Skip to main content
Public Health Reports logoLink to Public Health Reports
. 2001 Sep-Oct;116(5):424–433. doi: 10.1093/phr/116.5.424

An innovative path to improving cancer care in Indian country.

L Burhansstipanov 1, A Gilbert 1, K LaMarca 1, L U Krebs 1
PMCID: PMC1497357  PMID: 12042607

Abstract

The Native American Cancer Survivors' Support Network is an innovative public health program designed to improve survival from cancer and the quality of life after a cancer diagnosis for American Indians, Alaska Natives, and Canadian Aboriginal patients and their loved ones. The Network, initiated in 1999, now has more than 300 survivors enrolled as members. This article briefly describes the process that led to its formation and preliminary findings, primarily for breast cancer survivors, of ongoing qualitative and quantitative research. Network data show patterns of cancer care that are partially responsible for poor survivorship outcomes.

Full Text

The Full Text of this article is available as a PDF (87.9 KB).

Selected References

These references are in PubMed. This may not be the complete list of references from this article.

  1. Burhansstipanov L., Hollow W. Native American cultural aspects of oncology nursing care. Semin Oncol Nurs. 2001 Aug;17(3):206–219. doi: 10.1053/sonu.2001.25950. [DOI] [PubMed] [Google Scholar]
  2. Cobb N., Paisano R. E. Patterns of cancer mortality among Native Americans. Cancer. 1998 Dec 1;83(11):2377–2383. doi: 10.1002/(sici)1097-0142(19981201)83:11<2377::aid-cncr18>3.0.co;2-z. [DOI] [PubMed] [Google Scholar]
  3. Cornwall A., Jewkes R. What is participatory research? Soc Sci Med. 1995 Dec;41(12):1667–1676. doi: 10.1016/0277-9536(95)00127-s. [DOI] [PubMed] [Google Scholar]
  4. Dignan M., Michielutte R., Sharp P., Bahnson J., Young L., Beal P. The role of focus groups in health education for cervical cancer among minority women. J Community Health. 1990 Dec;15(6):369–375. doi: 10.1007/BF01324299. [DOI] [PubMed] [Google Scholar]
  5. Dow K. H. A review of late effects of cancer in women. Semin Oncol Nurs. 1995 May;11(2):128–136. doi: 10.1016/s0749-2081(05)80020-8. [DOI] [PubMed] [Google Scholar]
  6. Dow K. H. The enduring seasons in survival. Oncol Nurs Forum. 1990 Jul-Aug;17(4):511–516. [PubMed] [Google Scholar]
  7. Eick-Swigart J. What cancer means to me. Semin Oncol Nurs. 1995 Feb;11(1):41–42. doi: 10.1016/s0749-2081(95)80041-7. [DOI] [PubMed] [Google Scholar]
  8. Ferrans C. E. Quality of life through the eyes of survivors of breast cancer. Oncol Nurs Forum. 1994 Nov-Dec;21(10):1645–1651. [PubMed] [Google Scholar]
  9. Ferrell B. R., Dow K. H., Leigh S., Ly J., Gulasekaram P. Quality of life in long-term cancer survivors. Oncol Nurs Forum. 1995 Jul;22(6):915–922. [PubMed] [Google Scholar]
  10. Fife B. L., Taylor E. J. The experience of cancer and its meaning. Introduction. Semin Oncol Nurs. 1995 Feb;11(1):1–2. doi: 10.1016/s0749-2081(95)80035-2. [DOI] [PubMed] [Google Scholar]
  11. Fife B. L. The conceptualization of meaning in illness. Soc Sci Med. 1994 Jan;38(2):309–316. doi: 10.1016/0277-9536(94)90400-6. [DOI] [PubMed] [Google Scholar]
  12. Foster M. W., Sharp R. R., Freeman W. L., Chino M., Bernsten D., Carter T. H. The role of community review in evaluating the risks of human genetic variation research. Am J Hum Genet. 1999 Jun;64(6):1719–1727. doi: 10.1086/302415. [DOI] [PMC free article] [PubMed] [Google Scholar]
  13. Funch D. P., Marshall J. The role of stress, social support and age in survival from breast cancer. J Psychosom Res. 1983;27(1):77–83. doi: 10.1016/0022-3999(83)90112-5. [DOI] [PubMed] [Google Scholar]
  14. Gilliland F. D., Hunt W. C., Key C. R. Trends in the survival of American Indian, Hispanic, and Non-Hispanic white cancer patients in New Mexico and Arizona, 1969-1994. Cancer. 1998 May 1;82(9):1769–1783. doi: 10.1002/(sici)1097-0142(19980501)82:9<1784::aid-cncr26>3.0.co;2-#. [DOI] [PubMed] [Google Scholar]
  15. Herbert C. P. Community-based research as a tool for empowerment: the Haida Gwaii Diabetes Project example. Can J Public Health. 1996 Mar-Apr;87(2):109–112. [PubMed] [Google Scholar]
  16. Holland J. C. Cancer's psychological challenges. Sci Am. 1996 Sep;275(3):158–161. doi: 10.1038/scientificamerican0996-158. [DOI] [PubMed] [Google Scholar]
  17. Kagawa-Singer M. Socioeconomic and cultural influences on cancer care of women. Semin Oncol Nurs. 1995 May;11(2):109–119. doi: 10.1016/s0749-2081(05)80018-x. [DOI] [PubMed] [Google Scholar]
