The Lived Experiences of Parents Raising a Child with Albinism: A Transcendental Phenomenological Study

The purpose of this transcendental phenomenological study is to understand the lived experiences of psychological barriers for parents of children with albinism in general education classes. The theory guiding this study was Goffman’s social stigma theory on stigmas, as it provides the framework for understanding the educational barriers faced in the general education classroom. This study answers the central research question, what are the lived experiences of parents of children with albinism in school? This transcendental phenomenological study emphasized the need for policy and practice changes focusing on assertiveness and coping skills for students with albinism in primary general education classrooms. The study’s sample consisted of eleven participants, all parents of children with OCA. Collected data was triangulated through individual interviews, a focus group session, and a journal prompt. Moustaka’s modified Van Kaam (1994) research framework was used to identify and describe the participant's lived experiences of the psychological barriers parents endure while their CWA attends general education. To aid in understanding, an embedded analysis will be used to analyze the data. This study’s findings highlighted areas of concern for academic success contributing to CWA’s psychological barriers in the general education classroom. The primary finding of this study revealed that parents of CWA in general education classes experience parental challenges in the form of paradox of emotions, interactions with society, and parenting adjustments. Parental challenges are driven by the psychological, educational, and cultural challenges CWA while attending general education classes. This research supported existing literature claiming that albinism is a condition that affects the individual and their family physically, socially, and psychologically.