Journal of Cancer Survivorship

, Volume 10, Issue 2, pp 330–341 | Cite as

Cancer survivorship services for indigenous peoples: where we stand, where to improve? A systematic review

  • Bridget M. Cavanagh
  • Claire E. Wakefield
  • Jordana K. McLoone
  • Gail Garvey
  • Richard J. Cohn
Review

Abstract

Objective

There are few support programs with evidence-based practices which address the needs of cancer survivors from indigenous populations. This systematic review analysed the experiences and current support services for cancer survivors from indigenous populations following the cessation of cancer treatment.

Methods

The data sourced for this article was identified from a systematic search of five databases (MEDLINE, MEDLINE In-Process, PyscINFO, CINAHL, and EMBASE). Studies were selected if they described the experiences of indigenous cancer survivors, their families, and/or clinicians primarily responsible for their care. In total 208 unique abstracts were screened, from which 17 studies were identified as having fulfilled all selection criteria.

Results

Of the 17 articles reviewed, 12 described qualitative data and 5 provided quantitative data. Common themes identified included the importance of family support throughout the survivorship period, the negative effect of community stigmatization, fatalistic attitudes towards cancer, and the importance of spirituality in coping with, and understanding, the cancer experience. Potential barriers to accessing care included distance and difficulties revisiting the survivor’s cancer experience due to an associated fear of cancer recurrence.

Conclusions

Indigenous cancer survivors would benefit from survivorship programs more specifically tailored to their individual circumstances, such as personalized spiritual care, facilitation of increased involvement of family members, and connection to other indigenous cancer survivors.

Implications for Cancer Survivors

The results from this review indicate that there is a need for survivorship care to be shaped specifically for the needs of indigenous cancer survivors.

