Medicine, Health Care and Philosophy

, Volume 18, Issue 1, pp 113–119 | Cite as

Thank you for your lovely card: ethical considerations in responding to bereaved parents invited in error to participate in childhood cancer survivorship research

  • Claire E. WakefieldEmail author
  • Jordana K. McLoone
  • Leigh A. Donovan
  • Richard J. Cohn
Scientific Contribution


Research exploring the needs of families of childhood cancer survivors is critical to improving the experiences of future families faced by this disease. However, there are numerous challenges in conducting research with this unique population, including a relatively high mortality rate. In recognition that research with cancer survivors is a relational activity, this article presents a series of cases of parents bereaved by childhood cancer who unintentionally received invitations to participate in survivorship research. We explore six ethical considerations, and compare our experiences with that described previously. Our considerations include the sharing of confidential information with external parties to confirm past patients’ vital status and appropriate researcher responses to bereaved parents. The management of researchers’ emotional safety when working with illness populations and the fact that study invitations can elicit grief responses in non-bereaved families are discussed. To conclude, we argue for the benefits of inviting bereaved parents whose children died after treatment completion in survivorship research. Such parents’ early survivorship experiences will otherwise be systemically neglected. We argue that discussing complex cases can assist researchers to protect participants’ and researchers’ emotional well-being. We hope to contribute to the dearth of discussion about research operating procedures to address these issues.


Bereavement Childhood cancer Parents Qualitative research Research ethics Research methods Adverse events Incidents 



We acknowledge the contribution of Alison Young (Researcher; Sydney Children’s Hospital). This study was funded by the Kids Cancer Alliance, which is supported by a translational research grant from the Cancer Institute of NSW. Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501) and an Early Career Development fellowship from the Cancer Institute of NSW (ID: 11/ECF/3-43). The Behavioural Sciences Unit is supported by the Kids with Cancer Foundation.


