Dimensions of HIV-related stigma in rural communities in Kenya and Uganda at the start of a large HIV ‘test and treat’ trial

Cecilia Akatukwasa; Monica Getahun; Alison M. El Ayadi; Judith Namanya; Irene Maeri; Harriet Itiakorit; Lawrence Owino; Naomi Sanyu; Jane Kabami; Emmanuel Ssemmondo; Norton Sang; Dalsone Kwarisiima; Maya L. Petersen; Edwin D. Charlebois; Gabriel Chamie; Tamara D. Clark; Craig R. Cohen; Moses R. Kamya; Elizabeth A. Bukusi; Diane V. Havlir; Carol S. Camlin

doi:10.1371/journal.pone.0249462

Peer Review History

Original SubmissionJuly 2, 2020
21 Oct 2020 Decision Letter - Matt A Price, Editor PONE-D-20-20464 Dimensions of HIV-related stigma in rural communities in Kenya and Uganda at the start of a large HIV ‘test and treat’ trial PLOS ONE Dear Dr. Akatukwasa, 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. Please submit your revised manuscript by Dec 05 2020 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file. 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Please know it is PLOS ONE policy for corresponding authors to declare, on behalf of all authors, all potential competing interests for the purposes of transparency. PLOS defines a competing interest as anything that interferes with, or could reasonably be perceived as interfering with, the full and objective presentation, peer review, editorial decision-making, or publication of research or non-research articles submitted to one of the journals. Competing interests can be financial or non-financial, professional, or personal. Competing interests can arise in relationship to an organization or another person. Please follow this link to our website for more details on competing interests: http://journals.plos.org/plosone/s/competing-interests [Note: HTML markup is below. Please do not edit.] 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: Partly Reviewer #2: Yes ******** 2. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: N/A Reviewer #2: N/A ****** 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 ****** 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 ****** 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: This is an interesting and largely well written paper reported on findings from a qualitative study embedded in a cluster randomized trial in “32 communities in east Africa exploring the effect of ART initiation at any CD4 count with streamlined delivery”. The qualitative study aimed to “explore attitudes towards PLWHIV…in order inform individual and community stigma reduction interventions in regions undergoing universal HIV testing and rapid ART scale-up”. Major comments 1. At the moment, there is insufficient information given about the study methods (sampling and data collection) to have a good understanding of what was done and why, and therefore to have confidence in the findings. This is a large participant group – its looks like a total of 184 individuals (health providers, community leaders and community members) were included, although this number is not directly stated. There is also very little information given about the participants, for example it’s not clear what kinds of ‘community leaders’ were involved, or what the socioeconomic and demographic background of the participants is, or how many were HIV positive. I imagine some of the community leaders and health workers might have been HIV positive, but this has not been explored. Importantly, limited contextual information is provided across the communities involved. In fact, there is no description of what is meant by a community – it seems likely these are geographic communities – or how the 8 communities were selected for inclusion. All of these areas should be explained in more depth – particularly for a qualitative study - including more contextual information about the communities, such as their approximate size as well as their socioeconomic and cultural features. The only supplementary materials I accessed were data collection tools. I suggest more information on the participants, participant groups and study site context should be included, and a table of participants developed to give more detail to this account. 2. It’s also not clear why the team decided to use a random sampling method to identify the community members included in this study, given its qualitative nature. This seems to mix underlying paradigms for qualitative and quantitative research in a very confusing way. I suspect this may have been a practical choice – given the need to sample within a large number of (potentially) large communities – but in the end it’s not at all clear how they ‘narrowed down’ to the final 112 individuals across 8 communities included. 3. The discussion mainly draws on the literature to identify and discuss enacted, internalized and anticipated forms of stigma in the data. I particularly found ideas around anticipated stigma helpful and clearly related to the findings. Given that the authors particularly note the Parker and Aggleton paper (2003), I was surprised not to read more about structural level influences within the discussion, around issues of power and existing inequalities. Gender is clearly pulled out, which is important, but the literature on stigma strnngly underlines the importance of considering wider interrelated structural influences in developing interventions or programmes on HIV stigma, so that the discussion seems to be missing an important element, given the underlying aims of the study. Minor comments 1. Some sentences in the methods description are hard to understand. For example, on P3, its written that “HIV positive participants were further systematically selected from each community on the basis of randomly generated lists of adults with the following characteristics: high CD4 cell (n=3), suppressed viral load (n=3), and unlinked to HIV care (n=3)”. I suspect it would help to read the main paper for the SEARCH study to understand these descriptions, but it also seems important that this qualitative study should ‘standalone’. 