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Satisfaction with cancer care among American Indian and Alaska Natives in Oregon and Washington State: a qualitative study of survivor and caregiver perspectives

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Abstract

Purpose

To better understand satisfaction with care among American Indian and Alaska Native (AI/AN) persons with cancer, we explored dimensions of the provider relationship that contributed to satisfaction among caregivers and survivors who received cancer treatment in Oregon and Washington State.

Methods

Between November 2011 and April 2013, the project team interviewed 11 caregivers and 71 AI/AN cancer survivors residing in Oregon and Washington State. Interview questions aimed to elicit participant experiences with care providers and factors associated with cancer care satisfaction. Interviews were analyzed using an inductive content analysis approach in which concepts were identified and themes derived from interview data.

Results

Three overarching themes, each with two sub-themes, emerged from the data: (1) universal factors: bolstering understanding, involvement, and empathy in care; (2) minority-specific factors: incorporating culture and community into care; and (3) AI/AN-unique factors: interacting with Indian health clinics and Indian Health Service (IHS).

Conclusions

The results of our study suggest that satisfaction with care among survivors and their caregivers must be examined within the context of culture and community, particularly among minority patients. Our study demonstrates providers’ critical role in ensuring AI/AN patients emerge satisfied with cancer treatment by honoring their AI/AN-specific needs, such as respect for integration of traditional healing modalities and navigation of specialty care coordination.

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Abbreviations

AI/AN:

American Indian/Alaska Native

AIMS:

Cancer among American Indians: A Multi-State Study

FHCRC:

Fred Hutchinson Cancer Research Center

HICOR:

Hutchinson Center for Cancer Outcomes Research

IHS:

Indian Health Service

NHW:

non-Hispanic whites

NPAIHB:

Northwest Portland Area Indian Health Board

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Acknowledgments

The authors would like to thank the staff and investigators at all collaborating institutions: the FHCRC Hutchinson Institute for Cancer Outcomes Research (HICOR); the Northwest Portland Area Indian Health Board; and the AIMS Advisory Board, Oregon State Cancer Registry. We would also like to extend our gratitude to the study participants and community members, who provided insight and perspective, and without whom this work would not be possible.

Author information

Authors and Affiliations

  1. Fred Hutchinson Cancer Research Center, Public Health Sciences Division, 1100 Fairview Avenue N.M3-B232, Seattle, WA, 98109, USA

    Sarah Hohl, Lisel Koepl, Hannah Linden & Scott Ramsey

  2. School of Public Health, Department of Health Services, University of Washington, Seattle, WA, USA

    Sarah Hohl

  3. School of Public Health, Center for Research on Women and Gender, Cancer Center, University of Illinois-Chicago, Chicago, IL, USA

    Yamile Molina

  4. Northwest Portland Area Indian Health Board, Portland, OR, USA

    Kerri Lopez & Eric Vinson

  5. Seattle Cancer Care Alliance, Seattle, WA, USA

    Hannah Linden

  6. School of Medicine, University of Washington, Seattle, WA, USA

    Hannah Linden & Scott Ramsey

Authors
  1. Sarah Hohl
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  2. Yamile Molina
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  3. Lisel Koepl
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  4. Kerri Lopez
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  6. Hannah Linden
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  7. Scott Ramsey
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Corresponding author

Correspondence to Sarah Hohl.

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Disclosure

The content is solely the responsibility of the authors and does not necessarily represent the official views of NIH, NCI, FHCRC, HICOR, NPAIHB, University of Illinois-Chicago, Seattle Cancer Care Alliance, or the University of Washington. The authors have full access to all primary data. Given the ethical standards and protocols with this vulnerable population, primary data may be shared upon approval by the Portland Area Indian Health Service Institutional Review Board and the Northwest Portland Area Indian Health Board.

Funding

This work was supported by grants from the National Institutes of Health (NIH), National Cancer Institute (NCI) (R01 CA125231 to S. Ramsey).

Conflict of interest

The authors declare that they have no competing interests.

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Hohl, S., Molina, Y., Koepl, L. et al. Satisfaction with cancer care among American Indian and Alaska Natives in Oregon and Washington State: a qualitative study of survivor and caregiver perspectives. Support Care Cancer 24, 2437–2444 (2016). https://doi.org/10.1007/s00520-015-3041-x

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  • DOI: https://doi.org/10.1007/s00520-015-3041-x

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