Diverse patient perspectives on respect in healthcare: A qualitative study

Background The dominant view of respect in western bioethics focuses almost exclusively on respect for autonomy (or ‘self-rule’) as conceptualized primarily from the perspective of philosophers. We designed this study to understand, from the perspective of patients from different racial/ethnic groups, what it means for patients to be treated with respect in healthcare settings. Methods We conducted focus groups with African American, Latino, and white patients in the Northwestern U.S. Focus groups were community-based and stratified by race and gender. We asked participants to describe respectful and disrespectful physician behaviors. We reviewed transcripts and coded for: 1) definitions of respect and 2) specific behaviors that convey respect or disrespect. Results We conducted 26 focus groups, 5 each with African American men and women, 4 each with Latino men and women, and 4 each with white men and women. We identified two primary definitions of respect described by all three racial/ethnic groups. These were: 1) being treated like a person (“like you're a person not just a statistic, or another patient”), and 2) being treated as an equal (“treat me as an equal, like I matter”). When exploring specific behaviors that convey respect or disrespect, there were largely similar themes identified by all or most racial/ethnic groups. These were being known as a particular individual, avoidance of stereotyping, being treated politely, honest explanations of medical issues, and how lateness is handled. There were also some differences across racial/ethnic groups. The most prominent demonstration of respect mentioned among African American participants were for physicians to hear vs. dismiss what patients say and trusting the patient's knowledge of him/herself. The most prominent demonstration of respect discussed in the Latino focus groups was having the provider show concern by asking the questions about the patient's clinical condition. Conclusions Our study found that patients have insights not included in common definitions of respect, and that deliberate inclusion of diverse participants increased the number of themes that emerged. Understanding what makes patients from different backgrounds feel respected and disrespected, from the perspectives of patients themselves, is vital to delivering care that is truly patient-centered.