Mothering, Albinism and Human Rights: The Disproportionate Impact of Health-Related Stigma in Tanzania

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

Mapping a research-advocacy-policy agenda on human rights and albinism: a mixed methods project

Background: Persons with albinism face challenges to their wellbeing, safety, and security, ranging from vision impairment and skin cancer to stigma and discrimination. In some regions, they also face human rights atrocities including mutilation and murder. Research on human rights and albinism is a relatively new field that has gained momentum since the United Nations appointment of an Independent Expert on the enjoyment of human rights by persons with albinism. In this paper, we present the results of a mixed methods study undertaken to identify priorities for research, advocacy, and policy on albinism and human rights. Methods: The first component was a synthesis of peer-reviewed and grey literatures at the nexus of albinism, spiritual/cultural beliefs and practices, and human rights. We then conducted a priority-setting survey, informed by Delphi methods, on extant knowledge-practice gaps and research, advocacy, and policy priorities. Inclusion criteria included demonstrated expertise in the field (e.g., peer-reviewed publications, funded research), membership on national or international associations, or advocacy (civil society organizations) of more than 2 years in albinism and human rights. Thereafter, we gathered leading researchers, policy-makers, and civil society stakeholders for a Roundtable to gain consensus on these priorities. Results: Access to skin and vision care, and education were not deemed high priority for research, likely because the evidence supporting the need for these is well established. However, they were priorities for advocacy and policy: what is needed is mobilization of this evidence through advocacy and implementation of such services (policy). Other social determinants of health (rurality, poverty, and gender equality) are present as subtext in the findings, more so than priorities for research, advocacy, or policy, despite their preponderance in the lives of persons with albinism. Research was prioritized on stigma and discrimination; advocacy; and witchcraft, but with some differentiation between Global North and Global South priorities. Priorities for research, advocacy, and policy vary in keeping with the explanatory frameworks at play, including how harmful practices and witchcraft are viewed. Conclusions: The lived experience of albinism is profoundly shaped by the social determinants of health (SDOH). Threats to the security and well-being of persons with albinism should be viewed through a human rights lens that encompasses the explanatory frameworks at play

Birth stories of South African mothers of children with albinism : a critical human rights analysis

BACKGROUND : The genetic condition of oculocutaneous albinism is disproportionately present in Africa. Little research has addressed the experiences of mothers impacted by albinism, even though they are more likely to be impacted by human rights violations. METHODS : A qualitative study was designed to examine the resilience of mothers affected by albinism in South Africa. Virtual and in-person fieldwork was conducted with the facilitation of community-based researchers and local cultural liaisons. FINDINGS : Giving birth to a child with albinism in South Africa, as in many parts of sub-Saharan Africa, was a life-defining moment for mothers and their families, setting them on a trajectory of health-related stigma, gender inequalities, reduced access to social determinants of health, and other human rights violations. Mothers engaged in sense-making processes shaped by the responses of birth attendants and families, and that reflected social discourses. Their resilience was impacted by access to health teaching, genetic counselling, and health and social services, which were often incomplete or absent all together. Civil society organizations, peer groups, and faith communities were vital in filling these gaps. CONCLUSIONS : The experience giving birth to a child with albinism was both the same and different compared to mothers forty years earlier. What varied was the digital availability of health information; progressive health and social policies and resourcing; and human rights instruments. These transformations point to best practices to support mothers’ resilience.Social Sciences and Humanities Research Council Canada.https://www.elsevier.com/locate/ijanshj2024Centre for Human RightsNursing ScienceSDG-03:Good heatlh and well-beingSDG-10:Reduces inequalitiesSDG-16:Peace,justice and strong institution

Shifting Wrongs to Rights: Lessons in Human Rights from the Situation of Mothers Impacted by Albinism in Africa

