How young adults with sickle cell disease define "being a good patient" in the adult healthcare system.

ABSTRACT:

Background

Young adulthood brings new challenges for managing sickle cell disease. There are fewer adult specialists, sickle cell disease morbidities accumulate, and mortality increases. Developmental changes in roles and responsibilities also affect management. This study explores how young adults with sickle cell disease experience their role as a patient.

Methods

In this mixed-methods study at a sickle cell center, young adult participants completed the Sickle Cell Self Efficacy Survey, the Measures of Sickle Cell Stigma, and the Adult Sickle Cell Quality of Life Measurement Short-Forms. Semi-structured interviews on the patient role were conducted, transcribed, and then analyzed using thematic analysis.

Results

Twenty-four participants aged 19-25 years defined exp

SUBMITTER: Nwora C 

PROVIDER: S-EPMC10841975 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature