Title: “A part of my life”. A qualitative study about perceptions of female genital mutilation
and experiences of healthcare among affected women residing in Sweden
Version: 1 Date: 27 Mar 2024
Reviewer:  Camilla Palm
Reviewer's report:
Review ”A part of my life”. A qualitative study about perceptions of female genital mutilation
among affected women residing in Sweden
1. General comment: This is a well written paper with some interesting results on immigrant
women’s perceptions of health consequences of FGM/C and their experiences with healthcare
that should be published in some form; however, it needs some revision for the arguments
and conclusions presented to be persuasive. In particular, I think some clarification and more
elaboration needs to be done in the results section.
The article explores two themes that are under-researched, namely how women with FGM/
C make sense of health and sexuality after migration, and how healthcare is perceived in the
Swedish context.
The authors provide with interesting findings that can answer the RQs. Yet I feel the paper is
too scattered at the moment to reach its full potential. In my opinion, some themes could be
bracketed in favor of more elaboration on the main findings. My main concern and point of
response, is to reconsider the weight given the themes identified in the analysis. I would have
wished for some more depth in relation to each of the two main themes (health perceptions and
healthcare experiences) for the conclusions and analysis to be persuasive (maybe there is a pint
in making them two separate articles?). That said, I think some further work with the result
section and the presentation of data and analysis can make the central points and arguments
clearer. My suggestion is to use more space to explore, in more depth, each of these themes.
But it’s up to the authors. The paper can also work as it is. The background and the discussion/
conclusion are in pretty good shape. With that said, specific comments are as follows:
2. Title: The title is rather vague and does not indicate the main focus on health explored in
the article. Maybe mention “perceived health consequences” or “experiences with healthcare”
or something similar.
3. Page.1 abstract, line 23
a) perhaps change “categories emerged” to “were identified” or something similar – in line with
the qualitative reflexive approach that is referred to later in the text about knowledge being
constructed in relation to the interviewer and researcher/s.
b) page 2 line 35 : I think it is better for your argument if you spell out what you mean with
a “professional way.” For example, you mention some qualities in your result section page.19
line 394 or line 399.
4. Page 3, background, line 46: “… among girls and women in Somalia”, to focus on Somalia
may not make sense to people not knowing that Somalis are the largest group in Sweden and
Europe which is associated with FGM/C. To make this sentence more intuitive, you might want
to make this point earlier in the text.
5. Page 4 line 76: you state that there are few qualitative studies on women’s experiences of
FGM and its effect on health after migration. This is a good point, yet there might be a point
in mentioning a few more studies that have investigated into this topic in the diaspora context.
Such as Jacobsen et al., 2018 (in the US context) or Abdi 2012, Johansen 2006, Palm et al.,
2023, Villani et al., 2016, Ziyada et al., 2020 (in the European and Scandinavian context).
6. Page 5. Lines 95-97: the second part of the aim is well motivated in the text (healthcare
experiences in the Swedish context is under-researched), yet I think that the motivation for
the first part of the aim of the article could be stated more clearly in the background section,
with reference to existing studies conducted in contexts of immigration (perceived health
consequences in diaspora).
7. Page 6. Methods, Line 109: A clear motivation for the sampling method is lacking. Was it
really purposeful sampling you used, or convenient sampling? Was your purpose to find women
who you knew had experienced health problems they related to FGM/C or why did you choose
to select patients from the specialized care unit?
8. Page 6. Line 114: more information on the selection of participants is needed:
a) How did clinicians at the clinic recruit interviewees? Did they reach out to all women with
FGM/C? Did they hand out letters about the study? Did they ask all women they met, or did they
select who to ask or who was invited? On what basis did they select participants? What might
the implications of this be? This is important information to validate the research findings. The
authors do a good job at the end of the article of discussing implications of this particular sample,
but I think more information on the selection of participants is needed to provide a possibility
of validating the research.
b) Is it really possible to reach theoretical saturation after eight interviews?
c) Most recruits were from Somalia but not all. Could you see differences in the results depending
on the sociocultural specifics related to ascribed meanings of FGM/C? A little more elaboration
on this should be useful to set the research findings in context. Or you could find themes and
meanings that were shared also cross-culturally? If so – this is an interesting finding and should
be further discussed and explained.
d) page. 8 line 158-159: highly educated women, this could also be followed up later in the
discussion – could you see implications of this in relation to the findings presented?
