Title: “It’s like your body is fighting against you”: A cross-sectional qualitative interview study
of quality of life in U.S. Black women diagnosed with endometriosis
Version: 2 Date: 22 May 2025
Reviewer's report:
Thank you for inviting me to review this original research article. It is great to see the authors
have attempted to explore and under represented area of research in relation to endometriosis
care in women of black ethnicity. I have made several comments, with the aim to help further
develop your manuscript:
Please note, the article does not have page numbers or line numbers until later in the manuscript.
I have tried my best to provide as much feedback, but it is slightly difficult to write specific line
numbers for the initial pages as the line and page numbers only suddenly appear at the results
section as ‘page 1’
Abstract
Methods: The authors state ‘A thematic analysis approach was used to generate themes’
• What does this specifically mean? There are many qualitative methods in which data can be
analysed. Later in the manuscript it becomes clear that the Braun and Clarke thematic analysis
method was used. This should be mentioned here.
• Given the qualitative nature of this work, there is no mention of reflexivity and the influence
of the research team on the design of the study and subsequent data collection and analysis.
The abstract does not contain detail on how this study is novel and what the gap in the literature
specifically is.
Conclusion
The authors state in the conclusion (abstract): ‘When caring for Black women, healthcare
professionals should be attentive to both physical and psychosocial impacts that lower quality of
life, such as chronic pain and its management. Furthermore, person-cantered clinical interactions
are particularly important as is the inclusion of social networks to manage the condition and
improve quality of life’
• There is no mention of why this study is specifically important in this group of patients
• There is no discussion about the novelty of any findings
• The conclusion is broad and generic; it can almost be applied to any qualitative research article
as it does not have any specific context’
• Please note typo in 'person-cantered'
Background
The authors state: Despite being one of the most common gynecological diseases, endometriosis
has been routinely underdiagnosed, underreported and under researched, particularly among
Black people with uteruses.
• Reference required
The background section is very broad and simply state what other research has found; this section
requires significant amendments to contextualise the study.
After reading the background section, I did not get a sense of what the specific research gap
is. This area of endometriosis, exploring the experiences of black women with endometriosis is
unique and robust qualitative research will certainly add to the small existing research that has
focussed on this very specific group of individual's. However, further argument is required in
the background to set the scene.
Figure 1
This should form part of the appendix
Data collection
The authors briefly mention the underlying data analysis process. However, more detail is
required to enable the reader to understand exactly how the data was analysed.
The authors briefly allude to the interview guide in the data collection section. However, there
is no mention of how patients and or public groups were involved in the design of the interview
guide.
The authors state ‘First, a Facebook advertisement campaign, published by the Emory Center
for Reproductive Health Research in the Southeast (RISE) account, ran for two weeks spanning
late August and early September of 2021 (see Figure 1)’
• Is there a reason why the study was only advertised for two weeks? It seems an unusually
limited time period.
A total of 16 interviews occurred, but what determined this figure? In qualitative research, it
is not always possible to determine a specific number, unlike quantitative research. However,
there is no mention of data saturation for example or why 16 interviews were conducted. The
authors should expand on this.
What was the rationale for only recruited those aged 18-45 years of age?
In terms of demographic data, the authors state they have recruited those individual's who
identify as Black ethnicity. The term black ethnicity is broad. Did the authors collect any further
ethnicity related data?
The authors state ‘Transcripts were then coded line by line, and at the completion of coding,
themes were generated by collapsing codes that were similar and disregarding codes that were
not relevant to the goals of the research’
• What did the authors do with the data that was ‘not relevant to the goals of the research’ ?
Results
I have read the thematic analysis twice. After having the read results section, I do not believe the
findings have been analysed with the respective Braun and Clarke reflexive thematic analysis
method. Themes appear to have been generated, but there is no clear evidence of how the
Braun and Clarke reflexive thematic analysis method was used. The themes are represented
superficially and the majority of the section is paraphrasing the respective participant quote.
There are often sections with large chunks of quotes from participants with limited interpretation
and contextualisation by the authors. Significant reanalysis of the data is required in my opinion.
As a reader, I found myself lost within the vast amount of quotation text; whilst the quotes are
interesting, the findings need to be brought together eloquently to tell a story. The authors should
consider meaning to the participant data and what the participants are saying. It is not enough
to simply paraphrase what the participant has said and then insert the respective quote. Two
examples are highlighted below:
One example that I have copied and pasted from the manuscript is:
Further, participants discussed the impacts of endometriosis on their perceptions of current
self, going into detail about feelings of frustration related to how they feel endometriosis has
negatively impacted their body and self-image.
