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

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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.

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References

  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.

  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, DC

  3. AIHW, Cancer Australia. Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. AIHW, Editor 2013: Canberra.

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

  15. Oeffinger KC, McCabe MS. Models for delivering survivorship care. J Clin Oncol. 2006;24(32):5117–24.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  CAS  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  22. Shapiro C et al. The LIVESTRONG Survivorship Center of Excellence Network. J Cancer Surviv. 2009;3(1):4–11.

    Article  PubMed  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  24. Bui LL et al. Interest and participation in support group programs among patients with colorectal cancer. Cancer Nurs. 2002;25(2):150–7.

    Article  PubMed  Google Scholar 

  25. Owen JE et al. Use of health-related and cancer-specific support groups among adult cancer survivors. Cancer. 2007;109(12):2580–9.

    Article  PubMed  Google Scholar 

  26. Kramer BJ. American Indian families and home care: macro social and cultural considerations. Alaska Med. 1995;37(4):139–41.

    CAS  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    PubMed  Google Scholar 

  29. AIWH, The health and welfare of Australia’s Aboriginal and Torres Strait Islander people: an overview 2011. , 2011: Canberra.

  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.

    Article  PubMed  Google Scholar 

  31. Braun KL et al. Supports and obstacles to cancer survival for Hawaii's native people. Cancer Pract. 2002;10(4):192–200.

    Article  PubMed  Google Scholar 

  32. Burhansstipanov L et al. An innovative path to improving cancer care in Indian country. Public Health Rep (1974-). 2001;116(5):424–33.

    Article  CAS  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Johnson SR et al. Cancer, employment, and American Indians: a participatory action research pilot study. Rehabil Couns Bull. 2011;54(3):175–80.

    Article  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    CAS  PubMed  Google Scholar 

  37. Eide P. Native Hawaiian women and the experience of breast cancer. Women Health. 2006;44(4):41–59.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  39. Pelusi J, Krebs LU. Understanding cancer-understanding the stories of life and living. J Cancer Educ. 2005;20(1 Suppl):12–6.

    Article  PubMed  Google Scholar 

  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. Burhansstipanov L et al. Native American breast cancer survivors' physical conditions and quality of life. Cancer. 2010;116(6):1560–71.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  43. Doorenbos AZ et al. Developing the native people for cancer control Telehealth network. Telemed J E Health. 2011;17(1):30–4.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Warson E. Healing pathways: art therapy for American Indian cancer survivors. J Cancer Educ. 2012;27(1):012–0324.

    Google Scholar 

  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).

  47. Long C et al. Assessing cultural life skills of American Indian youth. Child Youth Care Forum. 2006;35(4):289–304.

    Article  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  51. Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol. 2004;2(2):145–55.

    PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  53. Alfano CM, Rowland JH. Recovery issues in cancer survivorship: a new challenge for supportive care. Cancer J. 2006;12(5):432–43.

    Article  PubMed  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  55. Toseland RW, Blanchard CG, McCallion P. A problem solving intervention for caregivers of cancer patients. Soc Sci Med. 1995;40(4):517–28.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  58. Hampton JW. Cancer in Indian country–keynote address. Alaska Med. 1993;35(4):243–4. 272.

    CAS  PubMed  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  CAS  PubMed  Google Scholar 

  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. Campbell MK et al. Adult cancer survivorship care: experiences from the LIVESTRONG centers of excellence network. J Cancer Surviv. 2011;5(3):271–82.

    Article  PubMed  PubMed Central  Google Scholar 

  63. Braun KL et al. Cancer patient navigator tasks across the cancer care continuum. J Health Care Poor Underserved. 2012;23(1):398–413.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  Google Scholar 

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Acknowledgments

The authors would also like to acknowledge Lucy Hanlon for contribution to the article review and selection process and Brittany McGill for contribution to editing, and review, of this paper.

Financial disclosure

The authors have no relevant financial relationships to disclose.

Conflict of interest

The authors have no conflicts of interest to disclose.

Funding

The Behavioural Sciences Unit is supported by the Kids with Cancer Foundation. Claire Wakefield is supported by a Career Development Fellowship from the National Health and Medical Research Council of Australia (APP1067501) and an Early Career Development Fellowship form the Cancer Institute of NSW (ID 11/ECF/3-43). The Behavioural Sciences Unit is supported by the Kids with Cancer Foundation.

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Correspondence to Bridget M. Cavanagh.

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Cavanagh, B.M., Wakefield, C.E., McLoone, J.K. et al. Cancer survivorship services for indigenous peoples: where we stand, where to improve? A systematic review. J Cancer Surviv 10, 330–341 (2016). https://doi.org/10.1007/s11764-015-0479-2

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