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Reimer-Kirkham, Sheryl, Astle, Barbara, Ero, Ikponwosa, Imafidon, Elvis and Strobell, Emma (2020) 'Mothering, Albinism and Human Rights: The Disproportionate Impact of Health-Related Stigma in Tanzania.' Foundations of Science. (Forthcoming)

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Abstract

In many parts of sub-Saharan Africa, mothers impacted by the genetic condition of albinism, whether as mothers of children with albinism or themselves with albinism, are disproportionately impacted by a constellation of health-related stigma, social determinants of health (SDH), and human rights violations. In a critical ethnographic study in Tanzania, we engaged with the voices of mothers impacted by albinism and key stakeholders to elucidate experiences of stigma. Their narratives revealed internalized subjective stigma, social stigma such as being ostracized by family and community, and structural stigma on account of lack of access to SDH. An analysis of health systems as SDH revealed stigmatizing attitudes and behaviours of healthcare providers, especially at the time of birth; a lack of access to timely quality health services, in particular skin and eye care; and a lack of health-related education about the cause and care of albinism. Gender inequality as another SDH featured prominently as an amplifier of stigma. The findings pose implications for research, policy, and practice. A concrete avenue to de-stigmatization of mothers impacted by albinism exists by the application of principles of human rights, particularly equality and non-discrimination; contextual analysis of cultural dynamics including relevant ontology; meaningful participation of rights-claimants, such as peer groups of mothers; and accountability of governments and their obligation to ensure access to health information as a key social determinant of the right to health.

Item Type: Journal Article
SOAS Departments & Centres: Departments and Subunits > School of History, Religions & Philosophies > Department of Religions & Philosophies
ISSN: 1572-8471
Copyright Statement: Open Access: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
DOI (Digital Object Identifier): https://doi.org/10.1007/s10699-020-09701-0
Date Deposited: 30 Nov 2020 09:59
URI: https://eprints.soas.ac.uk/id/eprint/33527
Funders: Other

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