Sickle cell disease (SCD) primarily affects African Americans and is considered one of the most prevalent diseases in the United States (Schecter, 1999). Although the most debilitating symptoms associated with SCD in children are pain episodes, the seriousness of pain in children with SCD has only recently been recognized. Recent research has shown that pain in children with SCD is related to poor physical, psychological, and social functioning (Palermo, Schwartz, Drotar, & McGowan, 2002). However, research has not yet sufficiently examined whether pain impacts overall quality of life in this population. Given the pain and other stressors associated with the disease, it is vital to examine how these children cope, especially in light of findings that coping has the potential to influence health status (Folkman, Lazarus, Gruen, & DeLongis, 1986). In pediatric research, it is critical to examine developmental aspects in regards to pain, coping, and quality of life. In addition, given that almost all of these patients are African American, racial identity is a factor that has largely been ignored but might prove valuable in understanding this population and the relations between pain, coping, and quality of life. The purpose of the proposed study is to examine the relation between pain and quality of life in children with SCD, and determine whether coping moderates this relation. A secondary aim is to examine differences in the age of the patients to better understand pain, coping, and quality of life in this population.
A final aim i s to evaluate relations among racial identify, pain, coping, and quality of life. 100 children, ages 8 to 18, with SCD attending regularly scheduled SCO-related clinic visits at a pediatric hospital will be enrolled in the study. Children will complete measures of their acute and chronic pain, pain coping strategies, quality of life, and racial identity. ? ? Specific Aim #1: Examine coping as a moderator in the relation between pain and quality of life. ? Specific Aim #2: Explore relation between child's age and pain, coping, and quality of life. ? Specific Aim #3: Conduct exploratory analyses to examine the impact of racial identity on pain, quality of life, ? and coping. ? ? Relevance: Due to the detrimental impact of pain on various areas of functioning, further examining pain, ? coping, and quality of life in children with SCD will provide valuable information about this population. Also, ? findings will help lay the necessary groundwork to develop and implement theoretically derived, ? developmentally-appropriate, and culturally sensitive interventions to improve coping and quality of life in ? children with SCD. ? ? ? ?
| Lim, Crystal S; Welkom, Josie S; Cohen, Lindsey L et al. (2012) Evaluating the protective role of racial identity in children with sickle cell disease. J Pediatr Psychol 37:832-42 |
