Black Women’s Psychosocial Experiences with Seeking Surgical Treatment for Uterine Fibroids: Implications for Clinical Practice

Background Black women are disproportionately impacted by uterine fibroids and are more likely to undergo surgical treatment for fibroids compared with non-Black women. However, few studies have characterized the psychosocial experiences of Black women seeking treatment for fibroids. This study aimed to identify factors that shape Black women’s fibroid management decisions; explore how discrimination based on race, class, and gender feature in treatment-seeking experiences; and compare experiences by age and socioeconomic status (SES). Methods We conducted semi-structured interviews with 37 Black premenopausal women, undergoing either a hysterectomy or myomectomy for fibroids at an academic medical center. We used a thematic analysis to code transcripts and identify themes. Results Participants were predominately single, highly educated, and privately insured. Respondents reported that patient-doctor interactions, support from social networks, fertility consequences, and fear of fibroid malignancy influenced their fibroid management decisions. Their knowledge and perceptions of fibroids were also influenced by social and community norms and differed by SES; women of higher SES had greater fibroid awareness than women of lower SES. Discrimination was discussed in the context of historical inequity against Black women, with one participant questioning whether Black women were valued less in clinical settings compared with non-Black women. While several women discussed positive experiences seeking fibroids care, others expressed medical mistrust or said that alternative management options were not offered by clinicians. Conclusions Fibroid management decisions were influenced not only by individual-level interactions with clinicians and social networks, and concerns about fertility and fibroid malignancy, but also by broader social and historical conditions. These findings suggest that clinicians should deliver culturally-competent gynecologic care that centers the voices of Black women and acknowledges the diverse perspectives and perceptions that Black women may have when seeking fibroid treatment.

impacted by fibroids, often experiencing an earlier age of onset and more severe morbidity. 1,3 Although hysterectomy is the least preferred procedure for fibroid treatment by women regardless of fertility intentions, 4 and Black women are generally more opposed to surgical management compared with non-Black women, 5 Black women are still more likely to undergo surgery for fibroids. 3 Little is known about the factors that drive fibroid management decisions from the patient perspective, or how these factors may differ across and within racial/ethnic groups. A few studies have evaluated associations between patient characteristics and treatment procedures, 6,7 however, they did not capture the psychosocial context within which women make management decisions.
Furthermore, prior studies did not examine how patient-provider communication, community norms, or social structures (e.g., institutional discrimination) influence management choices. These factors are important given the growing body of social science research that suggests experiences in healthcare settings extend beyond individual-level interactions, and are also shaped by intersecting social conditions. 8−10 To address these empirical gaps, we conducted a qualitative study among Black women undergoing either myomectomy or hysterectomy for fibroid management. We investigated three research questions: (a) what are the factors that influence Black women's fibroid management decisions, (b) how do issues of discrimination by race, sex, and class manifest in their treatment-seeking experiences, and (c) how do Black women's experiences vary by age and socioeconomic status.

