A participatory systematic review on human rights and the birth of a child with albinism in sub-Saharan Africa
PMCID: PMC12699010
PMID: 41378511
Abstract
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
Full Text
As integrative reviews can include interest-holder consultations, we collaborated with PWA, mothers of children with albinism, healthcare workers, and advocates. These consultations fostered relational approaches that blended distinct perspectives, enhanced the meaningfulness and usefulness of our findings
and prevented the dominance of Western ways of knowing. We held six online engagement meetings, and one in-person gathering, with African and Western academics and interest-holders throughout the planning and conduct of the review (see Figure 1). We developed a shared understanding of our intentions and focus, refined our inclusion/exclusion criteria and search strategies, determined information to be gathered, and validated our analysis and findings.
The academic database search retrieved 5509 articles, and after screening, we included 35 academic articles and 47 reports (total n = 82) from the databases and gray literature searches (see Figure 1 for selection details, as well as supplemental materials). After 2248 duplicates were removed, 3261 titles/abstracts were screened against inclusion criteria, and 3115 articles were excluded. The remaining 146 articles were read in full, and 114 were excluded (see Figure 1 for reasons). The academic articles comprised qualitative (n = 18) and synthesis (n = 1) designs, and discussion articles (n = 16). For gray literature sources, 25 were reports produced by NGOs (e.g., UN), and the rest were thesis and dissertations (n = 8), book chapters (n = 7), and essays and educational materials (n = 7). Of the included sources, 69% were published in the last 10 years. Authors represented fields associated with health, social sciences, education, philosophy, religion, and law. The majority of the academic literature had first authors from the Global North (n = 23, 66%). Of the 82 sources, only 6 articles had a substantial focus on the experiences at birth and the first year of the child(ren)’s life. The remaining sources contributed to specific aspects of analysis with interpretive and contextual insights (i.e., as latent data).
Our analysis provides detailed, synthesized evidence of the immediate experiences of giving birth to a CWA (Theme 1), multi-site violence in response to the birth of a CWA (Theme 2), and the mediating structural factors that shape these experiences (Theme 3). Through a human-rights lens, we probed the included literature not just for individual-level responses, but more so for state responses, given their position as duty bearers (Theme 4). Our human rights approach is based on applicable international, regional, and national human rights principles and norms. When the data are read through strengths-based and trauma- and violence-informed approaches, a matrix of structural violence becomes apparent across the themes as a mixing of obstetrical violence, gender-based and infant violence, symbolic violence, and the institutional violence of inadequate health and education systems. Symbolic violence, a concept built on Pierre Bourdieu’s symbolic power, refers to non-physical forms of violence that operate through the distortion of symbols, ideas, and beliefs. It is a social form of power that circulates at the level of culture, shaping individuals’ beliefs and behaviors. Symbolic violence is particularly effective because it is often internalized, leading individuals to accept and reproduce social inequities. It is also internalized by those who experience it—such that individuals (PWA in our analysis) come to see the existing social order as natural and inevitable. These intersecting acts of violence are inextricably embedded in historical structural issues, colonial legacies, and neocolonial realities of Africa
that are offset and resisted by Africa-based epistemologies which open space for strengths-based interpretations to emerge (see Table 1 for structure of thematic analysis).
In addition to the gendered abuse experienced by women who give birth to a CWA, infanticide is mentioned in 46% (n = 38) of the sources, and more so in the gray literature than the academic (see Table 2 for examples of references to infant violence). To interpret the prevalence of these mentions of infanticide (along with threats, attacks, mutilation), we examined firsthand reports in our primary sample. Only two of the 134 mothers reported direct infant violence: a case in Tanzania of a kidnapped child having a finger cut off
; and in a second instance, a birth attendant asked the grandmother what to do with the child:
The dominant representation of the causes of discrimination and violence tended toward pejorative references to “myths” and “superstitions.” The cataloguing of beliefs could be grouped as natural, scientific, or spiritualized explanations (see Table 3 for causation understandings of the birth of a CWA). Looking at beliefs that relate to natural causes for albinism (n = 16 sources; 20%), numerous beliefs have been cited to explain the birth of a CWA,
many of which are physiological responses stemming from social interactions with a PWA. While more articles mentioned scientific/genetic explanations for albinism (n = 22; 27%), these explanations are often reported to be held alongside other explanations. As to spiritual explanations for albinism (n = 24; 29%), these were presented as positive beliefs (e.g., as a blessing), or negative beliefs (e.g., as a curse or punishment) about albinism. Negative spiritualized beliefs often evoked fear and caused people to hate or react violently to PWA.
