Participants

Interviewees were identified through their participation in the Cancer Health Assessments Reaching Many (CHARM) study, which evaluated the implementation of a screening and genetic testing program for hereditary cancer risk in diverse primary care settings. CHARM participants were English- or Spanish-speaking patients, age 18–49 years, at Kaiser Permanente Northwest, an integrated healthcare delivery system in Oregon, and Denver Health, an integrated safety net health system in Colorado, who screened at high risk of hereditary breast and ovarian cancer syndrome and/or Lynch syndrome based on family history or insufficient knowledge of family history. The CHARM study is further described elsewhere [22].

CHARM participants were eligible to be interviewed if they had enrolled but not yet received genetic test results or received negative results within the past month. We used purposive sampling based on race and ethnicity, socioeconomic status, and language to include individuals with diverse backgrounds. We recruited eligible individuals by email or postal mail and followed up by phone. This study was approved by the Kaiser Permanente Northwest IRB as part of the CHARM study (Study 733).

Interviews

We developed and pilot-tested a semi-structured, individual interview guide including questions about respect and trust in healthcare and research. Questions about experiences with respect in healthcare served the dual role of introducing the concept of respect and collecting data. Our questions about this topic were broad, as our goal was to understand the range of experiences that interviewees reported as demonstrating respect or a lack thereof. We assumed that participants would have personal experiences that they would classify as respectful or not within the medical setting, stemming from both individual and institutional actions. We included prompts about individual and institutional actors to explore respect at each level. We also included a prompt asking about any experiences feeling a lack of respect from a response to the interviewee’s personal characteristics or appearance, as prior work has emphasized being recognized as a valued individual as a central component of respect and we wanted to explicitly open space for interviewees to address any experiences of a lack of respect resulting from discrimination if they felt comfortable doing so (Table 1), Four experienced interviewers (DMD, SAK, ARH, DR) were trained on the interview guide, conducted all interviews by phone, and took field notes during or immediately after each interview. Interviewees consented to be contacted for interviews at the time they consented to the CHARM study, and they provided verbal consent after hearing information about the interview study at the start of each interview, which was documented by the interviewer. Interviews lasted approximately 30–45 minutes each. Interviews were audio recorded, professionally transcribed and (for Spanish interviews) translated into English by certified translators, reviewed for accuracy and removal of potentially identifying information by the interviewer, and uploaded to the cloud-based qualitative analysis program Dedoose (dedoose.com) for data management and analysis.

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Table 1. Interview questions about respect in healthcare.

https://doi.org/10.1371/journal.pone.0250999.t001

Analysis

We used a descriptive content analysis approach to analyze our data, drawing on interviewees’ own words to identify our analytic domains wherever possible [20,21]. We developed a coding framework beginning with our interview guide then expanding on it using iterative open coding and review of interview transcripts to inductively identify the range of ways in which patients described their experiences and perspectives. Two coders (DMD, HL) systematically coded all transcripts, of which 25% were coded to consensus and reviewed by a third co-author as tie-breaker (BSW or SAK) to ensure consistency. We further modified the codebook as we coded, applying new codes retroactively as needed, ultimately identifying 13 sub-codes that described patients’ experiences with respect in healthcare. We then collated all transcript excerpts that were coded as one or more of these sub-codes and summarized each category. Two authors (CB, SAK) iteratively reviewed and sorted the summaries, evaluating theoretical saturation within each category of the data and identifying areas of overlap where sub-codes could be grouped together [23], then produced a preliminary list of domains describing the predominant ways interviewees experience respect or a lack thereof in healthcare, which were sorted by whether the domain focused on individual versus organizational actions. These domains were further refined through discussion with the full author team. We did not identify major distinctions between sub-groups of interviewees and therefore present results collectively, except where Spanish speakers discussed language and interpretation, as noted in the results below.

