Listening to the stories of mothers who have given birth to a baby with albinism is an obvious place to start the next chapter of our research on A Human Rights and Equity-Oriented Response to the Birth Stories of Families Impacted by Albinism in Africa (see here for more information). We recently gathered with mothers, albinism advocates, healthcare providers, and researchers to hear firsthand about their experiences.
Knowledge is power.
– Tshego Keitsemore
If you have close loved ones showing support for your child and you, it really helps in adjusting to the situation and dealing with the situation and the upbringing of the child.
– Perpetua Senkoro
The listening circle was informed by the project’s research method of Cooperative Inquiry, which is a group-based participatory and action-oriented approach applied among co-inquirers who share a common question or interest (Guha, Druin & Fails, 2013; Ospin, Hadidy & Hofmann-Pinilla, 2008; Tee & Lathlean, 2003). This approach is meant to create a cooperative and meaningful relationship between two or more groups, who may be otherwise considered “worlds apart” (Ospin et al., 2008, p. 132). Cooperative Inquiry embraces the notion that those involved are co-researchers and co-subjects. It enables participants, as co-inquirers, to inquire about their own personal experiences and be involved in the research process, including design and management of the inquiry as well as drawing conclusions (Heron, 1996). This approach focuses on conducting research “with” rather than “on” or “about”. Moreover, our research is promoting a decolonization approach and a method that aligns with this is storytelling. Stories capture a holistic knowledge, taking into account the relationships and place. Rieger and colleagues (2020) describe that stories “provide a culturally nuanced way of knowing and a legitimate form of understanding complex phenomenon related to health” (p. 9). Cooperative Inquiry guides our research and is significantly important as we move through each phase of the project. We are participating in storytelling to understand the birthing experience of mothers and carers to a baby with albinism in the African context.
We began the first phase of our research project on birthing stories of families impacted by albinism. Within this phase is to conduct a participatory systematic review to synthesize current and existing information to answer our research question:
What are the experiences surrounding the birth of a baby with albinism for the family members and their carers in Africa (mothers, families, care providers/birth attendants)?
On February 6th, 2023, we engaged in our first Stakeholder Meeting to inform our search strategy. We had a Birthing Stories Sharing Circle with various stakeholders to speak about their experiences relating to the birth of a baby with albinism.
- Round #1: Stories from Mothers of child(ren) with albinism
- Lorraine Tshuma and Tshego Keitsemore are mothers who have given birth to a child(en) with albinism in South Africa. They are inspiring and admirable women who shared with us the story of when they gave birth to their children with albinism, including the responses of the healthcare professionals, their family, and the community. They provided recommendations to improve the birthing experiences such as ensuring a more positive response from healthcare professionals and provide health education to mothers on how to care for a baby with albinism before being discharged.
- Round #2: Commentaries by CSO Albinism Partners
- Perpetua Senkoro (Tanzania) and Mpho Tjope (South Africa) commented on the stories shared by Tshego and Lorraine. They also provided insights to the experiences of other mothers who have given birth to a baby with albinism whom they interacted with during their advocacy and CSO work, especially for women in rural areas. Furthermore, they shared what it was like for them as the children, as a person with albinism.
- Round #3: Health Professionals Responding to the Stories
- Shirley Mooa, Victoria Nesengani, and Tumisho Mokwele are nurses and midwives teaching higher education in South Africa. They shared their experiences of when they interacted with a mother and her baby with albinism. From a healthcare professional perspective, they shared the challenges for healthcare providers working in hospital and other healthcare facilities, especially in remote and underfunded areas.
Mothers as well as CSOs described the birthing experience of a baby with albinism as an unexpected experience. They stated that most often, mothers would leave the hospital or birthing facilities without being provided with information about albinism and how to care for a baby with albinism. Their birth experiences are greatly impacted by the erroneous beliefs associated about albinism that on many occasions, led to partner abandonment and discrimination by the community. We have heard that mother-to-mother support has been a great resource for women who have given birth to a baby with albinism. Nurses and midwives shared that healthcare professionals are not equipped with adequate information and resources to support a mother when she gives birth to baby with albinism.
We are grateful to the participants of this Stakeholder Meeting for sharing such personal experiences. Involving those who have first-hand knowledge, especially mothers who have given birth to a baby with albinism, is important to help our team have a collective understanding of the birthing context in Africa and how a birth of a baby with albinism impacts this. People such as mothers who are impacted by albinism have a moral right to contribute to the decision-making in research that could impact them and others who share the same experiences (Pollock et al., 2018). Stakeholder involvement is also key to further contextualize the experience and apply relevance to our work in the “real world”.
Keeping to our framework of Cooperative Inquiry for our participatory systematic review, we listened to key terms used and how they described their experiences for us to develop a search strategy. We will closely be working with our key stakeholders during the next few months to interpret and draw conclusions about the findings of our synthesis.
In attendance: Sheryl Reimer-Kirkham, Shirley Mooa, Barbara Astle, Meghann Buyco, Duncan Dixon, Tshego Keitsemore, Ronell Leech, Tumisho Mokwele, Victoria Nesengani, Kendra Rieger, Perpetua Senkoro, Sonya Sharma, Landa Terblanche, Mpho Tjope, Lorraine Tshuma, and Ingrid Watts
References
Guha, M.L., Druin, A., & Fails, J.A. (2013). Cooperative Inquiry revisited: Reflections of the past and guidelines for the future of intergenerational co-design. International Journal of Child-Computer Interaction, 1(1), 14-23. https://doi.org/10.1016/j.ijcci.2012.08.003
Heron, J. (1996). Co-operative inquiry: Research into the human condition. Sage.
Ospina, S., Hadidy, W. & Hofmann-Pinilla, A. (2008). Cooperative inquiry for learning and connectedness. Action Learning: Research and Practice, 5(2), 131-147. https://doi.org/10.1080/14767330802185673
Pollock, A., Campbell, P., Struthers, C. Synnot, A., Nunn, J., Hill, S., Goodare, H., Morris, J., Watts, C. & Morley, R. (2018). Stakeholder involvement in systematic reviews: a scoping review. Systematic Reviews, 7(208). https://doi.org/10.1186/s13643-018-0852-0
Rieger, K.L., Gazan, S., Bennett, M., Mandy, B., Chudyk, A., Cook, L., Copenace, S., Garson, C., Hack, T., Hornan, B., Horrill, T., Horton, M., Howard, S., Linton, J., Martin, D., McPherson, K., Rattray, J., Phillips-Beck, W., Sinclair, R. & Schultz, A. (2020). Elevating the uses of storytelling approaches within Indigenous health research: a critical and participatory scoping review protocol involving Indigenous people and settlers. Systematic Reviews, 9(257). https://doi.org/10.1186/s13643-020-01503-6
Tee, S. R., & Lathlean, J. A. (2004). The ethics of conducting a co-operative inquiry with vulnerable people. Journal of Advanced Nursing, 47(5), 536–543. https://doi.org/10.1111/j.1365-2648.2004.03130.x
Mothering & Albinism 
Amzing story
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