Keywords

Indigenous Cancer Oncology Survivorship 

References

  1. 1.
    Australian Bureau of Statistics, The health and welfare of Australia's Aboriginal and Torres Strait Islander peoples 2005. A.B.o. Statistics, Editor 2005: Canberra.Google Scholar
  2. 2.
    Haynes, M. and B. Smedley, The unequal burden of cancer. An assessment of NIH research and programs for ethnic minorities and the medically underserved. N.A. Press, Editor 1999, Institute of Medicine: Washington, DCGoogle Scholar
  3. 3.
    AIHW, Cancer Australia. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. AIHW, Editor 2013: Canberra.Google Scholar
  4. 4.
    Cobb N, Espey D, King J. Health behaviors and risk factors among American Indians and Alaska Natives, 2000–2010. Am J Public Health. 2014;104(3):22.CrossRefGoogle Scholar
  5. 5.
    White MC et al. Disparities in cancer mortality and incidence among American Indians and Alaska Natives in the United States. Am J Public Health. 2014;104(S3):S377–87.CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Perdue DG et al. Geographic variation in colorectal cancer incidence and mortality, age of onset, and stage at diagnosis among American Indian and Alaska Native people, 1990–2009. Am J Public Health. 2014;104(S3):S404–14.CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Singh SD et al. Ovarian and uterine cancer incidence and mortality in American Indian and Alaska Native women, United States, 1999–2009. Am J Public Health. 2014;104(S3):S423–31.CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Plescia M et al. Lung cancer deaths among American Indians and Alaska Natives, 1990–2009. Am J Public Health. 2014;104(S3):S388–95.CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    White A et al. Breast cancer mortality among American Indian and Alaska Native women, 1990–2009. Am J Public Health. 2014;104(S3):S432–8.CrossRefPubMedPubMedCentralGoogle Scholar
  10. 10.
    Watson M et al. Cervical cancer incidence and mortality among American Indian and Alaska Native women, 1999–2009. Am J Public Health. 2014;104(S3):S415–22.CrossRefPubMedPubMedCentralGoogle Scholar
  11. 11.
    Hoffman RM et al. Prostate cancer deaths and incident cases among American Indian/Alaska Native men, 1999–2009. Am J Public Health. 2014;104(S3):S439–45.CrossRefPubMedPubMedCentralGoogle Scholar
  12. 12.
    Li J et al. Kidney cancer incidence and mortality among American Indians and Alaska Natives in the United States, 1990–2009. Am J Public Health. 2014;104(S3):S396–403.CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Wiggins CL et al. Gastric cancer among American Indians and Alaska Natives in the United States, 1999–2004. Cancer. 2008;113(S5):1225–33.CrossRefPubMedGoogle Scholar
  14. 14.
    Guadagnolo, B.A., et al., Assessing cancer stage and screening disparities among Native American cancer patients. Public Health Reports (Washington, D.C.: 1974), 2009. 124(1): p. 79–89.Google Scholar
  15. 15.
    Oeffinger KC, McCabe MS. Models for delivering survivorship care. J Clin Oncol. 2006;24(32):5117–24.CrossRefPubMedGoogle Scholar
  16. 16.
    Cox A, Faithfull S. ‘They’re survivors physically but we want them to survive mentally as well’: health care professionals’ views on providing potential late effect information. Support Care Cancer. 2013;21(9):2491–7.CrossRefPubMedGoogle Scholar
  17. 17.
    Herman D et al. Obesity and cardiovascular risk factors in younger breast cancer survivors: the Cancer and Menopause Study (CAMS). Breast Cancer Res Treat. 2005;93(1):13–23.CrossRefPubMedGoogle Scholar
  18. 18.
    Jones LW et al. Cardiopulmonary function and age-related decline across the breast cancer survivorship continuum. J Clin Oncol. 2012;30(20):2530–7.CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Rugo HS, Ahles T. The impact of adjuvant therapy for breast cancer on cognitive function: current evidence and directions for research. Semin Oncol. 2003;30(6):749–62.CrossRefPubMedGoogle Scholar
  20. 20.
    Maher EJ, Makin W. Life after cancer treatment–a spectrum of chronic survivorship conditions. Clin Oncol (R Coll Radiol). 2007;19(10):743–5.CrossRefGoogle Scholar
  21. 21.
    Morgan MAPA. Cancer survivorship: history, quality-of-life issues, and the evolving multidisciplinary approach to implementation of cancer survivorship care plans. Oncol Nurs Forum. 2009;36(4):429–36.CrossRefPubMedGoogle Scholar
