PONE-D-20-20019

(In)Visible Illness: A Photovoice Study of the Lived Experience of Self-Managing Rheumatoid Arthritis

PLOS ONE

Dear Dr. Donnelly,

Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process.

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Thank you for submitting this interesting manuscript. You will see that both reviewers have provided favourable feedback and also identified a number of areas for improvement, e.g. in terms of highlighting the gap in the literature that you are contributing to and making sure your statements are supported by appropriate evidence. They have also requested more detail on your methods. I disagree with the suggestion from reviewer 1 that quotes would be better located in a table; I think your findings section is well presented. Feel free to defend the current layout in your rebuttal letter. Otherwise, all comments need to be addressed and should help to improve the quality and readability of the manuscript.

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Shelina Visram, PhD, MPH, BA

Academic Editor

PLOS ONE

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'Funding for this research was awarded to SD under a Wellcome Trust Institutional Strategic Support Fund which was financed jointly by University College Dublin and the SFI-HRB-Wellcome Trust Biomedical Research Partnership as part of a Medical Humanities and Social Science Collaboration Scheme (Grant number 204844/Z/16/Z).

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The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.'

We note that one or more of the authors are employed by a commercial company: Independent filmmaker, Dublin

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Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. Is the manuscript technically sound, and do the data support the conclusions?

The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented.

Reviewer #1: Yes

Reviewer #2: Yes

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2. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: N/A

Reviewer #2: N/A

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3. Have the authors made all data underlying the findings in their manuscript fully available?

The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.

Reviewer #1: Yes

Reviewer #2: Yes

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4. Is the manuscript presented in an intelligible fashion and written in standard English?

PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here.

Reviewer #1: Yes

Reviewer #2: Yes

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5. Review Comments to the Author

Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters)

Reviewer #1: The authors have done an excellent job describing the lived experience of people living with RA through a combination of interviews, focus groups, and photos. I also appreciated how closely patients worked with the research team and were considered key stakeholders in the analysis and interpretation. I do think the manuscript could benefit from some editing, and I have a few questions:

For sample selection, was participant race considered?

How was it decided which group participants would be assigned for the workshops?

Was the RAG involved in the final analysis or did only participants provide feedback?

I appreciate the inclusion of multiple quotes to underscore many of the authors’ main points. I wonder if a table displaying these quotes together would be beneficial to keep from going from text to quote several times during the results. Overall, I think the results could use some editing to highlight the key findings without including long quotes for each section.

Did you find that 11 participants were enough to understand the full spectrum of experiences? Do you think thematic saturation was achieved?

Reviewer #2: Summary of the study and general comments

Thank you for the opportunity to review this manuscript on a topic that is timely and relevant.

This paper presents the results of a qualitative study conducted in Ireland which explored the lived experience of self-managing rheumatoid arthritis.

Overall, this is a well-conducted study that makes important contributions to the research field. Suggestions on how to strengthen this paper follow.

Abstract

Clear and structured abstract. It includes a detailed description of the study, participants, what was done and what participants found.

Introduction

Clear and nicely written Introduction, which sets well the context and background of this study. The importance of rheumatoid arthritis is clearly explained.

Lines 92-93 – you mentioned previous qualitative studies. Please summarise them briefly, highlighting any strength or limitation. It is important to highlight any gaps in the literature before moving on to present photovoice.

Lines 95-97 – please provide references for this statement. Previous authors have highlighted that one of the strengths of using photovoice is the combination of various methods, and how this may help us in accessing people’s perceptions in a deeper way than solely relying on interviews/group discussions. Some examples are below:

E. D. Carlson, J. Engebretson, and R. M. Chamberlain, “Photovoice as a social process of critical consciousness.,” Qual. Health Res., vol. 16, no. 6, pp. 836–52, 2006.

S. Ronzi, D. Pope, L. Orton, and N. Bruce, “Using photovoice methods to explore older people’s perceptions of respect and social inclusion in cities: Opportunities, challenges and solutions,” SSM - Popul. Heal., vol. 2, pp. 732–744, 2016.

L. Liebenberg, “Thinking Critically About Photovoice,” Int. J. Qual. Methods, vol. 17, no. 1, p. 160940691875763, 2018.

Lines 103-106 – please provide references for these statements,

Lines 106-107 why is photovoice especially well-suited to the study of invisible illness as a means of exposing the everyday realities and hidden conditions of people’s experiences? If you include this statement right at the start, you should support this by evidence from previous literature. Also, this statement does not fit well your description of the method (it disrupts the flow). I suggest you move it later in the paragraph (and provide justification for this statement).

Lines 111-113 –whilst it is ok to use quotes, try not to overuse them and rephrase what you want to say in your own words.

Methods

Line 138 – do you have any reference that you can include of past photovoice work?

