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Part of the book series: Cancer Treatment and Research ((CTAR,volume 138))

Childhood cancer is a familial disease; no family member escapes unscathed from the impact of a young person’s cancer diagnosis, treatment, and follow-up procedures. As new treatment options unfold and more children survive, families are faced with multiple critical decisions at the time of diagnosis. This chapter will address one of the goals of oncofertility research – to improve the decision making competencies of family members confronting the news of a child’s cancer diagnosis plus the additional information that the treatment may or will affect the child’s future fertility. We will bring together key constructs and research from family systems theory and the shared decision making model in order to understand better how families whose children are newly diagnosed with cancer can make informed choices about the future fertility of their children while immediately confronting a potentially life-threatening illness.

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References

  1. American Cancer Society. Cancer facts and figures 2006. Atlanta: American Cancer Society, 2006.

    Google Scholar 

  2. Eiser C. Children with cancer: the quality of life. Mahwah, NJ: Lawrence Erlbaum Association, 2004.

    Google Scholar 

  3. Schover L. Sexuality and fertility after cancer. Hematology 2005;523–527.

    Google Scholar 

  4. Nieman CL, Kazer R, Brannigan RE, et al. Cancer survivors and infertility: a review of a new problem and novel answers. J Support Oncol 2006;4:171–178.

    PubMed  Google Scholar 

  5. Picton H. Fertility preservation methods and treatments for females. In: Balen R, Crawshaw M, editors. Sexuality and fertility issues in ill health and disability: from early adolescence to adulthood. London: Jessica Kingsley Publishers, 2006:85–98.

    Google Scholar 

  6. Goodwin T, Elizabeth Oosterhuis B, Kiernan M, et al. Attitudes and practices of pediatric oncology providers regarding fertility issues. Pediatr Blood Cancer 2007;48:80–85.

    Article  PubMed  Google Scholar 

  7. Galvin KM, Dickson FC, Marrow SR. Systems theory: patterns and (w) holes in family communication. In: Braithwaite D, Baxter L, editors. Engaging theories in family communication: multiple perspectives. Thousand Oaks, CA: Sage, 2006:309–324.

    Google Scholar 

  8. Satir V. The new peoplemaking. Mountain View, CA: Science and Behavior Books, 1988.

    Google Scholar 

  9. Galvin KM, Bylund C, Brommel B. Family communication: cohesion and change. 6th ed. Boston: Allyn & Bacon; 2006.

    Google Scholar 

  10. Kieren D, Maguirfe T, Hurblut N. A marker method to test a phasing hypothesis in family problem-solving interaction. J Marriage Family 1996;58:442–455.

    Article  Google Scholar 

  11. Makoul G, Clayman ML. An integrative model of shared decision making in medical encounters. Patient Educ Couns 2006;60:301–312.

    Article  PubMed  Google Scholar 

  12. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making health care decisions. The ethical and legal implications of informed consent in the patient–practitioner relationship. Washington, DC, 1982.

    Google Scholar 

  13. Towle A. Physician and patient communication skills: competencies for informed shared decision making. Vancouver, Canada: University of British Columbia, 1997.

    Google Scholar 

  14. Elwyn G, Edwards A, Wensing M, et al. Shared decision making observed in clinical practice: visual displays of communication sequence and patterns. J Eval Clin Pract 2001;7:211–221.

    Article  PubMed  CAS  Google Scholar 

  15. Elwyn G, Edwards A, Wensing M, et al. Shared decision making: developing the OPTION scale for measuring patient involvement. Qual Saf Health Care 2003;12:93–99.

    Article  PubMed  CAS  Google Scholar 

  16. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Soc Sci Med 1997;44:681–692.

    Article  PubMed  CAS  Google Scholar 

  17. Charles C, Whelan T, Gafni A. What do we mean by partnership in making decisions about treatment? BMJ 1999;319:780–782.

    PubMed  CAS  Google Scholar 

  18. Lee KJ, Havens PL, Sato TT, et al. Assent for treatment: clinician knowledge, attitudes, and practice. Pediatrics 2006;118:723–730.

