Supportive Care in Cancer

, Volume 25, Issue 5, pp 1597–1605 | Cite as

Follow-up cancer care: perspectives of Aboriginal and Torres Strait Islander cancer survivors

  • J. A. Meiklejohn
  • G. Garvey
  • R. Bailie
  • E. Walpole
  • J. Adams
  • D. Williamson
  • J. Martin
  • C. M. Bernardes
  • B. Arley
  • B. Marcusson
  • P. C. Valery
Original Article



The purpose of this study was to explore Indigenous Australian cancer survivors’ perspectives of follow-up cancer care and management..


This is a qualitative study employing individual interviews with 21 Indigenous cancer survivors (13 females, 8 males) recruited from a rural primary health service and large tertiary hospital in Brisbane, Queensland. Yarning methods were used to conduct semi-structured interviews. Yarning is a culturally appropriate, informal conversational process emphasising the importance of storytelling.


Findings describe a range of ways in which follow-up cancer care is experienced with four major categories elucidated, namely: links to tertiary health services, links to primary health services, communication between tertiary and primary health services, and lost in transition. Both positive and negative experiences were described; however, the importance of timely and informative discharge information, continuity of care, good communication between tertiary and primary health services, and strong therapeutic relationships were salient issues raised by participants.


These findings highlight the importance of establishing strong therapeutic relationships between patients and tertiary and primary health professionals. Also important for survivorship is provision of discharge summaries or care plans at discharge for survivors and general practitioners as well as access to a range of allied health services. Alternative means for follow-up could be investigated for regional and rural survivors to facilitate convenient and cost-effective follow-up care. Finally, provision of responsive and flexible follow-up care to cater for the diverse range of needs and preferences of cancer survivors is required. A patient navigator available across the cancer continuum could go some way to addressing this.