Methods
Study Population. We recruited women into a clinical epidemiologic study on uterine fibroids from 2014-2017 at a medium-sized, urban university medical center in the Washington D.C. metropolitan area. Eligible women were English speaking, premenopausal, non-pregnant, ≥ 18 years of age, and undergoing either myomectomy or hysterectomy at a specialty surgical clinic for fibroid management.
Of the 68 women approached about the study, 90% consented to participate (n = 61). The appropriate sample size in qualitative studies is generally guided by the principle of "saturation," or the point at which no new themes or findings are noted. 11 Estimating sample size depends on various factors including the study design and quality of the data, and can include as few as 6-10 participants. 12 Based on these factors, we estimated that a sample size of at least 30 participants would be sufficient to obtain rich contextual data on Black women's experiences seeking fibroid treatment using qualitative methods. 12 Our sample consists of 37 self-identified Black/African American women who completed the qualitative interview component of the study. The mean age of our sample was 38.8 years (range , and approximately half of the women were nulliparous. The majority of participants were single, privately insured, had at least a college degree, and were undergoing hysterectomy ( Table 1). Information about fibroid burden (e.g., number of fibroids, uterine volume) has been characterized by our study team and is published elsewhere. 13 Procedures. Because participants were enrolled in the study over three consecutive years, we chose a semi-structured interview approach to minimize variation in the questions posed to interviewees, and ensure that data obtained for each participant were systematic. 14 Trained female research assistants (3 Black, 1 Latina, 1 White) conducted interviews either over the phone or in a private space at the medical center, and utilized a semi-structured interview guide to elicit conversation about pertinent topics while allowing flexibility for patients to share their experiences . 14 The open-ended interview   guide included questions about women's experiences with receiving a fibroids diagnosis, their   perceptions about risks associated with fibroids, their interactions with clinicians for fibroids diagnosis and care, and the influence of their social networks on fibroid management decisions. Sample interview questions included: "How did you discover you had fibroids?"; "Were you aware of fibroids as a risk before you learned you had it?"; "How has their (clinicians) advice worked for you?" and "Are there ways that you get support from friends and family about your condition?" The average length of each interview was 11.28 minutes (range 2.53-25.49). We also administered a standardized questionnaire to obtain demographic information such as educational attainment, and reviewed participant medical records to confirm age, menopausal status, insurance coverage, and presence of fibroids. All women provided written informed consent prior to being interviewed. The study was approved by the Institutional Review Board at the George Washington University.
Data Analysis. Interviews were audio-recorded and transcribed verbatim with original recordings preserved for reference. In most cases, interviews were transcribed by the research assistant who conducted the interview to ensure that transcribed interviews were consistent with recalled conversations. All audio-recorded interviews and transcripts were independently reviewed once more by two research assistants for quality assurance.
We conducted a thematic analysis to develop codes and identify themes. Thematic analysis is a strategy used to identify, analyze, interpret, and report patterns in qualitative data. 15 The first author thoroughly read the transcripts at least twice to become familiar with the data. Guided by the research questions, we developed a preliminary codebook with initial codes (e.g., patient-doctor communication, race) and documented theoretical and reflective thoughts for each transcript. We then imported complete transcripts into NVivo 10 (QSR International), a qualitative data management software. The first author individually coded each transcript line-by-line, guided by the preliminary codebook and the research questions. Additional codes (e.g., patient expectations, what is normal) were developed using an inductive, iterative approach. We reviewed and refined coded transcripts, and recoded all transcripts using the final codebook, which consisted of both the a priori codes relevant to the research questions and emergent codes. To assess differences in experiences across age (< 40 years vs. ≥ 40 years of age), education level (at least a college degree vs. less than a college degree), and insurance status (private insurance vs. other), we utilized the attribute feature in NVivo 10, a tool that classifies transcripts based on specific variables. We then exported the attribute data and manually evaluated differences in participant accounts using Microsoft Excel. Themes identified during the coding process, and after coding was complete were reviewed for relevance to the research questions. We consistently referenced the transcripts to ensure that participant accounts supported the conclusions drawn. The study authors collaboratively discussed themes until consensus was reached.
Trustworthiness of analyses. We used four criteria to assess the quality of our analyses: prolonged engagement with the data, credibility, transferability, and confirmability. 16 First, prolonged engagement involves spending sufficient time with the data. To demonstrate this, we read the transcripts multiple times, reviewed and revised codes, and compared the transcripts, codes, and our interpretations through an iterative approach. Second, we evaluated the credibility of our findings by examining the extent to which our interpretations were rooted in the data. The findings of a qualitative study may be transferable if the conclusions drawn can be compared with other samples or theories. We have provided "thick description" of our findings, including detailed information about the sample, to assist others in assessing transferability. 17,18 Lastly, to assess confirmability, we have provided a detailed description of our procedures and analyses, and have included illustrative quotes from participants in the results section to support the conclusions drawn. All quotes are written verbatim, except for minor edits to improve clarity. To protect the confidentiality of participants, we have provided pseudonyms with the age and procedure type (hysterectomy "H" or myomectomy "M") in parentheses, and changed or omitted other identifiers. The results presented reference the accounts of all 37 Black women.