  22. 22.
    Shapiro C et al. The LIVESTRONG Survivorship Center of Excellence Network. J Cancer Surviv. 2009;3(1):4–11.CrossRefPubMedGoogle Scholar
  23. 23.
    Hollen P, Hobbie W. Establishing comprehensive specialty follow-up clinics for long-term survivors of cancer. Providing systematic physiological and psychosocial support. Support Care Cancer. 1995;3(1):40–4.CrossRefPubMedGoogle Scholar
  24. 24.
    Bui LL et al. Interest and participation in support group programs among patients with colorectal cancer. Cancer Nurs. 2002;25(2):150–7.CrossRefPubMedGoogle Scholar
  25. 25.
    Owen JE et al. Use of health-related and cancer-specific support groups among adult cancer survivors. Cancer. 2007;109(12):2580–9.CrossRefPubMedGoogle Scholar
  26. 26.
    Kramer BJ. American Indian families and home care: macro social and cultural considerations. Alaska Med. 1995;37(4):139–41.PubMedGoogle Scholar
  27. 27.
    Shahid S et al. 'Nowhere to room … nobody told them': logistical and cultural impediments to Aboriginal peoples' participation in cancer treatment. Aust Health Rev. 2011;35(2):235–41.CrossRefPubMedGoogle Scholar
  28. 28.
    Shahid S, Finn L, Thompson S. Barriers to participation of Aboriginal people in cancer care: communication in the hospital setting. Med J Aust. 2009;190(10):574–9.PubMedGoogle Scholar
  29. 29.
    AIWH, The health and welfare of Australia’s Aboriginal and Torres Strait Islander people: an overview 2011. , 2011: Canberra.Google Scholar
  30. 30.
    Jackson C, Cheater FM, Reid I. A systematic review of decision support needs of parents making child health decisions. Health Expect. 2008;11(3):232–51.CrossRefPubMedGoogle Scholar
  31. 31.
    Braun KL et al. Supports and obstacles to cancer survival for Hawaii's native people. Cancer Pract. 2002;10(4):192–200.CrossRefPubMedGoogle Scholar
  32. 32.
    Burhansstipanov L et al. An innovative path to improving cancer care in Indian country. Public Health Rep (1974-). 2001;116(5):424–33.CrossRefGoogle Scholar
  33. 33.
    Hodge FS et al. “Weaving balance into life”: development and cultural adaptation of a cancer symptom management toolkit for Southwest American Indians. J Cancer Surviv. 2012;6(2):182–8.CrossRefPubMedPubMedCentralGoogle Scholar
  34. 34.
    Johnson SR et al. Cancer, employment, and American Indians: a participatory action research pilot study. Rehabil Couns Bull. 2011;54(3):175–80.CrossRefGoogle Scholar
  35. 35.
    Kaòpua LSI, Mitschke DB, Kloezeman KC. Coping with breast cancer at the nexus of religiosity and Hawaiian culture: perspectives of native Hawaiian survivors and family members. J Relig Spiritual Soc Work: Soc Thought. 2008;27(3):275–95.CrossRefGoogle Scholar
  36. 36.
    Santos L et al. ‘Imi Hale: establishing an inheritance for Native Hawaiians on cancer awareness, research and training. Pac Health Dialog. 2001;8(2):436–45.PubMedGoogle Scholar
  37. 37.
    Eide P. Native Hawaiian women and the experience of breast cancer. Women Health. 2006;44(4):41–59.CrossRefPubMedGoogle Scholar
  38. 38.
    Bauer JE et al. American Indian cancer survivors: exploring social network topology and perceived social supports. J Cancer Educ. 2005;20(1 Suppl):23–7.CrossRefPubMedGoogle Scholar
  39. 39.
    Pelusi J, Krebs LU. Understanding cancer-understanding the stories of life and living. J Cancer Educ. 2005;20(1 Suppl):12–6.CrossRefPubMedGoogle Scholar
  40. 40.
    Burhansstipanov L et al. Comparison of quality of life between native and non-native cancer survivors: native and non-native cancer survivors' QOL. J Cancer Educ. 2012;27(1):012–0318.Google Scholar
  41. 41.
    Burhansstipanov L et al. Native American breast cancer survivors' physical conditions and quality of life. Cancer. 2010;116(6):1560–71.CrossRefPubMedPubMedCentralGoogle Scholar
  42. 42.
    Braun KL et al. Building Native Hawaiian capacity in cancer research and programming. A legacy of 'Imi Hale. Cancer. 2006;107(8 Suppl):2082–90.CrossRefPubMedGoogle Scholar
  43. 43.
    Doorenbos AZ et al. Developing the native people for cancer control Telehealth network. Telemed J E Health. 2011;17(1):30–4.CrossRefPubMedPubMedCentralGoogle Scholar
  44. 44.
    Doorenbos AZ et al. Satisfaction with Telehealth for cancer support groups in rural American Indian and Alaska Native communities. Clin J Oncol Nurs. 2010;14(6):765–70.CrossRefPubMedPubMedCentralGoogle Scholar
