Development of a Web-Based Psychosocial Intervention for Adolescent and Young Adult Survivors of Pediatric Brain Tumor
Development of a Web-Based Psychosocial Intervention for Adolescent and Young Adult Survivors of Pediatric Brain Tumor
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DOI：
10.1089/jayao.2017.0084
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发表时间：
2017-12-06
影响因子：
2
通讯作者：
Wade, Shari L.
中科院分区：
文献类型：
--
作者：
Raj, Stacey P.;Narad, Megan E.;Wade, Shari L.
目的：为儿童脑肿瘤（PBTs）的青少年和年轻成人（AYA）幸存者开发基于网络的心理社会干预“幸存者之旅”。（年龄16-23岁）和六名家长，以确定需求和挑战，以及调查和采访的临床护理提供者在生存诊所。AYA幸存者，父母和供应商报告的担忧与文献中报告的相似，包括疲劳，记忆缺陷，情绪不佳，健康问题和具有挑战性的同伴关系。然而，幸存者的关切各不相同，强调需要定制干预措施。幸存者和父母有兴趣在针对心理社会功能和后期影响的干预措施，并报告了基于网络的干预措施，将减少成本和家庭的旅行负担的强烈偏好。干预措施：基于文献回顾、幸存者和父母的反馈以及提供者的意见，开发了一种可定制的干预措施，即幸存者之旅，包括五个核心会议（解决AYA幸存者共同关心的问题，如记忆，保持积极，解决问题）和多达七个补充会议（解决幸存者的各种需求，如管理疲劳、注意力不集中、计划/组织、沟通/关系和自我照顾）。尽管人们越来越认识到长期挑战和迟发效应，但针对AYA幸存者心理健康的干预措施很少。如果有效，幸存者之旅将是一个方便和具有成本效益的干预措施，以改善PBT的AYA幸存者的心理社会功能。
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.