Health disparities and discrimination toward lesbian, gay, bisexual, transgender, queer and other sexual and gender minority (LGBTQ+) individuals is well documented (Casey et al., 2019; Institute of Medicine, 2011; Kahn et al., 2018; Lick et al., 2013) (see Table 1 for further definitions). Two important factors contributing to health disparities in LGTBQ+ populations include lack of knowledgeable health care providers (HCPs) and fear of discrimination in the health care setting (Casey et al., 2019; Institute of Medicine, 2011; Kahn et al., 2018; Lick et al., 2013).

Table 1. Terminologya Adapted from Yingling, Cotler & Broholm (2021)

A survey of LGBT residents of New Jersey found that 41% of White, 47% of Black/African American, and 65% of Asian individuals reported their access to care was limited by HCPs who refuse to provide services to LGTBQ+ patients (Qureshi et al., 2018). Health care providers who are willing to care for LGBTQ+ patients often lack the knowledge and background to provide evidence-based care (Nowaskie & Sowinski, 2019; Schabath et al., 2019). This dearth of LGBTQ+ competent providers may be due to several factors. There is a lack of LGBTQ+ content in medical and nursing schools (Greene et al., 2018), lack of medical and nursing faculty who feel comfortable and prepared to teach this content (Aaberg, 2016; Gentile et al., 2020; Lim et al., 2015; Shaver et al., 2019), and poor-quality educational resources to teach about LGBTQ+ populations (de Guzman et al., 2018).

This scarcity of HCPs willing and knowledgeable to care for the LGBTQ+ communities has prompted interest in the development of curriculum and specialized training programs. One such program in the northeast is a postgraduate fellowship for nurse practitioners (NPs) in LGBTQ+ health (Trossello, 2020). The fellowship curriculum is based on the current evidence regarding health care of LGBTQ+ people and the principles of patient-centered care. To inform the training of NPs to provide care to these communities and to specifically inform the development of this fellowship, we asked our patients how their providers can best meet their health care needs.

The Culturally Congruent Care Model (CCCM) (Schim et al., 2007) provided theoretical underpinnings for this study. The model aims to provide health care professionals with a simple, stepwise framework of the concepts of diversity, awareness, sensitivity, and competence (Schim, et al, 2007)). In the model, CCC is seen as "a holistic construct and heavily influenced by negotiated experiences, meanings, mutual understandings, and respect[horizontal ellipsis]and, according to Leininger, is best understood[horizontal ellipsis]using naturalistic methods of inquiry to examine client and provider interpretations of their interaction" (Schim, et al, 2007 p. 105). The CCCM aligns with the purpose, questions, and methods of the study reported here.

Purpose

The purpose of this study was to describe LGBTQ+ patients' experiences with, and preferences for care by, their primary care providers (PCPs). This information may be used to inform the training of NPs to care for the LGBTQ+ communities. The research questions were: How do patients describe their experience of care by their PCP? What are patients' preferences for care by their PCP? And what aspects of patient care by their provider could be improved?

Methods

Design and approach

This study used qualitative methods and focus groups to gain insight into the health care preferences of patients at an LGBTQ+ health center. The study was approved by a university Institutional Review Board. The study team consisted of clinicians, nursing educators, and researchers, two with extensive experience in qualitative research. The focus groups were facilitated by four NPs who worked at the study data collection center and had over 40 years of combined experience providing primary care. Three of the facilitators identified as LGBTQ+ and one as an ally, and three identified as White and one as African American.

Setting, sample, and recruitment

The setting for the study was an LGBTQ+ community health center in a large city. The focus groups were conducted virtually through Zoom. Inclusion criteria were as follows: 18 years or older; self-identified as LGBTQ+; received health care at this health center within the past 4 years; conversant in English; and able to join a Zoom meeting from a private location.

Participants were recruited via convenience sample through flyers at the center's three locations, the health center's social media platforms, referrals from providers, and patient-patient word of mouth. On the flyers and social media, a link connected interested patients to an enrollment form in REDCap, a secure encrypted platform, through which demographic data were collected, and participants were given a brief explanation of the study and the consent form.

Participants who submitted the enrollment instrument were then called by the principal investigator (PI) who further explained the study, discussed the risks and benefits of participation, answered questions, and ensured that eligibility criteria were met. Those who still expressed interest (and all did) were asked to sign the consent form via the secure platform and to choose an alias to protect their privacy. The aliases were used during the focus groups and throughout data analysis. Participant numbers (indicating which focus group and the enrollment form number) were then used to report any findings. Only the PI had access to RedCap and the ability to connect the alias and participant number with the participant's name.

