A team of TWU nursing researchers are continuing a multi-year project to promote the health and well-being of mothers living in Sub-Saharan Africa who are impacted by albinism, an inherited genetic condition that affects physical and social outcomes for the individual and for their family.
This project is a collaborative effort by a global research team comprised of health professionals, lawyers, educators, and advocates from seven countries: South Africa, Tanzania, Ghana, Nigeria, Zambia, England, and Canada.
"Our common goal is the well-being and security of persons with albinism and their families."
“Our common goal is the well-being and security of persons with albinism and their families,” the research team expressed.
“Together we seek to improve the experience of mothers, families, and carers, in the context of when a mother gives birth to a baby with albinism, though promoting resilience and healthy development, and strengthening health systems and nursing and midwifery education.”
Journey to South Africa
Earlier this fall, project co-leads Dr. Sheryl Reimer-Kirkham and Dr. Barbara Astle along with Dr. Kendra Rieger and Meghann Buyco from TWU’s School of Nursing travelled to South Africa. Together with researchers from the University of Pretoria, plus multiple partners, scholars, and advocates from a variety of sectors, the team from TWU jointly led a three-day public engagement in Pretoria from Oct. 2-4, 2023.
The goal was to bring together diverse experiences and expertise from multiple disciplines to help advance the human rights of those impacted by albinism, particularly mothers living in Sub-Saharan Africa. Through interdisciplinary collaboration, the participants continue to advance the well-being and security of persons with albinism and their families.
Collaborating across disciplines
The engagement workshop in Pretoria brought mothers impacted by albinism to partner with the researchers, policy-makers, and societal leaders who seek to learn from and to improve the health and livelihood of persons with albinism.
“The synergy of intersectoral collaboration and the collective wisdom gained during the workshop will give momentum to the four-year project as we commit to improving experiences and outcomes for mothers, families, and birth attendants when a baby with albinism is born,” the researchers affirmed.
Partnership with the University of Pretoria and United Nations Independent Experts
The three-day engagement in Pretoria was hosted in partnership with Dr. Ramadimetja Shirley Mooa, Dr. Ronell Leech, and Dr. Tintswalo Victoria Nesengani from the University of Pretoria and Conference Chair Innocentia Mgijima-Konopi.
The event was opened by the welcome of the inaugural United Nations Independent Expert on the human rights of persons with albinism, Ikponwosa Ero. The current United Nations Independent Expert, Muluka-Anne Miti-Drummond, also spoke about the developments of the albinism mandate.
Advancing human rights through research, dialogue, and the arts
The first day included a public forum of approximately 75 attendees to share the findings of the previous project on mothering and albinism. The research team presented their work through the release of a South Africa report as well as the premiere of a short film, providing recommendations to support mothers and children affected by albinism. Government officials, a nurse leader, and a national albinism advocate responded to these recommendations.
The public forum was co-hosted with Puleng Molebatsi, a film producer and a mother with albinism, and Innocentia Mgijima-Konopi, a human rights lawyer in South Africa. The event also showcased a gallery of photographs and a painting by artist Athenkosi Kwinana, featuring persons with albinism.
Ongoing work to support persons with albinism and families
This month’s Pretoria engagement was part of the Mothering and Albinism research project that seeks to protect human rights, promote resilience and healthy development, and strengthen health systems and midwifery education in support of persons with albinism. The work was funded by federal grants in Canada, Canadian Institutes of Health Research (CIHR) and Social Sciences and Humanities Research Council (SSHRC). To review highlights of the Pretoria engagement workshop, please see the project’s recap reel.
About TWU 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 School of Nursing.
About Trinity Western University
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