Published in:
01-02-2016
Elucidating patient-perceived role in “decision-making” among African Americans receiving lung cancer care through a county safety-net system
Published in: Journal of Cancer Survivorship | Issue 1/2016
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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.