Cancer Primary care Indigenous Follow-up Qualitative 


  1. 1.
    Australian Institute of Health and Welfare (2014) Cancer in Australia: an overview 2014. Cancer series no 90. Cat. no. CAN 88. AIHW, CanberraGoogle Scholar
  2. 2.
    Valery PC, Coory M, Stirling J (2006) Cancer diagnosis, treatment, and survival in Indigenous and non-Indigenous Australians: a matched cohort study. Lancet (North American edition) [HWWilson - GS] 367:1842Google Scholar
  3. 3.
    Condon JR, Armstrong BK, Barnes A, Cunningham J (2003) Cancer in Indigenous Australians: a review. Cancer Causes Control 14(2):109–121. doi:10.1023/A:1023064400004
  4. 4.
    Moore SP, Green AC, Garvey G, Coory MD, Valery PC (2011) A study of head and neck cancer treatment and survival among Indigenous and non-Indigenous people in Queensland, Australia, 1998 to 2004. BMC Cancer 11(1):460–466. doi:10.1186/1471-2407-11-460 CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Cass A, Lowell A, Christie M, Snelling PL, Flack M, Marrnganyin B, Brown I (2002) Sharing the true stories: improving communication between Aboriginal patients and healthcare workers. Med J Aust 176(10):466–470PubMedGoogle Scholar
  6. 6.
    Shahid S, Durey A, Bessarab D, Aoun SM, Thompson SC (2013) Identifying barriers and improving communication between cancer service providers and Aboriginal patients and their families: the perspective of service providers. BMC Health Serv Res 13(1):460–472. doi:10.1186/1472-6963-13-460 CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Treloar C, Gray R, Brener L, Jackson C, Saunders V, Johnson P, Harris M, Butow P, Newman C (2014) “I can’t do this, it’s too much”: building social inclusion in cancer diagnosis and treatment experiences of Aboriginal people, their carers and health workers. International journal of public health 59(2):373. doi:10.1007/s00038-013-0466-1 CrossRefPubMedGoogle Scholar
  8. 8.
    Shahid S, Finn L, Bessarab D, Thompson SC (2011) ‘Nowhere to room... nobody told them’: logistical and cultural impediments to Aboriginal peoples’ participation in cancer treatment. Aust Health Rev 35(2):235–241CrossRefPubMedGoogle Scholar
  9. 9.
    Blanch-Hartigan D, Forsythe LP, Alfano CM, Smith T, Nekhlyudov L, Ganz PA, Rowland JH (2014) Provision and discussion of survivorship care plans among cancer survivors: results of a nationally representative survey of oncologists and primary care physicians. Journal of clinical oncology: official journal of the American Society of Clinical Oncology 32(15):1578–1585. doi:10.1200/JCO.2013.51.7540 CrossRefGoogle Scholar
  10. 10.
    Dwyer J, Swinburn K, Wilson G (2004) National strategies for improving Indigenous health and health care. Australian Government Department of Health.
  11. 11.
    Bessarab D, Ng’andu B (2010) Yarning about yarning as a legitimate method of Indigenous research. International Journal of Critical Indigenous Studies 3(1):37–50Google Scholar
  12. 12.
    Geia LK, Hayes B, Usher K (2013) Yarning/Aboriginal storytelling: towards an understanding of an Indigenous perspective and its implications for research practice. Contemp Nurse 46(1):13–17. doi:10.5172/conu.2013.46.1.13CrossRefPubMedGoogle Scholar
  13. 13.
    QSR International Pty Ltd (2012) NVivo qualitative data analysis software version 10.
  14. 14.
    Charmaz C (2006) Constructing grounded theory: a practical guide through qualitative analysis. Sage Publications, LondonGoogle Scholar
  15. 15.
    Polkinghorne DE (1995) Narrative configuration in qualitative analysis. Int J Qual Stud Educ 8(1):5–23. doi:10.1080/0951839950080103 CrossRefGoogle Scholar
  16. 16.
    Australian Institute of Health and Welfare (2004) Rural, regional and remote health: a guide to remoteness classifications. Vol cat. No PHE 53. Australian Institute of Health and Welfare, CanberraGoogle Scholar
  17. 17.
    Meiklejohn JA, Adams J, Valery PC, Walpole ET, Martin JH, Williams HM, Garvey G (2016) Health professional’s perspectives of the barriers and enablers to cancer care for Indigenous Australians. Eur J Cancer Care 25(2):254–261. doi:10.1111/ecc.12467 CrossRefGoogle Scholar
  18. 18.
    Shahid S, Finn L, Thompson SC (2009) Barriers to participation of Aboriginal people in cancer care: communication in the hospital setting. Med J Aust 190(10):574PubMedGoogle Scholar
  19. 19.
    Meiklejohn JA, Mimery A, Martin JH, Bailie R, Garvey G, Walpole ET, Adams J, Williamson D, Valery PC (2016) The role of the GP in follow-up cancer care: a systematic literature review. J Cancer Surviv. doi:10.1007/s11764-016-0545-4 PubMedGoogle Scholar
  20. 20.
    Søgaard M, Thomsen RW, Bossen KS, Sørensen HT, Nørgaard M (2013) The impact of comorbidity on cancer survival: a review. Clinical Epidemiology 5(Suppl 1):3CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Stubblefield MD, Hubbard G, Cheville A, Koch U, Schmitz KH, Dalton SO (2013) Current perspectives and emerging issues on cancer rehabilitation. Cancer 119(11):2170–2178. doi:10.1002/cncr.28059 CrossRefPubMedGoogle Scholar
  22. 22.