Data collection

Focus groups of six to eight participants were conducted via Zoom in December 2020 and January 2021. Each focus group lasted 90 minutes and was facilitated by the PI and one other member of the study team. The schedule was such that neither of the facilitators had cared for the participants in their focus group.

The facilitators opened the focus group with everyone introducing themselves, their pronouns, and their favorite color to break the ice. A script of open-ended questions and prompts was used and mutually refined by the facilitators after the first focus group to provide clarity and less overlap in the questions (Figure 1). The facilitators debriefed after each focus group, and the PI kept notes throughout the process. The focus groups were video and audio recorded, stored directly into a secure web platform, and transcribed by a professional transcription service with HIPAA certification. The transcripts were then uploaded into Dedoose (version 8.3.45) to which all facilitators had access as well as one of the expert qualitative researchers.

Figure 1. Focus group discussion guide.

Analysis

The data were analyzed according to the six phases of thematic analysis described by Braun and Clarke (2006). In phase 1, the PI compared each transcript with the video and audio recordings to ensure accuracy as well as immerse herself in the data. The other facilitators then reviewed the transcript of the first focus group that had been uploaded into Dedoose in preparation for phase 2: Generation of initial codes. The first focus group was coded collaboratively by all four focus group facilitators and then reviewed by the PI who checked for redundancy and missing codes. The four facilitators then together agreed on the initial codes. The three remaining focus groups were then coded and reviewed by different team members. All suggestions were brought back to the facilitators for discussion, and the final codes were refined through consensus. Phase 3: Searching for themes began as the facilitators and expert qualitative researcher reviewed the codes and grouped them together into categories to identify potential themes. In phase 4: Refinement of the themes, the facilitators reviewed the categories and initial themes in relation to the whole data set in an iterative process in which movement back and forth between data, the codes, categories, and themes took place (Braun & Clarke, 2006). In this process, the themes were collaboratively refined. Then, through discussion, re-review of the transcripts, the main themes were defined and finalized (phase 5). In phase 6, the final report with thick description was written. Data saturation was not sought because the goal was to capture the participants' unique perspectives and experiences rather than develop a theory (Bradshaw et al., 2017).

Strategies to promote rigor (trustworthiness)

Several strategies, as described by Bradshaw et al. (2017), were implemented to ensure trustworthiness and rigor of the study. Credibility was ensured by establishing rapport with participants and creating an empathic environment, both in the initial individual conversations with potential participants and within the focus groups. Additionally, the video-recordings of the focus groups were reviewed to ensure accuracy of the transcripts.

Confirmability was established through detailed notes documenting the discussions and decisions made by the study team during data analysis. Additionally, direct quotes from participants support confirmability by staying close to the data (Bradshaw et al., 2017; Sandelowski, 2010). An audit trail promoted dependability that the findings were consistent and can be repeated. Transferability was established through direct quotes and thick descriptions such that others can determine if the findings are applicable in other settings (Bradshaw et al., 2017).

Results

Sample

Thirty patients filled out the enrollment form, and all 30 consented and registered for a focus group. The final sample was 28 participants because two were unable to attend at the last minute. Over 60% were younger than 40 years and none were 60 years or older. Forty-two percent identified their gender identity as being other than their sex assigned at birth (see Table 1 for definitions of terms used). The question for race and ethnicity allowed people to choose multiple identities and therefore were not mutually exclusive categories. Refer to Table 2 for the specific characteristics of the participants.

Table 2. Demographics

Overview of the results

Overall, the participants' experiences with their provider at this health center were positive. Suggestions for improvement were mainly related to systems issue and not in terms of the providers and care they received. When they did share provider attributes that they did not like, the participants generally described providers they had encountered in other health care settings.

The codes were grouped into four categories: positive provider qualities, negative provider qualities, positive clinic qualities, and negative clinic qualities. The focus of this report will be on the provider qualities, desirable and undesirable, to elucidate what these LGBTQ+ patients preferred in their PCP. Ultimately, the analysis resulted in four overarching themes. Direct quotes are provided to best articulate patient experiences with minimal editing for clarity and to remove any identifying information. See Table 3 for additional quotations.

