Sickle Cell Disease (SCD) is a genetic disorder that affects approximately 1 of every 600 African American newborns in the United States (National Heart, Lung, and Blood Institute [NHLBI], 2006). Research suggests that the effects of raising a child with a chronic illness can lead to significant psychological maladjustment and family system dysfunctions (Wallander &Varni, 1998).Unfortunately, there is minimal research examining the stress and coping of caregivers of children with SCD. It is important to examine the functioning of these caregivers because raising a chronically ill child has been shown to lead to an increase in parenting stress, which has been found to lead to poor parental mental health outcomes (Kovacs, 1985), decreased ability to learn illness-related management skills (Gillis, 1993), increased stress in the ill child (Melamed &Ridley-Johnson, 1988), and a negative influence on child self-management (Auslander, Thompson, Dreitzer, &Santiago, 1997;Hanson, DeGuire, Schnikel, &Kolterman, 1995). Given the stressors associated with raising a child with SCD, it is important to examine the ability of the caregivers to employ effective coping strategies, which are essential to healthy parental psychosocial adjustment. Racial identity, which has been thoroughly researched as a critical aspect in the lives of African Americans, has received only minimal attention in the pediatric psychology literature. With SCD affecting primarily people of African descent, it is important to explore the concept of racial identity in this population. The purpose of this current study is to investigate the relation between stress and psychosocial adjustment and the potential moderating effects of coping in caregivers of children with SCD. The relations among racial identity, stress, coping, and psychosocial functioning will be evaluated as a secondary aim. One hundred caregivers of 8- to 18-year-old children diagnosed with SCD will be enrolled. Caregivers will complete measures of psychosocial functioning, stress, coping, and racial identity. The results of this study will build upon previous research regarding stress and coping within an SCD population in addition to providing novel information regarding the effects of racial identity. Because of the paucity of research with caregivers of children with SCD, few interventions targeting this population exist.
This study will provide valuable information about stress, coping, and adjustment in caregivers of children with SCD, leading to theoretically derived and culturally sensitive interventions for children and their caregivers.
