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15 - Methodological and ethical issues arising in carrying out research with children and young people

Published online by Cambridge University Press:  05 September 2014

Sinéad Hanafin
Affiliation:
Trinity College Dublin
Anne Marie Brooks
Affiliation:
Department of Children and Youth Affairs, Republic of Ireland
Gillian Roche
Affiliation:
Central Statistics Office, Republic of Ireland
Bairbre Meaney
Affiliation:
Department of Children and Youth Affairs, Republic of Ireland
Roger Tourangeau
Affiliation:
Westat Research Organisation, Maryland
Brad Edwards
Affiliation:
Westat Research Organisation, Maryland
Timothy P. Johnson
Affiliation:
University of Illinois, Chicago
Kirk M. Wolter
Affiliation:
University of Chicago
Nancy Bates
Affiliation:
US Census Bureau
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Summary

Introduction and background

This chapter draws on key issues emerging from a National Children’s Research Programme (NCRP) to identify methodological, practical, and ethical challenges when designing and implementing research studies with, and about, children and young people. The chapter commences with a brief overview of the NCRP with a summary of the key studies referred to in this chapter presented in the Appendix. More than sixty studies were carried out under the NCRP across areas of children’s lives as diverse as their outcomes (including, for example, health, education, and safety), their relationships (for example, with their peers, families, and others), and services (for example, universal, targeted, and more intensive supports). Consequently, it is possible to draw out learning across multiple methodologies, methods, and analyses, and highlight challenges arising across several aspects of study design and implementation. The chapter is illustrative rather than comprehensive and focuses on those studies that best exemplify issues arising.

The overview is followed by issues in study design, including challenges in ensuring meaningful participation by children and young people, tensions arising between protection of children and their participation, issues arising in consent, assent and re-consent, and a consideration of confidentiality, anonymity, and privacy in the context of children’s research. Challenges in study implementation are focused around areas such as sampling and recruitment, data collection, data analysis, and dissemination. The chapter concludes that while research with, and about, children raises challenges over and above that with adults, these can be overcome with appropriate consideration. The examples presented in this chapter can provide practical guidance in these areas.

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Publisher: Cambridge University Press
Print publication year: 2014

