This research proposes to develop a methodology for assessing and treating youth in whom sickle cell disease (SCD) has been diagnosed.
The first aim i s to investigate risk and resistance factors associated with children and adolescents' adaptation to SCD. The risk factors to be studied include disease/disability parameters, functional independence, and psychosocial stressors. Intrapersonal and social- ecological variables and stress processing are the resistance factors which will be examined. It is hypothesized that youth high on risk factors and/or low on resistance factors will evidence the most impairment in adaptation, as measured by their mental health, social functioning, and physical well-being. the sample will include 200 female and male children, ranging in age from 8-18, from the Georgia Sickle Cell Center based at Grady Memorial Hospital and from the Egleston Children's Hospital of Emory University. The effects of age, gender, and socio-economic status on functioning across domains will be examined. It is hypothesized that older youth, particularly males from lower class backgrounds, will evidence the greatest impairments in functioning and will report significant risk factors and possess few resistance factors associated with adaptive coping. To examine the relationship between risk and resistance factors and adaptation in children with SCD based upon a risk resistance-adaptation model (1), structural equation modeling will be utilized. The project's second aim is to conduct an initial intervention outcome study comparing a cognitive-behavioral family intervention with a treatment as usual (TAU) control group. Those youth whose initial assessment data reveal them to be high risk, low resistance, and/or poor in psychosocial and psychiatric adaptation will be assigned randomly to either an experimental or control intervention condition. The eight session cognitive-behavioral family intervention focuses on psychoeducation, addressing and managing controllable risk factors, enhancing resistance capacities, and improving adaptive functioning across domains. The two conditions will be compared at a post-treatment assessment and a three month follow-up. It is predicted that youth and families who participate in the experimental condition will evidence enhanced resistance skills and improved psychiatric and psychosocial adaptation.
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