The lives of adults over 30 living with sickle cell disorder

Objectives. The study investigated the lived experiences of adults over 30 years old living with sickle cell disorder (SCD) and sought to develop a model understanding participants' ability to function. Design. Over a period of 10 months, in-depth individual interviews were held with nine participants and three focus groups were held with six further participants. Methods. Grounded theory, a qualitative methodology, was chosen to explore functioning across domains of experience in order to build an explanatory model. Results. Physical, psychological, and social functioning were adversely effected by SCD. Access to and quality of resources including friends, family, and finances formed the context in which participants attempted to manage the disorder. Management of SCD improved over time as participants moved to acceptance of the condition. This allowed participants to strengthen their resilience by creating meaning, developing their identity, and actively coping with the effects of SCD, thus improving their ability to function and to appreciate life. Conclusions. The study demonstrates the considerable resilience of people over 30 with SCD, providing a positive and hopeful model which can be utilized clinically to support the functioning of people with SCD.