There is no Shame in Pain: Coping and Functional Ability in Adolescents with Sickle Cell Disease

Abstract

Despite the tremendous resilience of children with sickle cell anemia, this chronic illness has a significant impact in adaptation in every major area of functioning—personal care, emotional, recreational, educational, and vocational. Assessment of functional ability may help us to develop a fuller understanding of the relationships among illness severity, pain, physical dysfunction, and psychosocial adjustment in this group. A major challenge in the assessment of sickle cell disease (SCD) pain still lies in finding a reliable behavior referent of pain. Unlike the experience in other pain states (procedure-related pain), physical impairment and functional disability are salient characteristics in chronic SCD pain and, therefore, may contribute significantly to evaluations of pain states (pain ratings, pain characteristics, and pain quality). This article seeks to explore the utility of functional ability as an index of pain and pain behavior in children and adolescents with sickle cell anemia.