The study was designed to determine the questions that family members of recently diagnosed early-stage prostate cancer patients want addressed and to compare their information priorities with the patient’s priorities. Surveys were distributed to families of 38 patients who had also been surveyed. Respondents judged the importance of each of 93 questions (essential/desired/no opinion/avoid). Twenty-two (58%) family members responded. Most respondents rated most questions as essential (mean: 51 of 93 questions); however, overall, agreement on question ratings was poor (mean agreement: 42.5%, kappa: 0.19). Agreement between a patient and his family member was only slightly better (mean: 56.4%). A core set of 29 questions was identified that most (> 67%) respondents agreed were essential. Although a core set of important questions could be identified, that core would not cover most family members’ essential information needs. The information priorities of the patient often differ from those of his family.
Get full access to this article
View all access options for this article.
References
1.
Benson, J.
, & Britten, N. (1996). Respecting the autonomy of cancer patients when talking with their families: Qualitative analysis of semistructured interviews with patients. British Medical Journal, 313, 729-731.
2.
Blustein, J.
(1993). The family in medical decision making. Hastings Center Report, 23, 6-13.
3.
Canadian Cancer Society
. (1992). Final report on the needs of people living with cancer across Canada. Toronto, Canada: Author.
4.
Cassileth, B. R.
, Lusk, E. J., Strouse, T. B., Miller, D. S., Brown, L. L., & Cross, P. A. (1985). A psychological analysis of cancer patients and their next-of-kin. Cancer, 55, 72-76.
5.
Catalona, W. J.
, Smith, D. S., Ratcliff, T. L., & Basler, J. W. (1993). Detection of organ-confined prostate cancer is increasing through prostate-specific antigen-based screening. Journal of the American Medical Association, 270, 948-954.
6.
Chammas, S. (1989). Informed consent: An empirical approach to the definition of material information in ovarian cancer patients. Unpublished master’s thesis, Queen’s University, Kingston, Canada.
7.
Cooper, E. T.
(1984). A pilot study on the effects of the diagnosis of lung cancer on family relationships. Cancer Nursing, 7, 301-308.
8.
Degner, L. F.
, & Sloan, J. A. (1992). Decision making during serious illness: What role do patients really want to play?Journal of Clinical Epidemiology, 45, 941-950.
9.
Derdiarian, A. K.
(1989). Effects of information on recently diagnosed cancer patients’ and spouses’ satisfaction with care. Cancer Nursing, 12, 285-292.
10.
Doherty, W. J.
, Schrott, H. G., Metcalf, L., & Iasiello-Vailas, L. (1983). Effect of spouse support and health beliefs on medication adherence. Journal of Family Practice, 17, 837-841.
11.
Dunn, S. M.
, Butow, P. N., Tattersall, M.H.N., Jones, Q. J., Sheldon, J. S., Taylor, J. J., & Sumich, M. D. (1993). General information tapes inhibit recall of the cancer consultation. Journal of Clinical Oncology, 11, 2279-2285.
12.
Ell, K.
, Nishimoto, R., Mantell, J., & Hamovitch, M. (1988). Longitudinal analysis of psychological adaptation among family members of patients with cancer. Journal of Psychomatic Research, 32, 429-438.
13.
Faden, R. R.
, & Beauchamp, T. L. (1986). A history and theory of informed consent. New York: Oxford University Press.
14.
Feldman-Stewart, D.
, Brundage, M. D., Hayter, C., Davidson, J. R., Groome, P., & Nickel, J. C. (1997). What the prostate patient should know: Variation in urologists’ opinions. Canadian Journal of Urology, 4, 438-444.
15.
Feldman-Stewart, D.
, Brundage, M.D., Hayter, C., Groome, P.A., Nickel, J.C., Downes, H., & Mackillop, W. (1998). What prostate cancer patients should know: Variation in professionals’ opinions. Radiotherapy and Oncology, 49, 111-123.
16.
Feldman-Stewart, D.
, Brundage, M. D., Hayter, C., Groome, P., Nickel, J. C., Downes, H., & Mackillop, W. J. (2000). What questions do patients with curable prostate cancer want answered?Medical Decision Making, 20, 7-19.
17.
Feldman-Stewart, D.
, Chammas, S., Hayter, C., Pater, J., & Mackillop, W. J. (1996). An empirical approach to informed consent in ovarian cancer. Journal of Clinical Epidemiology, 49, 1259-1269.
18.
Fleiss, J. L.
(1981). Statistical methods for rates and proportions (2nd ed.). New York: John Wiley.
19.
Fleming, C.
, Wasson, J. H., Albertsen, P. C., Barry, M. J., & Wennberg, J. E. (1993). A decision analysis of alternative treatment strategies for clinically localized prostate cancer. Journal of the American Medical Association, 269, 2650-2658.
20.
Gates, C. C.
(1988). The “most-significant-other” in the care of the breast cancer patient. CA-A Cancer Journal for Clinicians, 38, 146-153.
21.
Gotay, C.
(1984). The experience of cancer during early and advanced stages: The views of patients and their mates. Social Science and Medicine, 18, 605-613.
22.
Henneman, E. A.
, & Cardin, S. (1992). Need for information: Interventions for practice. Family Issues in Critical Care, 4, 615-621.
23.
Henneman, E. A.
, McKenzie, J. B., & Dewa, C. S. (1992). An evaluation of interventions for meeting the information needs of families of critically ill patients. American Journal of Critical Care, 1, 85-93.
24.
Hermann, J. F.
, Wojtkowiak, S. L., Houts, P. S., & Kahn, S. B. (1988). Helping people cope: A guide for families facing cancer. Pittsburgh: Pennsylvania Department of Health.
25.
Houts, P. S.
, Rusenas, I., Simmonds, M. A., & Hufford, D. L. (1991). Information needs of families of cancer patients: A literature review and recommendations. Journal of Cancer Education, 6, 255-261.
26.
Lewandowski, W.
, & Jones, S. L. (1988). The family with cancer. Nursing interventions throughout the course of living with cancer. Cancer Nursing, 11, 313-321.
27.
Meissner, H. I.
, Anderson, D. M., & Odenkirchen, J. C. (1990). Meeting information needs of significant others: Use of the Cancer Information Service. Patient Education and Counseling, 15, 171-179.
28.
National Cancer Institute of Canada
. (1999). Canadian cancer statistics 1999. Toronto, Canada: Author.
29.
Northouse, L. L.
(1988). Social support in patients’ and husbands’ adjustment to breast cancer. Nursing Research, 37, 91-95.
30.
Northouse, P. G.
, & Northouse, L. L. (1988). Communication and cancer: Issues confronting patients, health professionals, and family members. Journal of Psychosocial Oncology, 5, 17-46.
31.
Tringali, C. A.
(1986). The needs of family members of cancer patients. Oncology Nursing Forum, 13, 65-70.
32.
Wagner, N.
(1995). Comprehensive patient-family care: Fact or fiction. Nursing Ethics, 2, 143-148.
33.
Wright, K.
, & Dyck, S. (1984). Expressed concerns of adult cancer patients’ family members. Cancer Nursing, 7, 371-374.