Lines 152-153– please define what you mean by Chronic Disease self-management Programme

Lines 153-154 what are the components of a formal self-management education programme in this context? Please provide further details and support these with references.

Lines 154-156 – this sentence reads a bit complex to follow for a reader who is outside your immediate field. Please simplify this sentence by providing further details (especially define ‘formal self-management discourse’ in this context).

Lines 158-159 why did you use two recruitment strategies – clinical and public – to simultaneously obtain a sample of eleven participants? What was the rationale? What was the added benefit of doing this? Please expand the rationale for this choice.

Procedure:

Lines 172-174 – who led the fieldwork and recruitment?

To add transparency, please list the initials of the research team involved in discussing emerging themes and reviewing fieldwork also earlier on (in addition to line 247).

Line 181 –what was the rationale behind having each workshop of three hours in duration?

Lines 187-188 – were examples of photos provided to participants? Did any participant ask for further explanation of the photo task? If so, what did you say?

What ethical issues were discussed?

Use of consent forms for photographic subjects: what did the consent form include? What ethical guidance did you refer to and have used in this photovoice study? Please reference any guidance accordingly.

Was the camera left to participants for 2 weeks?

Was there any follow-up conducted with participants during this time?

Did any of the participants encounter any challenges in taking photos during the 2 weeks? If so, what was and how did you resolve it?

Why did you the decide to divide participants into groups of two to three (workshop 2)?

Lines 215-217 “Group B were asked to review photos following the same procedure as Group A, but at the end of the workshop they were presented with Group A’s themes to incorporate into their selection”. How did this work in practice? Please expand.

Lines 226 - it is great to see the photo-exhibition organised. How many people attended the event? And who were the attendees? (e.g. policy makers, community members…) How many participants attended and presented their photos at the event?

Were all participants involved in the analysis? Fig. 1 and Appendix should be explained also in the text, to assist the reader in understanding what was done.

In particular, explain how participants were involved in coding the photos and identify main themes, and how you have linked this to your analysis. How did you incorporate participants’ coding and identification of main themes in the thematic analysis that you conducted? It would be valuable to understand how these two elements were linked. This will support what covered in Appendix S2 and S3.

The appendices the authors provide are very informative and detailed and add strength to the overall paper. However, I suggest to expand this section (see above questions), as it is important to present how photovoice methods were applied in this study.

Line 256 – please change the verb into the past tense

Very clear explanation on how Public and Patient Involvement was undertaken in this study.

Results

Overall, the Results section includes some fascinating findings. Suggestions on how to improve this section follow.

Figure 3 – can you provide a quote supporting the explanation of this photograph? This comment applies to all photographs that don’t have a supporting quote. Although the authors explain the reported meanings associated with each photo (and in some cases, a supporting quote is presented), for transparency, each photo should be presented with the participant’s explanation as well.

Also, next to each quote, I recommend you include the participant number, gender, and age. Having this info helps the reader to contextualise the findings. E.g. (PA, F, 37). Otherwise, the quotes feel a bit difficult to follow and put into context.

The same applies for the photos presented. Please specify which participant took each photo.

Line 628 – what is HCPs?

Discussion

Clear and detailed discussion of the findings in the context of the literature.

Strengths and limitations:

I suggest the authors to support many of their statements with appropriate references.

Lines 870-872 – Please add how photovoice proved to be an effective tool for actively engaging individuals in reflecting and communicating the lived experience of self-managing RA. What did you observe? What did you find?

Lines 872-873 – please add why you felt that this was the case (do you have any evidence of this? What did you observe?). It would be good to comment further and expand this statement: “participants reported to find the process of personal reflection, and the sharing of mutual concerns and experiences rewarding”. As suggested above, there are some papers that have examined and assessed the value of using a combination of photos, interviews, and group discussions to access people’s lived experiences/perceptions. Please refer to examples made in Lines 95-97.

Overall, a well-structured discussion and presentation of the strengths and limitations of this study.

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Reviewer #1: No

Reviewer #2: No

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(In)Visible Illness: A Photovoice Study of the Lived Experience of Self-Managing Rheumatoid Arthritis

PONE-D-20-20019R1

Dear Dr. Donnelly,

We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements.

Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication.

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Andrew Soundy

Academic Editor

PLOS ONE

Additional Editor Comments (optional):

Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation.

Reviewer #1: All comments have been addressed

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2. Is the manuscript technically sound, and do the data support the conclusions?

The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented.

Reviewer #1: Yes

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3. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: N/A

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4. Have the authors made all data underlying the findings in their manuscript fully available?

The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.

Reviewer #1: Yes

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5. Is the manuscript presented in an intelligible fashion and written in standard English?

PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here.

Reviewer #1: Yes

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6. Review Comments to the Author

Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters)

Reviewer #1: (No Response)

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7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.

If you choose “no”, your identity will remain anonymous but your review may still be made public.

Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy.

Reviewer #1: No