    Article  PubMed  Google Scholar 

  19. Committee on Bioethics, American Academy of Pediatrics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics 1995;95:314–317.

    Google Scholar 

  20. Parsons SK, Saiki-Craighill S, Mayer DK, et al. Telling children and adolescents about their cancer diagnosis: cross-cultural comparisons between pediatric oncologists in the US and Japan. Psycho-oncology 2007;16:60–68.

    Article  PubMed  Google Scholar 

  21. Merenstein D, Diener-West M, Krist A, et al. An assessment of the shared-decision model in parents of children with acute otitis media. Pediatrics 2005;116:1267–1275.

    Article  PubMed  Google Scholar 

  22. Blanchard CG, Labrecque MS, Ruckdeschel JC, et al. Information and decision-making preferences of hospitalized adult cancer patients. Soc Sci Med 1988;27:1139–1145.

    Article  PubMed  CAS  Google Scholar 

  23. Cassileth BR, Zupkis RV, Sutton-Smith K, et al. Information and participation preferences among cancer patients. Ann Intern Med 1980;92:832–836.

    PubMed  CAS  Google Scholar 

  24. Henman MJ, Butow PN, Brown RF, et al. Lay constructions of decision-making in cancer. Psycho-oncology 2002;11:295–306.

    Article  PubMed  CAS  Google Scholar 

  25. Stewart DE, Wong F, Cheung AM, et al. Information needs and decisional preferences among women with ovarian cancer. Gynecol Oncol 2000;77:357–361.

    Article  PubMed  CAS  Google Scholar 

  26. Barnett MM. Does it hurt to know the worst?—psychological morbidity, information preferences and understanding of prognosis in patients with advanced cancer. Psycho-oncology 2006;15:44–55.

    Article  PubMed  Google Scholar 

  27. Ziebland S, Evans J, McPherson A. The choice is yours? How women with ovarian cancer make sense of treatment choices. Patient Educ Couns 2006;62:361–367.

    Article  PubMed  Google Scholar 

  28. Arora NK. Interacting with cancer patients: the significance of physicians’ communication behavior. Soc Sci Med 2003;57:791–806.

    Article  PubMed  Google Scholar 

  29. Canada AL, Schover LR. Research promoting better patient education on reproductive health after cancer. J Natl Cancer Inst Monogr 2005:98–100.

    Google Scholar 

  30. Balen R, Fraser C, Fielding D. Children and young people’s understanding of infertility. In: Balen R, Crawshaw M, editors. Sexuality and fertility issues in ill health and disability: from early adolescence to adulthood. London: Jessica Kingsley Publishers, 2006:49–64.

    Google Scholar 

  31. Fraser C, Balen R, Fielding D. The views of the next generation: an exploration of priorities for adulthood and the meaning of parenthood amongst 10–16-year-olds. In: Balen R, Crawshaw M, editors. Sexuality and fertility issues in ill health and disability: from early adolescence to adulthood. London: Jessica Kingsley Publishers, 2006:33–48.

    Google Scholar 

  32. Burns KC, Boudreau C, Panepinto JA. Attitudes regarding fertility preservation in female adolescent cancer patients. J Pediatr Hematol Oncol 2006;28:350–354.

    Article  PubMed  Google Scholar 

  33. McCabe MA. Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol 1996;21:505–516.

    Article  PubMed  CAS  Google Scholar 

  34. Crawshaw M, Sloper P. A qualitative study of the experiences of teenagers and young adults when faced with possible or actual fertility impairment following cancer treatment. 2006. Available at: http://www.york.ac.uk/inst/spru/pubs/pdf/fertility.pdf. Accessed December 28, 2006.

  35. Schover LR. Sexuality and fertility after cancer. Hematology Am Soc Hematol Educ Program 2005;523–527.

    Google Scholar 

  36. Schover LR. Psychosocial aspects of infertility and decisions about reproduction in young cancer survivors: a review. Med Pediatr Oncol 1999;33:53–59.