9. Page 7. Lines 141-143: you might want to consider giving some examples of the meaning
units you created/identified. But this is just a suggestion. Now as it stands, I don’t get a sense
of what you were looking for in your analysis. Or move the sentence on page 8 lines 164-165
to this space instead?
10. Page 8. Line 150: a word missing?  “… including information(?) that they…”
11. Page 9, results, theme 1, p. 174-180: here you provide background information on the
participants in terms of the age at the event, the context etc. Now as it stands, this information
does not add to the understanding of the results/the quotes. I would advise using/adding this
information in the presentation of the findings to contextualize the quotes instead. For example,
you mention on page 10. Lines 182-184 that some women recalled the event as very traumatic
and others experienced little pain at the FGM/C-event. How can this be understood? Can this
be related to age or medicalization of the FGM/C?
12. Page 10, heading/theme 2, line 186: It is not clear to me how this theme helps to answer
the research question/s? What does “preserving virginity and culture” has to do with perceived
health consequences or healthcare experiences? Apart from the last part on page 11. Lines
206-208, “it was described that the tradition was continued, despite the knowledge of the harm
it resulted in, because of the perceived social benefits”, it is unclear how the theme relates to
the focus of the study. Maybe consider restructuring (moving this paragraph to the beginning
instead) or stating the main finding more clearly at the beginning of the theme. I am also left
wondering who the interviewees are talking about – themselves, or others? No as it stands, the
quotes do not really demonstrate your main point in this theme – that women themselves thought
FGM/C was harmful yet a price they had to pay to be part of the community.
13. Page 11, heading/theme, lines 214ff: The same goes with this theme. What does “mother’s
ambivalence in the decision process” have to do with the research questions (healthcare
experiences, and perceived health consequences)? This should be stated more clearly so that the
added value is clear – or maybe considering erasing the theme?
14. Page 13, theme 3: How does this theme about opinions on FGC relate to the RQs (about
healthcare experiences and perceived health consequences)?
15. General comment on the first three themes in the findings section: I sense that the three first
themes contain information that could be “bracketed” to let your main points come forward. Or,
if you deem them of importance for the understanding of the results that relate to the RQs, their
added value could be spelled out more clearly in a sentence or two.
16. General comment on the presentation of the findings: Sometimes it is hard to follow who
is talking in the quotes. Is it the women’s own perspectives, or do they present second-hand
information on how they interpret or experience other women’s experiences? I think this is an
important difference to be attuned to. For example, page 14, line 281 – is it Khadras’s own
perspective? Or how did it make Khadra feel or think about FGM/C when she heard young
girls protecting the practice of FGM/C in diaspora? The same goes for page 14. Lines 290-291,
“increased knowledge and fear of punishment were recurrent motivations for the abandonment
of the tradition after migration” – did the women themselves say that these factors have hindered
them from continuing the practice in diaspora? Or do they talk about how they think that other
people (from the same or other ethnic groups?) think about this?
17. Page 15, heading, line 297. Consider how the heading “challenged during menstruation”
relates to the first sentence in this section “most of the participating women did not experience
their menstruation as challenging”. Consider editing.
18. Page 15, line 302: It would have been interesting to know how Ayan understood these
symptoms of menstrual pain in relation to FGM/C. Now the reader is told that she had severe
pain, yet it would have been useful to know how she relates this to FGM/C.
19. Overall, this theme about menstrual pain is too short and I think more depth and analysis
could be added to actually understand how the women related menstrual pain (or not) to FGM/
C. The heading says that this theme contains of “challenges during menstruation, urination and
sexual intercourse”, yet now as it stands, it is way too short to actually let the reader understand
how all of these factors are understood and experienced (“lived”) by the interviewees, and how
they relate these experiences to their FGM/C.