  18. Kramer B. J. American Indian families and home care: macro social and cultural considerations. Alaska Med. 1995 Oct-Dec;37(4):139–141. [PubMed] [Google Scholar]
  19. Lanier A. P., Bulkow L. R., Ireland B. Cancer in Alaskan Indians, Eskimos, and Aleuts, 1969-83: implications for etiology and control. Public Health Rep. 1989 Nov-Dec;104(6):658–664. [PMC free article] [PubMed] [Google Scholar]
  20. Leigh S. Myths, monsters, and magic: personal perspectives and professional challenges of survival. Oncol Nurs Forum. 1992 Nov-Dec;19(10):1475–1480. [PubMed] [Google Scholar]
  21. Macaulay A. C., Delormier T., McComber A. M., Cross E. J., Potvin L. P., Paradis G., Kirby R. L., Saad-Haddad C., Desrosiers S. Participatory research with native community of Kahnawake creates innovative Code of Research Ethics. Can J Public Health. 1998 Mar-Apr;89(2):105–108. doi: 10.1007/BF03404399. [DOI] [PMC free article] [PubMed] [Google Scholar]
  22. Matsunaga D. S., Enos R., Gotay C. C., Banner R. O., DeCambra H., Hammond O. W., Hedlund N., Ilaban E. K., Issell B. F., Tsark J. A. Participatory research in a Native Hawaiian community. The Wai'anae Cancer Research Project. Cancer. 1996 Oct 1;78(7 Suppl):1582–1586. [PubMed] [Google Scholar]
  23. McCaskill-Stevens W., Pinto H., Marcus A. C., Comis R., Morgan R., Plomer K., Schoentgen S. Recruiting minority cancer patients into cancer clinical trials: a pilot project involving the Eastern Cooperative Oncology Group and the National Medical Association. J Clin Oncol. 1999 Mar;17(3):1029–1039. doi: 10.1200/JCO.1999.17.3.1029. [DOI] [PubMed] [Google Scholar]
  24. O'Connor A. P., Wicker C. A., Germino B. B. Understanding the cancer patient's search for meaning. Cancer Nurs. 1990 Jun;13(3):167–175. doi: 10.1097/00002820-199006000-00006. [DOI] [PubMed] [Google Scholar]
  25. Payne D. K., Sullivan M. D., Massie M. J. Women's psychological reactions to breast cancer. Semin Oncol. 1996 Feb;23(1 Suppl 2):89–97. [PubMed] [Google Scholar]
  26. Samet J. M., Key C. R., Hunt W. C., Goodwin J. S. Survival of American Indian and Hispanic cancer patients in New Mexico and Arizona, 1969-82. J Natl Cancer Inst. 1987 Sep;79(3):457–463. [PubMed] [Google Scholar]
  27. Schain W. S., d'Angelo T. M., Dunn M. E., Lichter A. S., Pierce L. J. Mastectomy versus conservative surgery and radiation therapy. Psychosocial consequences. Cancer. 1994 Feb 15;73(4):1221–1228. doi: 10.1002/1097-0142(19940215)73:4<1221::aid-cncr2820730416>3.0.co;2-s. [DOI] [PubMed] [Google Scholar]
  28. Shanfield S. B. On surviving cancer: psychological considerations. Compr Psychiatry. 1980 Mar-Apr;21(2):128–134. doi: 10.1016/0010-440x(80)90089-9. [DOI] [PubMed] [Google Scholar]
  29. Strickland C. J. Conducting focus groups cross-culturally: experiences with Pacific northwest Indian people. Public Health Nurs. 1999 Jun;16(3):190–197. doi: 10.1046/j.1525-1446.1999.00190.x. [DOI] [PubMed] [Google Scholar]
  30. Strickland C. J. The importance of qualitative research in addressing cultural relevance: experiences from research with Pacific Northwest Indian women. Health Care Women Int. 1999 Sep-Oct;20(5):517–525. doi: 10.1080/073993399245601. [DOI] [PubMed] [Google Scholar]
  31. Underwood S. M. Minorities, women, and clinical cancer research: the charge, promise, and challenge. Ann Epidemiol. 2000 Nov;10(8 Suppl):S3–12. doi: 10.1016/s1047-2797(00)00200-3. [DOI] [PubMed] [Google Scholar]
  32. Wallerstein N., Bernstein E. Introduction to community empowerment, participatory education, and health. Health Educ Q. 1994 Summer;21(2):141–148. doi: 10.1177/109019819402100202. [DOI] [PubMed] [Google Scholar]
  33. Wingo P. A., Ries L. A., Rosenberg H. M., Miller D. S., Edwards B. K. Cancer incidence and mortality, 1973-1995: a report card for the U.S. Cancer. 1998 Mar 15;82(6):1197–1207. doi: 10.1002/(sici)1097-0142(19980315)82:6<1197::aid-cncr26>3.0.co;2-0. [DOI] [PubMed] [Google Scholar]
  34. Woods N. F., Lewis F. M., Ellison E. S. Living with cancer. Family experiences. Cancer Nurs. 1989 Feb;12(1):28–33. [PubMed] [Google Scholar]
  35. Wyatt G., Kurtz M. E., Liken M. Breast cancer survivors: an exploration of quality of life issues. Cancer Nurs. 1993 Dec;16(6):440–448. [PubMed] [Google Scholar]

Articles from Public Health Reports are provided here courtesy of SAGE Publications

RESOURCES