Albinism, spiritual and cultural practices, and implications for health, healthcare, and human rights: a scoping review

Reimer‐Kirkham, Sheryl; Astle, Barbara; Ero, Ikponwosa; Panchuk, Kristi; Dixon, Duncan

doi:10.1080/09687599.2019.1566051

Cited by 24 publications

(18 citation statements)

References 36 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…First, problematic constructions of masculinity and femininity in the family context were interlaced with stigmatizing beliefs and practices. As evident in the preceding narratives, women were disproportionately blamed for the birth of a child with albinism as gendered speculations (accusation) about causation spring into effect (Reimer-Kirkham et al 2019). Quickly following upon these speculations were concerns about family lineage and how its honour was stained by the birth of a child with albinism.…”

Section: Gender As a Social Determinant Of Healthmentioning

confidence: 95%

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

Reimer‐Kirkham

Astle

Ero³

et al. 2020

Found Sci

Self Cite

View full text Add to dashboard Cite

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.

show abstract

Section: Gender As a Social Determinant Of Healthmentioning

confidence: 95%

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

Reimer‐Kirkham

Astle

Ero³

et al. 2020

Found Sci

Self Cite

View full text Add to dashboard Cite

show abstract

“…This partly explains the gravity of ‘othering’ that PWA are subjected to within the African continent. Studies have affirmed that people without albinism in sub-Saharan Africa engage in the ‘othering’ of PWA, perceiving them as outsiders within the black African communities (Braathen and Ingstad 2006 ; Cruz-Inigo et al 2011 ; Reimer-Kirkham et al 2019 ). Therefore, this may extend to the family within Nigerian social setting, where children with albinism may suffer some forms of prejudice and violence from their parents and siblings as attitude indicative of rejection.…”

Section: Theoretical Background: ‘Othering’ and Family-based Violencementioning

confidence: 99%

“…People living with albinism (PWA), which is an inherited condition from birth resulting from lack of melanin pigment and leading to changes in the color of the skin, hair and eyes, are faced with challenging lives (Taylor et al 2019 ). In particular, children with albinism (CWA) have been reported to face greater discrimination and challenges than others (Franklin et al 2018 ; Reimer-Kirkham et al 2019 ). These discriminations are reported to be both at the institutional level, evinced by non-provision of learning aids to assist with their visual impairment (Human Rights Watch 2019 ; Nebre 2018 ), and at the individual level, as shown with teachers and staff that avoid CWA based on the myth that albinism is a contagious condition (Lund 2005 ).…”

mentioning

confidence: 99%

“…In some African communities, it is considered a misfortune to give birth to albinos; therefore, attempts are made to kill them at birth or banish them from the community (Benyah 2017 ; Braathen and Ingstad 2006 ; Cruz-Inigo et al 2011 ; Nebre 2018 ; Reimer-Kirkham et al 2019 ). Whilst there is a growing body of literature regarding discrimination and violent treatment of people with albinism at community-based level and, specifically, in the educational, health and employment sectors, there is little research on the lived experiences of children with albinism at the family level.…”

mentioning

confidence: 99%

See 1 more Smart Citation

“Why Always me?”: Childhood Experiences of Family Violence and Prejudicial Treatment against People Living with Albinism in Nigeria

Aborisade

2021

J Fam Viol

View full text Add to dashboard Cite

In an attempt to address the paucity of research examining the childhood experience of people living with albinism within family context, the present study explored family-based violence and prejudicial treatments against children born with albinism in Nigeria. In addition, issues that traumatized children with albinism (CWA) within their family setting, and the coping strategies they found effective were identified. The research was located within an interpretive qualitative paradigm and framed within the theories of ‘othering,’ self-esteem, and family system. Interviews were conducted with 62 adults living with albinism who were raised in family settings. The prejudicial treatments and family-based violent behaviors experienced by participants were explored, and a thematic analysis of the narratives was carried out. Findings confirm the existence of family violence and prejudice regarding albinism. Prejudices on albinism were found to result in parents denying CWA of educational and vocational sponsorship, cordial family relationship, social interactions and attendance of social events. Family members’ perceptions of CWA were reportedly influenced by social and religious inclinations. Families were found not to be only violent with CWA but also facilitating institutional violence by religious organizations. Participants expressed developing emotional problems like paranoia, anger, depression, feelings of powerlessness, and low self-esteem, while they utilized varieties of emotion-oriented coping strategies during their childhood experiences. CWA are subjected to prejudice and violence within their families that are unique and deserving of research and policy interventions. Therefore, family-based orientations, screening for family violence, religious and social groups’ support for people living with albinism (PWA) were suggested.

show abstract

“…Northern researchers tend to bring a secularist lens, where they anticipate that health beliefs and practices can be extrapolated from religious beliefs and practices. Our Tanzanian and African colleagues have directly challenged us on this in the case of our research on human rights and albinism (Reimer‐Kirkham, Astle, Ero, Panchuk, & Dixon, ), calling for a deep engagement with how cultural/religious/spiritual beliefs are implicated in how albinism is constructed (Imafidon, ).…”

Section: Religion and Politics: What Are The Variations And Implicatimentioning

confidence: 99%

Complicating nursing's views on religion and politics in healthcare

Reimer‐Kirkham

2019

Nursing Philosophy

View full text Add to dashboard Cite

Nursing, with its socially embedded theory and practice, inevitably operates in the realm of power and politics. One of these political sites is that of religion, which to varying degrees continues to shape beliefs about health and illness, the delivery of healthcare services and the nurse–patient encounter. In this paper, I attempt to complicate nursing's views on religion and politics in healthcare, with the intent of thinking critically and philosophically about questions that arise at the intersection of religion, politics and nursing/healthcare. These questions include the following: What is the domain of religion and politics? How (non)religious are the contemporary societies in which nurses practice? What are the variations and implications of secularism? How is religion entangled with other intersecting social relations of power? How does a political reading of religion and politics matter to the concerns of nursing?

show abstract

Albinism, spiritual and cultural practices, and implications for health, healthcare, and human rights: a scoping review

Cited by 24 publications

References 36 publications

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

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

“Why Always me?”: Childhood Experiences of Family Violence and Prejudicial Treatment against People Living with Albinism in Nigeria

Complicating nursing's views on religion and politics in healthcare

Contact Info

Product

Resources

About