Beginning Treatment for Childhood Acute Lymphoblastic Leukemia: Insights From the Parents' Perspective

Pam McGrath

ONF 2002, 29(6), 988-996. DOI: 10.1188/02.ONF.988-996

Purpose/Objectives: To report the perspective of parents during the initial stages of diagnosis and treatment for their children's acute lymphoblastic leukemia (ALL).

Design: Descriptive and phenomenologic.

Setting: Royal Children's Hospital, Brisbane, Australia.

Sample: Parents (mothers, n = 12; fathers, n = 4) of 12 children (ages 0-10) undergoing treatment for ALL.

Methods: Open-ended, audiotaped interviews were transcribed verbatim and analyzed.

Main Research Variables: Parents' experiences of their children's initial diagnosis and treatment of ALL.

Findings: The parents' insights provided a clear indication that the initial stage of treatment is highly stressful and parents may be overwhelmed by the experience. The situational stress translated into three potentially overwhelming emotional states: the stress of uncertainty, the shock of diagnosis, and a feeling of being trapped in an unpleasant emotional roller-coaster ride. Honesty from healthcare professionals, the opportunity to share feelings, and an affirmation of the harshness of the situation were reported as helpful in dealing with the sense of being overwhelmed.

Conclusion: Parents need honest information and sensitive emotional support to come to terms with the stresses associated with their children's diagnosis and initial treatment of ALL. Parents must have access to a safe environment where they can express their feelings and have the harsh reality of the initial stage of treatment affirmed.

Implications for Nursing: Parents need considerable emotional support to negotiate the initial stage of treatment for ALL. Parents of children diagnosed with ALL must have honest information about diagnosis and treatment, as much information as possible for planning their daily lives, an opportunity to express real feelings, access to moments of personal space where feelings can be processed, and compassionate understanding of the emotional difficulties associated with this difficult life journey.

Jump to a section

    References

    Adams, D. (1992). Parents of children with cancer speak out: Problems, needs and sources of help. Toronto, Canada: Candlelighters Childhood Cancer Foundation Canada.

    Barakat, L., Kazak, A., Meadows, A., Casey, R., Meeske, K., & Stuber, M. (1997). Families surviving childhood cancer: A comparison of post-traumatic stress symptoms with families of healthy children. Journal of Pediatric Psychology, 22, 843-859.

    Baxandall, S., & Reddy, P. (1993). The courage to care: The impact of cancer on the family. Melbourne, Australia: David Lovell.

    Bluglass, K. (1991). Care of the cancer patient's family. In M. Watson (Ed.), Cancer patient care, psychological treatment methods (pp. 159-175). Cambridge, UK: Cambridge University Press.

    Brown, R., Kaslow, N., Hazzard, A., Madan-Swain, A., Sexson, S., Lambert, R., et al. (1992). Psychiatric and family functioning in children with leukemia and their parents. Journal of the American Academy of Child and Adolescent Psychiatry, 31, 495-502.

    Brown, R., Kaslow, N., Madan-Swain, A., Doepke, K., Sexson, S., & Hill, L. (1993). Parental psychopathology and children's adjustment to leukaemia. Journal of the American Academy of Child and Adolescent Psychiatry, 32, 554-561.

    Carpenter, P., Vattimo, C., Messbauer, L., Stolnitz, C., Isle, J., Stutzman, H., et al. (1992). Development of a parent advocate program as part of a pediatric hematology/oncology service. Journal of Psychosocial Oncology, 10(2), 27-38.

    Cayse, L. (1994). Fathers of children with cancer: A descriptive study of their stressors and coping strategies. Journal of Pediatric Oncology Nursing, 11, 102-108.

    Chesler, M., & Barbarin, O. (1987). Childhood cancer and the family. New York: Brunner-Mazel.

    Clarke-Steffen, L. (1993). Waiting and not knowing: The diagnosis of cancer in a child. Journal of Pediatric Oncology Nursing, 10, 146-153.

    Coffey, A., & Atkinson, P. (1996). Making sense of qualitative data: Complementary research strategies. Thousand Oaks, CA: Sage.

    Crombie, I. (1996). Research in health care. New York: Wiley.

    Figley, C. (1983). Catastrophes: An overview of family reactions. In H. McCubbin & C. Figley (Eds.), Stress and the family (pp. 3-20). New York: Brunner-Mazel.

    Grbich, C. (1999). Qualitative research in health. Sydney, Australia: Allen and Unwin.

    Greaves, M. (1993). Stem cell origins of leukaemia and curability. British Journal of Cancer, 67, 413-423.

    Greenhalgh, T., & Taylor, R. (1997). Papers that go beyond numbers (qualitative research). British Medical Journal, 315, 740-743.

    Henderson, J., Goldacre, M., Fairweather, J., & Marcovitch, H. (1992). Conditions accounting for substantial time spent in hospital in children aged 1-14. Archives of Disease in Childhood, 67, 83-86.

    Hillman, K. (1997). Comparing child-rearing practices in parents of children with cancer and parents of healthy children. Journal of Pediatric Oncology Nursing, 14, 53-67.

