The Lived Experiences of Adults With Sickle Cell Disease Deciding Curative Therapies: A Descriptive Phenomenological Study.

Abstract

Background: Bone marrow transplant and gene therapy are high-risk, high-reward treatment options that have the potential to cure sickle cell disease (SCD). Making the decision to pursue curative therapies remains challenging for adults living with SCD and little is known about their experience in deciding to cure it.

Purpose: The purpose of this study was to describe the lived experiences of adults living with SCD considering curative treatments.

Methods: A qualitative descriptive phenomenological study was used for the study. Nine adults with SCD were recruited from a large, urban, academic medical center in the Northeast. Semi-structured interviews were recorded, transcribed, and analyzed using Amedeo Giorgi's 5-step data analysis for descriptive phenomenology.

Results: Five major themes were derived from the data analysis: (1) the never-ending rollercoaster of uncertainty in SCD; (2) the hospital feeling like a second home; (3) the powerful influence of the provider; (4) changing the trajectory of the past in pursuit of new beginnings; and (5) going the distance to access a cure. The results revealed that the participants' experiences in deciding to pursue curative therapies were multifactorial, they had limited access to educational material, they delayed seeking curative therapies, and they required complex care management to navigate health systems when seeking curative options.

Conclusion: Findings underscored the importance of nurses understanding the experience of living with SCD, the patient-provider relationship, and barriers to accessing care. Findings can influence policies on SCD care pre- and post-transplant, and inform nursing practice and nursing education.