Table 3. Themes and Additional Quotations

Theme 1: "Ditch the white coat"

A common theme among the four focus groups was a desire to have a provider who did not approach patients with an air of superiority. The term "white coats" specifically came up in two groups and referred to an attitude of superiority (not necessarily to wearing a white coat). An aspect of the "white coat" persona is arrogance:

"[horizontal ellipsis]that's an image for me, those white coats. They feel like, 'Oh, I spent half a million dollars on this, so I must know everything about health care,' which leads to not asking questions and making the assumptions. Overall they think they know better about everything instead of talking to someone, maybe using their knowledge to think about, okay, what could actually be wrong with this person[horizontal ellipsis]" (FG3-23).

Overwhelmingly, participants did not want to see a provider who embodied this persona.

Primary care providers who had "ditched the white coats" were noncondescending, nonshaming, nonjudgmental, and respected the patients' agency and knowledge of their own bodies. What the participants wanted in their provider was respect and a balance of power.

"I'm able to openly speak to the provider, and I've always received an equal amount of respect back[horizontal ellipsis]I'm able to have a conversation with my provider in a way that is comfortable for me. I don't feel threatened by him, [or] his power[horizontal ellipsis]" (FG2-28).

Participants liked when their provider empowered them and gave them a sense of control over their health and health care decisions.

"I just felt a level of compassion and care, that the provider was listening to me and my concerns[horizontal ellipsis]they were able to provide a lot of knowledge and made that more of an open conversation as opposed to them maybe spewing knowledge or shutting me down with any questions. I think that approach has given agency in me taking care of my health that I feel supported and can use the practitioner's guidance to do that." (FG1-8).

This was echoed by many of the participants, wanting a provider who listens, respects, and empowers them. Patients wanted someone who was knowledgeable, but not all knowing:

"[horizontal ellipsis]he is incredibly knowledgeable, so we can have a conversation, and he isn't threatened by the fact that I might have done some research ahead of time or maybe have some thoughts about my treatment. He really has empowered me to do that. He's not one of those doctors that is like, 'No. I'm the doctor, and I'm gonna tell you what's gonna happen, and you're gonna accept it[horizontal ellipsis]" (FG2-16).

Theme 2: "Meets me where I am"

The theme "Meets me where I am" refers to understanding the patient and seeing them as individuals. Participants appreciated a provider who understood their unique needs and centered around the patient's agenda rather than pushing their own. This collaborative approach helped to keep patients engaged in care. As FG1-7 explained, their provider:

"sticks with you even when you're not really holding up your end of how you're supposed to be taking your own care[horizontal ellipsis]They work with you, so you don't have to be worried about coming back even if you didn't do the thing you were supposed to do the last time you talked."

Conversely, one participant became annoyed and felt a barrier to their relationship when a provider at this health center kept suggesting a treatment they were not interested in.

The establishment of a collaborative approach is closely related to ditching the white coats: The conversation was 2-way, and the patient was empowered to make decisions about their own care. One participant explained:

"[horizontal ellipsis]we both kind of came to a plan together, which I felt was really good that they were able to take my concerns and my decisions into consideration in conjunction with their expertise to really come up with a plan that I felt comfortable with, that I would actually follow[horizontal ellipsis]" (FG1-8).

To partner in decision making regarding their health, participants desired providers who were knowledgeable and offered clear explanations:

"I want to know what their suggestion is and give me information, but I also want them to be open enough to be like, 'Okay, I would suggest this. This is another option,' and be able to explain that in plain terms and also give me space if I need to sleep on it or think about it and not feel pressured[horizontal ellipsis]" (FG4-19).

Another important aspect of being able to collaborate with the patient was the provider not making assumptions. Some patients described instances of assumptions being made by providers at this health center in which the provider and clinic staff assumed a gender identification based on medical interventions:

"[horizontal ellipsis]at my first visit, everyone was using he, him pronouns for me, and I was like, oh, 'cause I am on T (testosterone). I have a deep voice, but I'm like, gender is stupid[horizontal ellipsis] if you'll just look on the paper, you will see that I don't use that." (FG3-31).

Theme 3: "The relationship is key"

A third theme was the importance of the provider-patient relationship and the connection that patients felt with their PCP. Provider qualities that facilitated this relationship were being caring, compassionate, personable, and a good listener. It is easy to list these qualities; however, in practice, it requires actively engaging and listening:

"[horizontal ellipsis]listen to me. It sounds like a cliche, but it took me over 20 years to find a doctor, and I finally did find that doctor [here], that listened to me, that didn't rush me, that looked me in the eye[horizontal ellipsis]" (FG4-25).