2. In the discussion (P12), the authors write “Similar to other literature, our findings support a dramatic reduction in overt cases of enacted stigma since the early days of the epidemic” – but no findings are presented to support this point, as far as I can see. Reviewer #2: This sub-study is well justified and findings are useful in guiding the main study. 1. Regarding ethical considerations, authors only discussed REC approval. Was written verbal consent sought from all respondents? 2. Authors briefly need to describe the tool that they used for this sub study. 3. Were there any other ethical issues that the researchers had to address e.g confidentiality issues? ****** 6. 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 Reviewer #2: Yes:** Paul Ndebele [NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.] While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. 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Revision 1
15 Mar 2021 Author Response Reviewer#1: 1. At the moment, there is insufficient information given about the study methods (sampling and data collection) to have a good understanding of what was done and why, and therefore to have confidence in the findings. This is a large participant group – its looks like a total of 184 individuals (health providers, community leaders and community members) were included, although this number is not directly stated. There is also very little information given about the participants, for example it’s not clear what kinds of ‘community leaders’ were involved, or what the socioeconomic and demographic background of the participants is, or how many were HIV positive. I imagine some of the community leaders and health workers might have been HIV positive, but this has not been explored. Importantly, limited contextual information is provided across the communities involved. In fact, there is no description of what is meant by a community – it seems likely these are geographic communities – or how the 8 communities were selected for inclusion. All of these areas should be explained in more depth – particularly for a qualitative study - including more contextual information about the communities, such as their approximate size as well as their socioeconomic and cultural features. The only supplementary materials I accessed were data collection tools. I suggest more information on the participants, participant groups and study site context should be included, and a table of participants developed to give more detail to this account. It’s also not clear why the team decided to use a random sampling method to identify the community members included in this study, given its qualitative nature. This seems to mix underlying paradigms for qualitative and quantitative research in a very confusing way. I suspect this may have been a practical choice – given the need to sample within a large number of (potentially) large communities – but in the end it’s not at all clear how they ‘narrowed down’ to the final 112 individuals across 8 communities included. Response: We appreciate the reviewer’s comments and have now included a table describing the participant characteristics by cohort (Table 1) page 4. We have also revised our description of our sampling approach, which involved both traditional qualitative purposive sampling approaches as well as a systematic sampling approach to obtain a heterogeneous community cohort, which indeed was a practical strategy to compose a cohort with the range of salient characteristics we wanted to be sure to include. The section now reads as follows: The qualitative study utilized both purposive and systematic sampling methods to compose three cohorts of participants: community leaders, HIV care providers, and community members. The cohort of community leaders (n=32) was selected purposively for gender balance from among the local leaders engaged by SEARCH to help mobilize communities (including members of local councils, Village Health Teams and fishing community leaders, selected for the cohort independent of their HIV status). The cohort of providers (n=50) was selected purposively to include the cadre of clinical officers, nurses, and HIV counsellors providing care at clinics serving the study communities. To attain heterogeneity in the community cohort by theoretically salient characteristics such as gender and HIV status, the cohort of n=112 community members were systematically selected (systematic progression through a list of eligible participants organized by HIV status and gender) from a stratified random sub-sample of HIV-positive and -negative community members participating in a household socioeconomic survey in the study communities. To attain heterogeneity in the sample by treatment status at baseline the HIV-positive members the community cohort were further selected to compose equally-sized groups of individuals linked to care but with high CD4 count/unsuppressed viral load, those linked to care with suppressed viral load, and those unlinked to HIV care at baseline. All cohorts sought balance by gender to ensure a range of perspectives. A total of 184 interviews were included within the analyses. Participant characteristics are presented in Table 1. 