Community-identified recommendations to enhance cancer survivorship for Aboriginal and Torres Strait Islander people
Judith A. Meiklejohn A I , Brian Arley A B , Ross Bailie B C , Jon Adams D , Gail Garvey B , Jennifer H. Martin E F , Euan T. Walpole F G H and Patricia C. Valery A BA QIMR Berghofer Medical Research Institute, Locked Bag 2000, Royal Brisbane Hospital, Qld 4006, Australia.
B Menzies School of Health Research, Level 1, 147 Wharf Street, Spring Hill, Qld 4000, Australia.
C University Centre for Rural Health, University of Sydney, 61 Uralba Street Lismore, NSW 2480, Australia.
D Faculty of Health, University of Technology Sydney, PO Box 123, Broadway, NSW 2007, Australia.
E University of Newcastle School of Medicine and Public Health, Callaghan, NSW 2308, Australia.
F Southside Clinical School, University of Queensland, Level 2, Translational Research Institute, Princess Alexandra Hospital, Brisbane, Qld 4072, Australia.
G Princess Alexandra Hospital, 199 Ipswich Road, Woolloongabba, Brisbane, Qld 4102, Australia.
H Metro South Health and Hospital Service, Building 5 Garden City Office Park, 2404 Logan Road, Eight Mile Plains, Qld 4113, Australia.
I Corresponding author. Email: judith.meiklejohn@qimrbeghofer.edu.au
Australian Journal of Primary Health 24(3) 233-240 https://doi.org/10.1071/PY17127
Submitted: 21 September 2017 Accepted: 7 February 2018 Published: 28 May 2018
Abstract
Indigenous Australians diagnosed with cancer experience higher mortality and lower survival rates compared to non-Indigenous Australians. Reasons are multifaceted and complex. Knowledge about Indigenous cancer survivors’ perspectives of positive cancer survivorship is a gap in research evidence. The study explored cancer survivorship perspectives of Indigenous cancer survivors, their support people and healthcare workers with a view to developing recommendations for cancer survivorship. Indigenous Australians who completed cancer treatment in the previous 6 months to 5 years, their support people and primary healthcare workers were recruited from primary healthcare centres and a large tertiary Queensland hospital. Semi-structured interviews and focus groups were conducted with written and informed consent obtained prior. Participants emphasised key action areas and recommendations to enhance cancer survivorship, namely: establishing a community cancer advocate and peer support program, availability and use of a cancer-specific Indigenous primary healthcare worker and hospital-based Indigenous patient navigator, as well as adoption of question prompt lists and cancer survivorship care plans. Existing research suggests significant benefits from implementing the key recommendations identified in this study. Greater support and commitment across health sectors and funding bodies is needed to promote institutional change and health system development.
Additional keywords: cancer, follow up, Indigenous, navigation, qualitative research, support.
References
Ashing-Giwa K, Tapp C, Brown S, Fulcher G, Smith J, Mitchell E, Santifer R, McDowell H, Martin K, Betts-Turner V, Carter B, Rosales D, Jackson M (2013) Are survivorship care plans responsive to African-American breast cancer survivors? Voices of survivors and advocates. Journal of Cancer Survivorship: Research and Practice 7, 283–291.| Are survivorship care plans responsive to African-American breast cancer survivors? Voices of survivors and advocates.Crossref | GoogleScholarGoogle Scholar |
Australian Institute of Health and Welfare (2004) ‘Rural, Regional and Remote Health: A Guide to Remoteness Classifications.’ (Australian Institute of Health and Welfare: Canberra, ACT, Australia)
Australian Institute of Health and Welfare (2017) Cancer in Australia 2017. Cancer series number 101. Catalogue number CAN 100. AIHW, Canberra, ACT, Australia.
Brandes K, Linn AJ, Butow PN, Weert JCM (2015) The characteristics and effectiveness of question prompt list interventions in oncology: a systematic review of the literature. Psycho-Oncology 24, 245–252.
| The characteristics and effectiveness of question prompt list interventions in oncology: a systematic review of the literature.Crossref | GoogleScholarGoogle Scholar |
Brough M, Bond C, Hunt J (2004) Strong in the city: towards a strength-based approach in Indigenous health promotion. Health Promotion Journal of Australia 15, 215–220.
| Strong in the city: towards a strength-based approach in Indigenous health promotion.Crossref | GoogleScholarGoogle Scholar |
Cancer Institute NSW (2009) Question prompt lists for people with cancer. (Cancer Institute: Sydney, NSW, Australia) Available at https://www.cancerinstitute.org.au/how-we-help/reports-and-publications/question-prompt-lists-for-people-with-cancer-(tran [Verified 31 March 2017]
COSA Working Group (2016) Model of survivorship care: critical components of cancer survivorship care in Australia position statement. Clinical Oncology Society of Australia, Sydney, NSW, Australia.
