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

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Abstract

Purpose

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

Methods

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.

Results

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.

Conclusions

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.

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Acknowledgements

The authors would like to acknowledge and thank all participants in this study. This study was undertaken under the auspices of the Centre of Research Excellence in Discovering Indigenous Strategies to Improve Cancer Outcomes Via Engagement, Research Translation and Training (DISCOVER-TT CRE, funded by the National Health and Medical Research Council no. 1041111). This work was supported by the National Health and Medical Research Council (project no. 1044433). PCV was supported by an Australian National Health and Medical Research Council (Career Development Fellowship no. 1083090). Ross Bailie’s work is supported by an Australian Research Council Future Fellowship (100100087). Jon Adams work is supported by an Australian Research Council Future Fellowship (no. FT140100195). The views expressed in this publication are those of the authors and do not necessarily reflect the views of the funding agencies. There are no financial disclosures.

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Authors and Affiliations

  1. QIMR Berghofer Medical Research Institute, Royal Brisbane Hospital, Locked Bag 2000, Brisbane, QLD, 4029, Australia

    J. A. Meiklejohn, C. M. Bernardes, B. Arley, B. Marcusson & P. C. Valery

  2. Menzies School of Health Research, PO Box 10639, Adelaide Street, Brisbane, QLD, 4000, Australia

    J. A. Meiklejohn, G. Garvey, R. Bailie, C. M. Bernardes, B. Arley & P. C. Valery

  3. Princess Alexandra Hospital, 199 Ipswich Road, Woolloongabba, QLD, 4102, Australia

    E. Walpole

  4. Metro South Health and Hospital Service, Building 5, Garden City Office Park, 2404 Logan Rd, Eight Mile Plains, QLD, 4113, Australia

    E. Walpole

  5. University of Queensland, St Lucia, QLD, 4072, Australia

    E. Walpole & J. Martin

  6. University of Technology Sydney, Level 7, Building 10, 235-253 Jones St, Ultimo, NSW, 2007, Australia

    J. Adams

  7. Aboriginal and Torres Strait Islander Health Unit, Queensland Health, GPO Box 48, Brisbane, QLD, 4001, Australia

    D. Williamson

  8. University of Newcastle School of Medicine and Public Health, Calvary Mater Hospital, Newmed 2, room 5.35, Newcastle, NSW, 2300, Australia

    J. Martin

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  1. J. A. Meiklejohn
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  2. G. Garvey
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  3. R. Bailie
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  4. E. Walpole
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  7. J. Martin
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  8. C. M. Bernardes
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  9. B. Arley
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  11. P. C. Valery
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Corresponding author

Correspondence to J. A. Meiklejohn.

Ethics declarations

Ethics approval was obtained through the Human Research Ethics Committees of Northern Territory Department of Health, Menzies School of Health Research; Queensland Health, Darling Downs Hospital and Health Service; and QIMR Berghofer Medical Research Institute and participating Aboriginal community-controlled primary health care services.

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Meiklejohn, J.A., Garvey, G., Bailie, R. et al. Follow-up cancer care: perspectives of Aboriginal and Torres Strait Islander cancer survivors. Support Care Cancer 25, 1597–1605 (2017). https://doi.org/10.1007/s00520-016-3563-x

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