Education and sickle cell anemia: a narrative study of the educational experiences of individuals living with sickle cell anemia.

• Online Access: http://hdl.handle.net/2047/D20248548

This qualitative research is the first of its kind to proffer a comprehensive look into the educational experiences of individuals living with Sickle Cell Anemia (SCA). Social Disabilities Theory and Individual Resilience Theory were used as the two theoretical frameworks for this research. Four people were selected from all four regions of the United States. These individuals were selected to participate in this research through criterion and snowball sampling. Each participant completed a brief questionnaire that was used to facilitate a characterization and detailed description associated with each person. Each participated in two structured open-ended interviews that allowed them to narrate their own stories about their educational experiences as individuals living with SCA. Participants responded to a series of questions that focused on their life history, personal and educational experiences with SCA as well as, their past and present experiences with SCA. Study findings include themes and sub-themes: (1) SCA Pitfalls to Higher Education SCA Interferes With Educational Experiences and Opportunities, The Journey to Higher Education, Balancing Academics and SCA, and Higher Education A Necessity; (2) Resiliency: Living Through SCA Building Resilience to Cope with SCA, Family Support and SCA, and Spiritual-Religious Coping; (3) The Challenges of SCA SCA and Stress, The Emotional Impact of SCA on Family, and A Burden Shared and A Journey Shared; and (4) Living with Uncertainties (SCA) SCA and Social Life, A Secluded Life Echoes Solitude, and SCA and Quality of Life. Themes and sub-themes that were uncovered in the data are relevant to the realities of persons living with SCA. Findings provide valuable insight into the educational experience of these four individuals as they advanced to obtain a higher education.