Children with sickle cell disease (SCO) are at risk for poor quality of life (QoL) and school functioning, due to medical, sociodemographic, and psychosocial (family influences). Effective interventions to improve pain management for children with sickle cell disease are reported in the literature but interventions that target QoL, and in particular school functioning, are lacking. Moreover, although family functioning is supported as a resistance factor for medical and psychosocial outcomes for children with SCO, family is seldom included in published interventions for this population. Comprehensive Sickle Cell Centers (CSCC) commonly use weekend workshops attended by multiple families to promote education and research initiatives within their centers as this format increases feasibility and acceptability of programming for their populations. Although the effectiveness of CSCC-offered weekend workshops has not been assessed, very brief interventions are cited in the pediatric literature as potentially effecting improved disease management and psychological adjustment for patients and their family member participants. Therefore, utilizing a randomized, delayed control group intervention methodology, the present study aims to systematically examine the effectiveness of a family-based, one-day intervention plus three booster phone calls to improve QoL and increase school functioning for children with SCO who are transitioning to school and their families. The Family-based Transition Program-School-age Intervention (FTP-S) will provide education and problem-solving training for disease management and school functioning. In 4 sessions offered over the course of a one-day intervention, 4 to 6 families (patient, caregivers, school-age siblings) will work together and individually to learn and apply the problem-solving skills training model to relevant examples and family-specific problems, culminating in an outline of family goals to target after the intervention. Booster phone calls will provide support to families in implementing the problem-solving model. Families (N = 120) of 6 -11-year-old children with SCO will be randomized to FTP-S or a delayed intervention control (DIC) group. Primary outcomes are QoL and school functioning (school attendance, access to school resources), which will be assessed at baseline, post-intervention (6 months post-baseline), and follow-up (12 months post-baseline) via home visit.

National Institute of Health (NIH)
National Heart, Lung, and Blood Institute (NHLBI)
Specialized Center--Cooperative Agreements (U54)
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Special Emphasis Panel (ZHL1)
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Thomas Jefferson University
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