Encouraging patient involvement is a cornerstone of many healthcare interventions and decision-making models to ensure that treatment decisions reflect the needs, values…
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.
Through an inductive analysis, this chapter draws on qualitative interviews of women diagnosed with breast cancer prior to 40 years of age (n = 69).
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.
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.
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.