methodological and Ethical Issues, October 2008 • There is a need for research that is focused on the recognition of children as the basis for improving policy and practice (Frankel, 2007; Graham, 2008) • Ethics committees can regulate and block children’s involvement in research – not always sensitive to children’s participation rights (Graham, 2008; Powell & Smith, 2009) • Assumptions about childhood emphasise children’s vulnerability and competency, rather than their willingness and capacity to be involved in research (McGuire, 2005; Powell & Smith, 2006; 2009). The construction of children’s rights in education - a research synthesis,Anne Quennerstedt, Orebro University, Sweden, April 2009 • Low level of theorising in research on children’s rights in education • Few studies ask children for their views (despite the emphasis on children’s rights and UNCRC) • Uncertainty in the research about the prioritising of children’s and parents’ rights

6. The genesis of the Ethics Guidelines project -Discussion of shared issues and concerns within the cluster • The place of children’s voice and children’s rights in our own research projects • Ongoing ethical issues that have arisen in our own research (ethics as a ‘process’) • Some student research proposals are ethically ‘underworked’ • Ethics committees can impede/restrict research with children because of their concerns in relation to: • researchers having access to children • proposed methods and methodology • preventing harm • Gate-keeping can prevent children’s participation

7. Ethics Guidelines Project – the aim The development of a set of ethics guidelines relating to research which includes children and young people. For use by students, supervisors, researchers and ethics committees.

8. Ethics Guidelines Project – the process • Specific focus for each lunchtime meeting (2 hours) • Collegial discussion – open sharing of experiences and ideas from our own research: • ‘tricky’ issues and possible resolutions • unanticipated issues that arise ‘in the field’ • Ideas from related reading material shared • Discussion is recorded • Minutes circulated to whole cluster for comment • Draft guidelines drawn up and circulated widely for feedback (cluster members and beyond) • Publication and dissemination

9. Ethics Guidelines Project – the content • Children in research – a position statement • Providing information and seeking consent within a supportive relationship • The research context/setting issues • Method and methodological issues • Feedback and dissemination • Bibliographies, websites, resources

10. Position statement on research with children • Why children’s participation is important, and the danger of not including children in research • The unique attributes of research with children • Primary accountability to the child • Respect and consideration for children (e.g Alderson, 1995; 2008) • Children as social actors • willing and able to make decisions about participating in research • participating subjects and ‘knowers’, not objects of the researcher’s gaze (Smith, 2009) • Multiple ways in which children can participate in research • Ethics as a process • Age and competence

11. Position statement on research with children – ethics as a process • Unanticipated ethical issues arise ‘in the field’, therefore ethics is a process, not a ‘one-off’ matter (Alderson, 1995, Powell & Smith, 2009) • Implications for adult reflexivity and for supervision that allows for ongoing discussion and review of: • the ethical issues as they arise • decisions that need to be made • the effectiveness of those decisions • the opportunities for children to opt out “Ethical radar” – particularly with young children, disabled children (Skanvors, 2009)

12. Informed consent – presumption of competence Starting point = presumption of competence to consent: • Age or ‘ability’ are not good indicators of competence – experience is more important • Children and young people need to be seen as having experience, but as being inexperienced in the research context Including ALL children in research means the responsibility is on the researcher to find ways to fully inform children: • Information and consent processes need to be relevant to age, ability and experience of participants • Recognise that children can communicate and participate in a variety of ways

13. Consent – active and genuinely informed over time • It is important that active informed consent is gained from children themselves (Smith, 2009). • Children need to know they are in a research project – understand what is happening and why, and how research can be used to change/improve things for children • We should not assume children ‘assent’ if their parents agree for them to be part of a study. • Informed consent is an active process over time – provide rights to opt out and in again if desired

14. Informed consent- privacy and confidentiality Researcher’s primary responsibility is to the child Question of what to do when a child discloses an issue of concern but will not give permission for that issue to be discussed with adults (e.g. bullying at school)

15. Informed consent – some other issues • Adults consenting on child’s behalf (Don’t worry about asking her, I say it’s fine”). • Verbal vs. body language (Amy is saying “Yes”, but her body language says “No”). Important that researchers are sensitive to the child and to what they are really saying. • Any issue can be ‘sensitive’ for a child at any stage – even when informing children about the research. • Important to be aware of legal issues around consent and context – e.g. in relation to children in care, in hospital. • Potential for data to be used in other ways that are not covered by consent. • Consent as time and context specific – when and where does consent end?

16. Cluster members’ comments on the ethics meetings so far… “I just have to say, I am really enjoying this” “It’s really good hearing about other people’s experiences” “It’s a really great way to pick up on key issues that others have faced”

17. Alderson, P. (1995). Listening to children: Children, ethics and social research. London: Barnardos. Alderson P (2008) 'Ten topics for consideration in carrying out social research with children and young people', Children's Geographies 6, 98-101. Frankel, S. (2007) Researching Children’s Morality: developing research methods that allow children’s involvement in discourses relevant to their everyday lives. Childhoods Today, 1, (1), 1-25. (Online journal) Graham, A. (2008). Presentation to the ‘Children and Young People as Social Actors’ Research Cluster symposium on Researching Children’s Experiences: Methodological and Ethical Issues, University of Otago, 31 October 2008. McGuire, M. (2005). What if you talked to me? I could be interesting! Ethical research considerations in engaging with bilingual/multilingual child participants in human inquiry. Forum: Qualittive social research, 6 (1), Art. 4. http://www.qualitative-research.net/fqs/ Powell, M., & Smith, A. (2006). Ethical guidelines for research with children: a review of current reseaech ethics documentation in New Zealand. Kotuitui: New Zealand Journal of Social Sciences Online, 1, 125-138. Powell, M., & Smith, A. (2009). Children’s participation rights in research, Childhood, 16, 124-142. Skanvors, I. (2009). Ethics in child research: Children’s agency and researchers’ ‘ethical radar’. Childhoods Today, 3, (1), 1-22. (Online journal) Smith, A. (2009). Respecting children’s rights and agency in seeking their perspectives. University of Otago, College of Education. References

18. Examples

19. Interviews - Using cartoons Hi there, Obelix and I would like to ask you some questions about you, your family and your school. You can write what you think in this box. My name is Obelix … What is your name? Luke

20. Really good. I don’t know. I don’t really care as I’m not going there any more. Bad. I don’t have to tell you why. Boring. What do you think about school? I like reading the best. What do you like best? Stars on Stage concert. Art, reading and story writing. I actually make good stories. I do. What do you hate most? When told what to do every minute.Handwriting, spelling and maths. Being bullied.

21. Interviews‘Fill in the gap’

22. Interviews - Drawing pictures