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Caregiving among American Indians and Alaska Natives with cancer

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Abstract

Purpose

Caregivers are an important source of support for oncology patients during cancer diagnosis and treatment, often helping patients manage barriers to care. Our study had three goals: to describe the characteristics of caregivers for American Indian and Alaska Native (AI/AN) oncology patients, to assess the similarities and differences between the perceptions of caregivers and patients regarding barriers to cancer care, and to compare AI/AN caregivers to non-AI/AN caregivers on perceived barriers to cancer care.

Methods

We conducted a structured interview that assessed perceived barriers to cancer care with a paired sample of 98 adult caregivers and 98 AI/AN oncology patients and to assess the degree of agreement between these two groups. We also investigated whether AI/AN and non-AI/AN caregivers had differing perceptions of barriers to cancer care.

Results

Caregivers reported that their role was very meaningful and not highly stressful. Caregivers and patients agreed 70 % of the time on specific barriers to cancer care. Both groups overwhelmingly reported financial and family or work issues as major barriers to care, whereas trust in providers was the least frequently endorsed barrier. A comparison of AI/AN and non-AI/AN caregivers revealed that AI/AN caregivers identified confidentiality among clinical staff as a significant barrier, whereas non-AI/AN caregivers perceived financial barriers as more significant.

Conclusions

Finances, family, and work are perceived as the largest barriers to the receipt of cancer care for AI/AN oncology patients. Both patients and caregivers trusted health-care providers. Assessing barriers to care early in the assessment process may result in better engagement with cancer treatment by patients and their caregivers.

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Acknowledgments

This study was supported by grants from the National Center for Minority Health and Health Disparities, P60 MD000507 (SM Manson, PI); Center for Native Health Population Health Disparities, National Cancer Institute, P50 CA148110 (D Buchwald and J Henderson, PIs); and Native People for Cancer Control, National Cancer Institute, U54 CA153498 (D Buchwald and J Henderson, PIs). We acknowledge Raymond Harris, PhD, for assisting with the drafting of successive versions of this manuscript.

Conflict of interest

All authors declare that they have no competing interests and no financial conflicts of interest with the organization that sponsored the research. The authors do have full control of all primary data and agree to allow Supportive Care in Cancer to review this data if requested.

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Authors and Affiliations

  1. Department of Psychiatry and Psychology, Mayo Clinic, 200 First Ave SW, Rochester, MN, 55905, USA

    Craig N. Sawchuk

  2. Department of Medicine, University of Washington, Seattle, WA, USA

    Ursula Tsosie & Dedra Buchwald

  3. Department of Epidemiology, University of Washington, Seattle, WA, USA

    Emily Van Dyke, Adam Omidpanah & Dedra Buchwald

  4. Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, WA, USA

    Joan E. Russo

Authors
  1. Craig N. Sawchuk
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  2. Emily Van Dyke
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  3. Adam Omidpanah
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  4. Joan E. Russo
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  5. Ursula Tsosie
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  6. Dedra Buchwald
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Corresponding author

Correspondence to Craig N. Sawchuk.

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Sawchuk, C.N., Van Dyke, E., Omidpanah, A. et al. Caregiving among American Indians and Alaska Natives with cancer. Support Care Cancer 23, 1607–1614 (2015). https://doi.org/10.1007/s00520-014-2512-9

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  • DOI: https://doi.org/10.1007/s00520-014-2512-9

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