BMJ Open: first published as 10.1136/bmjopen-2020-040992 on 23 February 2021. Downloaded from PEER REVIEW HISTORY BMJ Open publishes all reviews undertaken for accepted manuscripts. Reviewers are asked to complete a checklist review form (http://bmjopen.bmj.com/site/about/resources/checklist.pdf) and are provided with free text boxes to elaborate on their assessment. These free text comments are reproduced below. ARTICLE DETAILS TITLE (PROVISIONAL) Reactions to and explanations for the birth of a baby with albinism: A qualitative study in Busoga, Uganda. AUTHORS Taylor, Julie; Bradbury-Jones, C; Ogik, Peter; Kawuma, Fazira; Betts, Jane; Lund, Patricia VERSION 1 – REVIEW REVIEWER Professor Eleanor Ross Centre for Social Development in Africa University of Johannesburg South Africa REVIEW RETURNED 02-Jul-2020 GENERAL COMMENTS I applaud the authors on this beautifully written manuscript and their sensitivity in dealing with this important issue. Please include a section on limitations of the study. It would also be helpful to mention any efforts made to enhance trustworthiness of the data. REVIEWER Giorgio Brocco Freie Universitaet Berlin REVIEW RETURNED 16-Jul-2020 http://bmjopen.bmj.com/ GENERAL COMMENTS The article, untitled “Reactions to and explanations for the birth of a baby with albinism: A qualitative study in Uganda”, seeks to explore reactions, explanations, and narratives bout the birth of children with albinism in the Busoga sub-region (kingdom) in the Eastern part of Uganda. The article is relevant in several aspects and deals with a topic that has galvanized lots of interest among scholars, journalists, politicians, NGO workers, and members of on September 26, 2021 by guest. Protected copyright. (inter)national institutions over the last years. The analysis provides the readers with significant research data and information on the various religious-moral reactions and explanations given for the births of children with albinism. However, specific issues have to be tackled to improve the article further. Hence, I consider the article as publishable on the condition of minor revisions. As it follows, I endeavor to indicate broad suggestions and queries and detailed amendments and additions to improve the manuscript. Therefore, I hope my comments can help the authors to revise the article. The first comment regards the article’s title. Since the research has been carried out in the Busoga region with its specific historical, cultural, and social configurations, it appears to be inaccurate to refer these birth narratives to the entire national territory. Hence, the exact region where the research was conducted should appear in the title. 1 BMJ Open: first published as 10.1136/bmjopen-2020-040992 on 23 February 2021. Downloaded from Could the authors provide more information on the social, economic, and political aspects of Uganda and the Busoga region? (P.6) The author should underline the role played by NGOs and governmental organizations in spreading biomedical and religious ideas about albinism. Furthermore, they should highlight their research positionality in the field in the sense that the opinions/ideas expressed by the research participants could be influenced by the presence of and recruitment process by NGO staff members and representatives. Why do the authors choose to use “witchcraft and sorcery” as terms for referring to traditional/local healing practices? Which is the interrelation between religious beliefs (e.g. Christian, Muslim, traditional religions) and local healing practices? I am of the opinion that the authors should integrate some research on healing practices/witchcraft carried out in Uganda with the anthropological studies conducted in Malawi, Tanzania, and other Southern African countries. This can help the reader to figure out the moral-religious constellations around the births of children with albinism in this specific region (p.7). Can the authors expand on the concept of personhood? In which ways is it relevant for the understanding of “unruly” births? In relation to this question, How is a “normal” child conceived in cultural and social terms in the Busoga region and Uganda at large? (p.8) Could the authors explain the concept of “animal totem” in relation to other moral-religious ideas? (p.9) How is the verb “produce” translated in the Lusonga language? See page 11. In referring to the hypo-pigmented skin of people with albinism the author should use the following adjectives: hypo-pigmented or lighter skin. http://bmjopen.bmj.com/ VERSION 1 – AUTHOR RESPONSE Reviewer 1 Comments Response I applaud the authors on this beautifully written Thank you very much for your kind comments. manuscript and their sensitivity in dealing with this important issue on September 26, 2021 by guest. Protected copyright. Please include a section on limitations of the The limitations of the study are included in the study. bulleted section following the abstract (as per author instructions). We have expanded on these: Although the unique context of the Busoga sub- region provides important insights, knowledge and practices