Results
Participants provided detailed accounts of their experiences seeking treatment for uterine fibroids. Several participants (n = 7) expressed relatively low perceptions of risk for fibroids because during the initial diagnosis, clinicians had advised them "not to worry." Typical was Ashanti (age 51, H), who was first diagnosed with fibroids in her 20 s. She recounted that "I was so young then, so I don't recall them telling me it was a risk…the doctor explained that most women had fibroids or something and that mine were so small that it was nothing to even be alarmed about. It is unclear whether participants thought that clinicians were concealing additional options or whether they believed that management options were limited overall, but in general, women expected more information from clinicians about fibroids, and were frustrated with the lack of information provided. Jada (age 32, M), recounted that she expected her clinician to provide advice on lifestyle modifications or preventative steps: "I wanted to get more information, but she didn't tell me fibroids, also shared how she never believed that she was personally at-risk prior to her diagnosis because she did not experience the "normal" symptoms (e.g., heavy bleeding) like her mother did.
Others (n = 9) attributed an increased risk of fibroids to a poor diet. Typical was Zoe (age 47, H), who attributed the high rate of fibroids among Black women to cultural differences in food choices, stating that "Our [Black] culture is different when it comes down to eating. The stuff that we eat can be very rich." Seeking medical care. The majority of women (n = 28) discussed their fibroids experiences with family, friends, and co-workers. As Whitney (age 42, H) noted, these conversations often occurred among other Black women because fibroids are "such a common thing amongst Black women, that at any given moment…somehow it comes up." It may also be the case that respondents in our sample felt most comfortable sharing the details of their medical condition with people of a shared community, identity, or interest group (i.e., their "in-group"). Regardless of how conversations arose, social networks played an integral role in helping women make sense of their fibroids and evaluate management options. Social network members shared personal experiences (n = 15), researched relevant information (n = 6), and provided clinician referrals (n = 3). Participants expressed gratefulness for family and friends who accompanied them to consultation visits (n = 2), and provided care throughout the decision making process (n = 17). This support was important for Lauren, who acknowledged that, "when you're going through this, you can forget to ask that question, or you can get lost in what's being told to you." For women who were apprehensive about surgical management (n = 6), family members often encouraged participants to follow-up with clinicians and proceed with surgery. This was the case for Jada (age 32, M) who shared: "My siblings are just telling me it's going to be okay, just take care of it now, don't let it linger on any later than you have, just get the surgery so you can feel good." Positive support in seeking care for fibroids was not unanimous however. Two women discussed a lack of support from members of their social networks. Although Whitney noted that she shared her experiences with other Black women, she also admitted that her experience with fibroids caused "some othering" in her work environment. Normally an active employee, Whitney described how fibroids made it challenging for her to remain engaged at work; something poorly understood by her To our knowledge, this is the first qualitative study to examine within-group comparisons among Black women undergoing surgical treatment for fibroids, which provided a rich opportunity to contextualize Black women's experiences beyond racial comparisons (e.g., Black versus White women). Our study is also the first to ask specifically about patient-doctor interactions among Black women who were undergoing surgical management for fibroids. Participants were diverse with respect to age, education level, and insurance status, which allowed us to assess differences across specific social positions. The sociodemographic composition of our study population is reflective of the geographical area from which participants were recruited, however, because our respondents were predominately single, highly educated, all insured, and all seeking surgical treatment, we do not know the extent to which our findings generalize to Black women from other backgrounds. Another limitation is we did not explicitly ask women about experiences of discrimination in healthcare settings, which may have elicited more in-depth information.

Conclusion
In this qualitative study of Black women seeking surgical treatment for fibroids, we found that fibroid management decisions were shaped by interactions with clinicians and social networks, fears of malignancy and fertility consequences, and broader social conditions. Given that participants desired more information about fibroids and sometimes felt silenced or devalued in clinical settings, we recommend that clinicians provide more intersectional, culturally-competent care that centers the voices of Black women and acknowledges their specific perspectives, concerns, and social conditions. 10,35−37 Because clinicians help determine when and how women seek fibroid treatment, it is essential that clinicians be trained to address their own implicit biases, partner with communities of color to disseminate information, provide a range of management options, and foster a supportive clinical environment where Black women feel respected and heard when making treatment decisions. 38−40 Collectively, our findings provide new opportunities for clinicians and healthcare institutions to evaluate their approaches to fibroid management, advance patient-centered models of care, and reduce disparities in fibroid management.

Declarations
Ethics approval and consent to participate: All participants provided written informed consent prior to being interviewed. The study was approved by the Institutional Review Board at the George Washington University.

Consent for publication: Not applicable
Availability of data and materials: In order to preserve the anonymity of study participants, the data (e.g., interview transcripts) that support the findings of this study are not publicly available.
Competing interests: Dr. Moawad is a speaker for Intuitive Surgical. All other authors report no conflict of interest. Authors' contributions: BNV contributed to participant recruitment and interviews, performed the qualitative data analyses and interpretation, and led manuscript writing. ARZ conceived and designed the study, interpreted data, and contributed to manuscript writing. LB assisted in study design, qualitative analyses, interpretation of results, and manuscript writing. GM and CM assisted in study design, participant recruitment, and interpretation of results. All authors critically reviewed and approved the final manuscript.