“I used to think I was invincible. And, like I said, I was in, like, phenomenal health, and, um,
I was invincible. And now I'm like I get a little bit scared of my body sometimes because, you
know, while I think it's still great, I feel like it could fail me, and I never know what's gonna
happen next. And so that kind of bugs me, um, because, like, you wanna check that box of
excellent health. And I don't. I'm like, oh, it's in good health” - Rica, 36 to 45
“And then the other thing I would say in terms of body perception is I get very, very frustrated
because—I know this might sound-this might sound bad. But it gets to the point where, like, I
think to myself, I'm doing everything that they're telling me to do. I'm eating healthy. I'm eating
this. I'm not eating this or whatever, and then like the endometriosis is still there thriving, right?
And it's like nothing I'm doing is working, but then, like, a friend of mine eats like trash. You
know, like, she eats whatever she wants. Pizza, all of this stuff, and she's totally fine. So it makes
me get upset with my own body because it's like why aren't you doing what we need you to do,
you know?” - Ike, 26 to 35
Another example that I have copied and pasted from the manuscript is:
One participant goes into more detail about having somewhat of a positive experience but
perceiving it being attributed to their profession.
“And I will say this, I-I do notice that I'm treated differently once people learn what my
profession is. I think that makes a difference. But when people don't know what I do, if they
think that I'm just, like, the average person who walks in, I do get treated differently. And I
think it's compounded by race. If that makes sense?... So previously, uh, I was a researcher.
And currently, I'm an epidemiologist. And so when they see that in my chart, they talk to me
differently. They have different questions for me. They wanna engage me about the nature of
my work. You know what I mean? They feel—it seems as if we are all on the same playing field.
But if I-if I were, say, for instance, maybe just a clerk or a case manager, because previously I
was a case manager, I'd never felt like I was getting the attention that I needed or that I deserved
or even respect”. -Phylicia, 36 to 45
The authors are urged to ensure the theme labels match the respective text and participant quotes;
at times there is a mismatch.
The findings are difficult to contextualise without knowing more about the healthcare system
of the respective country. Authors should add detail on this to help international reader’s
contextualise their findings.
Discussion
The discussion has made some attempt to explore the wider literature with regards to
endometriosis and women of black ethnicity. Given that the aim of the research was to explore
the quality-of-life experiences in women of black ethnicity, the wider literature has only been
explored broadly. Key discussion points with regards to how their findings inform the wider
literature is missing. The discussion is vague at times and does not link back to ethnicity, the
aim of the authors research. Whilst the authors site some seminal endometriosis studies, the flow
of the discussion is incoherent and the ‘story’ as such is unclear. The discussion should be an
interwoven section that incorporates the authors research findings with the existing literature
base and what this has added; this is missing in my opinion and significant rework is needed.
The authors make a very superficial attempt to discuss the limitations of their work.
Methodological limitations must be considered in detail here. There is no mention of how the
population demographics of recruited participants influences the results, for example. Whilst
qualitative research has many strengths, it also has is limitations- this should be discussed.
It is not clear what the authors mean in Lines 459-461 Our study did not aim to ensure
representation across important lived experiences among Black women with endometriosis, such
as insurance status and immigration status, thus the findings are not generalizable to all Black
women with endometriosis in the United States.
Lines 464-466 For example, the researcher conducting the interviews had relevant lived
experiences that allowed them to empathize with participants while also understanding the
terminology surrounding this condition.
• Whilst researcher lived experience of endometriosis is important, the authors do not discuss
the influence of this on their actual research design, the way in which this experience may have
influenced the interview style and subsequent data analysis. An important concept of reflexivity
is missing, the influence of the researcher on the whole research process. The authors should
discuss this.
There are several areas within the manuscript, but particularly the discussion section, where
other research is discussed without the respective reference (below as just some examples). It is
critical to ensure the correct citations are inserted when discussion existing literature.
Lines 382-383: Prior studies commonly found that women with endometriosis find the
experience of managing the condition to be isolating.
Lines 395-396: Several studies have examined the lived experiences of women living with
endometriosis.
Lines 396-397: Literature shows that psychological interventions may have an impact on the
quality of life.
Lines 397-399: A three-armed study aimed to explore the impacts of psychological interventions
on chronic pelvic pain and quality of life in women with endometriosis.
Lines 416-419: A systematic review and meta-analysis study found that psychological
interventions may help improve body image concerns amongst individuals with endometriosis,
polycystic ovary syndrome, and other gynecological disorders.
Lines 424:425: A study examining social media posts aimed to identify key topics and themes
about endometriosis that need more attention from health care professionals and researchers.
The authors do not make specific recommendations for either education, research or clinical
practice. Some discussion around this should be considered.
Conclusions
The authors state the following in the conclusion section:
"This study also provides a call to action for both healthcare professionals and Black women
who may be struggling with the same condition, thus revealing the vital role of an individual in
caring for themselves but also the role doctors play in moving things forward. Specifically, when
caring for women of color who are presenting endometriosis symptoms that may present like
other conditions, it is important for healthcare professionals to be intentional about recognizing
their own biases and leverage support for women by identifying and including social networks
to mitigate the burden of endometriosis to improve overall quality of life"
• The descriptions provided in the conclusion is broad and can be applied to almost any medical
condition.