    Holloway, I. (1997). Basic concepts for qualitative research. Oxford, England: Blackwell Science.

    Kazak, A., & Barakat, L. (1997). Brief report: Parenting stress and quality of life during treatment for childhood leukemia predicts child and parent adjustment after treatment ends. Journal of Pediatric Psychology, 22, 749-759.

    Kazak, A., Barakat, L., Meeske, K., Christakis, D., Meadows, A., Casey, R., et al. (1997). Posttraumatic stress, family functioning and social support in survivors of childhood leukemia and their mothers and fathers. Journal of Consulting and Clinical Psychology, 65, 120-129.

    Kazak, A., Stuber, M., Barakat, L., Meeske, K., Guthrie, D., & Meadows, A. (1998). Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancers. Journal of the American Academy of Child and Adolescent Psychiatry, 37, 823-831.

    Keene, N. (1999). Childhood leukemia. Cambridge, UK: O'Reilly.

    Macner-Licht, B., & Rajalmgam, V., Bernard-Opitz, V. (1998). Childhood leukaemia: Towards an integrated psychosocial intervention programme in Singapore. Annals of the Academy of Medicine, Singapore, 27, 485-490.

    Marshall, C., & Rossman, G. (1995). Designing qualitative research (2nd ed.). London: Sage.

    McGrath, P. (1998). Relocation for leukemia treatment: A description of need. Australian Health Review, 21, 143-154.

    McGrath, P. (1999a). Accommodation for patients and carers during relocation for treatment for leukemia: A descriptive profile. Supportive Care in Cancer, 7, 6-10

    McGrath, P. (1999b). The experience of relocation for specialist treatment for haematological malignancies. Cancer Strategy, 1, 157-163.

    McGrath, P. (1999c). Update on psychosocial research on leukaemia for social work practitioners. Social Work in Health Care, 29(2), 1-20.

    McGrath, P. (2000). Confronting Icarus: A psychosocial perspective on haematological malignancies. Aldershot, Hampshire, UK: Ashgate.

    McGrath, P., & Rogers, T. (in press). Relocation for specialist treatment for pediatric acute lymphoblastic leukaemia. Austral-Asian Journal of Cancer.

    Mishel, M. (1984). Perceived uncertainty and stress in illness. Research in Nursing and Health, 7, 163-171.

    Mishel, M. (1990). Reconceptualization of the uncertainty in illness theory. Image-The Journal of Nursing Scholarship, 22, 256-262.

    Mishel, M. (1995). Response to adult uncertainty in illness: A critical review of research. Scholarly Inquiry for Nursing Practice, 9(8), 25-29.

    Mishel, M. (1997). Uncertainty in acute illness. Annual Review of Nursing Research, 15, 57-80.

    Mishel, M. (1999). Uncertainty in chronic illness. Annual Review of Nursing Research, 17, 269-294.

    Mishel, M., Padilla, G., Grant, M., & Sorenson, D. (1991). Uncertainty in illness theory: A replication of the mediating effects of mastery and coping. Nursing Research, 40, 236-240.

    Mott, M. (1990). A child with cancer: A family in crisis. British Medical Journal, 301, 1335-1336.

    Nygaard, R., & Moe, P. (1989). Outcome after cessation of therapy in childhood leukaemia. A population-based Nordic study of 986 patients. Acta Paediatrica Scandinavian, 354(Suppl.), 1-24.

    Padilla, G., Mishel, M., & Grant, M. (1992). Uncertainty, appraisal and quality of life. Quality of Life Research, 1, 155-165.

    Pelcovitz, D., Goldenberg, B., Kakplan, S., Wemblatt, M., Mandel, F., Meyers, B., et al. (1996). Posttraumatic stress disorder in mothers of pediatric cancer survivors. Psychosomatics, 37, 116-126.

    Polit, D., & Hungler, B. (Eds.). (1995). Nursing research: Principles and methods (5th ed.). Philadelphia: Lippincott.

    Pui, C. (2000). Acute lymphoblastic leukaemia in children. Current Opinion in Oncology, 12, 3-12.

    Rubnitz, J., & Pui, C. (1997). Recent advances in the biology and treatment of childhood acute lymphoblastic leukaemia. Current Opinion in Haematology, 4, 233-241.

    Souhami, R., & Tobias, J. (1995). Cancer and its management (2nd ed.). Boston: Blackwell Science.

    Speechley, K., & Noh, S. (1992). Surviving cancer, social support, and parents' psychological adjustment. Journal of Pediatric Psychology, 17, 15-31.

    Stehbens, J. (1988). Childhood cancer. In D. Routh (Ed.), Handbook of pediatric psychology (pp. 135-161). New York: Guilford Press.

    Sterken, D. (1996). Uncertainty and coping in fathers of children with cancer. Journal of Pediatric Oncology Nursing, 13, 81-88.

    Streubert, J., & Carpenter, D. (1995). Qualitative research in nursing: Advancing the humanistic imperative. Philadelphia: Lippincott.

    Stuber, M., Christakis, D., Houskamp, B., & Kazak, A. (1996). Posttrauma symptoms in childhood leukemia survivors and their parents. Psychosomatics, 37, 254-261.