Caregiver functional expectations for survivors of childhood brain tumors

描述(申请人提供)：在脑瘤中存活的儿童有可能在没有获得独立生活的情况下比父母活得更长。与潜在的多灶性功能障碍相关的生存预后的不确定性取决于肿瘤的类型、位置和治疗，这对家庭来说是困难的。影响神经认知、身体和心理社会领域干扰里程碑成就(例如，高等教育、就业、生活伙伴)和独立性的晚期医学后遗症往往在幸存者二十多岁时变得明显，儿童服务不可用。对那些在童年时遭受神经元伤害的人的期望可能包括照顾者寻找和利用资源，这些资源旨在补救或其他旨在提高儿童的神经认知、身体和/或心理社会潜力的干预措施。目前，儿童时期神经可塑性的程度以及在肿瘤、手术或放疗造成的神经损伤后弥补神经损伤的潜力尚不清楚，但随着越来越多的儿童脑瘤幸存者参与旨在各种形式的补救计划，我们可能会有更好的定义。该项目建议对来自母亲照顾者及其青春期和青春期脑瘤幸存者的大型研究的定性和定量数据进行二次分析。一种混合的方法分析将调查照顾者对幸存者认知、身体和心理社会功能的期望，以及这些期望与当前幸存者功能之间的关联。随后，将探讨感知照顾者需求与照顾者期望和幸存者功能之间的关系。该项目旨在描述照顾者对幸存者功能的期望，这将使提供者能够明确承认对父母重新谈判照看的期望。申请者研究计划的长期目标是改善照顾者的需求和家庭功能的其他方面，包括生存期间的决策，以及幸存者、照顾者和其他家庭成员的生活质量。因此，该项目的目标与NINR战略计划的目标是一致的，即沟通、决策、护理和生活质量。 与公共健康相关：尽管脑瘤幸存者的孩子比他们的父母活得更长已经成为一种常态，但许多人无法独立生活。父母的功能期望可能会引导人们对可能补偿认知、身体和/或心理社会功能障碍的干预的渴望。了解父母的期望可能会导致更多的干预措施，以促进独立性。

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. PUBLIC HEALTH RELEVANCE: Although it has become the norm that children surviving brain tumors will outlive their parents, many cannot live independently. Parental functional expectations may guide desire for interventions that might compensate for cognitive, physical and/or psychosocial dysfunctions. Understanding parental expectations may lead toward increased accession of interventions to promote indepedence.