Navigating the Shadows of Stigma in Sickle Cell Disease: A Phenomenological Study.

BackgroundThe purpose of this study was to explore the experience of stigma among young adults living with sickle cell disease (SCD) using a hermeneutic phenomenological design.MethodSeven young adults diagnosed with SCD participated in semi-structured interviews to explore their experience of stigma as young adults living with SCD. Interviews were transcribed verbatim and analyzed using interpretive phenomenology.ResultsThe participants' narratives revealed an overarching theme of the shadows, representing their experience with stigma. The three subthemes further define how they navigate the shadow of stigma and move through varying degrees of dark and light to balance authenticity and protection. Subthemes include (a) the umbra-darkness, (b) the penumbra-dark and light collide, and (c) the antumbra-light.DiscussionThis study reveals the complex realities of young adults with SCD as they navigate stigma. Each narrative reinforced how stigma is ever-present in their experiences in healthcare, the public, and among family and friends. This research can help health professionals understand the influence stigma has on how young adults with SCD perceive themselves, interact with others, and engage in health-seeking behaviors and highlights the need to address stigma as a structural barrier to health equity.