The relationship goes beyond specific provider qualities; it was also the connection with the patient:

"[horizontal ellipsis]that bond is really important, whether it's because you share certain demographic information or because that person always remembers this weird thing about you and asks how it's going[horizontal ellipsis]building that rapport and that trust so that you feel comfortable saying to [your provider] 'Hey, this is going on. Is this okay?'[horizontal ellipsis]" (FG2-16).

Participants expressed a desire to be seen, heard, affirmed, and appreciated. Being seen as an individual was part of the establishment of the bond to form the therapeutic relationship. As one participant summed up for the group:

"I just feel like I agree with so many of you all, that it's just about the relationship. For me, it's about the relationship, the appropriate, compassionate friendship and relationship in the room between the patient and the provider. That's where the truth lies, and that's where the help can start." (FG4-25).

All participants agreed with the importance of the relationship; however, there were differences regarding provider self-disclosure. Some participants found it helped the relationship, whereas others preferred not to know details of their provider's life or whether they were having a bad day. Regarding relationships overall and how that bond was formed, one participant noted:

"It just reminded me of my mom, who was a teacher for 25 years. You don't teach every student the same way, and it's the same thing with treating care. Everyone has different needs. Everyone has different communication styles[horizontal ellipsis]. There is not one single formula for every patient, just like there's not any one single formula for every student." (FG4-19).

Theme 4: LGBTQ knowledge and comfort

The ability to be honest and open with their PCP was highly valued. Participants wanted a provider who was not only knowledgeable about LGBTQ+ health care but also comfortable with LGBTQ+ folk. There were a couple of key aspects to this. One was that the patient does not need to be in the position of teacher "[horizontal ellipsis]it's also incredible to have a provider who understands trans health care. I don't have to be the teacher as I'm asking for care." (FG1-2).

Participants expressed relief in being in an LGBTQ+ friendly environment and the ability to be honest, ask questions, and discuss their concerns without having worry about stigmatization. Knowing that they were seeing a provider that was LGBTQ+ friendly and accepting of their sexuality or gender identity resulted in a level of comfort that was key to receiving appropriate care. One participant when discussing his anal pain, said "[horizontal ellipsis] it was such a relief because, in the past, if I had to go into a primary doctor that was probably a straight man, I would have been humiliated to address the problem that I was having." (FG3-24).

Many of the participants described themselves as having a lot of anxiety and how being in this health center made them feel comfortable and at ease. This was related to how their provider and nonmedical staff made them feel comfortable as well as being in an explicitly LGBTQ+ health center so participants knew it would be an accepting place. "I couldn't talk about sex toys with my previous doctors. No way. I just didn't talk about those things[horizontal ellipsis]Finally, I get [here], and I can say what's really going on" (FG3-20).

Assumptions of heterosexuality and gender conformity were noted as barrier to receiving appropriate care. When a HCP outside of this center asked one participant whether they were sexually active and they responded affirmatively, the provider insisted that they needed to do a pregnancy test. "It didn't remotely cross their mind that I was engaging in an act that would not lead to pregnancy[horizontal ellipsis] and then it got really awkward[horizontal ellipsis]" (FG3-31). The problem with making assumptions is also echoed in the other themes as well.

When participants discussed negative health care experiences, one commented that he had listed Truvada (preexposure prophylaxis for prevention of HIV) as one of his medications when seeing a radiologist outside of this health center. The radiologist "just looked at me with such disgust. I have never been looked at that way by a medical professional in my life. I'm a pretty self-positively, self-actualized person normally, and it just really gutted me to my core" (FG2-16). He reported that, in the future, he would not disclose taking this medication outside of an LGBTQ+ health care environment.

A fellow participant noted that this nondisclosure resulted in a barrier to care and that if a patient is afraid to be fully honest and fears discrimination, it could have negative health consequences. To avoid being confronted with stigma or discrimination, participants reported having avoided seeking medical care in the past.

"I like the diversity of the LGBTQ representation [here], but it's also people here are well trained in providing sensitive care. I've had experiences, and also my friends, where we actually avoided care for years, like neglected our own health because of traumatic experiences at other providers. When I discovered [this health center], I was like, where have you been all my life?" (FG4-19).

