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Development of a resource for parents with advanced cancer: What do parents want?

Published online by Cambridge University Press:  22 May 2007

JANE TURNER ,
ALEXANDRA CLAVARINO ,
PATSY YATES ,
MARYANNE HARGRAVES ,
VERONICA CONNORS  and
SUE HAUSMANN
JANE TURNER
Affiliation:
Department of Psychiatry, University of Queensland, Brisbane, Australia
ALEXANDRA CLAVARINO
Affiliation:
School of Population Health, University of Queensland, Brisbane, Australia
PATSY YATES
Affiliation:
School of Nursing, Queensland University of Technology, Brisbane, Australia
MARYANNE HARGRAVES
Affiliation:
Haematology and Oncology Clinics of Australasia, Wesley Campus, Brisbane, Australia
VERONICA CONNORS
Affiliation:
Prince Charles Hospital and Royal Brisbane and Women's Hospital Combined Palliative Care Service, Brisbane, Australia
SUE HAUSMANN
Affiliation:
Oncology Ambulatory Care Services, Princess Alexandra Hospital, Brisbane, Australia
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Abstract

Objective: Parents coping with a diagnosis of advanced cancer experience distress and guilt about the impact of the disease on their children but report that there are few resources specific to advanced disease to guide and support them in discussions with their children. Although some resources have been developed to assist parents with advanced cancer, it appears that these are not widely disseminated.

Methods: To determine the need for a brief resource that could be given to parents at the point of diagnosis of advanced cancer, including its content, in-depth interviews were conducted with eight women with advanced breast cancer.

Results: Women confirmed that they had received minimal assistance from health professionals in discussing the diagnosis with their children, and even when professional counselors were accessed they were not always attuned to the specific needs of parents with advanced cancer. Women felt frustrated that information they did access focused on early disease and lacked the details women felt they needed in coping with advanced cancer. Women felt that there was a need for a brief resource that reassured parents about the impact of the cancer on their children, including practical strategies to help them cope and examples of the ways other parents had responded to difficult questions such as about parental death. A draft resource was developed, critically reviewed by the participants, and their comments incorporated into a final version.

Significance of results: This article expands on the themes highlighted by women as important to assist parents with advanced cancer, including the final resource that was developed.

Keywords

Advanced cancerParentsChildrenInformation
Type
Research Article
Information
Palliative & Supportive Care , Volume 5 , Issue 2 , June 2007 , pp. 135 - 145
Copyright
© 2007 Cambridge University Press

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References

REFERENCES

Barnes, J., Kroll, L., Bourke, O., et al. (2000). Qualitative interview study of communication between parents and children about maternal breast cancer. British Medical Journal, 321, 479–482.Google Scholar
Catalan, J., Burgess, A., Pergami, A., et al. (1996). The psychological impact on staff caring for people with serious illness: The case of HIV infection and oncology. Journal of Psychosomatic Research, 40, 425–435.Google Scholar
Christ, G. (2000). Impact of development on childrens' mourning. Cancer Practice, 8, 72–81.Google Scholar
Christ, G., Siegel, K., Freund, B., et al. (1993). Impact of parental terminal cancer on latency-age children. American Journal of Orthopsychiatry, 63, 417–425.Google Scholar
Compas, B.E., Worsham, N.L., Ey, S., et al. (1996). When Mom or Dad has cancer: II. Coping, cognitive appraisals, and psychological distress in children of cancer patients. Health Psychology, 15, 167–175.Google Scholar
Elmberger, E., Bolund, C., & Lutsen, K. (2000). Transforming the exhausting to energizing process of being a good parent in the face of cancer. Health Care for Women International, 21, 485–499.Google Scholar
Fallowfield, L.J., Lipkin, M., & Hall, A. (1998). Teaching senior oncologists communication skills: Results from phase I of a comprehensive longitudinal program in the United Kingdom. Journal of Clinical Oncology, 16, 1961–1968.Google Scholar
Grant, K.E. & Compas, B.E. (1995). Stress and anxious-depressed symptoms among adolescents: Searching for mechanisms of risk. Journal of Consulting and Clinical Psychology, 63, 1015–1021.Google Scholar
Hilton, B.A. (1996). Getting back to normal: The family experience during early stage breast cancer. Oncology Nursing Forum, 23, 605–614.Google Scholar
Hilton, B.A., Crawford, J.A., & Tarko, M.A. (2000). Men's perspectives on individual and family coping with their wives' breast cancer and chemotherapy. Western Journal of Nursing Research, 22, 438–459.Google Scholar
Kirsch, S.E.D., Brandt, P.A., & Lewis, F.M. (2003). Making the most of the moment: When a child's mother has breast cancer. Cancer Nursing, 26, 47–54.Google Scholar
Leedman, B. & Meyerowitz, B.E. (1999). Reponse to parental cancer: A clinical perspective. Journal of Clinical Psychology in Medical Settings, 6, 441–461.Google Scholar
Maguire, P. (1999). Improving communication with cancer patients. European Journal of Cancer, 35, 2058–2065.Google Scholar
Northouse, L.L. (1995). The impact of cancer in women on the family. Cancer Practice, 3, 134–142.Google Scholar
Rauch, P.K. & Muriel, A.C. (2005). Raising an Emotionally Healthy Child When a Parent Is Sick. Boston: McGraw-Hill.
Saldinger, A., Cain, A.C., Porterfield, K., et al. (2004). Facilitating attachment between school-aged children and a dying parent. Death Studies, 28, 915–940.Google Scholar
Shands, M.E., Lewis, F.M., & Zahlis, E.H. (2000). Mother and child interactions about the mother's breast cancer: An interview study. Oncology Nursing Forum, 27, 77–85.Google Scholar
Turner, J., Kelly, B., Swanson, C., et al. (2005). Psychosocial impact of newly diagnosed metastatic breast cancer. Psycho-Oncology, 14, 396–407.Google Scholar
Welch, A.S., Wadsworth, M.E., & Compas, B.E. (1996). Adjustment of children and adolescents to parental cancer. Cancer, 77, 1409–1418.Google Scholar