Negative and inaccurate underlying explanations for albinism, often taken-for-granted and unquestioned, operate as forms non-physical or symbolic violence. Misbeliefs were internalized by those who wielded them and the mothers impacted by albinism who experienced them, such that actions on the misbeliefs might seem natural and inevitable. The selected sources include some insight as to how resistance to symbolic violence may come about through a combination of individual insight and structural protective factors.
Our analysis captured policy options (also referred to as levers or approaches) for how governments should respond to the challenge of improving perinatal experiences of mothers impacted by albinism. We adapted Roberts et al.’s
framework to show how these recommendations can be understood on a spectrum from direct state provision at one end, to deferring to non-state actors such as NGOs at the other end of government involvement. Although public provision is presumably more difficult in low-resource countries, of the policy options named the majority fall to public provision and legislation. Where national health systems lack supports, NGOs filled in the gaps. NGOs can provide some services, but as Buyco et al.
argued, ultimately it is the responsibility of provincial and national departments of health to provide services. Table 4 displays the balance and type of policy levers that are recommended.
The evidence portrays a situation that is less a policy vacuum than it is an implementation gap.
The literature identified policy vacuums related to lack of a national action plan, extending disability grants and funding to include, creating national guidelines for RMC,
developing census and HR monitoring databases,
and incorporating albinism in a national cancer strategy. Implementation gaps (and the correlated consequences) were multiple and at various levels—for example, not implementing SDGs,
not enforcing laws about human rights violations or investigating crimes against PWA,
and not providing access to health.
The World Health Organization’s
framework on Policy Levers to Enhance Health Workforce Performance for Compassionate and Respectful Care is instructive as a policy analysis framework specific to the intent of this systematic review (see Table 5 for the application of this framework). The strength of this framework is the multi-level analysis, from individuals to organizations to systems, such that respectful care does not rest solely on the virtues and values of a birth attendant; rather the experience of individuals is contingent upon organizational and systems responses.
A range of human rights instruments are named in the included sources (see Table 6). However, none of these international instruments explicitly relate these rights to birth. Based on our synthesis of the experience of families upon the birth of a CWA in Africa, a pattern exists as to the rights that are most likely to be threatened, particularly the right to be seen as a person with full rights. Though not listed in the included sources, legal authority for this right includes the International Convention on Civil and Political Rights, 1966, Article 17, and the Convention on the Rights of the Child, 1990, Article 16, 23.
The life-defining birth of a CWA activates a family’s trajectory of precarity or flourishing. The suffering and trauma faced by many mothers who give birth to a CWA started in the delivery room with their own surprise and fear, which were amplified by stigmatizing responses from birth attendants, a lack of access to necessary health services, and social exclusion exhibited by fathers, family, and community. Too often, structural violence—as a web of obstetrical, symbolic, gender-based and infanticide, and institutional violence—characterized the perinatal period. Under-resourced healthcare systems and health professions education, together with gaps in implementing human rights conventions, contributed to a trajectory of precarity. Though not necessarily drawing on specific human rights principles and norms, many mothers, as human rights claimants and defenders resisted dominant gendered narratives, sought out health information, and engaged in peer support. Service delivery and government responses are needed to address the precarity of mothers and their children with albinism, and must be designed with awareness of, and responsiveness to, the impact of structural violence on their lived realities. In this way, protective factors rooted in Indigenous epistemologies can shield and nurture the family of the newborn with albinism, toward full enjoyment of human rights. Table 7 summarizes key findings, including the nature of the supporting evidence.
