The Situation of Mothers Impacted by Albinism in sub-Saharan Africa: A Video Analysis

Authors

  • Kiel Mayich Trinity Western University
  • Nazifa Rashid University of Toronto
  • Cole Siebert Trinity Western University
  • Rebecca Kyeraa Amankona University of Ghana
  • Adzeglo Tugbe University of Ghana
  • Emmanuel Osei Central University
  • Meghann Buyco Trinity Western University
  • Sheryl Reimer-Kirkham Trinity Western University
  • Barbara Astle Trinity Western University

DOI:

https://doi.org/10.29173/spectrum303

Abstract

Background and Aim: First-hand accounts of human rights violations are increasingly being shared in video format, and researchers are steadily tapping into these mainstream videos as sources of research data. A population group facing stigma, trafficking, mutilation and killings is persons with albinism (a rare genetic condition) in Africa. Mothers of children with albinism carry a disproportionate burden in protecting and providing for their families, often in life circumstances of stigma and poverty. The Mothering and Albinism project was established to address their experiences.

Methods: Our international team of multidisciplinary undergraduate students conducted content analyses on fourteen videos that feature and described mothers and their experiences of giving birth to a child with albinism and how they navigated their lives in Sub-Saharan Africa.

Findings: The videos were thematically characterised by the varying experiences of mothers and the prominent responses of fathers, families, healthcare providers and the community that impact how mothers then move forward in raising their children with albinism. Factors such as the unavailability of health information and persisting misunderstandings about the condition accounted for the negative experiences of mothers and families.

Conclusion: Our findings suggest that public education is needed to improve responses of families, healthcare providers and the community, allowing for referral to local resources, improved management of the health issues faced by persons with albinism, and less blame attributed to mothers for their child’s albinism.

Author Biographies

Kiel Mayich, Trinity Western University

My name is Kiel Mayich and I am completing my final year of a Bachelor's of Science in Nursing at Trinity Western University. Growing up doing humanitarian work in Mongolia and Thailand, I had the honour of working alongside underprivileged peoples and was faced with the inequity many are forced to undeservingly experience. It was a calling to serve people such as the Karenni people of Myanmar that I entered nursing and this calling remains my motivation to receive my degree. Being able to work on the Mothering and Albinism research project, I have been able to learn from researchers that are adept in their ability to advocate for marginalized groups on a local and global stage. I hope to take these skills wherever I work in the future. My advice to new undergraduate researchers would to be humble- be quick to listen and slow to speak. Approach each person with the thought that they might be able to teach you something you don't already know. This humility creates the hospitable environment needed to invite individuals to share their experiences. The humble researcher is the best researcher.

Nazifa Rashid, University of Toronto

My name is Nazifa Rashid, and I’m entering my fourth year at the University of Toronto, majoring in Health Studies. As a people person, I’m especially drawn to Population Health research. The projects I’ve been fortunate to take part in have focused on community-based participatory research, which aligns with my passion for co-designed and equity-driven work. In my spare time, I enjoy being around water—whether that’s swimming, canoeing, or simply relaxing by the lake. My advice for new undergraduate students is to embrace experimentation in your early years. Try different learning strategies, extracurriculars, courses - and even programs! You never know what might spark your curiosity or shape your path forward.

Cole Siebert, Trinity Western University

I am Cole Siebert, during this internship I was finishing my BSN and I am proud to say that this past April I graduated. I have found my calling in the chaos of the emergency department and have already started working there. In my spare time I mountain bike and hike, some of my favourite hikes have been the Matterhorn in Zermatt Switzerland and Mt. Fairview at lake Louise in Banff Canada. My advice for undergraduate researchers is to get involved, I did my internship with mothering and albinism and I am not a mother and I do not have albinism but not only will you learn lots about your area of study but you will learn about research and yourself.

Rebecca Kyeraa Amankona, University of Ghana

My name is Rebecca Kyeraa Amankona, a Ghanaian graduate of the University of Ghana, where I earned a Bachelor of Science in Nursing (Public Health Nursing) from 2020 to 2024. With a passion for public health, I am particularly interested in research that focuses on improving lives through education and advocacy, especially among marginalized populations. I believe that effective public health interventions begin with understanding community needs and amplifying unheard voices. Over time, I’ve grown to appreciate research as both demanding and deeply rewarding—it requires dedication, patience, and discipline, but the impact makes every step worthwhile. Outside academia, I enjoy reading and watching movies, both of which offer me relaxation and new perspectives. To new undergraduate researchers: stay curious, be open to feedback, and don’t fear failure—it’s part of the journey. My goal is to contribute meaningfully to public health in Ghana and beyond through evidence-based, inclusive strategies.

Adzeglo Tugbe, University of Ghana

My name is Tugbe Adzeglo. A Ghanaian and a graduate of the University of Ghana, where I studied Bachelor of science in nursing (public health nursing) in the year 2020 to 2024. I'm passionate about the health and Lifestyle of individuals hence my interest in public health. I'm passionate about the health and Lifestyle of individuals, and the whole population. Identifying the needs of communities and individuals is one of the interesting aspects of public health nursing. Research relating to health especially those of public health concerns are in my best interest, reason I developed interest in this research topic. While research demands accuracy, consistency, patience and discipline, the end results are remain the best and fulfilling. During my leisure times, I enjoy reading books, articles and research, watching movie and taking the sea breeze. My aim is to make an impact to public health in my country Ghana and worldwide. To new members of the research team, just put in your best, be confident and you will enjoy this beautiful journey.

Emmanuel Osei, Central University

I am Emmanuel Osei, a student of Central University, with the Faculty of Law, reading Bachelor of Laws (L.L.B) and currently in level 400. i hold an MSc in Procurement and Supply Chain Management from KNUST, Kumasi, Ghana. I love to read and explore new environment as well as ideas. I love to travel to route areas to be able to offer help to the helpless and be a voice for the voiceless in my continental zone. I love to do more research on the fundamental human right and it applicability to the society. I will encourage researchers to explore more on topics of their interest by asking questions.

Meghann Buyco, Trinity Western University

Meghann Buyco is a Registered Nurse working in an outpatient cancer centre and a PhD of Nursing student from Trinity Western University, Langley, British Columbia, Canada. She is the Project Coordinator for the Mothering & Albinism research exploring how the perinatal experiences of mothers who give birth to a baby with albinism can be improved through health services and health professions education. Her research interests are disability, human rights and health equity.

Downloads

Additional Files

Published

2025-07-31

Issue

No. 15 (2025)

Section

Social Sciences & Humanities

Categories

License

Copyright (c) 2025 Kiel Mayich, Nazifa Rashid, Cole Siebert, Rebecca Kyeraa Amankona, Adzeglo Tugbe, Emmanuel Osei, Meghann Buyco; Sheryl Reimer-Kirkham, Barbara Astle (Faculty Member/Supervisor)

Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 International License.

Spectrum encourages authors to publish their work under a Creative Commons Attribution 4.0 International licence (CC BY 4.0) that allows others to distribute, remix, tweak, and build upon the work, even commercially, as long as they credit the Author(s) for the original creation. Authors may, however, choose to have their work distributed under any of the Creative Commons licenses currently available by specifying their preferred licence in the publication agreement. The applicable Creative Commons license icon will appear on the title page of each published submission. A description of the Creative Commons licences is available here: https://creativecommons.org/licenses/