Life stories of older adults with sickle cell disease.

Abstract

Sickle cell disease (SCD) is a chronic disease with acute, painful exacerbations that often results in a shortened life expectancy. We explored the life stories of middle-age and older adults with SCD to ascertain how they explain their longevity and how they see the place of SCD in their lives. Data were gathered using semi-structured interviews with 12 individuals living with SCD--seven women and five men. Respondents offered four main reasons for their longevity: self-care, supportive family/friends, a higher power, and medical care. Respondents reported life satisfactions of family, employment/education, and religious activities. The life stories reflect challenges of often living with a disease prior to diagnosis and without modern advances and the unpredictable nature of the disease. Their stories provide healthcare providers with insight into the supports SCD patients need to improve their health outcomes as they move through the life course.