"Resilience?" perspectives from adults living with sickle cell disease

This study examines and explores the definition of resilience in adults living with sickle cell disease (SCD) in the United States (U.S.).

Participants were recruited between 2014 and 2018, from across the U.S. as part of Insights into Microbiome and Environmental Contributions to Sickle Cell Disease and Leg Ulcers Study (INSIGHTS). Inclusion criteria included age of 18+, a diagnosis of SCD, and completion of the Brief Resilience Scale (BRS). Thirty participants were randomly selected, 15 each from the lowest and highest BRS quartile. A semi-structured qualitative interview was administered. All participants identified as Black with an average age of 42.5 (13 F, 17 M).

Three main concepts emerged in response to the question "How do you define resilience?" (a) not giving up (b) how one deals with challenges and (c) moving forward.

This study suggests that current definitions of resilience used in validated survey measures do not match how adults living with SCD define resilience. Our results expand the understanding of resilience as a dynamic process, more about the process of "not giving up." These findings suggest that providers may find it productive to facilitate conversations with adults living with SCD around "how" they approach challenges. This study is also the first of its kind to examine resilience in a community living with SCD.