Supportive Care in Cancer

, Volume 19, Issue 1, pp 27–35 | Cite as

Parental experience at the end-of-life in children with cancer: ‘preservation’ and ‘letting go’ in relation to loss

  • Marijke C. Kars
  • Mieke H. F. Grypdonck
  • Maria C. de Korte-Verhoef
  • Willem A. Kamps
  • Esther M. M. Meijer-van den Bergh
  • Marian A. Verkerk
  • Johannes J. M. van Delden
Original Article



For children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility.

Participants and methods

A multicenter study using qualitative research was undertaken during the EoL phase. One-time and repeated open interviews were conducted with 44 parents of 23 children with incurable cancer.


Feelings of loss play a prominent role during the EoL phase. Dealing with loss is a process of stepwise relinquishing that becomes manifest in an internal struggle between preservation and letting go. Preservation means that parents try to maintain the child’s status quo. Letting go means parents give up their resistance to loss in service of their child’s well-being. Although the relative measure of each changes over time, parents have great difficulty making the transition because it implies a change in source of control. A timely completion of this transition positively influences the child’s well-being as well as the evaluation of enacted parenthood.


For parents the essence of the palliative process is not to accept death but to deal with the loss of their child. Although the need to avoid loss and gain control by means of preservation is fully understandable, the study indicated that parents who made the transition to letting go had an increased receptiveness of their child’s real situation and needs.


Decision-making Neoplasm Palliative care Parenting Quality of life End-of-life care 



Funding for this study was supported by a grant from the Dutch Cancer Society.

We thank the members of the Presence Research Group for their assistance with data collection, respectively.



