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“I might not have cancer if you didn’t mention it”: a qualitative study on information needed by culturally diverse cancer survivors

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Abstract

Background

Immigrants from culturally and linguistically diverse (CALD) backgrounds diagnosed with cancer face multiple challenges with health systems foreign to them. There is scarce understanding about their needs following cancer treatment in the survivorship phase. Unmet needs were examined in immigrant Chinese and Greek cancer survivors in order to assist development of relevant and useful information resources for these CALD groups.

Methods

Qualitative descriptive design was used. Adult cancer survivors, whose native language was Mandarin, Cantonese or Greek, were recruited through ethnic cancer support groups and cancer specialists in two Australian cities. Six focus groups were conducted, two in each native language group. Recorded responses were transcribed, translated into English, and thematically analysed.

Results

Thirty-nine CALD cancer survivors participated from Greek (11), Cantonese (14) and Mandarin (14) backgrounds. Thematic findings included as follows: ongoing cancer-related stressors, cancer misunderstandings, coping strategies, ‘survivor’ seldom reflects self-appraisal, and additional CALD survivorship information needed. Immigrant cancer survivors may prefer ‘recovery’ to ‘survivorship’ descriptors and need information similar to Caucasian cancer survivors alongside as follows: resources for navigating health care, financial and community entitlements; caregiver-directed information to enhance their support; explanations about differences in health care approaches between survivors’ original and adopted countries; and acknowledgment of survivorship diversity within CALD groups.

Conclusions

Immigrant cancer survivors’ additional requirements to native survivors likely reflect challenges in dealing with foreign environments and varied levels of acculturation within group members. Identification of immigrant cancer survivorship issues may support development of targeted resources for promoting survivors’ self-care and capacity for finding, choosing, and using existing support options.

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Acknowledgments

This research was made possible by funding from Cancer Australia and the Australian Cancer Survivorship Centre. The authors would like to thank Brad Dalton for editorial assistance and manuscript preparation. Finally, we would like to thank the cancer survivors who assisted with this work.

Conflict of interest

There is no conflict of interest. The funder for this project was Cancer Australia with additional funds provided by the Victorian Department of Health and The Richard Pratt Foundation. ‘The corresponding (or lead) author has full control of all primary data and will allow Supportive Care in Cancer to review the data if requested.’

Author information

Authors and Affiliations

  1. Department of Cancer Experiences Research, Peter MacCallum Cancer Centre, St Andrews Place, East Melbourne, VIC, 3002, Australia

    Clare O’Callaghan, Penelope Schofield & Michael Jefford

  2. Palliative Care Service, Cabrini Health, Malvern, Australia

    Clare O’Callaghan

  3. Caritas Christi Hospice, St Vincent’s Hospital, Department of Medicine, University of Melbourne, Melbourne, Australia

    Clare O’Callaghan

  4. Department of Psychology, Swinburne University, Melbourne, VIC, Australia

    Penelope Schofield

  5. Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, VIC, Australia

    Penelope Schofield & Michael Jefford

  6. Psycho-oncology Co-operative Research Group, the University of Sydney, Sydney, NSW, Australia

    Phyllis Butow, Melanie Price, Ming Sze, Thida Thein & Shab Mireskandari

  7. School of Psychology, the University of Sydney, Sydney, NSW, Australia

    Phyllis Butow, Melanie Price & Ming Sze

  8. Australian Cancer Survivorship Centre—a Richard Pratt legacy, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    Linda Nolte, Spiri Tsintziras & Michael Jefford

  9. Chinese Cancer Society of Victoria, Box Hill, VIC, Australia

    Dorothy Yiu

  10. Department of Medical Oncology, Prince of Wales Hospital, Sydney, Australia

    David Goldstein

  11. Prince of Wales Clinical School, University of New South Wales, Sydney, Australia

    David Goldstein

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  1. Clare O’Callaghan
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Correspondence to Michael Jefford.

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O’Callaghan, C., Schofield, P., Butow, P. et al. “I might not have cancer if you didn’t mention it”: a qualitative study on information needed by culturally diverse cancer survivors. Support Care Cancer 24, 409–418 (2016). https://doi.org/10.1007/s00520-015-2811-9

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  • DOI: https://doi.org/10.1007/s00520-015-2811-9

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