Lamia Barakat Research Program
Led by Lamia P. Barakat, PhD, researchers are examining evidence-based assessment of psychosocial risk and resilience in families of children newly diagnosed with cancer and families transitioning off treatment; family interventions to improve disease management, health-related quality of life, and school functioning; strategies to increase recruitment and retention in pediatric clinical trials; and strategies to promote successful adaptation and transition of adolescents and young adults (AYA) with cancer. The long-term goals of the work conducted in this laboratory are to improve disease management, school functioning and health-related quality of life measurement and interventions for children and adolescents/young adults with cancer through promoting early identification of needs, targeted, effective interventions to promote resilience, and improved access to clinical trials information and decision support.
Ongoing studies in the Barakat Research Program are analyzing the acceptability, feasibility and validity of psychosocial assessments at initial diagnosis and the end of treatment to better predict and improve physical and psychosocial outcomes for children with cancer and their families. By using psychosocial screening to identify families who may be at risk for experiencing specific challenges during and after treatment, which include treatment compliance, limiting financial resources, poor coping skills and difficulty managing quality of life issues and school reintegration, we can better target psychosocial interventions and support strategies to address each family’s particular needs.
The Barakat Research Program plays an important role in the development and evaluation of a number of psychosocial interventions, including (1) for caregivers of young adult survivors of brain tumors to improve caregiver competence and caregiver and survivor health-related quality of life through more effective management of late effects, (2) for AYA as they move off treatment to improve knowledge and increase engagement in follow-up and in health behaviors, and (3) for caregivers of children undergoing stem cell transplantation to promote adaptive coping during this stressful treatment period.
Another area of focus for the Barakat Research Program is decision-making about participation in therapeutic clinical trials. In these studies, we are working with AYA patients and their caregivers to understand how they weigh potential benefits with perceived barriers or risks in making decisions about enrollment. Information about these decision-making processes is informing development of tools to support families in making treatment-related decisions together and with more confidence and less stress and conflict. The Barakat Research Program is also involved in a study comparing long-term outcomes for survivors of childhood cancer treated on clinical trials and survivors of childhood cancer treated on standard therapy.