Northman Lisa, Morris Marybeth, Loucas Caitlyn, Ross Sarah, Muriel Anna C, Guo Dongjing, London Wendy B, Manley Peter, Ullrich Nicole J
1 Dana-Farber Cancer Institute, Boston, MA, USA.
2 Boston Children's Hospital, Boston, MA, USA.
J Pediatr Oncol Nurs. 2018 Jul/Aug;35(4):276-286. doi: 10.1177/1043454218765140. Epub 2018 Mar 30.
Childhood survivors of central nervous system (CNS) cancers (defined as cancers whose diagnosis or treatment affect the CNS) are at increased risk for educational related difficulties, as are children affected by neurofibromatosis type 1. This study evaluated the effectiveness of and satisfaction with a model of psychoeducation, consultation, and advocacy provided by a School Liaison Program (SLP) for families and schools of children with CNS-involved cancers compared with a control group of parents of children with a diagnosis of neurofibromatosis type 1 who did not receive school-based services. Results indicated significant between-group differences in parents' belief that their child is meeting academic potential, with parents who received SLP services reporting greater satisfaction with their child's progress, better understanding of their child's learning needs, and an increased ability to access school supports. The strong, positive impact associated with the consultation, psychoeducation, and parental advocacy training provided by the SLP suggests that a similar model of care would potentially benefit other groups of children whose neurocognitive functioning is compromised by chronic medical conditions.
中枢神经系统（CNS）癌症的儿童幸存者（定义为诊断或治疗影响中枢神经系统的癌症）出现与教育相关困难的风险增加，患有1型神经纤维瘤病的儿童也是如此。本研究评估了学校联络计划（SLP）为患有中枢神经系统相关癌症儿童的家庭和学校提供的心理教育、咨询和宣传模式的有效性及满意度，并与未接受学校服务的1型神经纤维瘤病诊断儿童的家长对照组进行比较。结果表明，在家长认为孩子发挥学术潜力方面，两组之间存在显著差异，接受SLP服务的家长对孩子的进步更满意，对孩子的学习需求有更好的理解，并且获得学校支持的能力有所提高。SLP提供的咨询、心理教育和家长宣传培训产生的强大积极影响表明，类似的护理模式可能会使其他因慢性疾病而神经认知功能受损的儿童群体受益。
