The Perspectives of Māori and Pasifika Mate Kirikōpū (Endometriosis) Patients in Aotearoa New Zealand

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

Abstract:

Guided by your community leaders on the project  - I wondered if you would consider having “iwi (tribe)” in your abstract; while this is a simplified translation it may help provide insight for an international audience.

Introduction:

The first sentence is quite word heavy; I suggest breaking into two. It was a bit jarring to read a statistic from Australia, given the context of the paper. Could the authors consider using an NZ estimate of prevalence or nuancing the sentence to justify an Australian statistic.

The introduction is well written covering important sociohistorical contexts – I did wonder if the authors would consider including research that may speak specifically to menstrual health and beliefs more broadly within the populations of focus (or even how colonialism may have changed traditional beliefs – with impacts for how women perceive their bodies)– and how this too may play into the women’s experiences of endometriosis and willingness to seek care.

For instance:

Wootton, S., & Morison, T. (2020). Menstrual management and the negotiation of failed Femininities: a Discursive study among low-income young women in Aotearoa (New Zealand). Women's Reproductive Health, 7(2), 87-106.

There are other Māori knowledge holders who have also produced academic theses that may be of interest to the authors as well.

Methods:

Is the overall study mixed-methods design – if so the heading needs to be changed? Some justification for the study design – ie. anonymous, asynchronous, online, text-based discussion focus groups is needed – why not in person? More context is needed to how this works – for example, tell us what is involved in this – do you use software? What content did the questionnaire include; some idea of key constructs is important to share here.

Any ethical considerations or reflection on the populations of people who might be reached by researchers sharing the invitation? Perhaps start with the sharing of the invite through reputable community based organisations.

VisionsLive Ltd Bulletin Board platform designed for the study. I’m not familiar with what this is – greater level of detail needed here – what type of platform? What does this facilitate?

Pseudonyms heading does not encompass the content included – this section talks to the software used how participants accessed their “board” – this should be part of the procedure.

It is not until the reader gets to the data collection heading that it is clear that the research design is qualitative using discussion boards – this needs to come up much higher in the methods – you have included topic areas here too, I wondered if you might like to include these earlier in the methods too.

144 hours is very specific, could you please talk to why this was chosen – does it equate to a certain number of days etc.?

The positioning of the data collection as focus groups (first section), rather than discussion boards sits a bit oddly – especially given participants can not see other peoples replies to answers until they have posted their own. Why is this? The purpose of a focus group is to bounce ideas off one another and generate interesting data through these interactions. Further justification is needed, if this is a term the authors would like to use. I see reading further on the method is not a FG? – consistency and justification is needed across the methods, unfortunately I’m not clear what format the data was actually captured. Ie. Could participants change their answers once submitted? Or add additional text?

“These participants are then split into two cohorts” reframe tense in this clause.

Were any language considerations needed for participation? Or was the expectation that all participants spoke and read English. If so, did this have any limitations on who could participate, particularly newer migrant women from the Pacific islands for example.

How were quantitative measures asked in an online groups discussion? Not clear how these were delivered.  

Sentence beginning “The qualitative data from open-text questions was analyzed with a thematic” is long and repetitive and doesn’t speak to what the researchers did. How were codes identified? What constituted a code? How were these then grouped together and moulded to generate a theme? How was quant data matched to qual – and why was this undertaken.

I’m not sure what is meant by real-time pattern identification? Please amend. This description is hard to make sense of.  

Comparison of Priorities Calculation – is this spoken to in the text – no evident where this fits in. Are the types of health the overarching theme and then subthemes of key issues coming in beneath these? Were participants given these overarching headings for were they developed with the team from the data? I also noticed knowledge and onset in a theme in the results but doesn’t feature in the diagram.

“effort to avoid cross-cultural risks” – what does this mean. The ethics section is a little clunky and could do with breaking down into more sentences.

Results:

“amongst these two cohorts” – please reconsider language – these are participants or respondents.

Page 6 -247 sentence – I suggested presenting the data from this study first then speaking to how it fits with prior research for a smoother narrative.   

Perceived Normalcy theme has no data – could you include quotes here to demonstrate these points? Rather than a summary narrative.

The two subthemes on severity of pain cover similar material - consider combining

The first sentence speaking to patterns of support is confusion – could this please be reworked. This whole section needs to be edited for clarity.

Check consistency for quote indentation.

“In the prior cohort” – what is meant by this? The other study – revise throughout.

The table with data for the last theme sits a bit oddly, given it isn’t the same format as the rest of the paper – I would include some key quotes in text. If word length is an issue – consider reducing instances with 3 quotes above, picking those most illustrative.

Overall better integration of the quant and qual data is needed. Themes need to be further refined so there is not repetition across key points.

Discussion:

The discussion needs a lot more work. Please remove any results data. Reference needs to be made to key issues from the results and how this relates to past research including: menstruation being taboo; normalisation of women’s pain; shame and silencing; fertility concerns – why are women seen as reproductive vessels – is this different, more important etc. for the communities of women in your study? Barriers to care; racism in the healthcare context. These are all significant findings that need exploration and a “so what” spoken to.

I encourage the authors to seek a deeper explanation than culturally appropriate care – consider reading and exploring cultural safety in care.

Minor editorial:

Please consider writing number sin full to start sentences e.g. abstract Twenty seven

Please edit manuscript throughout for long complex sentences e.g. “While endometriosis is not a condition only  defined by infertility, the emotional harm to patients who do want to have children, and  face difficulty, as well as emotional and spiritual pain because of endometriosis-related  infertility, make it an important aspect for ongoing consideration and support.”

Comments on the Quality of English Language

Long complex sentences need revision throughout.

Author Response

Please see the attachment. 

Author Response File: Author Response.pdf

Reviewer 2 Report

Comments and Suggestions for Authors

This manuscript, which takes a step towards exploring and understanding the the experience and perspectives of Maori and Pasifika people with endometriosis, is an important and long awaited study.  It is very well written and provides relevant background.  The main findings of the qualitative study determine that indigenous populations are largely dissatisfied with care, which is compounded by a mistrust in the health system due to limited time taken to build relationships. 

Minor comments:

1. Throughout, there is a switching between the use of italics for participant quotes and pseudonyms.  This needs to be rectified for consistency. 

2. In the results, participant quotes are followed by bracketed detail - this should be better detailed in methods (or results, on first use)? It is not clear what confirmed/working represent, assuming the numbers are age (years)....

3. Line 24 - more recent Australian numbers were announced by AIHW - 14% by age 44-49

4. Line 31 - "not specifically assessed" was this bc they were excluded from the study, or just not stratified in the analysis?  

5. Line 40 - when you talk about education, are you referring to the community/patients or to health providers (or both)?

6. Line 92-96 - potentially out of scope of this paper?

7. Line 99 - define BMI

8. Figure 1 - from the perspective of someone not familiar with Hauora, this figure is difficult to interpret because it is not clear what already exists or is part of a Hauor, versus what the results of the study are.   This detail could be included in the figure legend.  

9. Lien 305 - why is it "conversely"?

10. Lien 619-623 - sentence is too long - should be broken down.

11. Lien 625 - 629 - this felt like new information being included in the discussion, not apparent in the results.  

 

Author Response

Please see the attachment. 

Author Response File: Author Response.pdf