We identified several types of gaps in the existing literature: evidentiary, implementation, and theoretical. Evidentiary gaps are those that require empirical data and the generation of new knowledge, such as the gap on how strengths-based approaches can improve the birth experiences for mothers of a CWA, fathers’ experiences and roles, and long-term mental health effects. Implementation gaps are those situations in which sufficient evidence exists, but is not translated into practice, as with the example of the gaps in implementing human rights instruments. Theoretical gaps stem from the identification of conceptual apparatuses that could be well operationalized to further empirical and implementation efforts (i.e., a need for research and scholarship from critical perspectives that incorporate African epistemologies and tend to gender justice). Table 7 summarizes these gaps in knowledge (some of which are taken up in the next phases of our project) and suggests future research. Albinism research on human rights and psychosocial aspects of albinism in Africa is still a relatively new field. Based on our review, we recommend decolonizing Indigenous methodologies informed by strengths-based approaches and led by PWA and scholars in Africa in conjunction with intersectoral networks (see Table 7 for Topics).
Sections
"[{\"pmc\": \"PMC12699010\", \"pmid\": \"41378511\", \"reference_ids\": [\"fig1-17455057251395420\"], \"section\": \"Methods\", \"text\": \"As integrative reviews can include interest-holder consultations, we collaborated with PWA, mothers of children with albinism, healthcare workers, and advocates. These consultations fostered relational approaches that blended distinct perspectives, enhanced the meaningfulness and usefulness of our findings\\n and prevented the dominance of Western ways of knowing. We held six online engagement meetings, and one in-person gathering, with African and Western academics and interest-holders throughout the planning and conduct of the review (see Figure 1). We developed a shared understanding of our intentions and focus, refined our inclusion/exclusion criteria and search strategies, determined information to be gathered, and validated our analysis and findings.\"}, {\"pmc\": \"PMC12699010\", \"pmid\": \"41378511\", \"reference_ids\": [\"fig1-17455057251395420\", \"fig1-17455057251395420\"], \"section\": \"Findings: Description of sample\", \"text\": \"The academic database search retrieved 5509 articles, and after screening, we included 35 academic articles and 47 reports (total n\\u2009=\\u200982) from the databases and gray literature searches (see Figure 1 for selection details, as well as supplemental materials). After 2248 duplicates were removed, 3261 titles/abstracts were screened against inclusion criteria, and 3115 articles were excluded. The remaining 146 articles were read in full, and 114 were excluded (see Figure 1 for reasons). The academic articles comprised qualitative (n\\u2009=\\u200918) and synthesis (n\\u2009=\\u20091) designs, and discussion articles (n\\u2009=\\u200916). For gray literature sources, 25 were reports produced by NGOs (e.g., UN), and the rest were thesis and dissertations (n\\u2009=\\u20098), book chapters (n\\u2009=\\u20097), and essays and educational materials (n\\u2009=\\u20097). Of the included sources, 69% were published in the last 10\\u2009years. Authors represented fields associated with health, social sciences, education, philosophy, religion, and law. The majority of the academic literature had first authors from the Global North (n\\u2009=\\u200923, 66%). Of the 82 sources, only 6 articles had a substantial focus on the experiences at birth and the first year of the child(ren)\\u2019s life. The remaining sources contributed to specific aspects of analysis with interpretive and contextual insights (i.e., as latent data).\"}, {\"pmc\": \"PMC12699010\", \"pmid\": \"41378511\", \"reference_ids\": [\"table1-17455057251395420\"], \"section\": \"Findings: Synthesized interpretive themes\", \"text\": \"Our analysis provides detailed, synthesized evidence of the immediate experiences of giving birth to a CWA (Theme 1), multi-site violence in response to the birth of a CWA (Theme 2), and the mediating structural factors that shape these experiences (Theme 3). Through a human-rights lens, we probed the included literature not just for individual-level responses, but more so for state responses, given their position as duty bearers (Theme 4). Our human rights approach is based on applicable international, regional, and national human rights principles and norms. When the data are read through strengths-based and trauma- and violence-informed approaches, a matrix of structural violence becomes apparent across the themes as a mixing of obstetrical violence, gender-based and infant violence, symbolic violence, and the institutional violence of inadequate health and education systems. Symbolic violence, a concept built on Pierre Bourdieu\\u2019s symbolic power, refers to non-physical forms of violence that operate through the distortion of symbols, ideas, and beliefs. It is a social form of power that circulates at the level of culture, shaping individuals\\u2019 beliefs and behaviors. Symbolic violence is particularly effective because it is often internalized, leading individuals to accept and reproduce social inequities. It is also internalized by those who experience it\\u2014such that individuals (PWA in our analysis) come to see the existing social order as natural and inevitable. These intersecting acts of violence are inextricably embedded in historical structural issues, colonial legacies, and neocolonial realities of Africa\\n that are offset and resisted by Africa-based epistemologies which open space for strengths-based interpretations to emerge (see Table 1 for structure of thematic analysis).