DiGiacomo M, Davidson PM, McGrath SJ, Dharmendra T, Thompson S (2012) Cancer in Aboriginal and Torres Strait Islander peoples: an evidence check rapid review for the Cancer Institute NSW, brokered by the Sax Institute. (Sax Institute: Sydney, NSW, Australia) Available at https://www.saxinstitute.org.au/wp-content/uploads/REPORT_Cancer-in-Aboriginal-populations-1.pdf [Verified 15 November 2017]
Dimoska A, Tattersall MD, Butow PN, Shepherd H, Kinnersley P (2008) Can a ‘prompt list’ empower cancer patients to ask relevant questions? Cancer 113, 225–237.
| Can a ‘prompt list’ empower cancer patients to ask relevant questions?Crossref | GoogleScholarGoogle Scholar |
Emery J (2014) Cancer survivorship – the role of the GP. Australian Family Physician 43, 521–525.
Errico KM, Rowden D (2006) Experiences of breast cancer survivor-advocates and advocates in countries with limited resources: a shared journey in breast cancer advocacy. The Breast Journal 12, S111–S116.
| Experiences of breast cancer survivor-advocates and advocates in countries with limited resources: a shared journey in breast cancer advocacy.Crossref | GoogleScholarGoogle Scholar |
Finn LD, Pepper A, Gregory P, Thompson SC (2008) Improving Indigenous access to cancer screening and treatment services: descriptive findings and a preliminary report on the Midwest Indigenous Women’s Cancer Support Group. The Australasian Medical Journal 1, 1–12.
| Improving Indigenous access to cancer screening and treatment services: descriptive findings and a preliminary report on the Midwest Indigenous Women’s Cancer Support Group.Crossref | GoogleScholarGoogle Scholar |
Gibson O, Lisy K, Davy C, Aromataris E, Kite E, Lockwood C, Riitano D, McBride K, Brown A (2015) Enablers and barriers to the implementation of primary health care interventions for Indigenous people with chronic diseases: a systematic review. Implementation Science 10, 71
| Enablers and barriers to the implementation of primary health care interventions for Indigenous people with chronic diseases: a systematic review.Crossref | GoogleScholarGoogle Scholar |
Hoey LM, Ieropoli SC, White VM, Jefford M (2008) Systematic review of peer-support programs for people with cancer. Patient Education and Counseling 70, 315–337.
| Systematic review of peer-support programs for people with cancer.Crossref | GoogleScholarGoogle Scholar |
Liamputtong P, Ezzy D (Eds) (2005) ‘Qualitative Research Methods.’ (Oxford University Press: Melbourne, Vic., Australia)
McCabe MS, Bhatia S, Oeffinger KC, Reaman GH, Tyne C, Wollins DS, Hudson MM (2013) American Society of Clinical Oncology statement: achieving high-quality cancer survivorship care. Journal of Clinical Oncology 31, 631–640.
| American Society of Clinical Oncology statement: achieving high-quality cancer survivorship care.Crossref | GoogleScholarGoogle Scholar |
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, 4–12.
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. Journal of Cancer Survivorship: Research and Practice 10, 990–1011.
| The role of the GP in follow-up cancer care: a systematic literature review.Crossref | GoogleScholarGoogle Scholar |
Meiklejohn JA, Garvey G, Bailie R, Walpole E, Adams J, Williamson D, Martin J, Bernardes CM, Arley B, Marcusson B, Valery PC (2017) Follow-up cancer care: perspectives of Aboriginal and Torres Strait Islander cancer survivors. Supportive Care in Cancer 25, 1597–1605.
| Follow-up cancer care: perspectives of Aboriginal and Torres Strait Islander cancer survivors.Crossref | GoogleScholarGoogle Scholar |
Miller N, Rogers SN (2018) A review of question prompt lists used in the oncology setting with comparison to the patient concerns inventory. European Journal of Cancer Care 27, e12489
| A review of question prompt lists used in the oncology setting with comparison to the patient concerns inventory.Crossref | GoogleScholarGoogle Scholar |
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, 460
| A study of head and neck cancer treatment and survival among Indigenous and non-indigenous people in Queensland, Australia, 1998 to 2004.Crossref | GoogleScholarGoogle Scholar |
Moore SP, Green AC, Bray F, Garvey G, Coory M, Martin J, Valery PC (2014) Survival disparities in Australia: an analysis of patterns of care and comorbidities among indigenous and non-indigenous cancer patients. BMC Cancer 14, 517
| Survival disparities in Australia: an analysis of patterns of care and comorbidities among indigenous and non-indigenous cancer patients.Crossref | GoogleScholarGoogle Scholar |
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. Australian Health Review 35, 235–241.
| ‘Nowhere to room … nobody told them’: logistical and cultural impediments to Aboriginal peoples’ participation in cancer treatment.Crossref | GoogleScholarGoogle Scholar |
Treloar C, Gray R, Brener L, Jackson C, Saunders V, Johnson P, Harris M, Butow P, Newman C (2013) Health literacy in relation to cancer: addressing the silence about and absence of cancer discussion among Aboriginal people, communities and health services. Health & Social Care in the Community 21, 655–664.
Valery PC, Coory M, Stirling J (2006) Cancer diagnosis, treatment, and survival in Indigenous and non-Indigenous Australians: a matched cohort study. Lancet 367, 1842
| Cancer diagnosis, treatment, and survival in Indigenous and non-Indigenous Australians: a matched cohort study.Crossref | GoogleScholarGoogle Scholar |