are contextual and this limits generalisability. Whilst participants appeared to speak freely and openly about their experiences, their ideas and 2 BMJ Open: first published as 10.1136/bmjopen-2020-040992 on 23 February 2021. Downloaded from opinions could have been influenced by the albinism society and its representatives. It would also be helpful to mention any efforts Thank you, this is important. Although this is made to enhance trustworthiness of the data. also covered in the accompanying COREQ checklist, we have added a further statement to this effect in the main text. To enhance trustworthiness of the study, two researchers (JT, PL) undertook the analysis independently then met to agree coding trees and emergent themes. Two more analysts (CB- J, PO) ‘sense’ checked the themes and helped refine these. Analytic discussions informed the final interpretations and narrative. Reviewer 2 Comments The analysis provides the readers with Thank you for your kind comments. significant research data and information on the various religious-moral reactions and explanations given for the births of children with albinism. The first comment regards the article’s title. We have amended the title to reflect this Since the research has been carried out in the important point: Busoga region with its specific historical, cultural, and social configurations, it appears to http://bmjopen.bmj.com/ be inaccurate to refer these birth narratives to the entire national territory. Hence, the exact Reactions to and explanations for the birth of a region where the research was conducted baby with albinism: A qualitative study in should appear in the title. Busoga, Uganda. Could the authors provide more information on We have added more detail to this section to on September 26, 2021 by guest. Protected copyright. the social, economic, and political aspects of address this important point: Uganda and the Busoga region? (P.6) The author should underline the role played by NGOs and governmental organizations in spreading biomedical and religious ideas about The study was undertaken in the Busoga sub- albinism. region (kingdom) in the Eastern part of Uganda, around Lake Victoria with Jinja as the industrial and economic hub. Most of Busoga is very rural and marked by chronic poverty, with heavy reliance on fishing, subsistence farming and roadside trade. Christian and Islamic religions are mainstream, but parallel African beliefs and practices inform rites at birth, marriage and death. Almost 800 persons with albinism are registered with the local association, Source of 3 BMJ Open: first published as 10.1136/bmjopen-2020-040992 on 23 February 2021. Downloaded from the Nile Union of Persons with Albinism (SNUPA). SNUPA’s strong advocacy roots, government connections and wide networks along with a keenness to increase their evidence base made Busoga an ideal setting for conducting this research. There is scant information about albinism in the region and SNUPA is at the forefront of working with child protection and human rights organisations to debunk myths and persuade the government to take action. Furthermore, they should highlight their This is a good point, thank you. We have added research positionality in the field in the sense this as a limitation to the study: that the opinions/ideas expressed by the research participants could be influenced by the presence of and recruitment process by NGO staff members and representatives. Whilst participants appeared to speak freely and openly about their experiences, their ideas and opinions could have been influenced by the albinism society and its representatives. Why do the authors choose to use “witchcraft With respect, we do not think we have used the and sorcery” as terms for referring to words witchcraft or sorcery when referring to traditional/local healing practices? Which is the traditional healing practices. Rather these were interrelation between religious beliefs (e.g. words used by participants to describe Christian, Muslim, traditional religions) and local healing practices? I am of the opinion that the treatment/reaction/behaviours/attitudes to http://bmjopen.bmj.com/ authors should integrate some research on persons with albinism. There can be a spectrum healing practices/witchcraft carried out in of traditional practices, from using a few herbs Uganda with the anthropological studies to those where belief in ‘black’ magic is strong conducted in Malawi, Tanzania, and other (as in Uganda and explained in the section Southern African countries. This can help the before research questions). Indeed there is reader to figure out the moral-religious often a confused picture in between. If we have constellations around the births of children with mistakenly conflated the two then please do albinism in this specific region (p.7). on September 26, 2021 by guest. Protected copyright. give a specific example so that we can amend. We have referred to a number of studies in other countries, your own in Tanzania being particularly illuminative, but also in Malawi, South Africa, Zimbabwe, Zambia and others, as well as Uganda.