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Elucidating patient-perceived role in “decision-making” among African Americans receiving lung cancer care through a county safety-net system

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Abstract

Purpose

We explored patient-perceived role in “decision-making” related to active treatment and palliation among African Americans receiving lung cancer care through a county safety-net system.

Methods

Drawing from a cohort of over 100 African Americans treated in a safety-net hospital, we invited a subsample of 13 patient-caregiver dyads to participate in a series of dyadic, ethnographic interviews conducted at the patients’ homes. Over 40 h of transcripts were analyzed in an iterative process resulting in reported themes.

Results

Findings from ethnographic interviews demonstrated that healthcare communication with physicians is difficult for patients. While caregivers and patients describe a deep engagement in lung cancer care, they expressed a concurrent lack of understanding of their prognosis and outcomes of treatment. Dyads did not discuss their lung cancer experience in terms of decision-making; rather, most articulated their role as following physician guidance. Distinct lack of understanding about disease course, severity, and prognosis may constrain patient perception of the need for informed decision-making over the course of care.

Conclusions

Dyadic interviews detailing safety-net patient experiences of lung cancer care raise important questions about how clinicians, as well as researchers, conceptualize processes of informed decision-making in vulnerable populations.

Implications for Cancer Survivors

Safety-net patients may not perceive their role as involving informed decision-making and further may lack understanding of disease course and individual prognosis. Safety-net patient dyads expressed high involvement in care and a desire for clarity; clinicians should be prepared to clearly communicate disease stage and prognosis.

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Acknowledgments

We gratefully acknowledge the clinicians and staff of the ambulatory oncology clinic and Office of Research Administration of Parkland Health & Hospital System for their support and assistance in the conduct of this study. We also acknowledge Trisha Melhado, Saddynah Belmashkan, Maria Funes, and Adam Loewen (UTSW) for recruitment, survey administration, and database development.

Funding/support

This study was supported by a grant from the National Cancer Institute (5R03CA159706-02; Lee).

Dr. Lee is also supported in part by the UT Southwestern Center for Patient-Centered Outcomes Research through a grant from the Agency for Healthcare Research and Quality (R24 HS022418). Additional support provided by the UTSW Center for Translational Medicine, through the NIH/National Center for Advancing Translational Sciences (UL1TR001105) and the Harold C. Simmons Cancer Center (1P30 CA142543).

Conflict of interest

The authors declare that they have no conflict of interest.

Author information

Authors and Affiliations

  1. Department of Clinical Sciences, University of Texas Southwestern Medical Center, 5323 Harry Hines, Boulevard, Dallas, 75390-9066, TX, USA

    Simon Craddock Lee, Emily G. Marks & Joanne M. Sanders

  2. Harold C. Simmons Cancer Center, 2201 Inwood Road, Dallas, 75390-8590, TX, USA

    Simon Craddock Lee

  3. Program in Psychological Sciences, University of California—Merced, 5200 North Lake Road, Merced, 95343, CA, USA

    Deborah J. Wiebe

Authors
  1. Simon Craddock Lee
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  2. Emily G. Marks
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  3. Joanne M. Sanders
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  4. Deborah J. Wiebe
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Corresponding author

Correspondence to Simon Craddock Lee.

Appendix: interview guide

Appendix: interview guide

Question domains for initial session

  • Tell me about the time when you first found out you were sick.

  • Tell me about the first time you talked with XXX about your sickness.

  • Does s/he go with you to your medical appointments? Tell me more about that.

  • It sounds like you have a lot to cope with. How does XXX help you manage?

  • When you have gone to see the doctor, do you two talk about things afterwards? During?

  • Some people find that coping with illness is made more difficult by family members. Tell me what it’s like for you? For the two of you?

  • Who else do you talk to about taking care of YYYY?

  • Who else do you talk to about your illness?

  • Do you think your relationship, how you are coping, is different from how other people/couples might manage? Tell me more about that. How do you think you are different/similar?

  • Tell me how you feel about his/her treatment?

  • Do you think you understand enough to make decisions/help YYY make decisions?

  • How do you two feel about the care you are getting?

  • Talk to me about getting to and from appointments?

  • Have you talked about what comes next?

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Lee, S.C., Marks, E.G., Sanders, J.M. et al. Elucidating patient-perceived role in “decision-making” among African Americans receiving lung cancer care through a county safety-net system. J Cancer Surviv 10, 153–163 (2016). https://doi.org/10.1007/s11764-015-0461-z

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  • DOI: https://doi.org/10.1007/s11764-015-0461-z

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