|
Sign In to gain access to subscriptions and/or personal tools.
|
Communication Issues Faced by Parents Who have a Child Diagnosed with Cancer
Juanne N. Clarke, PhD
Department of Sociology and Anthropology jclarke{at}wlu.ca.
Paula Fletcher, PhD
Department of Kinesiology and Physical Education, Wilfred Laurier University, Waterloo, ON, Canada N2L 3C5.
Twenty-nine parents of children who had been diagnosed with various cancers were interviewed through long, semistructured interviews conducted via telephone by a mother whose daughter once had cancer. Parents usually began their narratives of the defining moments in the months, weeks, or days prior to the diagnosis. The authors report on parents' views about one of the defining moments in the stories. At the first level, we call this "communication issues" and include the following topics: communication at diagnosis, contradictions and confusion, getting the "right" amount of information, good and poor communication, feeling listened to, and errors in medical information. At another level, the way that parents talk about communications issues reflects an underlying paradox that parents whose children have cancer face: They are and feel responsible for their children, and yet they often lack knowledge, authority, and power in their dealings with the health care system and its medical care providers.
Key Words: communication • parents • child • cancer
References
- American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: American Psychiatric Association.
- Barbarin, O. A., & Chesler, M. A. (1984a). Coping as interpersonal strategy: Families with childhood cancer. Family Systems Medicine, 2(3), 279-289.
- Barbarin, O. A., & Chesler, M. A. (1984b). Difficulties of providing help in crisis: Relationships between parents of children with cancer and their parents. Journal of Social Issues, 40(4), 113-134.
- Baskin, D. H., Forehand, R., & Saylor, C. (1985). Predictors of psychological adjustment in mothers of children with cancer. Journal of Psychosocial Oncology, 3, 43-54.
- Bennett, M., & Allison, D. (1996). Discussing the diagnosis and prognosis with cancer patients. Postgraduate Medical Journal, 72(843), 25-29.[Abstract/Free Full Text]
- Bryman, A. (2001). Social research methods. Oxford, UK: Oxford University Press.
- Burke, B. L. (1999). Moving children with cancer from hospital to home. The Canadian Nurse, 95(2), 25-28.[Medline]
[Order article via Infotrieve]
- Butow, P. N., Kazemi, J., Beeney, L., Griffin, A. M., Dunn, S. M., & Tattersall, M. H. N. (1996). When the diagnosis is cancer: Patient communication experiences and preferences. Cancer, 77(12), 2630-2637.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Chesler, M. A., & Parry, C. (2001). Gender roles and/or styles in crisis: An integrative analysis of the experiences of fathers of children with cancer. Qualitative Health Research, 11(3), 363-384.[Abstract/Free Full Text]
- Clarke, J. N., & Clarke, L. N. (1999). Finding strength: A mother and daughter's story of childhood cancer. Toronto, Canada: Oxford University Press.
- Eiser, C. (1996). Comprehensive care of the child with cancer: Obstacles to the provision of psychological support in pediatric oncology: A comment. Psychology, Health, & Medicine, 1(2), 145-157.
- Eiser, C. (1998). Long term consequences of childhood cancer. Journal of Child Psychology and Psychiatry, 39, 621-633.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Ellis, P. M., & Tattersall, M. H. N. (1999). How should doctors communicate the diagnosis of cancer to patients? Annals of Medicine, 31(5), 336-341.[Web of Science][Medline]
[Order article via Infotrieve]
- Epstein, R. M. (1993). Perspectives on patient-doctor communication. Journal of Family Practice, 37(4), 377-388.[Web of Science][Medline]
[Order article via Infotrieve]
- Fife, B., Norton, J., & Groom, G. (1987). The family's adaptation to childhood leukemia. Social Science in Medicine, 24(2), 159-168.[CrossRef]
- Frankel, R. M. (1995). Emotion and the physician-patient relationship. Motivation and Emotion, 19(3), 163-173.[CrossRef][Web of Science]
- Gotcher, J. M., & Edwards, R. (1991). Coping strategies of cancer patients: Actual communication and imagined interactions. Health Communication, 2(4), 255-266.