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References

Balen, R., Blyth, E., Calabretto, H., Fraser, C., Horrocks, C., & Manby, M. (2006). Involving children in health and social research: “human becomings” or “active beings.”Childhood, 13(1), 29–48.CrossRefGoogle Scholar
Borgers, N., Sikkel, D., & Hox, J. (2004). Response effects in surveys on children and adolescents: the effect of number of response options, negative wording and neutral mid-point. Quality and Quantity, 38(1), 17–33.CrossRefGoogle Scholar
Bourgeois, F. T., Murthy, S., Ioannidis, J. P. A., & Mandl, K. D. (2012). Clinical Drug Trials: A Paucity of Pediatric Representation Mismatched to Global Disease Burden, Pediatric Academic Societies 2012, Annual Meeting.
Buckley, H., Whelan, S., Carr, N., & Murphy, C. (2006). Service Users’ Perceptions of the Child Protection System. Office of the Minister for Children and Youth Affairs. Dublin: Government Publications.Google Scholar
Burton, D. (2000). Research Training for Social Scientists: A Handbook for Postgraduate research. London: Sage.CrossRefGoogle Scholar
Carey, M. A. (1994). The group effect in focus groups: planning, implementing and interpreting focus group research. In Morse, J. M. (ed.), Critical Issues in Qualitative Research Methods. Thousand Oaks, CA: Sage Publications.Google Scholar
Christensen, P., & James, A. (2000). Childhood diversity and commonality: some methodological insight. In Christensen, P. and James, A. (eds.), Research with Children: Perspectives and Practices ( pp. 160–78). London: Falmer Press.Google Scholar
Christensen, P., & Prout, A. (2002). Working with ethical symmetry in social research with children. Childhood, 9(4), 477–97.CrossRefGoogle Scholar
Cocks, A. (2006). The ethical maze: finding an inclusive path towards gaining children’s agreement to research participation. Childhood, 13(2), 247–66.CrossRefGoogle Scholar
Coyne, I., Hayes, E., Gallagher, P., & Regan, G. (2006). Giving Children a Voice: Investigation of children’s experiences of participation in consultation and decision-making in Irish hospitals. Office of the Minister for Children. Dublin: Government Publications.Google Scholar
Daly, F., & Gilligan, R. (2005). Lives in Foster Care: The Educational and Social Support Experiences of Young People Aged 13 to 14 Years in Long-Term Foster Care. Dublin: Children‘s Research Centre, Trinity College, Dublin.Google Scholar
DCYA. (2011a). Children First: National Guidance for the Protection and Welfare of Children. Department of Children and Youth Affairs. Dublin: Government Publications.Google Scholar
DCYA(2011b). National Strategy for Research and Data on Children’s Lives 2011–2016. Department of Children and Youth Affairs. Dublin: Government Publications.Google Scholar
DCYA(2012). Guidance for Developing Ethical Research Projects involving Children. Department of Children and Youth Affairs. Dublin: Government Publications.Google Scholar
De Róiste, A., & Dinneen, J. (2005). Young People’s Views about Opportunities, Barriers and Supports to Recreation and Leisure. National Children’s Office. Dublin: Government Publications.Google Scholar
Department of Health and Children. (2000). The National Children’s Strategy: Our Children – Their Lives. Dublin: Government Publications.Google Scholar
Devers, R., & Frankel, R. (2000). Study design in qualitative research. 2: Sampling and data collection strategies. Education for Health, 13(2), 264.Google ScholarPubMed
Diekema, D. S. (2006). Conducting ethical research in pediatrics: a brief historical overview and review of pediatric regulations. Journal of Pediatrics, 149(1), S3–S11.CrossRefGoogle ScholarPubMed
Downey, S., Hayes, N., & O’Neill, B. (2007). Play and Technology for Children Aged 4–12. Office of the Minister for Children. Dublin: Government Publications.Google Scholar
Edwards, P., & Alldred, P. (1999). Children and young people’s views of social research: the case of research on home-school relations. Childhood, 6(2), 261–81.CrossRefGoogle Scholar
Edwards, S. J. L. (2006). Restricted treatments, inducement and research participation. Bioethics, 20(2), 77–91.CrossRefGoogle ScholarPubMed
Felzmann, H., Sixsmith, J., O’Higgins, S., Ni Chonnachtaigh, S., & Nic Gabhainn, S. (2010). Ethical Review and Children’s Research in Ireland. Office of the Minister for Children and Youth Affairs. Dublin: Government Publications.CrossRefGoogle Scholar
Fives, A., Kennan, D., Canavan, J., Brady, B., & Cairns, D. (2010). Study of Young Careers in the Irish Population. Office of the Minister for Children and Youth Affairs. Dublin: Government Publications.Google Scholar