  45. 45.
    Warson E. Healing pathways: art therapy for American Indian cancer survivors. J Cancer Educ. 2012;27(1):012–0324.Google Scholar
  46. 46.
    Tilburt, J.C., et al., Caring for Alaska Native prostate cancer survivors in primary care: a survey of Alaska Tribal Health System providers. Int J Circumpolar Health, 2014. 73(23637).Google Scholar
  47. 47.
    Long C et al. Assessing cultural life skills of American Indian youth. Child Youth Care Forum. 2006;35(4):289–304.CrossRefGoogle Scholar
  48. 48.
    McLaughlin LA, Braun KL. Asian and Pacific Islander cultural values: considerations for health care decision making. Health Soc Work. 1998;23(2):116–26.CrossRefPubMedGoogle Scholar
  49. 49.
    Schwartz SH, Bilsky W. Toward a theory of the universal content and structure of values: extensions and cross-cultural replications. J Pers Soc Psychol. 1990;58(5):878–91.CrossRefGoogle Scholar
  50. 50.
    Bloom JR, Spiegel D. The relationship of two dimensions of social support to the psychological well-being and social functioning of women with advanced breast cancer. Soc Sci Med. 1984;19(8):831–7.CrossRefPubMedGoogle Scholar
  51. 51.
    Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol. 2004;2(2):145–55.PubMedGoogle Scholar
  52. 52.
    Kazak AE et al. Surviving Cancer Competently Intervention Program (SCCIP): a cognitive-behavioral and family therapy intervention for adolescent survivors of childhood cancer and their families. Fam Process. 1999;38(2):176–91.CrossRefGoogle Scholar
  53. 53.
    Alfano CM, Rowland JH. Recovery issues in cancer survivorship: a new challenge for supportive care. Cancer J. 2006;12(5):432–43.CrossRefPubMedGoogle Scholar
  54. 54.
    Bultz BD et al. A randomized controlled trial of a brief psychoeducational support group for partners of early stage breast cancer patients. Psycho-Oncology. 2000;9(4):303–13.CrossRefPubMedGoogle Scholar
  55. 55.
    Toseland RW, Blanchard CG, McCallion P. A problem solving intervention for caregivers of cancer patients. Soc Sci Med. 1995;40(4):517–28.CrossRefPubMedGoogle Scholar
  56. 56.
    Fernandez ME et al. Evaluation of ENCOREplus: a community-based breast and cervical cancer screening program. Am J Prev Med. 1999;16(3):35–49.CrossRefPubMedGoogle Scholar
  57. 57.
    Chilton JA et al. Circle of Sisters: raising awareness of Native American women to breast cancer. J Health Care Poor Underserved. 2013;24(3):1167–79.CrossRefPubMedGoogle Scholar
  58. 58.
    Hampton JW. Cancer in Indian country–keynote address. Alaska Med. 1993;35(4):243–4. 272.PubMedGoogle Scholar
  59. 59.
    Thewes B et al. Current approaches to managing fear of cancer recurrence; a descriptive survey of psychosocial and clinical health professionals. Psychooncology. 2014;23(4):390–6.CrossRefPubMedGoogle Scholar
  60. 60.
    Sanchez TR, Plawecki JA, Plawecki HM. The delivery of culturally sensitive health care to Native Americans. J Holist Nurs. 1996;14(4):295–307.CrossRefPubMedGoogle Scholar
  61. 61.
    Division of Cancer Prevention and Control. The National Action Plan for Cancer Survivorship. Cancer Prevention and Control 2013 [cited 2014 11/04]; http://www.cdc.gov/cancer/survivorship/pdf/plan.pdf
  62. 62.
    Campbell MK et al. Adult cancer survivorship care: experiences from the LIVESTRONG centers of excellence network. J Cancer Surviv. 2011;5(3):271–82.CrossRefPubMedPubMedCentralGoogle Scholar
  63. 63.
    Braun KL et al. Cancer patient navigator tasks across the cancer care continuum. J Health Care Poor Underserved. 2012;23(1):398–413.CrossRefPubMedPubMedCentralGoogle Scholar
  64. 64.
    Matsuno RK et al. Complementary and alternative medicine use and breast cancer prognosis: a pooled analysis of four population-based studies of breast cancer survivors. J Womens Health. 2012;21(12):1252–8.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  • Bridget M. Cavanagh
    • 1
    • 2
  • Claire E. Wakefield
    • 1
    • 2
  • Jordana K. McLoone
    • 1
    • 2
  • Gail Garvey
    • 3
  • Richard J. Cohn
    • 1
    • 2
  1. 1.Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW MedicineUniversity of New South WalesKensingtonAustralia
  2. 2.Kids Cancer CentreSydney Children’s HospitalRandwickAustralia
  3. 3.Menzies School of Health Research, Charles Darwin UniversityDarwin, Northern TerritoryAustralia

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