Skip to main content

Anonymity, Confidentiality and Informed Consent: Exploring Ethical Quandaries and Dilemmas in Research with and About Disabled Children’s Childhoods

  • Chapter
  • First Online:

This is a preview of subscription content, log in via an institution.

Buying options

Chapter
USD   29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD   219.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD   279.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Learn about institutional subscriptions

References

  • Alderson, P. (2014). Ethics. In A. Clark, R. Flewitt, M. Hammersley, & M. Robb (Eds.), Understanding Research with Children and Young People. London: Sage.

    Google Scholar 

  • BERA. (2011). Ethical Guidelines for Educational Research. London: British Educational Research Association.

    Google Scholar 

  • Cocks, A. J. (2006). The Ethical Maze: Finding an Inclusive Path Towards Gaining Children’s Agreement to Research Participation. Childhood, 13(2), 247–266.

    Article  Google Scholar 

  • Connors, C., & Stalker, K. (2007). Children’s Experiences of Disability: Pointers to a Social Model of Childhood Disability. Disability & Society, 22(1), 19–33.

    Article  Google Scholar 

  • Curran, T., & Runswick-Cole, K. (2014). Disabled Children’s Childhood Studies: A Distinct Approach? Disability & Society, 29(10), 1617–1630.

    Article  Google Scholar 

  • Ellis, C. (2007). Telling Secrets, Revealing Lives: Relational Ethics in Research with Intimate Others. Qualitative Inquiry, 13(1), 3–29.

    Article  Google Scholar 

  • Ellis, C., & Bochner, A. P. (2000). Autoethnography, Personal Narrative, Reflexivity: Researcher as Subject. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of Qualitative Research (2nd ed., pp. 733–768). Thousand Oaks: Sage.

    Google Scholar 

  • Gabb, J. (2009). Researching Family Relationships: A Qualitative Mixed Methods Approach. Methodological Innovations Online, 4(2), 37–52.

    Article  Google Scholar 

  • Gabb, J. (2010). Home Truths: Ethical Issues in Family Research. Qualitative Research, 10(4), 461–478.

    Article  Google Scholar 

  • Hollway, W. (2009). Applying the ‘Experience-near’ Principle to Research: Psychoanalytically Informed Methods. Journal of Social Work Practice, 23(4), 461–474.

    Article  Google Scholar 

  • Hollway, W., & Jefferson, T. (2000). Biography, Anxiety and the Experience of Locality. In P. Chamberlayne, J. Bornat, & T. Wengraf (Eds.), The Turn to Biographical Methods in Social Science (pp. 167–180). London: Routledge.

    Google Scholar 

  • Hollway, W., & Jefferson, T. (2013). Doing Qualitative Research Differently: A Psychosocial Approach (2nd ed.). London: Sage.

    Book  Google Scholar 

  • Lauwers, H., & Van Hove, G. (2010). Supporting the Participation Rights of Children in a Sensitive Research Project: The Case of Young Road Traffic Victims. The International Journal of Children’s Rights, 18(3), 335–354.

    Article  Google Scholar 

  • 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 and Development, 22(5), 714–736.

    Article  Google Scholar 

  • McNeilly, P., Macdonald, G., & Kelly, B. (2015). The Participation of Disabled Children and Young People: A Social Justice Perspective. Child Care in Practice, 21(3), 266–286.

    Article  Google Scholar 

  • Meerwald, A. M. L. (2013). Researcher | Researched: Repositioning Research Paradigms. Higher Education Research and Development, 32(1), 43–55.

    Article  Google Scholar 

  • Merrill, B., & West, L. (2009). Using Biographical Methods in Social Research. London: Sage.

    Book  Google Scholar 

  • Murray, B. L. (2010). Secrets of Mothering. PhD unpublished, University of Saskatchewan, Saskatoon.

    Google Scholar 

  • Murray, L., Pushor, D., & Renihan, P. (2011). Reflections on the Ethics-Approval Process. Qualitative Inquiry, 18(1), 43–54.

    Article  Google Scholar 

  • Nuremberg Code. (1947). Directives for Human Experimentation. http://ori.hhs.gov/ori-introduction-responsible-conduct-research. Accessed 31 Aug 2015.

  • Page, J. M. (2013). Childcare Choices and Voices: Using Interpreted Narratives and Thematic Meaning-Making to Analyse Mothers’ Life Histories. International Journal of Qualitative Studies in Education, 27(7), 850–876.

    Article  Google Scholar 

  • Pahl, K., & Pool, S. (2011). Living Your Life Because it’s the Only Life You’ve Got. Qualitative Research Journal, 11(2), 17–37.

    Article  Google Scholar 

  • Riessman, C. K. (2008). Narrative Methods for the Human Sciences. London: Sage.

    Google Scholar 

  • Rogers, C. (2003). The Mother/Researcher in Blurred Boundaries of a Reflexive Research Process. Auto/Biography, 11(1&2), 47–54.

    Google Scholar 

  • Rogers, C. (2007). Experiencing an “Inclusive” Education: Parents and Their Children with “Special Educational Needs”. British Journal of Sociology of Education, 28(1), 55–68.

    Article  Google Scholar 

  • Saunders, B., Kitzinger, J., & Kitzinger, C. (2015). Anonymising Interview Data: Challenges and Compromise in Practice. Qualitative Research, 15(5), 616–632.

    Article  Google Scholar 

  • Sikes, P. (2000). Truth and Lies Revisited. British Educational Research Journal, 26(2), 257–270.

    Article  Google Scholar 

  • Stanley, L. (1992). The Auto/Biographical I. Manchester: Manchester University Press.

    Google Scholar 

  • Sykes, A. J. M. (1965). Myth and Attitude Change. Human Relations, 18(4), 323–337.

    Article  Google Scholar 

  • Thackray, L. (2013). The Meanings of the ‘Struggle/Fight Metaphor’ in the Special Needs Domain: The Experiences of Practitioners and Parents of Children with High Functioning Autism Spectrum Conditions, PhD unpublished, University of Sussex. Retrieved from http://sro.sussex.ac.uk/47168/

  • Truss, C. (2008). Peter’s Story: Reconceptualising the UK SEN System. European Journal of Special Needs Education, 23(4), 365–377.

    Article  Google Scholar 

  • UNCRC. (1989). The United Nations Convention on the Rights of the Child. http://www.unicef.org.uk/UNICEFs-Work/UN-Convention/. Accessed 31 Aug 2015.

Download references

Author information

Authors and Affiliations

Authors

Editor information

Editors and Affiliations

Copyright information

© 2018 The Author(s)

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Thackray, L. (2018). Anonymity, Confidentiality and Informed Consent: Exploring Ethical Quandaries and Dilemmas in Research with and About Disabled Children’s Childhoods. In: Runswick-Cole, K., Curran, T., Liddiard, K. (eds) The Palgrave Handbook of Disabled Children’s Childhood Studies. Palgrave Macmillan, London. https://doi.org/10.1057/978-1-137-54446-9_20

Download citation

  • DOI: https://doi.org/10.1057/978-1-137-54446-9_20

  • Published:

  • Publisher Name: Palgrave Macmillan, London

  • Print ISBN: 978-1-137-54445-2

  • Online ISBN: 978-1-137-54446-9

  • eBook Packages: Social SciencesSocial Sciences (R0)

Publish with us

Policies and ethics