A participatory systematic review on human rights and the birth of a child with albinism in sub-Saharan Africa

Background: The period surrounding birth is a crucial and determining time for many women, particularly for those who give birth to a child with albinism (CWA) due to the stigma, discrimination, and threat to safety they immediately encounter, altering their life trajectory. Objectives: To synthesize existing evidence on the human rights surrounding the birth of a baby with albinism in sub-Saharan Africa. Design: We conducted an integrative review through a critical participatory approach. Our review question was; What are the experiences surrounding the birth of a CWA for the mother and father and their carers in sub-Saharan Africa? Data sources and methods: Our study included 35 academic and 47 gray literature articles and reports (for a total of 82 sources) from 9 academic databases and hand searches with relevant sources. We employed a convergent integrated approach to data synthesis and thematic analysis methods. Our study included 82 academic and gray literature articles and reports from 9 academic databases and hand searches with relevant sources. Results: Drawing on African-based perspectives, together with strengths-based, trauma- and violence-informed care, we analyzed the complex lived experiences of mothers who have given birth to a CWA and explored potential sites for transformative change. We identified four themes: (1) Immediate Experiences: The Life-Defining Moment of Birth synthesized the experiences and responses of mothers, families, communities, and health providers to a birth to a baby with albinism; (2) Violent Response to the Birth of a Baby with Albinism depicted the obstetrical violence, symbolic violence of stigma, discrimination, and social exclusion, gendered and sexualized violence, and violence against the baby with albinism; (3) Mediating Sites of Structural Violence and Protective Factors revealed the multiple and interlocking structural sites that deepen the violence shaping the birth experience; and (4) State as Duty Bearer: Human Rights Obligations and the Policy Determinants of Health spotlighted the gaps of and recommendations to the States as duty bearers. Conclusion: Our review revealed not only a matrix of structural violence that characterizes the experience of mothers but also protective factors that become visible with a strengths-based framing. Registration: Open Science Framework (OSF) registration, DOI https://doi.org/10.17605/OSF.IO/83KMC