Research on siblings and albinism, the focus of my (Meghann Buyco) recent thesis, is long overdue. There has been increased global attention and research on albinism but very little remains known about the experiences of albinism between siblings. Thus, this past year, I was privileged to hear persons with albinism and their siblings share their stories of what it has been like for their family to live with the condition in Africa.
Throughout the research process, I tread conscientiously due to my close proximity to the topic of interest. From an undergraduate research assistant to a graduate research assistant and now the project coordinator for the Mothering and Albinism research project, I have been constantly exposed to information about albinism as I work alongside those with the condition. This field, in a way, has become my area of nursing practice. Thorne (2016) describes this positioning as an “insider” (p. 129) where the researcher conducts a study within a setting that is already familiar to them. Because of my familiarity with albinism, I had a relatively easy time gathering background information for my study and sources for support such as seeking assistance for participant recruitment. Even more, I am a person with albinism myself and I grew up in the Philippines with two siblings who also have albinism. I am not only a health professional and researcher working in the area of albinism, but I experience being a person with the condition. In many ways, this was beneficial. For example, as a researcher with albinism, I understood what many of my participants described, including having “mixed feelings” about being “different” but also “unique.” Because I too have albinism, I have an insider perspective.
At the same time, however, I also had a perspective of an “outsider” (Thorne, 2016, p. 129). My views and experiences of the African context were significantly limited because I am not of African heritage. My contextual awareness was further stunted by not being able to interact with my participants in person and to be immersed in their living environment. This positioning was significantly important to consider as the researcher because my insights on family and social context of Africa were limited to what I read in academic and grey literature and my interactions with our African research team members.
I had to reflect on what it meant for me to grow up as a person with albinism in the Philippines and Canada. My skin complexion in the Philippines made me stand out but there were hardly any harmful cultural beliefs and practices associated with albinism in the community in which I grew up. When I moved to Canada, I blended in. Having pale skin did not impact me as much anymore. My experiences were incomparable to what my participants had undergone.
Reflecting on the stories of my participants, they had disheartening narratives of what it was like having a lighter complexion in a melanin-privileged country and yet, in large part because of their families, they exhibited determination and empowerment.
Interpretive Description, the qualitative methodology chosen to conduct this research, provided a space to account for my impact as the researcher: the “inquirer and the ‘object’ of inquiry interact to influence one another; indeed, the knower and known are inseparable” (Thorne et al., 2004, p. 5). This methodology enabled me to acknowledge as well as value my positioning, given the researcher is part of the inquiry. I had to constantly reflect on my positionality: my aims, my background, my experiences, my biases, and most importantly, my culture and practices, especially in relation to my views on family and my experiences as a person with albinism. The methodology required me to reflect carefully and pay attention to how I interacted with my participants and conducted data analysis.
The two main takeaways from my inspiring participants were in regard to their drive and their dedication to their families.
- Persons with albinism and their siblings embodied strength and determination. They shared with me so many challenges due to having albinism in Africa, but they continued to have passion and compassion to contribute to positive social changes for persons with albinism.
- I also admired their dedication to their family. The unconditional love they described reverberated throughout the interviews. It was so heartwarming to hear how they supported one another.
These themes did not necessarily surprise me but rather fascinated me, as to how their families portrayed resilience as a unit.
Completing this thesis was a remarkable experience because of my participants. As researcher, I was given merit for conducting and completing this research work as part of my master’s (MSN) degree but I express my deepest appreciation to my participants (you know who you are!). They have made it their mission to raise awareness and protect vulnerable individuals, especially persons with albinism.
Abstract
The bond between siblings is the longest relationship one may have with another individual, but the perspectives and experiences of siblings impacted by albinism have not been fully explored. In parts of Africa, persons with albinism face multiple challenges relating to their vision impairment and sun sensitivity compounded by stigma, discrimination, and safety concerns stemming from deeply rooted spiritual and cultural beliefs and misunderstandings about albinism. Applying an Interpretive Description qualitative design, I explored the experiences of siblings impacted by albinism in five countries in Africa through individual and dyadic interviews with seven dyads. I employed a human rights, family-centred, and disability lens to derive four themes: (1) Internalizing Processes; (2) Normalizing Responses; (3) Stigmatizing Experiences; and (4) Encompassing Support. These findings highlight the importance of a strong family system and the need to address the concerns that persons with albinism experience to support them and their family.
To access my full thesis:
Buyco, M.A.B. (2023). The experiences of sibling dyads impacted by albinism in Africa: An interpretive description study [Master’s thesis, Trinity Western University]. https://twu.arcabc.ca/islandora/object/twu%3A893
References
Thorne, S. (2016). Interpretive description: Qualitative research for applied practice (2nd ed.). Routledge.
Thorne, S., Reimer Kirkham, S., & O’Flynn-Magee, K. (2004). The analytic challenge in interpretive description. International Journal of Qualitative Methods, 3(1), 1-11. https://doi.org/10.1177/160940690400300101
Mothering & Albinism 