The International Council of Nurses (ICN, n.d.), a federation of more than 130 national nurses associations, hosted this year’s Congress in Montreal, Canada with an attendance of about 6,000 nurses from all over the world (ICN, 2023). Our Mothering and Albinism team presented our important research work on albinism and human rights through a presentation and three e-posters. Our South African and Ghanaian team members, Shirley Mooa, Lydia Aziato and Victoria Nesengani joined our Canadian team (Sheryl Reimer-Kirkham, Barbara Astle, Kendra Rieger, and Meghann Buyco) to highlight the experiences of mothers of children with albinism, persons with albinism, and siblings of persons with albinism.
Access to healthcare for mothers impacted by albinism in Tanzania and South Africa
Sheryl Reimer-Kirkham presented on the access to healthcare of mothers impacted by albinism in Tanzania and South Africa, highlighting the varied access to health information and limited access to healthcare services, including sunscreen, skin and vision care, and genetic counselling.
Moral emotions (and feelings) in caring for children with albinism in South Africa: The voices of the mothers
Shirley Mooa discussed the moral emotions and feelings of mothers who have children with albinism in South Africa, emphasizing two themes of trepidation and compassion. She foregrounded the need to support mothers through psychosocial services and to educate nurses about albinism.
Nurses leading an intersectoral transdisciplinary partnership for persons with albinism and human rights
Through an e-poster, Barbara Astle and Sheryl Reimer-Kirkham shared the development of our program of research on Mothering and Albinism, starting with an invitation from Ikponwosa Ero (inaugural UN Independent Expert on the enjoyment of human rights by persons with albinism) to our expanded research on birthing stories. The e-poster described our intersectoral transdisciplinary partnership and the importance of nurses being involved in this international work on mothering, albinism, and human rights.
Family-centred approach: Nurses’ support for siblings impacted by albinism
Finally, Meghann Buyco shared her findings from her recently completed thesis through an e-poster. She described the experiences of persons with albinism and their siblings, highlighting the need for a family-centred approach to support persons with albinism and their families.
We were honoured to highlight persons with albinism, their mothers, and their siblings in this international nursing gathering and to educate nurses of their experiences in Africa. For nurses, the research has implications for health teaching, advocacy for health access, trauma-informed care, family-centred care, human rights and the SDGs, and global health research methodologies that emphasize partnerships and decolonial approaches.
From left to right, top row: Barbara Astle, Kendra Rieger, Cathy Son, Shirley Mooa, Victoria Nesengani, Kathleen Lounsbury, Sheryl Reimer-Kirkham
Bottom Row: Ibolya Agoston, Ruhina Rana, Meghann Buyco
References
Internation Council of Nurses. (n.d.). https://www.icn.ch/who-we-are
Internation Council of Nurses. (2023, July 1). Nurses’ contributions and sacrifice honoured at Opening Ceremony of ICN Congress in Montreal. https://www.icn.ch/news/nurses-contributions-and-sacrifice-honoured-opening-ceremony-icn-congress-montreal
Authors:
Dr. Sheryl Reimer-Kirkham
Dr. Shirley Mooa
Dr. Barbara Astle
Dr. Lydia Aziato
Dr. Victoria Nesengani
Dr. Kendra Rieger
Meghann Buyco
Mothering & Albinism 