Discussion

Positive provider qualities described in terms of the negative

Many of the PCP qualities that the participants in this study wanted were expressed in terms of the negative: nonjudgmental, noncondescending, nonshaming, not making assumptions. This is the vantage point from which many LGBTQ+ patients have experienced care by health professionals-being judged, shamed, condescended to, and assumptions being made about who they are and who they love (Casey et al., 2019; Institute of Medicine, 2011; Jaffee et al., 2016; Logie et al., 2019; Snyder, 2019). Although these qualities are wanted by all patients, how they are framed is important to note. Instead of saying they want someone "openminded, who listens to and respects" them, these patients come from the experience of being judged and shamed. This is specific to being LGTBQ+.

One cannot examine care for the LGBTQ+ communities without acknowledging present negative societal attitudes and bias as a barrier to care. Numerous peer-reviewed articles describe LGBTQ+ patients' experiences seeking health care and the discrimination and stigma that they have experienced by HCPs (Daly & Champion, 2020; Howard et al., 2019; Human Rights Campaign Foundation, 2018; Jaffee et al., 2016; Kamen et al., 2019; LaVaccare et al., 2018; Logie et al., 2019; Rossman et al., 2018; Samuels et al., 2018; Snyder, 2019; Stroumsa et al., 2019). Disclosure of LGBTQ+ status creates a challenging paradox: Assumed heteronormative and binary gender conformity can be stressful for patients fearing discrimination (LaVaccare et al., 2018; Rossman et al., 2017), and the consequences of nondisclosure can result in inadequate care and omission of important preventive health services (Stupiansky et al., 2017). The participants in this study confirmed previous findings: stigma and even the anticipation of bias can result in a barrier to health care. This is particular to LGBTQ+ patients and other marginalized communities that face bias and discrimination.

Indicators in health care settings that signal to patients that it is an LGBTQ+ friendly environment are key to reducing anxiety and help to promote more honest disclosure on the part of patients (American Medical Association, n.d.; The Joint Commission, 2011; The National LGBT Health Education Center, n.d.). However, simply having posters in the waiting room representing LGBTQ+ people is not enough. Providers need to self-reflect on their own biases when working with patients that have been marginalized (Aleshire et al., 2019; Mehta et al., 2018; Nowaskie & Sowinski, 2019) to ensure that their actions do not harm their patients. As the participants in this study confirmed, an important element of "ditching the white coats" is providers minimizing the power imbalance between themselves and their patients and exploring their own biases and blind spots to become more accepting, affirming, and not make assumptions about patients.

As NPs with more than 40 years of combined practice, we have experienced patients who present as defensive, guarded, and sometimes even hostile, perhaps making us feel defensive. Listening to our patients' experiences and understanding the dynamic of bias and stigmatization can help providers not take a defensive posture in this situation. Instead, it is helpful to ask, what has led this patient to be so defensive (hostile or withdrawn)? What hurt have they experienced that informs their expectation of what is going to happen in this encounter? Seeking to understand rather than react and asking patients what they need can help to change the dynamic.

LGBTQ+ knowledge and comfort

Didactic and clinical training in LGBTQ+ health is an area in which most nursing, NP, and medical training programs fall short. Little time in content heavy training programs is spent on LGBTQ+ health (Cornelius et al., 2017; Dorsen & van Devanter, 2016; Lim et al., 2015; Manzer et al., 2018). And although some studies suggest an increasing acceptance in the United States of gay, lesbian and bisexual people (Pew Research Center, 2017), there is still considerable misunderstanding and stigma for all LGBTQ+ people and increasing assaults on transgender and gender nonbinary freedoms and civil rights (Bailey, 2022; Krishnakumar, 2021; Lavietes, 2022; Levin, 2021). As noted by other researchers, participants in this study would like a PCP who is knowledgeable regarding LGBTQ+ health and comfortable with LGBTQ+ people.

Patient-centered care

Much of what patients in this study wanted in their PCP are key elements of patient-centered care. The Institute of Medicine defined patient-centered health care as "[p]roviding care that is respectful of and responsive to individual preferences, needs, and values and ensuring that patient values guide all clinical decisions." (Agency for Healthcare Research and Quality, n.d.). Diversity, awareness, sensitivity, and competence are the foundational pieces of culturally congruent care and align with the IOM definition of patient-centered care. Patient-centered care is best achieved through a culturally congruent care lens. What these participants add to the IOM description of patient-centered care is a shared power balance, which is implied, however, is not explicit. Additionally, knowledge regarding the health care needs of LGBTQ+ patients and being accepting and affirming is key to being able to provide patient-centered and culturally congruent care to this diverse community.