  1. Australian Bureau of Statistics. 2010. Moving House. Australian social trends, Cat. no. 4102.0. Australian Bureau of Statistics, Canberra.Google Scholar
  2. Bellavance, E.C., and H. Alexander. 2012. Ethical considerations in clinical research. Annals of Surgical Oncology 19(2): 355–356.CrossRefGoogle Scholar
  3. Birks, M., Y. Chapman, and K. Francis. 2008. Memoing in qualitative research probing data and processes. Journal of Research in Nursing 13(1): 68–75.CrossRefGoogle Scholar
  4. Bowtell, E.C., S.M. Sawyer, R.A. Aroni, J.B. Green, and R.E. Duncan. 2013. “Should I Send a Condolence Card?” promoting emotional safety in qualitative health research through reflexivity and ethical mindfulness. Qualitative Inquiry 19(9): 652–663.Google Scholar
  5. D’Agostino, N.M., D. Berlin-Romalis, V. Jovcevska, and M. Barrera. 2008. Bereaved parents’ perspectives on their needs. Palliative and Supportive Care 6(01): 33–41.Google Scholar
  6. Dear, R.F., A.L. Barratt, S. Crossing, P.N. Butow, S. Hanson, and M.H. Tattersall. 2011. Consumer input into research: The Australian Cancer Trials website. Health Research Policy and Systems 9(1): 30.CrossRefGoogle Scholar
  7. Dickson-Swift, V., E.L. James, S. Kippen, and P. Liamputtong. 2006. Blurring boundaries in qualitative health research on sensitive topics. Qualitative Health Research 16(6): 853–871.CrossRefGoogle Scholar
  8. Dickson-Swift, V., E.L. James, S. Kippen, and P. Liamputtong. 2008. Risk to researchers in qualitative research on sensitive topics: Issues and strategies. Qualitative Health Research 18(1): 133–144.CrossRefGoogle Scholar
  9. Duncan, R.E., S.E. Drew, J. Hodgson, and S.M. Sawyer. 2009. Is my mum going to hear this? Methodological and ethical challenges in qualitative health research with young people. Social Science and Medicine 69(11): 1691–1699.CrossRefGoogle Scholar
  10. Evans, N., C.E. Wakefield, J.K. McLoone, and R.J. Cohn. 2013. Eight diagnoses later, they finally got it right: Familial diagnostic experiences in paediatric oncology. Australian New Zealand Children’s Haematology and Oncology Group (ANZCHOG), Annual Scientific Meeting, Melbourne.Google Scholar
  11. Ewing, G., M. Rogers, S. Barclay, J. McCabe, A. Martin, and C. Todd. 2004. Recruiting patients into a primary care based study of palliative care: Why is it so difficult? Palliative Medicine 18(5): 452–459.CrossRefGoogle Scholar
  12. Guillemin, M., and L. Gillam. 2004. Ethics, reflexivity, and “ethically important moments” in research. Qualitative Inquiry 10(2): 261–280.CrossRefGoogle Scholar
  13. Hudson, M.M., K.K. Ness, J.G. Gurney, D.A. Mulrooney, W. Chemaitilly, K.R. Krull, D.M. Green, G.T. Armstrong, K.A. Nottage, and K.E. Jones. 2013. Clinical ascertainment of health outcomes among adults treated for childhood cancer outcomes among adult survivors of childhood cancer. JAMA 309(22): 2371–2381.CrossRefGoogle Scholar
  14. Johnson, B., and J.M. Clarke. 2003. Collecting sensitive data: The impact on researchers. Qualitative Health Research 13(3): 421–434.CrossRefGoogle Scholar
  15. Kane, L. 2006. Bereavement care for families part 2: Evaluation of a paediatric follow-up programme. International Journal of Palliative Nursing 12(10): 484–494.CrossRefGoogle Scholar
  16. Koffman, J., I.J. Higginson, S. Hall, J. Riley, P. McCrone, and B. Gomes. 2012. Bereaved relatives’ views about participating in cancer research. Palliative Medicine 26(4): 379–383.CrossRefGoogle Scholar
  17. Lustyk, M., N. Chawla, R. Nolan, and G. Marlatt. 2009. Mindfulness meditation research: Issues of participant screening, safety procedures, and researcher training. Advances in mind–body medicine 24(1): 20–30.Google Scholar
  18. Macdonald, M.E., S. Liben, F.A. Carnevale, J.E. Rennick, S.L. Wolf, D. Meloche, and S.R. Cohen. 2005. Parental perspectives on hospital staff members’ acts of kindness and commemoration after a child’s death. Pediatrics 116(4): 884–890.CrossRefGoogle Scholar
  19. Macnab, A.J., T. Northway, K. Ryall, D. Scott, and G. Straw. 2003. Death and bereavement in a paediatric intensive care unit: Parental perceptions of staff support. Paediatrics and Child Health 8(6): 357–362.Google Scholar
  20. Mertens, A.C., Q. Liu, J.P. Neglia, K. Wasilewski, W. Leisenring, G.T. Armstrong, L.L. Robison, and Y. Yasui. 2008. Cause-specific late mortality among 5-year survivors of childhood cancer: The childhood cancer survivor study. Journal of the National Cancer Institute 100(19): 1368–1379.CrossRefGoogle Scholar
  21. Mukherjee, S. 2011. The Emperor of all Maladies: A Biography of Cancer: Scribner.Google Scholar
  22. National Statement on Ethical Conduct in Human Research 2007. 2014. The National Health and Medical Research Council, the Australian Research Council and the Australian Vice-Chancellors’ Committee. Commonwealth of Australia, Canberra.Google Scholar
  23. Therapeutic Goods Administration. 2000. Note for Guidance on Good Clinical Practice (CPMP/ICH/135/95). Department of Health and Aged Care. Accessed 27 June 2014.
  24. Oeffinger, K.C., A.C. Mertens, C.A. Sklar, T. Kawashima, M.M. Hudson, A.T. Meadows, D.L. Friedman, N. Marina, W. Hobbie, N.S. Kadan-Lottick, C.L. Schwartz, W. Leisenring, and L.L. Robison. 2006. Chronic health conditions in adult survivors of childhood cancer. New England Journal of Medicine 355(15): 1572–1582.CrossRefGoogle Scholar
  25. Ridge, D., A. Hee, and R. Aroni. 1999. Being ‘real’ in suicide prevention evaluation: The role of the ethnographer’s emotions under traumatic conditions. Australian Journal of Primary Health 5(3): 21–31.CrossRefGoogle Scholar
  26. Rossman, G.B., and S.F. Rallis. 2010. Everyday ethics: Reflections on practice. International Journal of Qualitative Studies in Education 23(4): 379–391.CrossRefGoogle Scholar
  27. Roth-Cline, M., J. Gerson, P. Bright, C. S. Lee, and R. M. Nelson. (2011). Ethical considerations in conducting pediatric research. In Pediatric Clinical Pharmacology, 219–244. Springer.Google Scholar
  28. Sansom-Daly, U.M., and C.E. Wakefield. 2013. Distress and adjustment among adolescents and young adults with cancer: An empirical and conceptual review. Translational Pediatrics 2(4): 167–197.Google Scholar
  29. Serwint, J.R., and M.E. Nellis. 2005. Deaths of pediatric patients: Relevance to their medical home, an urban primary care clinic. Pediatrics 115(1): 57.Google Scholar
  30. Sixsmith, J., M. Boneham, and J.E. Goldring. 2003. Accessing the community: Gaining insider perspectives from the outside. Qualitative Health Research 13(4): 578–589.CrossRefGoogle Scholar
  31. Wakefield, C.E., P. Butow, C.A. Fleming, G. Daniel, and R.J. Cohn. 2012. Family information needs at childhood cancer treatment completion. Pediatric Blood and Cancer 58(4): 621–626.CrossRefGoogle Scholar
  32. Wakefield, C. E., D. Drew, S. J. Ellis, E. L. Doolan, J. K. McLoone, and R. J. Cohn. (2014). Grandparents of children with cancer: A controlled study of distress, support, and barriers to care. Psycho-Oncology.Google Scholar
  33. Wakefield, C.E., J. McLoone, B. Goodenough, K. Lenthen, D.R. Cairns, and R.J. Cohn. 2010. The psychosocial impact of completing childhood cancer treatment: A systematic review of the literature. Journal of Pediatric Psychology 35(3): 262–274.CrossRefGoogle Scholar
  34. Wilson, C.L., R.J. Cohn, K.A. Johnson, and L.J. Ashton. 2009. Tracing survivors of childhood cancer in Australia. Pediatric Blood and Cancer 52(4): 510–515.CrossRefGoogle Scholar
  35. Wray, N., M. Markovic, and L. Manderson. 2007. Researcher saturation: The impact of data triangulation and intensive-research practices on the researcher and qualitative research process. Qualitative Health Research 17(10): 1392–1402.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media Dordrecht 2014

Authors and Affiliations

  • Claire E. Wakefield
    • 1
    • 2
    Email author
  • Jordana K. McLoone
    • 1
    • 2
  • Leigh A. Donovan
    • 1
    • 2
    • 3
  • Richard J. Cohn
    • 1
    • 2
  1. 1.Kids Cancer CentreSydney Children’s HospitalRandwickAustralia
  2. 2.School of Women’s and Children’s Health, UNSW MedicineUniversity of New South WalesKensingtonAustralia
  3. 3.Paediatric Palliative Care ServiceRoyal Children’s Hospital (RCH)BrisbaneAustralia

Personalised recommendations