    Meiklejohn JA, Adams J, Valery PC, Walpole ET, Martin JH, Williams HM, Garvey G (2015) Indigenous cancer care in Queensland, Australia: health professionals’ framing of “difference”. The Australian Journal of Cancer Nursing 16(1):4–12Google Scholar
  23. 23.
    Platt V, O’Connor K, Coleman R (2015) Improving regional and rural cancer services in western Australia: improving cancer services. Aust J Rural Health 23(1):32–39. doi:10.1111/ajr.12171 CrossRefPubMedGoogle Scholar
  24. 24.
    Chan BA, Larkins SL, Evans R, Watt K, Sabesan S (2015) Do teleoncology models of care enable safe delivery of chemotherapy in rural towns? Med J Aust 203(10):406. doi:10.5694/mja15.00190 CrossRefPubMedGoogle Scholar
  25. 25.
    Sabesan S, Roberts LJ, Aiken P, Joshi A, Larkins S (2014) Timely access to specialist medical oncology services closer to home for rural patients: experience from the Townsville teleoncology model. Aust J Rural Health 22(4):156–159. doi:10.1111/ajr.12101 CrossRefPubMedGoogle Scholar
  26. 26.
    Cavanagh BM, Wakefield CE, McLoone JK, Garvey G, Cohn RJ (2016) Cancer survivorship services for Indigenous peoples: where we stand, where to improve? A systematic review Journal of Cancer Survivorship 10(2):330–341. doi:10.1007/s11764-015-0479-2 CrossRefPubMedGoogle Scholar
  27. 27.
    Brennan MM, Boyle FJ, Spillane A, Butow P, Marven M (2011) Follow up after breast cancer: views of Australian women. Aust Fam Physician 40(5):311–316PubMedGoogle Scholar
  28. 28.
    Lawler S, Spathonis K, Masters J, Adams J, Eakin E (2011) Follow-up care after breast cancer treatment: experiences and perceptions of service provision and provider interactions in rural Australian women. Support Care Cancer 19(12):1975–1982CrossRefPubMedGoogle Scholar
  29. 29.
    Walsh J, Young J, Harrison J, Butow P, Solomon M, Masya L, White K (2011) What is important in cancer care coordination? A qualitative investigation. European Journal of Cancer Care 20(2):220–227CrossRefPubMedGoogle Scholar
  30. 30.
    Elmir R, Jackson D, Beale B, Schmied V (2010) Against all odds: Australian women’s experiences of recovery from breast cancer. J Clin Nurs 19(17–18):2531–2538CrossRefPubMedGoogle Scholar
  31. 31.
    Butow P, Phillips N, Schweder F, White J, Underhill K, Goldstein C (2012) Psychosocial well-being and supportive care needs of cancer patients living in urban and rural/regional areas: a systematic review. Support Care Cancer 20(1):1–22CrossRefPubMedGoogle Scholar
  32. 32.
    Ware V (2013) Improving the accessibility of health services in urban and regional settings for Indigenous people. Australian Institute of Health and Welfare: Closing the Gap Clearinghouse, CanberraGoogle Scholar
  33. 33.
    Whop L, Garvey G, Baade P, Cunningham J, Lokuge K, Brotherton J, Valery PC, O’Connell DL, Canfell K, Diaz A, Roder D, Gertig D, Moore SP, Condon J (2016) The first comprehensive report on Indigenous Australian women’s inequalities in cervical screening: a retrospective registry cohort study in Queensland, Australia (2000-2011). Cancer 122(10):1560–1569CrossRefPubMedPubMedCentralGoogle Scholar
  34. 34.
    Diaz A, Whop L, Valery PC, Moore SP, Cunningham J, Garvey G, Condon J (2015) Cancer outcomes for Aboriginal and Torres Strait Islander Australians in rural and remote areas. Aust J Rural Health 23(1):12CrossRefGoogle Scholar
  35. 35.
    Davy C, Harfield S, Mcarthur A, Munn Z, Brown A (2016) Access to primary health care services for Indigenous peoples: a framework synthesis. Int J Equity Health 15. doi:10.1186/s12939-016-0450-5
  36. 36.
    De Maeseneer J, Willems S, De Sutter A, Van de Geuchte I, Billings M (2007) Primary health care as a strategy for achieving equitable care: a literature review commissioned by the Health Systems Knowledge Network. WHO Commission on the Social Determinants of Health, Health Systems Knowledge NetworkGoogle Scholar
  37. 37.
    Braun K, Kagawa-Singer M, Holden A, Burhansstipanov L, Tran J, Seals B, Corbie-Smith G, Tsark JU, Harjo LD, Foo M, Ramirez A (2012) Cancer patient navigator tasks across the cancer care continuum. J Health Care Poor Underserved 23(1):398–413CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2017

Authors and Affiliations

  • J. A. Meiklejohn
    • 1
    • 2
  • G. Garvey
    • 2
  • R. Bailie
    • 2
  • E. Walpole
    • 3
    • 4
    • 5
  • J. Adams
    • 6
  • D. Williamson
    • 7
  • J. Martin
    • 5
    • 8
  • C. M. Bernardes
    • 1
    • 2
  • B. Arley
    • 1
    • 2
  • B. Marcusson
    • 1
  • P. C. Valery
    • 1
    • 2
  1. 1.QIMR Berghofer Medical Research InstituteRoyal Brisbane HospitalBrisbaneAustralia
  2. 2.Menzies School of Health ResearchBrisbaneAustralia
  3. 3.Princess Alexandra HospitalWoolloongabbaAustralia
  4. 4.Metro South Health and Hospital ServiceEight Mile PlainsAustralia
  5. 5.University of QueenslandSt LuciaAustralia
  6. 6.University of Technology SydneyUltimoAustralia
  7. 7.Aboriginal and Torres Strait Islander Health UnitQueensland HealthBrisbaneAustralia
  8. 8.University of Newcastle School of Medicine and Public Health, Calvary Mater HospitalNewcastleAustralia

Personalised recommendations