Stacey P Raj1,2, Megan E Narad1, Ralph Salloum3, Amber Platt3, Aimee Thompson3, Katherine T Baum4, Shari L Wade1,5. 1. 1 Division of Physical Medicine and Rehabilitation, Cincinnati Children's Hospital Medical Center , Cincinnati, Ohio. 2. 2 School of Psychology, Xavier University , Cincinnati, Ohio. 3. 3 Cancer and Blood Diseases Institute , Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio. 4. 4 Children's Hospital of Philadelphia , Philadelphia, Pennsylvania. 5. 5 College of Medicine, University of Cincinnati, Cincinnati, Ohio.
Abstract
PURPOSE: To develop A Survivor's Journey, a web-based psychosocial intervention for adolescent and young adult (AYA) survivors of pediatric brain tumors (PBTs). METHODS: Stages of development included focus groups with five AYA survivors (ages 16-23 years) and six parents to identify needs and challenges, as well as surveys and interviews with clinical care providers at a survivorship clinic. RESULTS: Concerns reported by AYA survivors, parents, and providers were similar to those reported in the literature, including fatigue, memory deficits, poor mood, health concerns, and challenging peer relationships. However, concerns varied across survivors, underscoring the need for customizable interventions. Survivors and parents were interested in an intervention targeting psychosocial functioning and late effects, and reported a strong preference for web-based interventions that would reduce cost and travel burden on the family. INTERVENTION: Based on review of the literature, survivor and parent feedback, as well as provider input, a customizable intervention, A Survivor's Journey, was developed consisting of five core sessions (addressing concerns common to AYA survivors such as memory, staying positive, and problem solving) and up to seven supplemental sessions (addressing variable needs of survivors such as managing fatigue, inattention, planning/organization, communication/relationships, and self-care). CONCLUSION: Despite growing recognition of long-term challenges and late effects, there are few interventions targeting psychosocial well-being of AYA survivors. If efficacious, A Survivor's Journey will be an accessible and cost-effective intervention to improve psychosocial functioning of AYA survivors of PBT.
PURPOSE: To develop A Survivor's Journey, a web-based psychosocial intervention for adolescent and young adult (AYA) survivors of pediatric brain tumors (PBTs). METHODS: Stages of development included focus groups with five AYA survivors (ages 16-23 years) and six parents to identify needs and challenges, as well as surveys and interviews with clinical care providers at a survivorship clinic. RESULTS: Concerns reported by AYA survivors, parents, and providers were similar to those reported in the literature, including fatigue, memory deficits, poor mood, health concerns, and challenging peer relationships. However, concerns varied across survivors, underscoring the need for customizable interventions. Survivors and parents were interested in an intervention targeting psychosocial functioning and late effects, and reported a strong preference for web-based interventions that would reduce cost and travel burden on the family. INTERVENTION: Based on review of the literature, survivor and parent feedback, as well as provider input, a customizable intervention, A Survivor's Journey, was developed consisting of five core sessions (addressing concerns common to AYA survivors such as memory, staying positive, and problem solving) and up to seven supplemental sessions (addressing variable needs of survivors such as managing fatigue, inattention, planning/organization, communication/relationships, and self-care). CONCLUSION: Despite growing recognition of long-term challenges and late effects, there are few interventions targeting psychosocial well-being of AYA survivors. If efficacious, A Survivor's Journey will be an accessible and cost-effective intervention to improve psychosocial functioning of AYA survivors of PBT.
Authors: Shari L Wade; Lisa M Gies; Allison P Fisher; Emily L Moscato; Anna R Adlam; Alessandra Bardoni; Claudia Corti; Jennifer Limond; Avani C Modi; Tricia Williams Journal: J Psychother Integr Date: 2020-06
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