Throughout our analyses, the author team sought to reflect on our positionality, recognizing that our situatedness cannot fully be separated from our analyses. The author team included women and men based in Seattle, WA and Denver, CO with professional backgrounds in medicine, law, and bioethics at a range of career levels, including some who were directly involved with the CHARM study and others who were not. The first author is a mixed-race, native English-speaking cisgender woman attending medical school. The senior author and principal investigator is a White, native English-speaking cisgender woman trained in law and bioethics who was also a co-investigator on CHARM involved in patient stakeholder activities.

Interviewee characteristics

We conducted 40 interviews out of 71 invited (56%); of those who were invited but did not complete an interview, four actively declined, citing lack of time or interest, ten scheduled an interview but did not answer when we called to conduct the interview and did not respond to requests to reschedule, and the remainder did not respond to our email or phone outreach attempts. One-quarter of our interviews were conducted in Spanish. Most interviewees identified as female (88%) and either Hispanic/Latino(a) (43%) or White or European American (38%). Detailed demographics are shown in Table 2. Interviewees identified a range of activities at the individual and organizational levels that demonstrated respect in healthcare.

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Table 2. Interviewee characteristics (n = 40).

https://doi.org/10.1371/journal.pone.0250999.t002

Individual efforts

Interviewees described two overarching types of activities that demonstrate respect from individual clinicians: engaging with patients and being transparent. Exemplar quotes are shown in Table 3.

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Table 3. Exemplar quotes–individual efforts that demonstrate respect in healthcare.

https://doi.org/10.1371/journal.pone.0250999.t003

Organizational efforts

Interviewees described five types of organizational efforts that show respect: promoting safety and inclusivity, protecting patient privacy, communicating about scheduling, navigating financial barriers to care, and ensuring continuity of care. Exemplar quotes are shown in Table 4.

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Table 4. Exemplar quotes–organizational efforts that demonstrate respect in healthcare.

https://doi.org/10.1371/journal.pone.0250999.t004

Discussion

This exploratory qualitative study highlights individual and organizational efforts that may demonstrate respect to patients. Our findings emphasize the importance of respectful clinical relationships, as well as the interconnectivity of individual and organizational healthcare actors with regard to conveying respect in a way that promotes access to care and patient safety.

Our findings reaffirm work in other settings, as well as existing ethical guidelines for building mutually respectful clinician-patient partnerships [24], that have identified individual efforts toward communicating with empathy and honesty as central to respect. Prior studies have shown that patients perceive respect in clinical relationships when they are listened to, treated with honesty, and treated as “a person” and “an equal” [11,15,25]. As Beach and colleagues emphasize, patients understand “respect for persons” to be inclusive of, but broader than, simply respecting autonomy and obtaining informed consent. Our findings are similar; engagement and transparency were described as elements of respectful clinical relationships in their own right, but sometimes were also framed as key underlying factors to support informed decision-making about treatment options [26]. This supportive role of interpersonal relationships aligns with Ubel and colleagues’ description of the physician’s role in promoting patient autonomy by educating and helping patients “align their choices with their values” [27]. These impacts on relationships and decision-making illustrate that it is essential a patient feel respected by their clinician to effectively engage as a member of their healthcare team and feel empowered to advocate for themselves.

While clinicians’ actions are necessary to show respect, our findings suggest that respect is not always fully realized through individual actions. Organizational actions are integral to patient-perceived respect and may inform how interpersonal relationships take shape. Our findings highlight the critical role of institutional policies and procedures in supporting the development of collaborative, respectful relationships. Policies and procedures can create accessible opportunities for relationships to form by supporting and improving continuity of care, ability to schedule, and financial access, and can ensure patient safety by drawing boundaries on discriminatory behavior and privacy violations.