2. The discussion mainly draws on the literature to identify and discuss enacted, internalized and anticipated forms of stigma in the data. I particularly found ideas around anticipated stigma helpful and clearly related to the findings. Given that the authors particularly note the Parker and Aggleton paper (2003), I was surprised not to read more about structural level influences within the discussion, around issues of power and existing inequalities. Gender is clearly pulled out, which is important, but the literature on stigma strongly underlines the importance of considering wider interrelated structural influences in developing interventions or programmes on HIV stigma, so that the discussion seems to be missing an important element, given the underlying aims of the study. Response: Thank you for this recommendation; we now include text about the implications of our findings for addressing structural factors underlying the production of stigma (see page 6). Minor comments 3. Some sentences in the methods description are hard to understand. For example, on P3, its written that “HIV positive participants were further systematically selected from each community on the basis of randomly generated lists of adults with the following characteristics: high CD4 cell (n=3), suppressed viral load (n=3), and unlinked to HIV care (n=3)”. I suspect it would help to read the main paper for the SEARCH study to understand these descriptions, but it also seems important that this qualitative study should ‘standalone’. Response: As noted above, we have revised the methods section on sampling to improve clarity of the participant categories Page 4 4. In the discussion (P12), the authors write “Similar to other literature, our findings support a dramatic reduction in overt cases of enacted stigma since the early days of the epidemic” – but no findings are presented to support this point, as far as I can see. Response: We now clarify that participants themselves reported that overt cases of enacted stigma had declined, compared to past years, earlier in the epidemic in these communities. Reviewer #2: This sub-study is well justified and findings are useful in guiding the main study. 5. Regarding ethical considerations, authors only discussed REC approval. Was written verbal consent sought from all respondents? Response: We have edited the ethical statement to include how informed consent was obtained; that it was written and voluntary informed consent. We also describe how confidentiality for the study participants was ensured. The study does not include minors, those stipulated in the age category 15-18 years were emancipated minors and therefore no need for assent and consent from parents or guardians. 6. Authors briefly need to describe the tool that they used for this sub study. Response: We have described our study instruments on page 6 and have attached them as supplemental material. 7. Were there any other ethical issues that the researchers had to address e.g. confidentiality issues? Response: We provide details regarding how the study handled confidentiality concerns within the data collection and analysis section. (page 5) Attachments Attachment Submitted filename: Akatukwasa_Rebuttal letter.docx https://doi.org/10.1371/journal.pone.0249462.r002
19 Mar 2021 Decision Letter - Matt A Price, Editor Dimensions of HIV-related stigma in rural communities in Kenya and Uganda at the start of a large HIV ‘test and treat’ trial PONE-D-20-20464R1 Dear Dr. Akatukwasa, 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. An invoice for payment will follow shortly after the formal acceptance. To ensure an efficient process, please log into Editorial Manager at http://www.editorialmanager.com/pone/, click the 'Update My Information' link at the top of the page, and double check that your user information is up-to-date. If you have any billing related questions, please contact our Author Billing department directly at authorbilling@plos.org. If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org. Kind regards, Matt A Price Academic Editor PLOS ONE Additional Editor Comments (optional): Reviewers' comments: https://doi.org/10.1371/journal.pone.0249462.r003
Formally Accepted
7 May 2021 Acceptance Letter - Matt A Price, Editor PONE-D-20-20464R1 Dimensions of HIV-related stigma in rural communities in Kenya and Uganda at the start of a large HIV ‘test and treat’ trial. Dear Dr. Akatukwasa: I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department. If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org. If we can help with anything else, please email us at plosone@plos.org. Thank you for submitting your work to PLOS ONE and supporting open access. Kind regards, PLOS ONE Editorial Office Staff on behalf of Dr. Matt A Price Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0249462.r004

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