- Green, J. M., & Murton, F. E. (1996). Diagnosis of Duchenne muscular dystrophy: Parents' experiences and satisfaction. Child: Care, Health and Development, 22, 113-128.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Grootenhuis, M. A., & Last, B. F. (1997). Adjustment and coping by parents of children with cancer: A review of the literature. Supportive Care in Cancer, 5, 466-484.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Hardy, M. S., Armstrong, F. D., Routh, D. K., Albrecht, J., & Davis, J. (1994). Coping and communication among parents and children with human immunodeficiency virus and cancer. Journal of Developmental & Behavioural Pediatrics, 15, 549-553.
- Hasnat, M. J., & Graves, P. (2000). Disclosure of developmental disability: A study of parent satisfaction and the determinants of satisfaction. Journal of Pediatric Child Health, 36(1), 32-35.[CrossRef]
- Hawley, D. R., & de Haan, L. (1996). Toward a definition of family resilience: Integrating life-span and family perspective. Family Process, 35(3), 283-298.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Jarrett, N. J., & Payne, S. A. (2000). Creating and maintaining "optimist" in cancer care communication. International Journal of Nursing Studies, 37(1), 81-90.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Johnson, K. R. S. (1998). Ethnocultural influences in cancer. Journal of Clinical Psychology in Medical Settings, 5(3), 357-364.[CrossRef]
- Kazak, A. E., & Nachman, G. S. (1991). Family research on childhood chronic illness: Pediatric oncology as an example. Journal of Family Psychology, 4(4), 462-483.[CrossRef]
- Kidder, L. H., & Judd, C. M. (1986). Research methods in social relations (5th ed.). New York: Holt, Rinehart and Winston.
- Lincoln, Y., & Guba, E. G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.
- Lozowski, S., Chesler, M. A., & Chesney, B. K. (1993). Parental intervention in the medical care of children with cancer. Journal of Psychosocial Oncology, 11(3), 63-88.[Medline]
[Order article via Infotrieve]
- Mangano, J. J. (1999). A rise in the incidence of childhood cancer in the United States. International Journal of Health Services, 29(2), 393-408.[Medline]
[Order article via Infotrieve]
- Manne, S. L., Lesanics, D., Meyers, P., Steinherz, P., Wollner, N., & Redd, W. (1995). Predictors of depressive symptomatology among parents of newly diagnosed children with cancer. Journal of Pediatric Psychology, 20, 541-510.
- Mercer, M., & Ritchie, J. A. (1997). Home community cancer care: Parents' perspectives. Journal of Pediatric Nursing, 12(3), 133-141.[CrossRef][Medline]
[Order article via Infotrieve]
- Morrow, G. R., Hoagland, A. C., & Carpenter, P. J. (1982). Improving physician-patient communications in cancer treatment. Journal of Psychosocial Oncology, 1, 93-101.
- Noble, L. (1998). Doctor-patient communication and adherence to treatment. In L. B. Myers & K. Midence (Eds.), Adherence to treatment in medical conditions (pp. 51-82). Amsterdam, the Netherlands: Harwood Academic.
- Ong, L. M. L., Dehaes, J. C. J. M., Hoos, A. M., & Lammes, F. B. (1995). Doctor-patient communication: A review of the literature. Social Science & Medicine, 40(7), 903-918.[CrossRef]
- Pask, E. G. (1997). Culture and the changing health scene. Australian Pediatric Nursing, 6(1), 25-28.
- Pinkerton, C. R. (1993). Multidisciplinary care in the management of childhood cancer. British Journal of Hospital Medicine, 50(1), 54-59.[Web of Science][Medline]
[Order article via Infotrieve]
- Quirt, C. F., Mackillop, W. J., Ginsburg, A. D., Sheldon, L., Brundage, M., Dixon, P., et al. (1997). Do doctors know when their patients don't? A survey of doctor-patient communication in lung cancer. Lung Cancer, 18(1), 1-20.[CrossRef][Web of Science][Medline]
[Order article via Infotrieve]
- Rosenthal, M. K. (1999). Out-of-home child care research: A cultural perspective. International Journal of Behavioural Development, 23(2), 477-518.