20. Page 16, lines 313-318: the part about defibulation and anesthetic gel, soreness etc. feels a
bit to detailed for a paper not explicitly focused on defibulation. However, I think this part of
the results is where a main contribution to research lies. Maybe considering reframing the RQ
or aim so that it better corresponds with the findings and arguments you highlight in the paper.
21. Page 16 lines 331-333, this is interesting and important information. Also the part on page
17, lines 341-348 about how women reason about their genital appearance after defibulation is
also an interesting and novel findings. A little more exploration on this would be welcome.
22. Overall comment page 17-18, it would be interesting to know why some women do not relate
FGM/C to any negative health or sexual consequences, and why some do. This is where I find
the findings section should need some more depth, detail, and elaboration. Also the part about
sexuality (Ikram quote) where “all the negative talking” caused insecurity, is a novel finding
and could be further elaborated on. But this is up to the authors.
23. Page 19, healthcare experiences, line 389: either positive or mixed experiences – it would be
useful, here or in the methods section, to know what problems the women had sought help for.
24. Page 19. Line 394, Consider rephrasing “appreciated knowledgable information” – what
does that mean?
25. Page 20, line 408-409: when do these experiences refer to? Present time or some while
ago? This could be useful information as several countries have intensified its work with FGM/
C awareness and training for professionals. For example, the WHO have new guidelines from
2016 and 2018, and the EndFGMnetwork offer digital resources for healthcare providers in
diaspora contexts. Have things changed, or are these experiences of feeling ignored etc. the same
as reported in earlier research?
26. Page 23, discussion, lines 468-474, this theme is interesting yet not that visible in the result
section, consider highlighting more in the result section or erase? Or reconsider the weight given
this paragraph in relation to the findings and RQs.
27. Page 23, lines 475-486: also this theme is a bit off considering the RQs. Reconsider the
weight given this paragraph in relation to the findings and RQs.
28. Page 24, lines 495-498. Here you state that some of the eight participants “experienced
long-term suffering whereas others perceived the consequences as minor.” Why did you choose
not to highlight, analyze, and discuss the perceptions among the women who expressed the
consequences as minor? How for example can Ikram’s experiences be understood in relation to
this theme? This should be elaborated more, or else the focus of the research should be restated,
for example “this research focuses on women who experience long-term suffering of FGM/C,
to explore their perceptions…”
29. Page 24, lines 503f. “most.. had the deinfibulation done independent of marriage” – this
should be clarified in the results section.
30. Page 24, line 510, about deinfibulation as a turning point. The weight given to this finding
in the discussion section is not in parity with the findings section. Consider elaborating more
on this finding in the results section?
31. Page 27, line 571, about “acceptance was a strategy used to move on”. This is interesting
but this is not what has been studied or presented in the results.
32. Page 28 line 588, you write “less severe form of FGM may never seek healthcare based
on the FGM status and can have different experiences and perceptions of FGM ” – yet also
women with FGM/C of the same severeness may have different experiences, as your research
also demonstrate. Consider rephrasing. Maybe just cut off the last part “can have different
experiences…?”
31. Page 26, grammar, line 557,
a) consider changing “concerned” to “affected” women.
b) Page 26 line 558, add “the” to “on one hand”
c) Page 27, line 579 – unclear sentence “Basic education about FGM and its consequences to
healthcare providers is a prerequisite for the ability to provide good care” – This sentence is
unclear. Do you mean that healthcare providers need to be aware of/have knowledge of health
consequences?
32. Page 29, list of abbreviations, line 622-625. Do you need this?
33. Overall comment on the discussion. The authors do a good job in discussing the findings
and offering explanations for the divergent results found in this study compared to previous
studies in Sweden and Norway. Their discussion is confirmed in recent research discussed in
Einstein et al., 2019 and Palm 2024, and I think, in general, more attention needs to be paid to
such differences in this field of study. These are important findings!