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Comprehensive Handbook of Childhood Cancer and Sickle Cell DiseaseA Biopsychosocial Approach$
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Ronald T. Brown

Print publication date: 2006

Print ISBN-13: 9780195169850

Published to Oxford Scholarship Online: November 2020

DOI: 10.1093/oso/9780195169850.001.0001

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Psychosocial Adaptation of Children and Adolescents With Sickle Cell Disease

Psychosocial Adaptation of Children and Adolescents With Sickle Cell Disease

Chapter:
(p.471) 25 Psychosocial Adaptation of Children and Adolescents With Sickle Cell Disease
Source:
Comprehensive Handbook of Childhood Cancer and Sickle Cell Disease
Author(s):

Lamia P. Barakat

Laurie A. Lash

Publisher:
Oxford University Press
DOI:10.1093/oso/9780195169850.003.0034

Sickle cell disease (SCD), a chronic genetic disorder, can produce a host of potentially life-threatening complications that may have an impact on the physical integrity and psychosocial adaptation of the affected child or adolescent. The nature of SCD presents many risk factors, particularly for those children with the most severe form, sickle cell anemia (hemoglobin [Hb] SS). Most common and significant is that SCD involves recurrent, unpredictable pain that can interfere with daily functioning, including social activities and school attendance. Treatment for SCD varies in intensity and invasiveness depending on severity of complications. It may involve daily management (i.e., hydration, restrictions on activities, prophylactic antibiotics, and pain management) as well as preventive follow-up care. Regular blood transfusions are required for children who have had stroke, are at risk for stroke, or experience severe pain crises. Alternative solutions for those with the most severe disease include hydroxyurea and bone marrow transplant. Children with SCD experience pain episodes that vary in severity, duration, and frequency (Brown, Doepke, & Kaslow, 1993). In children with SCD, intense pain episodes often result in repeated hospitalizations and absences from school (Brown, Doepke, et al., 1993). In addition, some forms of pain management, including limitation of physical activity, may interfere with children’s ability to participate in sport activities or to engage in peer relations when they are experiencing a pain crisis. Moreover, the occurrence of cerebrovascular accidents (CVAs) or stroke can have an impact on academic achievement and long-term occupational outcomes (Lemanek, Buckloh, Woods, & Butler, 1995). Although comparisons to other pediatric populations may be useful for understanding processes involved in adaptation, there are aspects of the lives of children and adolescents with SCD, and of their disease, that require a specifically modified approach to the investigation of psychosocial adaptation and application of the current pediatric literature. These issues include the genetic nature of this life-threatening and life-shortening disease, the high prevalence of the disease in African American individuals in the United States, and the multiple stressors faced by children and adolescents with SCD.

Keywords:   appraisal(s), coping strategies, externalizing behavior problems, internalizing behavior problems, racial influences on adaptation, self-concept/self-image/self-esteem

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