There are barriers to the provision of patient-centered care at multiple levels in the health care system (Sinaiko et al., 2019). On the provider level, provider attitudes, concerns regarding time constraints, and lack of training to negotiate patient preferences are cited as some of the barriers (Sinaiko et al., 2019). The participants in our study offer some insight into what NPs can do to engage with patients to provide patient centered care specifically to the LGBTQ+ communities: Ditch the white coats; share power in the relationship and respect the patients' agency over their own health; meet them where they are; listen to; affirm; engage in a relationship that enables the patient to honestly share what is important to them; and learn about LGBTQ+ health and specific health care needs.

Limitations

As this was a small study, conducted specifically with patients already receiving care in an LGBTQ+ health center, it may not be generalizable to LGBTQ+ patients in other contexts. Further, the flyers and social media announcements recruiting participants were framed in asking for help ("We Need You to Help Us Provide Better Health care"). This may have created a biased sample weighted toward participants who felt positively about this health center and wanted to "give back". Participants also needed access to either a computer or smart phone and the ability to join from a private location, thereby limiting the participation of those who were more marginalized, in unstable housing, or more unpredictable circumstances.

Another limitation is that there were no participants older than 60 years. This may be due to the study being conducted during the COVID-19 pandemic when older patients may have been less likely than younger patients to opt for in-person visits and therefore less likely to see the recruitment flyers. Additionally, older patients may have been less likely to see the social media postings regarding the study.

Another possible limitation of this study was the use of focus groups as opposed to individual interviews for data collection. Group members may have been influenced by other participants, felt uncomfortable sharing opposing opinions, or been reluctant to share sensitive information (Gill & Baillie, 2018; Guest et al., 2017).

The intention was to have some homogenous focus groups according to self-identified demographics when the study was initially conceived. Previous studies have shown that LGBTQ+ BIPOC (Black, Indigenous, people of color) and transgender/gender nonbinary individuals experience an excess burden of stigma and discrimination as compared with their White and cisgender counterparts (Howard et al., 2019; Kuehn, B.M., 2022; Macapagal et al., 2016; Wilson et al., 2022). Focus groups in which the participants had a shared racial or gender identity might have enabled more candid discussion of health care needs regarding congruence with the provider or experiences of racism or transphobia. A few participants expressed delight in seeing themselves reflected in the staff at this health center and one participant who identified as Black shared how powerful it was to have a Black queer provider for the first time. This may have been a more prominent theme had the groups been more homogenous. Due to scheduling issues and time constraints, creation of homogenous groups did not happen. Given the importance of considering the intersection of race, ethnicity, and gender identity, this was a limitation of this study and is an area for further exploration.

Conclusion

The study findings affirm the importance and feasibility of asking our patients what they want in their health care. The results of this study will inform the training of NPs to care for LGBTQ+ patients in an LGBTQ+ NP Fellowship and in NP educational programs. It also adds to the limited body of literature that specifically asks LGBTQ+ patients what they prefer in their PCP and confirms much of what had been previously found.

Listening to our patients can provide important insights and clinical pearls. At the end of each focus group, the participants were asked to give advice to a new provider who would be caring for the LGBTQ+ communities. There was wisdom and compassion in what they had to offer. One participant summed it up very well:

"[horizontal ellipsis]learn something new, ask questions, and leave your preconceived notions at the door. I think every patient deserves unique care. I believe that each person deserves to have a specific conversation with their primary-care [provider] about what they need and how they can be supported. I feel like, regardless of how people identify, I think each individual person deserves their unique care". (FG2-28).

Author contributions: Statement of authorship: C. Broholm conceived the research project in conjunction with D. Lindell and A. Radix and led data collection and analysis, interpretation of the results, and writing the manuscript. D. Lindell worked closely with C. Broholm to develop the proposal, secure IRB approval, analyze the data, interpret the results, and prepare the manuscript. D. Radix and M. Quinn Griffin provided feedback, consultation, and editing on the proposal and the manuscript. C. Trossello was involved in patient recruitment, data analysis, and interpretation of the results, co-led focus groups and edited the manuscript. B. Smith and J. Lauren co-led focus groups, were involved in data analysis and interpretation of the results, and edited the manuscript. A. Harris consulted on qualitative methodology, participated in data analysis, and edited the manuscript. All authors approve the manuscript as submitted for publication and agree to be accountable for the integrity of all aspects of this research project.

References