The human rights violations faced by women and children with albinism is a global human concern that TWU researchers and their international partners are seeking to address.
Dr. Sheryl Reimer-Kirkham, Dean of the School of Nursing, is leading a team of researchers to look at ways to improve education for health professions in the area of perinatal care for families impacted by albinism.
The goal of their study is to protect the human rights of persons with albinism, including their welfare and security, social and economic condition,
and gender equity.
In a project funded by the Canadian Institutes of Health Research, she is joined by TWU Nursing faculty, Dr. Barb Astle, Dr. Kendra Rieger, and Dr. Landa Terblanche and an international team of researchers and advocates representing universities and civil society in Europe, Africa, North America, as well as the UN Office of the High Commissioner for Human Rights.
The goal of their study is to protect the human rights of persons with albinism, including their welfare and security, social and economic condition, and gender equity.
Women and children impacted by albinism “disproportionately bear the stigma”
The UN Human Rights Council reported (UN Reports A/HRC/43/42) in 2020 that women and children impacted by albinism “disproportionately bear the stigma, discrimination and human rights violations resulting from the social exclusion of persons with albinism as a whole.”
National and international organizations, including the UN, have been raising public awareness of the issue as a global human rights concern, in light of recent attacks, mutilation and murder of persons with albinism in Sub-Saharan Africa.
Building on their ongoing program of research and partnering with nursing and midwifery programs in South Africa, Tanzania and Ghana, Dr. Reimer-Kirkham and her team’s latest study will concentrate on health professions education for perinatal care of parents of infants with albinism.
TWU partners with a UN advisor
In 2017, Ikponwosa Ero, the UN Independent Expert on the enjoyment of human rights by persons with albinism, invited Dr. Reimer-Kirkham and Dr. Barbara Astle from TWU’s School of Nursing to support her mandate by providing research expertise on equity, spiritual/cultural beliefs and practices, and global health.
Their research on human rights found that mothers in Tanzania, South Africa, and Ghana who had given birth to a child with albinism recounted being stigmatized and abandoned by birth attendants, families, and communities.
Their findings also revealed that while midwives and nurses are the most common birth attendants, they receive very little or no education about albinism, despite its higher prevalence in many parts of Africa. This knowledge gap left birth attendants reliant on widespread misunderstandings and stigmatizing myths about albinism.
Building on their ongoing program of research and partnering with nursing and midwifery programs in South Africa, Tanzania and Ghana, Dr. Reimer-Kirkham and her team’s latest study will concentrate on health professions education for perinatal care of parents of infants with albinism.
Improving health equity for families impacted by albinism
The research project, titled, “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” will explore 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, arts-based, and contextually-relevant educational strategies, with the overarching aim of promoting, protecting, and fulfilling their human rights.
The desired outcome is improved health equity for families impacted by albinism.
Project Team
Nominated Principal Investigator: Sheryl Reimer-Kirkham (TWU)
Principal Applicants: Barb Astle (TWU); Ikponwosa Ero (African Albinism Network); Ramadimetja Shirley Mogale (University of Pretoria)
Co-Applicants: Lori Beaman (University of Ottawa); Maretha de Waal (University of Pretoria); Bonny Ibhawoh (McMaster University); Elvis Imafidon (University of London); Jennifer Kromberg (University of Witwatersrand); Ronell Leech (University of Pretoria); Muluka-Anne Miti-Drummond (UN Office of High Commission for Human Rights); Dianah Msipa (University of Pretoria); Eunice Pallangyo (Aga Khan University Tanzania); Kendra Rieger (TWU); Perpetua Senkoro (Tanzania Human Rights Defenders Coalition); Sonya Sharma (University College London); Wisdom Tettey (University of Toronto).
Collaborators: Mary Ani-Amponsah (University of Ghana); Lydia Aziato (University of Ghana); Duncan Dixon (TWU); Mike Lang (Mike Lang Stories); Nomasonto Mazibuko (Albinism Society of South Africa); Innocentia Mgijima (University of Witwatersrand); Lillian Ohene (University of Ghana); Landa Terblanche (TWU); Mpho Tjope (Albinism Advocacy for Access); Boateng Wiafe (Operation Eyesight Ghana).
Research Coordinator: Meghann Buyco (TWU)
To learn more about this research project and related research, please visit www.motheringandalbinism.com.
About TWU's School of Nursing
Caring for the health and well-being of individuals, families, and communities is both motivating and rewarding. We give you the knowledge and skills necessary for a nursing career in hospitals and community-based settings and the practical experience required to be highly sought after when you graduate. Learn more at TWU's School of Nursing.
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