Glasby, J., & Beresford, P. (2007). In whose interests? local research ethics committees and service user research. Ethics and Social Welfare, 1(3), 282–92.CrossRefGoogle Scholar
Goldenberg, A. J., Hull, S. C., Botkin, J. R., & Wilfond, B. S. (2009). Pediatric biobanks: approaching informed consent for continuing research after children grow up. Journal of Pediatrics, 155(4), 578–83.CrossRefGoogle ScholarPubMed
Greene, S., & Harris, E. (2011). Qualitative Research Methodology: A Review of the Current Literature and its Application to the Qualitative Component of Growing up in Ireland. Department of Children and Youth Affairs. Dublin: Government Publications.Google Scholar
Greene, S., & Hogan, D. (2005). Researching Children’s Experience: Approaches and Methods. London: Sage.CrossRefGoogle Scholar
Grover, S. (2004). Why won’t they listen to us? On giving power and voice to children participating in social research, Childhood, 11(1), 81–94.CrossRefGoogle Scholar
Hammersley, M., & Atkinson, P. (1983). Ethnography: Principles in Practice. London: Tavistock.Google Scholar
Hanafin, S., Brooks, A. M., Carroll, E., Fitzgerald, E., Nic Gabhainn, S., & Sixsmith, J. (2007). Achieving consensus in developing a national set of child well-being indicators. Social Indicators Research, 80(1), 79–104.CrossRefGoogle Scholar
Hanafin, S., Brooks, A. M., Roche, G., & Meaney, B. (2012). Advancing understandings of child well-being through the strategic development of a National Children’s Research Programme. Child Indicators Research, published online (pp. 1–20). .Google Scholar
Harris, E., Doyle, E., & Greene, S. (2011). Growing up in Ireland: The Findings of the Qualitative Study with the 9-Year-Olds and their Parents. Department of Children and Youth Affairs. Dublin: Government Publications.Google Scholar
Hill, M. (2006). Children’s voices on ways of having a voice: children’s and young people’s perspectives on methods used in research and consultation. Childhood, 13(1), 69–89.CrossRefGoogle Scholar
Hogan, F., & O’Reilly, M. (2007). Listening to Children: Children’s Stories of Domestic Violence. Office of the Minister for Children. Dublin: Government Publications.Google Scholar
Hunfeld, J. A., & Passchier, J. (2012). Participation in medical research: a systematic review of the understanding and experience of children and adolescents. Patient Education and Counselling, 87(3), 268–76.CrossRefGoogle ScholarPubMed
Irish Council for Bioethics. (2004). Operational Procedures for Research Ethics Committees. Dublin: Irish Council for Bioethics.Google Scholar
Kehoe, A., & Whyte, J. (2005). Second-Level Student Councils in Ireland: A Study of Enablers, Barriers and Supports. National Children’s Office. Dublin: Government Publications.Google Scholar
Kellett, M., Forrest, R., Dent, N., & Ward, S. (2004). Just teach us the skills please, we’ll do the rest: empowering ten-year-olds as active researchers. Children and Society, 18(5), 329–43.CrossRefGoogle Scholar
Kelly, C., Molcho, M., & Nic Gabhainn, S. (2009). Health Behaviour in School-Aged Children HBSC Ireland 2006. Middle Childhood Study: Socio-Demographic Patterns in the Health behaviours, Risk Behaviours, Health Outcomes and Social Contexts of Young People’s Health. Office of the Minister for Children and Youth Affairs. Dublin: Government Publications.Google Scholar
Kilkelly, U., & Donnelly, M. (2006). The Child’s Right to be Heard in the Healthcare Setting: Perspectives of Children, Parents and Health Professionals. Office of the Minister for Children. Dublin: Government Publications.Google Scholar
Layte, R., & McCrory, C. (2011). Growing up in Ireland: Overweight and Obesity among 9-Year-Olds. Department of Children and Youth Affairs. Dublin: Government Publications.Google Scholar
Mason, J., & Hood, S. (2011). Exploring issues of children as actors in social research. Children and Youth Services Review, 33(4), 490–95.CrossRefGoogle Scholar
McCoy, S., Quail, A., & Smyth, E. (2012). Influences on 9-Year-Olds’ Learning: Home, School and Community. Growing up in Ireland: National Longitudinal Study of Children in Ireland: Child Cohort. Department of Children and Youth Affairs. Dublin: Government Publications.Google Scholar
McEvoy, O., & Smith, M. (2011). Listen to our Voices! Hearing Children and Young People Living in the Care of the State – Report of a Consultation Process. Department of Children and Youth Affairs. Dublin: Government Publications.Google Scholar
McGrath, B., Rogers, M., & Gilligan, R. (2010). Young People and Public Libraries in Ireland: Issues and Opportunities. Office of the Minister for Children and Youth Affairs. Dublin: Government Publications.Google Scholar