- Schneider, D. E., & Tucker, R. K. (1992). Measuring communicative satisfaction in doctor-patient relations: The Doctor-Patient Communication Inventory. Health Communication, 4(1), 19-28.[Medline]
[Order article via Infotrieve]
- Selleck, S. M., Desa, V. X., & MacDonald, K. (1996). The impact of shared care on children with cancer and their families. Pediatric Child Health, 1(3), 211-215.
- Shapiro, J., Perez, M., & Warden, M. J. (1998). The importance of family functioning to caregiver adaptation in mothers of child cancer patients: Testing a social ecological model. Journal of Pediatric Oncology Nursing, 15(1), 47-54.[Abstract/Free Full Text]
- Speechley, K. N., & Noh, S. (1992). Surviving childhood cancer, social support, and parents' psychological adjustment. Journal of Pediatric Psychology, 17(1), 15-31.[Abstract/Free Full Text]
- Stuber, M. L., Gonzales, S., Meeske, K., Guthrie, D., Houskamp, B. M., Pynoos, R., et al.(1994). Post-traumatic stress after childhood cancer II: A family model. Psycho-Oncology, 3, 313-319.[CrossRef]
- van Dongen-Melman, J. E. W. M., Pruyn, J. F. A., DeGroot, A., Koot, H. M., Hahlen, K., & Verhulst, F. C. (1995). Late psychosocial consequences for parents of children who survived cancer. Journal of Pediatric Psychology, 20, 567-586.[Abstract/Free Full Text]
Journal of Pediatric Oncology Nursing, Vol. 20, No. 4,
175-191 (2003)
DOI: 10.1177/1043454203254040
 CiteULike  Complore  Connotea  Del.icio.us  Digg  Reddit  Technorati  Twitter What's this?
This article has been cited by other articles:
|
|
|
|
 
A. L. Johns, A. A. Oland, E. R. Katz, O. J. Z. Sahler, M. A. Askins, R. W. Butler, and M. J. Dolgin
Qualitative Analysis of the Role of Culture in Coping Themes of Latina and European American Mothers of Children With Cancer
Journal of Pediatric Oncology Nursing,
May 1, 2009;
26(3):
167 - 175.
[Abstract]
[PDF]
|
|
|
|
|
|
|
A. Rivero-Vergne, R. Berrios, and I. Romero
Cultural Aspects of the Puerto Rican Cancer Experience: The Mother as the Main Protagonist
Qual Health Res,
June 1, 2008;
18(6):
811 - 820.
[Abstract]
[PDF]
|
|
|
|
|
|
|
J. B. Moore and M. F. Kordick
Sources of Conflict Between Families and Health Care Professionals
Journal of Pediatric Oncology Nursing,
March 1, 2006;
23(2):
82 - 91.
[Abstract]
[PDF]
|
|
|
|
|
|
|
J. N. Clarke, P. C. Fletcher, and M. A. Schneider
Mothers' Home Health Care Work When Their Children Have Cancer
Journal of Pediatric Oncology Nursing,
November 1, 2005;
22(6):
365 - 373.
[Abstract]
[PDF]
|
|
|
|
|
|
|
N. King, R. Berkhof, H. Mellema, J. Reichel, T. Joseph, K. Keenan, J. Parker, and K. Delgado
Osteogenic Sarcoma of the Sacral Spine: An Interdisciplinary Team Challenge
Journal of Pediatric Oncology Nursing,
July 1, 2005;
22(4):
194 - 202.
[Abstract]
[PDF]
|
|
|
|
|
|
|
Other articles noted: 25 Jul 03 to 7 Nov 03
Evid. Based Nurs.,
January 1, 2004;
7(1):
e1 - 1.
[Full Text]
[PDF]
|
|
|
|
|
