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.