The impact of individual as well as organizational actions on patient-clinician relationships described by our interviewees has implications for how we might think about access to care. Access includes considerations of cost and affordability, and the extent to which clinicians can form meaningful connections with their patients that support patients’ willingness and ability to seek medical care [28]. Our findings related to individual actions that promote strong relationships and institutional policies that ensure patients can comfortably seek care suggest that patient-perceived respect may play a role in ensuring meaningful access to care. That is, an organization that works to embody a culture of respect may be more accessible to patients, insofar as it both supports respectful clinical relationships and promotes patient comfort. This is especially important for patients and communities who have historically lacked meaningful access to care and suffer negative health outcomes as a result. Future research should examine how respectful relationships affect access to care and health outcomes in different communities [29–34].

Our findings also highlight an overarching theme of patient safety, or protecting patients from harm [35], that is embedded within patient-perceived respect. Prior work on patient safety has focused on medical and administrative errors such as prescribing the wrong medication or breaching patient privacy [36,37]. Our results echo the importance of physical safety and privacy as elements of respect, but also underscore the necessity of psychological safety and comfort. A respectful patient-provider relationship may contribute to a sense of safety and comfort that patients will be treated by someone who knows them and their medical history. Further, our findings related to promoting inclusivity highlight the importance of psychological safety that for some interviewees was entrenched in feeling welcome and included in a healthcare setting. Some of our interviewees described having personally experienced, or having loved ones who had experienced, outright discrimination based on observed or presumed characteristics (e.g., skin color or gender), and several also discussed experiences feeling looked down on for characteristics including their weight or their status as a smoker, facing structural inequities such as a lack of appropriate translation or interpretation support, or experiencing more subtle forms of bias during activities like appointment scheduling. These examples illustrate that discrimination, racism, and other forms of bias in healthcare operate on both an interpersonal and structural level and warrant focused attention and decisive responses at each level. They also highlight a need for institutional policy efforts to incorporate attention to structural inequities like lack of access to high-quality translations and financial barriers to care, and to protect patients from subtle discrimination that occurs through microaggressions, or “brief and subtle” messages that “ambiguously disempower racial minorities” [38] and other historically marginalized social groups [39]. Additionally, cultural differences in patient-perceived respect should be recognized, and future research should examine cultural considerations for showing respect in healthcare.

Clinical implications

Our findings highlight opportunities for clinicians and healthcare organizations to thoughtfully consider how they approach demonstrating respect for patients. Clinicians should enter patient interactions with a clear intention to build respectful partnerships and view each patient as a unique individual. Healthcare organizations should consider how to demonstrate respect for patients through their policies and practices, incorporating the perspectives of patients and community members to the extent possible. In particular, equitable access to care should be a priority, meaning that organizations should consider ways to address financial barriers, ability to schedule, and equity in appointment timing. Further, organizations should acknowledge the role of respect in promoting meaningful access to care and evaluate the relationship between improved experiences of respect and actualized access. Healthcare organizations should also prioritize responses to, and prevention of, discriminatory or biased behaviors among clinicians and staff, by implementing anti-racist and anti-discrimination policies and requiring ongoing education for members of their workforce about various forms of bias and their impact on patients. Finally, individual clinicians and organizations should seek out and be responsive to feedback from patients about how best to build a patient-centered culture of respect, for example by working to develop ongoing relationships with patient and community advisors. These efforts will require investment of time and resources, and some may require making trade-offs, but the role of patients’ experiences of respect in building clinical partnerships and promoting positive health outcomes suggests it is important to think critically about how to demonstrate respect in primary care settings.

Limitations

This study has some limitations. Interviewees were patients at two clinical institutions with limited demographic diversity, with most identifying as female and either Hispanic/Latino(a) or White or European American, and only included English and Spanish speakers. Patients who receive care at other institutions, have different demographic characteristics, and/or speak other languages may have different perspectives. Additionally, interviewees were enrolled in an ongoing research study about hereditary cancer risk, which may have influenced their perspectives about their healthcare institutions. The fact that all interviewees had agreed to participate in a research study also raises the possibility that some individuals with negative experiences may not have been enrolled, and therefore interviewees may not represent all viewpoints.