Abstract Debates about legitimizing human rights in Africa have centred on making universal human rights principles relevant to local social and cultural contexts. Localizing human rights norms requires seeing human rights in terms of relevance to specific situations rather than as the application of abstract principles. In this paper, scholars and advocates analyse the challenges in the practice of human rights, with a focus on mothers impacted by albinism, whether as mothers of children with albinism or as mothers with albinism themselves. Women and girls impacted by albinism are particularly vulnerable to human rights violations and reflect the unfulfilled promise of the United Nations principle to ‘Leave no one behind’. On account of intersecting factors—including denial of humanity; gendered stigma, discrimination and disenfranchisement; lack of access to the social determinants of health; and violence—mothers impacted by albinism are truly amongst those ‘furthest behind’. Drawing on the frameworks of vernacularization and culturalization, we conceptualize and contextualize human rights in relation to the unique experiences of mothers impacted by albinism in Tanzania, South Africa, and Ghana. Our analysis takes up four particularities that pose challenges to protecting the rights of mothers impacted by albinism: personhood as foundation for human rights; the communal nature of human rights; proportionality and human rights; and the intersectional nature of human rights. These particularities shed light on human rights practice for mothers impacted by albinism and carry implications for human rights practice more broadly

Birth stories of South African mothers of children with albinism: A critical human rights analysis

Background: The genetic condition of oculocutaneous albinism is disproportionately present in Africa. Little research has addressed the experiences of mothers impacted by albinism, even though they are more likely to be impacted by human rights violations. Methods: A qualitative study was designed to examine the resilience of mothers affected by albinism in South Africa. Virtual and in-person fieldwork was conducted with the facilitation of community-based researchers and local cultural liaisons. Findings: Giving birth to a child with albinism in South Africa, as in many parts of sub-Saharan Africa, was a life-defining moment for mothers and their families, setting them on a trajectory of health-related stigma, gender inequalities, reduced access to social determinants of health, and other human rights violations. Mothers engaged in sense-making processes shaped by the responses of birth attendants and families, and that reflected social discourses. Their resilience was impacted by access to health teaching, genetic counselling, and health and social services, which were often incomplete or absent all together. Civil society organizations, peer groups, and faith communities were vital in filling these gaps. Conclusions: The experience giving birth to a child with albinism was both the same and different compared to mothers forty years earlier. What varied was the digital availability of health information; progressive health and social policies and resourcing; and human rights instruments. These transformations point to best practices to support mothers’ resilience

A Human Rights and Equity-Oriented Response to the Birth Stories of Families Impacted by Albinism in Sub-Saharan Africa: Intersectoral Partnerships for Enhanced Health Professions’ Education

This global health research project focuses on a neglected condition (albinism) and the health inequities and human rights violations faced by mothers who give birth to a baby with albinism. For many women, the delivery marks the beginning of a sequelae of life-altering societal responses that ultimately prevent her and her baby from the full enjoyment of their human rights. Giving birth to a baby with albinism can precipitate abandonment by family and community, intimate partner violence, and precarity. A synthesis of the evidence regarding the experiences surrounding the birth of a baby with albinism for family members and their carers in Africa is needed to inform research and practice. Specifically, this synthesis will support a broader ongoing study exploring how the perinatal experiences of mothers who give birth to a baby with albinism can be improved through health services, health professions education, and the development of equity-oriented and contextually relevant educational strategies, with the overarching aim of promoting, protecting, and fulfilling their human rights. This evidence synthesis is the first phase of four of our study (to read more: www.motheringandalbinism.com). As we are taking a participatory approach, it will facilitate an interdisciplinary dialogue with our intersectoral network to come to a shared understanding of key concepts and findings to inform our collective work. No other evidence synthesis was found on this topic and this knowledge is crucial to support the development of our equity-oriented and contextually relevant educational strategies. Although we had conducted previous synthesis work on albinism and human rights (Reimer-Kirkham et al., 2019; Reimer-Kirkham et al., in review), the focus of this current synthesis is distinct as it targets the perinatal period and broadens the scope to health professions education. This synthesis will inform the next phases of our study and gather insights from relevant sources to present a comprehensive synthesis of birthing experiences of mothers, families, and carers to the birth of a baby with albinism in sub-Saharan Africa