Journal of Pain and Symptom Management
Volume 38, Issue 4 , Pages 561-567 , October 2009

Bereaved Parents' Perceptions About When Their Child's Cancer-Related Death Would Occur

  • Michele Pritchard, PhD, RN, CPNP

      Affiliations

    • Division of Nursing Research, St. Jude Children's Research Hospital, Memphis, Tennessee
    • ,
  • Deo Kumar Srivastava, PhD

      Affiliations

    • Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, Tennessee
    • ,
  • James O. Okuma, MS

      Affiliations

    • Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, Tennessee
    • ,
  • Brent Powell, MDiv

      Affiliations

    • Patient Care Services, St. Jude Children's Research Hospital, Memphis, Tennessee
    • ,
  • Elizabeth Burghen, MSN, MBA

      Affiliations

    • Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
    • ,
  • Nancy K. West, BSN

      Affiliations

    • Division of Nursing Research, St. Jude Children's Research Hospital, Memphis, Tennessee
    • ,
  • Jami S. Gattuso, MSN, CPON

      Affiliations

    • Division of Nursing Research, St. Jude Children's Research Hospital, Memphis, Tennessee
    • ,
  • Sheri L. Spunt, MD

      Affiliations

    • Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
    • Department of Pediatrics, University of Tennessee Health Sciences Center, Memphis, Tennessee
    • ,
  • Justin N. Baker, MD

      Affiliations

    • Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
    • Department of Pediatrics, University of Tennessee Health Sciences Center, Memphis, Tennessee
    • ,
  • Javier Kane, MD

      Affiliations

    • Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
    • Department of Pediatrics, University of Tennessee Health Sciences Center, Memphis, Tennessee
    • ,
  • Wayne L. Furman, MD

      Affiliations

    • Department of Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee
    • Department of Pediatrics, University of Tennessee Health Sciences Center, Memphis, Tennessee
    • ,
  • Pamela S. Hinds, PhD, RN, FAAN

      Affiliations

    • Department of Nursing Research, Children's National Medical Center, George Washington University, Washington, DC, USA
    • Department of Pediatrics, George Washington University, Washington, DC, USA
    • Corresponding Author InformationAddress correspondence to: Pamela S. Hinds, PhD, RN, FAAN, Department of Nursing Research, Children's National Medical Center, 111 Michigan Avenue, 6th Floor Research, NW Washington, DC 20010, USA.

,Accepted 19 February 2009.

References 

  1. Wolfe J, Klar N, Grier HE, et al. Understanding of prognosis among parents of children who died of cancer: impact of treatment goals and integration of palliative care. JAMA. 2000;284:2469–2475
  2. Pritchard M, Burghen E, Srivastava DK, et al. Cancer-related symptoms most concerning to parents during the last week and last day of their child's life. Pediatrics. 2008;121(5):e1301–e1309
  3. Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med. 2002;156:14–19
  4. Freeman K, O'Dell C, Meola C. Childhood brain tumors: parental concerns and stressors by phase of illness. J Pediatr Oncol Nurs. 2004;21(2):87–97
  5. Krippendorff K. Content analysis: An introduction to its methodology. Newbury Park, CA: SAGE Publications; 1980;
  6. Edwards KE, Neville BA, Cook EF, et al. Understanding of prognosis and goals of care among couples whose child died of cancer. J Clin Oncol. 2008;26:1310–1315
  7. Jakobsson E, Bergh I, Gaston-Johansson F, Stolt CM, Ohlen J. The turning point: clinical identification of dying and reorientation of care. J Palliat Med. 2006;9:1348–1358
  8. Hagerty RG, Butow PN, Ellis PA, et al. Cancer patient preferences for communication of prognosis in the metastatic setting. J Clin Oncol. 2004;22:1721–1730
  9. Parker SM, Clayton JM, Hancock K, et al. A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage. 2007;34:81–93
  10. Starks H, Pearlman RA, Hsu C, et al. Why now? Timing and circumstances of hastened death. J Pain Symptom Manage. 2005;30:215–226
  11. Steinhauser KE, Christakis NA, Clipp EC, et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001;22:727–737
  12. Terry W, Olson LG, Wilss L, Boulton-Lewis G. Experience of dying: concerns of dying patients and of carers. Intern Med J. 2006;36:338–346

 This research was supported by grants from the Oncology Nursing Foundation and the National Institutes of Health (Cancer Center Support Grant P30 CA 21765) and by the American Lebanese Syrian Associated Charities.

PII: S0885-3924(09)00633-2

doi: 10.1016/j.jpainsymman.2009.01.005

Journal of Pain and Symptom Management
Volume 38, Issue 4 , Pages 561-567 , October 2009

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