Mothers as caregivers for survivors of brain tumors

描述（由申请人提供）：在美国，超过359,000人是原发性脑和/或中枢神经系统肿瘤的幸存者，大约26,000名幸存者是19岁以下的儿童。5年生存率的提高，已缓慢提高到65%，可归因于多模式治疗的进步，包括手术、化疗、颅脑和/或脊柱照射，以及支持治疗的改进。然而，这些儿童的生存对他们的认知和社会功能、生长和发育、主要器官功能以及他们的母亲（他们是最典型的照顾者）造成了重大损失。对儿童期脑肿瘤幸存者的照顾通常会持续到成年，因为他们通常无法脱离原生家庭独立。我们对这些照顾者的理解存在差距，我们如何设计干预措施，以提高他们作为照顾者的感知能力，重新定义他们的照顾需求，以及治疗幸存者和照顾者的心理社会问题，幸存者的身体相关问题，以及家庭功能。本跨学科研究建议通过开展一项基于启发式模型的混合方法研究来填补我们理解中的这些空白，即脑肿瘤幸存者照顾者的感知能力。在美国大西洋中部的一个大型区域性癌症幸存者项目和神经肿瘤学项目中，将收集来自196名儿童脑肿瘤患者的护理需求、幸存者和护理者的心理社会功能、幸存者的身体相关功能和家庭功能的定量数据。（目标样本量提供了80%的统计能力，以定义一个多变量模型，解释40%的护理人员能力差异，显著性水平为0.001）。所有符合这些标准的照顾者将被筛选纳入研究：如果照顾者是母亲，如果她们的青少年和年轻成人幸存者距离诊断5年或更长时间，将被招募；停止治疗后2年或更长时间；在14岁到30岁之间。定性数据将从一个有目的的，基于标准的样本收集至少28-40名看护者从定量阶段的研究基于他们的分数在照顾者能力和照顾者需求的措施。本次调查的结果将用于满足描述模型中的变量和检验变量之间关系的短期目标。该模型可作为基础，以实现开发基于理论的干预措施的长期目标，以提高照顾脑肿瘤儿童的母亲的感知照顾能力。护理和卫生保健提供者关心照顾者的功能以及癌症长期幸存者的健康，因为照顾者不能有效地发挥他们的照顾角色，帮助幸存者满足他们的需求，如果没有作为照顾者的能力。

DESCRIPTION (provided by applicant): More than 359,000 persons in the U.S. are survivors of a primary brain and/or central nervous system tumors, and approximately 26,000 survivors are children under 19 years of age. Improvements in five- year survival rates, which have slowly improved to 65%, can be attributed to advances in multi-modal therapy including surgery, chemotherapy, and cranial and/or spinal irradiation as well as to improvements in supportive care. Survival of these children, however, comes at a significant cost to their cognitive and social functioning, growth and development, and major organ function as well as to their mothers who are their most typical caregivers. Caregiving for survivors of childhood brain tumors often continues into adulthood, as they typically do not become independent of their families of origin. A gap exists in our understanding about these caregivers in terms of how we can design interventions that will increase their perceived competence as caregivers and reframe their caregiver demands, as well as treat the psychosocial problems of survivors and caregivers, the physical-related problems of survivors, and household functioning. This interdisciplinary study proposes to begin to fill these gaps in our understanding by conducting a mixed methods study based on a heuristic model, Perceived Competence for Caregivers of Brain Tumor Survivors. Quantitative data will be gathered regarding perceived caregiving demands, psychosocial functioning of the survivor and caregiver, physical-related functioning of the survivor, and household functioning from 196 caregivers and their adolescent and young adult survivors (as appropriate) of childhood brain tumors being seen in a large, regional Cancer Survivorship Program and a Neuro-Oncology Program in the Mid-Atlantic United States. (The target sample size provides 80 percent statistical power to define a multivariate model explaining 40 percent of the variation in caregiver competence with a level of significance of .001). All caregivers meeting these criteria will be screened for inclusion in the study: caregivers who are mothers will be recruited if their adolescent and young adult survivors are 5 or more years from diagnosis; 2 or more years from discontinuation of therapy; and, between the ages of 14 and 30 years. Qualitative data will then be gathered from a purposeful, criterion based sample of at least 28-40 caregivers from the quantitative phase of the study based on their scores on measures of caregiver competency and caregiver demands. Results of this investigation will be used to meet the short-term goal of describing the variables in the Model and testing the relationships among the variables. This Model can then be used as the basis to meet the long-term goal of developing theory based interventions to enhance the perceived caregiver competence of mothers who are caregivers for children with brain tumors. Nursing and health care providers are concerned about functioning of caregivers as well as the health of long-term survivors of cancer because caregivers cannot be effective in their caregiving roles and assist the survivor with their needs without feeling competent as caregivers.