    Article  PubMed  CAS  Google Scholar 

  37. Schover LR, Brey K, Lichtin A, et al. Knowledge and experience regarding cancer, infertility, and sperm banking in younger male survivors. J Clin Oncol 2002;20:1880–1889.

    Article  PubMed  Google Scholar 

  38. Chen WY, Manson JE. Premature ovarian failure in cancer survivors: new insights, looming concerns. J Natl Cancer Inst 2006;98:880–881.

    Article  PubMed  Google Scholar 

  39. Partridge AH, Gelber S, Peppercorn J, et al. Web-based survey of fertility issues in young women with breast cancer. J Clin Oncol 2004;22:4174–4183.

    Article  PubMed  Google Scholar 

  40. Duffy CM, Allen SM, Clark MA. Discussions regarding reproductive health for young women with breast cancer undergoing chemotherapy. J Clin Oncol 2005;23:766–773.

    Article  PubMed  Google Scholar 

  41. Thewes B, Meiser B, Rickard J, et al. The fertility- and menopause-related information needs of younger women with a diagnosis of breast cancer: a qualitative study. Psycho-oncology 2003;12:500–511.

    Article  PubMed  Google Scholar 

  42. Maddock J. Healthy family sexuality: positive principles for educators and clinicians. Family Relations. 1989;38:130–136.

    Article  Google Scholar 

  43. Warren C. Communicating about sex with parents and partners. In: Galvin KM, Cooper P, editors. Making connections: readings in relational communication. 3rd ed. Los Angeles: Roxbury, 2003:317–324.

    Google Scholar 

  44. Jaccard J, Dittust P, Gordon V. Parent-adolescent communication about premarital sex: factors associated with the extent of communication. J Adoles Res 2000;15:187–208.

    Article  Google Scholar 

  45. Wilson P. 1994: forming a partnership between parents and sexuality educators: reflections of a parent advocate. SIECUS Report. 2004;32:6–8.

    Google Scholar 

  46. Stodghill II R. Where’d you learn that? In: Davidson J Sr, Moore NB, editors. Speaking of sexuality. 2nd ed. Los Angeles: Roxbury, 2005:370–374.

    Google Scholar 

  47. Ford S, Fallowfield L, Lewis S. Doctor–patient interactions in oncology. Soc Sci Med 1996;42:1511–1519.

    Article  PubMed  CAS  Google Scholar 

  48. van Dulmen AM, Verhaak PF, Bilo HJ. Shifts in doctor-patient communication during a series of outpatient consultations in non-insulin-dependent diabetes mellitus. Patient Educ Couns 1997;30:227–237.

    Article  PubMed  Google Scholar 

  49. Graugaard PK, Holgersen K, Eide H, et al. Changes in physician–patient communication from initial to return visits: a prospective study in a haematology outpatient clinic. Patient Educ Couns 2005;57:22–29.

    Article  PubMed  Google Scholar 

  50. Arora NK, Ayanian JZ, Guadagnoli E. Examining the relationship of patients’ attitudes and beliefs with their self-reported level of participation in medical decision-making. Med Care 2005;43:865–872.

    Article  PubMed  Google Scholar 

  51. Mallinger JB, Shields CG, Griggs JJ, et al. Stability of decisional role preference over the course of cancer therapy. Psycho-oncology 2006;4:297–305.

    Article  Google Scholar 

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Clayman, M.L., Galvin, K.M., Arntson, P. (2007). Shared Decision Making: Fertility and Pediatric Cancers. In: Woodruff, T.K., Snyder, K.A. (eds) Oncofertility Fertility Preservation for Cancer Survivors. Cancer Treatment and Research, vol 138. Springer, Boston, MA. https://doi.org/10.1007/978-0-387-72293-1_11

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  • DOI: https://doi.org/10.1007/978-0-387-72293-1_11

  • Publisher Name: Springer, Boston, MA

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  • Online ISBN: 978-0-387-72293-1

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