Research associate

Rotterdam, Erasmus MC

Rob Pieters/Auke Beishuizen

Inekee van der Vaart/Clementine Dekker/Maria de Jong

Groningen, UMCG

Willem Kamps


Nijmegen, Radboud MC

Peter Hoogerbrugge

Jacqueline Teunissen

Amsterdam, AMC

Huib Caron

Nelia Langeveld

Utrecht, UMCU

Marc Bierings

Birgitta Versluys


  1. 1.
    Bearison DJ (2006) When treatment fails. How medicine cares for dying children. University Press, OxfordGoogle Scholar
  2. 2.
    Bluebond-Langner M, Belasco JB, Goldman A, Belasco C (2007) Understanding parents’ approaches to care and treatment of children with cancer when standard therapy has failed. J Clin Oncol 25:2414–2419CrossRefPubMedGoogle Scholar
  3. 3.
    Charmaz K (2006) Constructing grounded theory: a practical guide through qualitative analysis. SAGE, LondonGoogle Scholar
  4. 4.
    Contro N, Larson J, Scofield S, Sourkes B, Cohen H (2002) Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med 156:14–19PubMedGoogle Scholar
  5. 5.
    Creswell JW (2003) Research design. Qualitative, quantitative, and mixed methods approaches. Sage, Thousand OaksGoogle Scholar
  6. 6.
    Harrington Jacobs H (2005) Ethics in pediatric end-of-life care: a nursing perspective. J Pediatric Nursing 20:360–369CrossRefGoogle Scholar
  7. 7.
    Hechler T, Blankenburg M, Friedrichsdorf SJ et al (2008) Parents’ perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr 220:166–174CrossRefPubMedGoogle Scholar
  8. 8.
    Hinds PS, Drew D, Oakes LL et al (2005) End-of-life care preferences of pediatric patients with cancer. J Clin Oncol 20:9146–9154CrossRefGoogle Scholar
  9. 9.
    Hinds PS, Oakes L, Furman W (1997) Decision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer. Oncol Nurs Forum 24:1523–1528PubMedGoogle Scholar
  10. 10.
    Hinds PS, Pritchard M, Harper J (2004) End-of-life research as a priority for pediatric oncology. J Pediatr Oncol Nurs 21:175–179CrossRefPubMedGoogle Scholar
  11. 11.
    Holloway I, Wheeler S (2002) Qualitative research in nursing. Blackwell Science, LondonGoogle Scholar
  12. 12.
    Hurwitz CA, Duncan J, Wolfe J (2004) Caring for the child with cancer at the close of life: "there are people who make it, and I’m hoping I’m one of them". JAMA 292:2141–2149CrossRefPubMedGoogle Scholar
  13. 13.
    Hynson JL, Sawyer SM (2001) Paediatric palliative care: distinctive needs and emerging issues. J Paediatr Child Health 37:323–325CrossRefPubMedGoogle Scholar
  14. 14.
    Johnson R, Waterfield J (2004) Making words count: the value of qualitative research. Physiother Res Int 9:121–131CrossRefPubMedGoogle Scholar
  15. 15.
    Kane JR, Hellsten MB, Coldsmith A (2004) Human suffering: the need for relationship-based research in pediatric end-of-life care. J Pediatr Oncol Nurs 21:180–185CrossRefPubMedGoogle Scholar
  16. 16.
    Kars MC, Duijnstee MS, Pool A, van Delden JJ, Grypdonck MH (2008) Being there: parenting the child with acute lymphoblastic leukaemia. J Clin Nurs 17:1553–1562CrossRefPubMedGoogle Scholar
  17. 17.
    Kars MC, Grypdonck MHF, Duijnstee MSH (2003) Being there: the way parents experience and cope with the care for their child with leukaemia. Academia, Gent (Dutch Publication)Google Scholar
  18. 18.
    Kreicbergs UC, Lannen P, Onelov E, Wolfe J (2007) Parental grief after losing a child to cancer: impact of professional and social support on long-term outcomes. J Clin Oncol 25:3307–3312CrossRefPubMedGoogle Scholar
  19. 19.
    Liben S, Papadatou D, Wolfe J (2008) Paediatric palliative care: challenges and emerging ideas. Lancet 371:852–864CrossRefPubMedGoogle Scholar
  20. 20.
    Mack JW, Hilden JM, Watterson J et al (2005) Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23:9155–9161CrossRefPubMedGoogle Scholar
  21. 21.
    Monterosso L, Kristjanson LJ (2008) Supportive and palliative care needs of families of children who die from cancer: an Australian study. Palliat Med 22:59–69CrossRefPubMedGoogle Scholar
  22. 22.
    Morse JM, Barrett M, Mayan M, Olson K, Spiers J (2002) Verification strategies for establishing reliability and validity in qualitative research. Inter J Qualitative Methods. Available at:∼ijqm. Accessed 29 June 2006
  23. 23.
    Nolen-Hoeksema S, Larson J (1999) Coping with loss. Erlbaum, MahwahGoogle Scholar
  24. 24.
    Nuss SL, Hinds PS, LaFond DA (2005) Collaborative clinical research on end-of-life care in pediatric oncology. Semin Oncol Nurs 21:125–134CrossRefPubMedGoogle Scholar
  25. 25.
    Olechnowicz JQ, Eder M, Simon C, Zyzanski S, Kodish E (2002) Assent observed: children’s involvement in leukemia treatment and research discussions. Pediatrics 109:806–814CrossRefPubMedGoogle Scholar
  26. 26.
    NVivo [computer program] (2006) Version 7. QSR International, Doncaster VictoriaGoogle Scholar
  27. 27.
    Rousseau P (1995) Hospice and palliative care. Dis Mon 41:774–842Google Scholar
  28. 28.
    Rubin SS, Malkinson R (2001) Parental response to child loss across the life cycle: clinical and research perspectives. In: Stroebe M, Hansson RO, Stroebe W, Schut H (eds) Handbook of bereavement research: consequences, coping, and care, 2nd edn. APA, Washington, pp 219–240CrossRefGoogle Scholar
  29. 29.
    Rushton CH (2004) Ethics and palliative care in pediatrics. Am J Nurs 104:54–63PubMedGoogle Scholar
  30. 30.
    Sandelowski M (2002) Reembodying qualitative inquiry. Qual Health Res 12:104–115CrossRefPubMedGoogle Scholar
  31. 31.
    Snethen JA, Broome ME, Knafl K, Deatrick JA, Angst DB (2006) Family patterns of decision-making in pediatric clinical trials. Res Nurs Health 29:223–232CrossRefPubMedGoogle Scholar
  32. 32.
    Stiller CA, Draper GJ (2005) The epidemiology of cancer in children. In: Voute PA, Barret A, Stevens MCG, Caron HN (eds) Cancer in children. Clinical management. Oxford University Press, Oxford, pp 1–16Google Scholar
  33. 33.
    Strauss A, Corbin J (1998) Basics of qualitative research. Techniques and procedures for developing grounded theory. Sage, Thousand OaksGoogle Scholar
  34. 34.
    Valdimarsdottir U, Kreicbergs U, Hauksdottir A et al (2007) Parents’ intellectual and emotional awareness of their child’s impending death to cancer: a population-based long-term follow-up study. Lancet Oncol 8:706–714CrossRefPubMedGoogle Scholar
  35. 35.
    Vickers JL, Carlisle C (2000) Choices and control: parental experiences in pediatric terminal home care. J Pediatr Oncol Nurs 17:12–21PubMedGoogle Scholar
  36. 36.
    Vrakking AM, van der Heide HA, Arts WF et al (2005) Medical end-of-life decisions for children in the Netherlands. Arch Pediatr Adolesc Med 159:802–809CrossRefPubMedGoogle Scholar
  37. 37.
    WHO (1998) Definition of palliative care. Available at Accessed 2 Feb 2009
  38. 38.
    Wolfe J, Grier HE, Klar N et al (2000) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342:326–333CrossRefPubMedGoogle Scholar
  39. 39.
    Wolfe J, Klar N, Grier HE et al (2000) Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. JAMA 284:2469–2475CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag 2009

Authors and Affiliations

  • Marijke C. Kars
    • 1
  • Mieke H. F. Grypdonck
    • 2
  • Maria C. de Korte-Verhoef
    • 3
  • Willem A. Kamps
    • 4
  • Esther M. M. Meijer-van den Bergh
    • 5
  • Marian A. Verkerk
    • 6
  • Johannes J. M. van Delden
    • 7
  1. 1.Department of Nursing Science, Julius Center for Health Sciences and Primary CareUniversity Medical Center UtrechtUtrechtThe Netherlands
  2. 2.Department of Nursing ScienceUniversity Hospital/Campus Heijmans Blok AGhentBelgium
  3. 3.Department of Nursing Science, Julius Center for Health Sciences and Primary CareUniversity Medical Center UtrechtUtrechtThe Netherlands
  4. 4.Department of Pediatric Oncology/Haematology, Beatrix Children’s HospitalUniversity Medical Centre GroningenGroningenThe Netherlands
  5. 5.Department of Pediatric Oncology and Hematology/Medical PsychologyRadboud University Nijmegen Medical CentreNijmegenThe Netherlands
  6. 6.Health Sciences/Department of MetamedicaUniversity Medical Centre GroningenGroningenThe Netherlands
  7. 7.Department of Medical Ethics, Julius Center for Health Sciences and Primary CareUniversity Medical Center UtrechtUtrechtThe Netherlands

Personalised recommendations