Adolescents’ Experiences With Sickle Cell Disease Pain: Feeling Helpless but Determined to Endure

Objective. This study examined adolescents’ beliefs and feelings about what hindered or helped adolescents’ coping with and adapting to their sickle cell disease (SCD) pain. Background. SCD is a chronic hereditary disease affecting 1/300 live African-American (A/A) Births in US. Approximately 1/500 African-Americans are affected presently (72,000 individuals) and one in 12 have the trait. Individuals with SCD experience major medical complications resulting in morbidity and mortality and profound disturbances in psychosocial well-being. Methods. Subjects were 68 adolescents with SCD (53% females and 47% males) who provided written responses to two open-ended questions. (a) “What hindered your coping with SCD pain” and (b) “What helped your coping with SCD pain”? Responses were analyzed to explore and describe underlying patterns and themes. Two main categories and four subcategories were identified for the “hindered” question, and three main categories and six subcategories for the “helped” question. Results. Two opposing themes emerged from the data: helplessness and trying to endure. Helplessness occurred when emotional and physical effects of the SCD pain resulted in social isolation and loneliness, reduced academic performance and increased their feelings of despair and suffering. The theme trying to endure reflected the adolescents’ attempts to successfully manage the psychosocially stressful and physically painful events and to preserve their peace of mind. Conclusions. The results identify that the adolescents with SCD behave purposefully, possess intrinsic holism and strive to maintain integrity. Findings suggest strategies for interventions to promote or enhance coping in adolescents experiencing pain from SCD.