\"}, {\"pmc\": \"PMC12699010\", \"pmid\": \"41378511\", \"reference_ids\": [\"table2-17455057251395420\"], \"section\": \"\\u201cWhat should we do with the baby?\\u201d Infant violence and infanticide\", \"text\": \"In addition to the gendered abuse experienced by women who give birth to a CWA, infanticide is mentioned in 46% (n\\u2009=\\u200938) of the sources, and more so in the gray literature than the academic (see Table 2 for examples of references to infant violence). To interpret the prevalence of these mentions of infanticide (along with threats, attacks, mutilation), we examined firsthand reports in our primary sample. Only two of the 134 mothers reported direct infant violence: a case in Tanzania of a kidnapped child having a finger cut off\\n; and in a second instance, a birth attendant asked the grandmother what to do with the child:\"}, {\"pmc\": \"PMC12699010\", \"pmid\": \"41378511\", \"reference_ids\": [\"table3-17455057251395420\"], \"section\": \"\\u201cIdeologies that sustain\\u201d: Explanatory frameworks perpetuate symbolic violence\", \"text\": \"The dominant representation of the causes of discrimination and violence tended toward pejorative references to \\u201cmyths\\u201d and \\u201csuperstitions.\\u201d The cataloguing of beliefs could be grouped as natural, scientific, or spiritualized explanations (see Table 3 for causation understandings of the birth of a CWA). Looking at beliefs that relate to natural causes for albinism (n\\u2009=\\u200916 sources; 20%), numerous beliefs have been cited to explain the birth of a CWA,\\n many of which are physiological responses stemming from social interactions with a PWA. While more articles mentioned scientific/genetic explanations for albinism (n\\u2009=\\u200922; 27%), these explanations are often reported to be held alongside other explanations. As to spiritual explanations for albinism (n\\u2009=\\u200924; 29%), these were presented as positive beliefs (e.g., as a blessing), or negative beliefs (e.g., as a curse or punishment) about albinism. Negative spiritualized beliefs often evoked fear and caused people to hate or react violently to PWA.\\n Negative and inaccurate underlying explanations for albinism, often taken-for-granted and unquestioned, operate as forms non-physical or symbolic violence. Misbeliefs were internalized by those who wielded them and the mothers impacted by albinism who experienced them, such that actions on the misbeliefs might seem natural and inevitable. The selected sources include some insight as to how resistance to symbolic violence may come about through a combination of individual insight and structural protective factors.\\n\"}, {\"pmc\": \"PMC12699010\", \"pmid\": \"41378511\", \"reference_ids\": [\"table4-17455057251395420\"], \"section\": \"\\u201cIt\\u2019s a pity the government doesn\\u2019t help us\\u201d: State obligations and the spectrum of government involvement\", \"text\": \"Our analysis captured policy options (also referred to as levers or approaches) for how governments should respond to the challenge of improving perinatal experiences of mothers impacted by albinism. We adapted Roberts et al.\\u2019s\\n framework to show how these recommendations can be understood on a spectrum from direct state provision at one end, to deferring to non-state actors such as NGOs at the other end of government involvement. Although public provision is presumably more difficult in low-resource countries, of the policy options named the majority fall to public provision and legislation. Where national health systems lack supports, NGOs filled in the gaps. NGOs can provide some services, but as Buyco et al.\\n argued, ultimately it is the responsibility of provincial and national departments of health to provide services. Table 4 displays the balance and type of policy levers that are recommended.\"}, {\"pmc\": \"PMC12699010\", \"pmid\": \"41378511\", \"reference_ids\": [\"table5-17455057251395420\"], \"section\": \"\\u201cIt\\u2019s a pity the government doesn\\u2019t help us\\u201d: State obligations and the spectrum of government involvement\", \"text\": \"The evidence portrays a situation that is less a policy vacuum than it is an implementation gap.