We are a group of researchers and advocates from Canada, South Africa, Tanzania, Ghana, Nigeria, Zambia, and England. We are supporting the United Nations Independent Expert mandate on the enjoyment of human rights by persons with albinism through research. We have conducted research on albinism and human rights since 2015.
We are currently conducting a global study on the experiences of families who have given birth to a child with albinism. Along with conducting research in Africa, we have expanded our demographic to include Canada in our study. This is the first time that a research such as this on albinism is done in the country.
We are recruiting participants from Canada!
We are inviting:
- Mothers who have given birth to a child with albinism
- Families of a person with albinism
- Healthcare providers (e.g., nurses, midwives, doctors, birth attendants, social workers, genetic counsellors) in birthing settings)
- Health professions education (e.g., professors, administrators, students)
- Decision-makers (government) involved in health, disability, women and family policies
- Advocates for persons with albinism
You will be involved in an individual interview or a focus group.
It will take approximately 1-2 hours of your time.
You will be offered a stipend to cover any expenses.
How will your identity be protected? Any information that is obtained in connection with this study and that can be identified with you will remain confidential. To help ensure your privacy, your name will not be used on any research forms or reports. If you are part of a focus group, the group will be reminded prior to starting and at the end of the interview to keep confidential everything that is shared. While we cannot guarantee that others will keep what is shared in the circle to themselves, as the researchers we promise to do so and ask that you and other participants do the same.
If you wish to participate or would like further information, please contact: meghannangelie.buyco@twu.ca or 604-615-5082
Please share this information if you know of anyone who is a person with albinism, a family of a person with albinism or those who work with persons with albinism in Canada!
We would love to hear from you!
Mothering & Albinism 