The purpose of this study was to give voice to primary caregivers of children with sickle cell disease. The research was supported through use of the FAAR Model, Life Course Theory, and Ambiguous Loss Theory. Two caregivers participated in a semi-structured interview to tell their story with sickle cell disease. The caregivers noted common themes including knowledge of the disease, family routine and roles, and resources for support. The caregivers presented a contrasting experience which highlighted how illness can affect the child, the family, and the family's adaptation to illness. -- Abstract.
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