Caregiver functional expectations for survivors of childhood brain tumors

描述（由申请人提供）：脑瘤存活的儿童有可能比他们的父母活得更久，而没有获得独立生活。与肿瘤类型、位置和治疗相关的潜在多灶性功能障碍的生存预后的不确定性对家庭来说是困难的。晚期医学后遗症影响到神经认知、身体和心理社会领域，影响到具有里程碑意义的成就（例如，高等教育、就业、生活伴侣关系）和独立，往往在幸存者20多岁时变得明显，而且无法获得儿童服务。对儿童时期遭受神经损伤的儿童的期望可能包括照顾者寻找和利用资源，以补救或其他干预措施为目标，以增加儿童的神经认知、身体和/或社会心理潜力。目前，儿童时期神经可塑性的程度以及肿瘤、手术或放疗后神经损伤的补偿潜力尚不清楚，但随着越来越多的儿童脑肿瘤幸存者参与各种形式的修复项目，我们可能会得到更好的定义。本项目提出了一个二次分析定性和定量数据从一个大型研究的母亲照顾者和他们的青少年和年轻的成人儿童脑肿瘤幸存者。一项混合方法学分析将调查照顾者对幸存者认知、身体和心理功能的期望，以及这些期望与当前幸存者功能之间的关系。随后，研究了照顾者需求感知与照顾者期望和幸存者功能的关系。本项目旨在描述照顾者对幸存者功能的期望，这将使提供者明确承认父母重新协商照顾的期望。申请人研究项目的长期目标是改善照顾者的需求和家庭功能的其他方面，包括幸存者期间的决策，以及幸存者，照顾者和其他家庭成员的生活质量。因此，这个项目的目标与“新区域研究战略计划”的目标是一致的，即沟通、决策、护理和生活质量。

DESCRIPTION (provided by applicant): Children surviving brain tumors have the potential to outlive their parents without having attained independent living. The uncertainty associated with prognosis for survivorship related to potential multifocal dysfunction dependent upon tumor type, location, and treatment is difficult for families. Late medical sequelae affecting neurocognitive, physical, and psychosocial areas that interfere with milestone achievement (e.g., higher education, employment, life partnership) and independence often become evident when survivors reach their twenties and childhood services are not available. Expectations for those suffering neuronal insult in childhood may incorporate a caregiver's search for and utilization of resources geared toward remediation or other interventions aimed at increasing the neurocognitive, physical, and/or psychosocial potential of the child. Currently, the extent of neuroplasticity in childhood and the potential to compensate for deficits after neural insult from tumor, surgery or radiation are not well known, but we may gain better definition as increasing numbers of survivors of childhood brain tumors participate in programs aimed at various forms of remediation. This project proposes a secondary analysis of qualitative and quantitative data from a large study of mother- caregivers and their adolescent and young adult survivors of childhood brain tumors. A mixed methodological analysis will investigate caregiver expectations for survivor cognitive, physical, and psychosocial functioning as well as the association between those expectations and current survivor function. Subsequently, the relationship of perceived caregiver demands with caregiver expectations and survivor function will be explored. This project aims to describe caregiver expectations for survivor function, which will enable providers to explicitly acknowledge expectations for parents to renegotiate caregiving. The long term goal of the applicant's program of research is to improve demands experienced by the caregiver and other aspects of family functioning including decision-making during survivorship, and the quality of life of the survivors, caregivers, and other family members. As such, the goals of this project are in consort with those of the NINR Strategic Plan, namely communication, decision-making, caregiving, and quality of life.