Mayock, P., & Vekić, K. (2006). Understanding Youth Homelessness in Dublin City: Key Findings from the First Phase of a Longitudinal Cohort Study. Office of the Minister for Children. Dublin: Government Publications.Google Scholar
Murray, A., McCrory, C., Thornton, M., Williams, J., & Quail, A. (2011). Growing up in Ireland: Design, Instrumentation and Procedures for the Child Cohort. Department of Children and Youth Affairs. Dublin: Government Publications.Google Scholar
Murray, C. (2006). Peer-led focus groups and young people. Children and Society, 20(4), 272–86.Google Scholar
Nic Gabhainn, S., & Sixsmith, J. (2005). Children’s Understandings of Well-Being. Office of the Minister for Children. Dublin: Government Publications.CrossRefGoogle Scholar
Nixon, E., & Halpenny, A. M. (2010). Children’s Perspectives on Parenting Styles and Discipline: a Developmental Approach. Office of the Minister for Children and Youth Affairs. Dublin: Government Publications.Google Scholar
OMCYA. (2009). Report of the Commission to Inquire into Child Abuse, 2009: Implementation Plan. Office of the Minister for Children and Youth Affairs. Dublin: Government Publications.
Punch, S. (2002). Research with children: the same or different from research with adults. Childhood, 9(3), 321–41.Google Scholar
Quail, A., Williams, J., McCrory, C., Murray, A., & Thornton, M. (2011). Sample Design and Response in Wave 1 of the Infant Cohort (at 9 Months) of Growing up in Ireland. Department of Children and Youth Affairs. Dublin: Government Publications. Available at: (accessed November 2012).Google Scholar
Ries, N. M., LeGrandeur, J., & Caulfield, T. (2010). Handling ethical, legal and social issues in birth cohort studies involving genetic research: responses from studies in six countries. BMC Medical Ethics, 11(4). .CrossRefGoogle ScholarPubMed
Roberts, C., Francois, Y., Batista-Foguet, J., & King, A. (2000). Methods. In Currie, C., Hurrelman, K., Settertobulte, W., Smith, B., & Todd, J. (eds.), Health and Health Behaviour among Adolescents. WHO Health Policy for Children and Adolescents Series. Copenhagen: WHO Regional Office for Europe.Google Scholar
Roberts, C., Tynjala, J., Curie, D., & King, M. (2004). Methods. In Currie, C. et al. (eds.), Young People’s Health in Context: International Report from the HBSC 2001/2002 Survey. WHO Health Policy for Children and Adolescents Series, Issue 4. Copenhagen: WHO Regional Office for Europe.Google Scholar
Roche, G., Hanafin, S., & Sharek, D. (2011). Report on Public Consultation Processes for National Strategy for Research and Data on Children’s Lives 2011–2016. Dublin: Department of Children and Youth Affairs. Available at: .Google Scholar
Scott, J. (1997). Children as respondents: methods for improving data quality. In Lyberg, L. E., Biemer, P., Collins, M., de Leeuw, E. D., Dippo, C., Schwarz, N., & Trewin, D. (eds.), Survey Measurement and Process Quality (pp. 331–50). New York: John Wiley & Sons.Google Scholar
Seymour, M., & Butler, M. (2008). Young People on Remand. Office of the Minister for Children. Dublin: Government Publications.Google Scholar
Shannon, G., & Gibbons, N. (2012). Report of the Independent Child Death Review. Department of Children and Youth Affairs. Dublin: Government Publications.Google Scholar
Thomas, N., & O’Kane, C. (1998). The ethics of participatory research with children. Children and Society, 12(5), 336–48.CrossRefGoogle Scholar
Thornton, M., Williams, J., McCrory, C., Murray, A., & Quail, A. (2011). Sample Design and Response in Wave 1 of the Nine-Year Cohort of Growing up in Ireland. Department of Children and Youth Affairs. Dublin: Government Publications. Available at: (accessed November 2012).Google Scholar
UN. (1989). Convention on the Rights of the Child. Geneva: United Nations. Available at: .Google Scholar
US Department of Health and Human Services. (2009). HHS Regulatory Requirements for Research involving Children (Federal Regulations on Protection on Human Subjects). Available at: (accessed November 2012).
Williams, J., & McCrory, C. (2011). Report on Pre-Piloting, Piloting and Dress Rehearsal Phases of the Child Cohort of Growing up in Ireland, Technical Series No. 2. Department of Children and Youth Affairs. Dublin: Government Publications. Available at: (accessed November 2012).Google Scholar
Woodhead, M., & Faulkner, D. (2000). Subjects, objects or participants? Dilemmas of psychological research with children. In Christensen, P. & James, A. (eds.), Research with Children: Perspectives and Practices (pp. 9–35). London: Falmer Press.Google Scholar
Young, L., & Barrett, H. (2001). Issues of Access and identity: Adapting Research Methods with Kampala Street children. Childhood, 8(3), 383–95.CrossRefGoogle Scholar

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