\\n The literature identified policy vacuums related to lack of a national action plan, extending disability grants and funding to include, creating national guidelines for RMC,\\n developing census and HR monitoring databases,\\n and incorporating albinism in a national cancer strategy. Implementation gaps (and the correlated consequences) were multiple and at various levels\\u2014for example, not implementing SDGs,\\n not enforcing laws about human rights violations or investigating crimes against PWA,\\n and not providing access to health.\\n The World Health Organization\\u2019s\\n framework on Policy Levers to Enhance Health Workforce Performance for Compassionate and Respectful Care is instructive as a policy analysis framework specific to the intent of this systematic review (see Table 5 for the application of this framework). The strength of this framework is the multi-level analysis, from individuals to organizations to systems, such that respectful care does not rest solely on the virtues and values of a birth attendant; rather the experience of individuals is contingent upon organizational and systems responses.\"}, {\"pmc\": \"PMC12699010\", \"pmid\": \"41378511\", \"reference_ids\": [\"table6-17455057251395420\"], \"section\": \"\\u201cNot for lack of legal frameworks\\u201d: Human rights and the birth of a CWA\", \"text\": \"A range of human rights instruments are named in the included sources (see Table 6). However, none of these international instruments explicitly relate these rights to birth. Based on our synthesis of the experience of families upon the birth of a CWA in Africa, a pattern exists as to the rights that are most likely to be threatened, particularly the right to be seen as a person with full rights. Though not listed in the included sources, legal authority for this right includes the International Convention on Civil and Political Rights, 1966, Article 17, and the Convention on the Rights of the Child, 1990, Article 16, 23.\"}, {\"pmc\": \"PMC12699010\", \"pmid\": \"41378511\", \"reference_ids\": [\"table7-17455057251395420\"], \"section\": \"Mapping current state of knowledge (sense-making)\", \"text\": \"The life-defining birth of a CWA activates a family\\u2019s trajectory of precarity or flourishing. The suffering and trauma faced by many mothers who give birth to a CWA started in the delivery room with their own surprise and fear, which were amplified by stigmatizing responses from birth attendants, a lack of access to necessary health services, and social exclusion exhibited by fathers, family, and community. Too often, structural violence\\u2014as a web of obstetrical, symbolic, gender-based and infanticide, and institutional violence\\u2014characterized the perinatal period. Under-resourced healthcare systems and health professions education, together with gaps in implementing human rights conventions, contributed to a trajectory of precarity. Though not necessarily drawing on specific human rights principles and norms, many mothers, as human rights claimants and defenders resisted dominant gendered narratives, sought out health information, and engaged in peer support. Service delivery and government responses are needed to address the precarity of mothers and their children with albinism, and must be designed with awareness of, and responsiveness to, the impact of structural violence on their lived realities. In this way, protective factors rooted in Indigenous epistemologies can shield and nurture the family of the newborn with albinism, toward full enjoyment of human rights. Table 7 summarizes key findings, including the nature of the supporting evidence.\"}, {\"pmc\": \"PMC12699010\", \"pmid\": \"41378511\", \"reference_ids\": [\"table7-17455057251395420\", \"table7-17455057251395420\"], \"section\": \"Mapping current state of knowledge (sense-making)\", \"text\": \"We identified several types of gaps in the existing literature: evidentiary, implementation, and theoretical. Evidentiary gaps are those that require empirical data and the generation of new knowledge, such as the gap on how strengths-based approaches can improve the birth experiences for mothers of a CWA, fathers\\u2019 experiences and roles, and long-term mental health effects. Implementation gaps are those situations in which sufficient evidence exists, but is not translated into practice, as with the example of the gaps in implementing human rights instruments. Theoretical gaps stem from the identification of conceptual apparatuses that could be well operationalized to further empirical and implementation efforts (i.e., a need for research and scholarship from critical perspectives that incorporate African epistemologies and tend to gender justice). Table 7 summarizes these gaps in knowledge (some of which are taken up in the next phases of our project) and suggests future research. Albinism research on human rights and psychosocial aspects of albinism in Africa is still a relatively new field. Based on our review, we recommend decolonizing Indigenous methodologies informed by strengths-based approaches and led by PWA and scholars in Africa in conjunction with intersectoral networks (see Table 7 for Topics).\"}]"
Metadata
"{\"cover-date\": \"January-December 2025\", \"typesetter\": \"ts1\"}"