TY - CHAP
T1 - Younger women with breast cancer and treatment decision-making
T2 - Rethinking patient involvement and empowerment
AU - Snyder, Karrie Ann
AU - Tate, Alexandra
AU - Roubenoff, Ethan
N1 - Publisher Copyright:
© 2018 by Emerald Publishing Limited All rights of reproduction in any form reserved.
PY - 2018
Y1 - 2018
N2 - Purpose Encouraging patient involvement is a cornerstone of many healthcare interventions and decision-making models to ensure that treatment decisions reflect the needs, values, and desires of patients. Involved patients are thought to be empowered patients who feel a sense of efficacy in regards to their own health. However, there is a lack of understanding of how patients relate to empowerment and involvement and, most importantly, how these constructs relate to one another in patients’ decision-making experiences. Methodology/approach Through an inductive analysis, this chapter draws on qualitative interviews of women diagnosed with breast cancer prior to 40 years of age (n = 69). Findings By examining the intersection of how patients define their own involvement in treatment decisions and their sense of empowerment, we find four orientations to decision-making (Advocates, Bystanders, Co-Pilots, and Downplayers) with involvement and empowerment being coupled for some respondents, but decoupled for others. Research limitations/implications Our findings suggest expanding what it means to be an “active” patient as respondents had multiple ways of characterizing involvement, including being informed or following their doctor’s advice. Our findings also suggest a more critical examination of the origins and potential downsides of patient empowerment as some respondents reported feeling overwhelmed or pushed into advocacy roles. The sample was disproportionately higher socioeconomic status with limited racial/ethnic diversity. Empowerment and involvement may be enacted differently for other social groups and other medical conditions. Originality/value By examining first-person patient narratives, we conclude that patients’ experience may not fully align with current academic or clinical discussions of patient involvement or empowerment.
AB - Purpose Encouraging patient involvement is a cornerstone of many healthcare interventions and decision-making models to ensure that treatment decisions reflect the needs, values, and desires of patients. Involved patients are thought to be empowered patients who feel a sense of efficacy in regards to their own health. However, there is a lack of understanding of how patients relate to empowerment and involvement and, most importantly, how these constructs relate to one another in patients’ decision-making experiences. Methodology/approach Through an inductive analysis, this chapter draws on qualitative interviews of women diagnosed with breast cancer prior to 40 years of age (n = 69). Findings By examining the intersection of how patients define their own involvement in treatment decisions and their sense of empowerment, we find four orientations to decision-making (Advocates, Bystanders, Co-Pilots, and Downplayers) with involvement and empowerment being coupled for some respondents, but decoupled for others. Research limitations/implications Our findings suggest expanding what it means to be an “active” patient as respondents had multiple ways of characterizing involvement, including being informed or following their doctor’s advice. Our findings also suggest a more critical examination of the origins and potential downsides of patient empowerment as some respondents reported feeling overwhelmed or pushed into advocacy roles. The sample was disproportionately higher socioeconomic status with limited racial/ethnic diversity. Empowerment and involvement may be enacted differently for other social groups and other medical conditions. Originality/value By examining first-person patient narratives, we conclude that patients’ experience may not fully align with current academic or clinical discussions of patient involvement or empowerment.
KW - Cancer
KW - Decision-making
KW - Empowerment
KW - Fertility
KW - Gender
KW - Patient physician interactions
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U2 - 10.1108/S0275-495920180000036002
DO - 10.1108/S0275-495920180000036002
M3 - Chapter
AN - SCOPUS:85066988536
T3 - Research in the Sociology of Health Care
SP - 37
EP - 58
BT - Research in the Sociology of Health Care
PB - Emerald Group Publishing Ltd.
ER -