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。五年生存率的改善（已缓慢改善至65%）可归因于多模式治疗的进步，包括手术、化疗和颅骨和/或脊柱放疗以及支持性护理的改善。然而，这些儿童的生存对他们的认知和社会功能、生长和发育以及主要器官功能以及作为他们最典型的照顾者的母亲来说是一个巨大的代价。对儿童脑肿瘤幸存者的照顾通常会持续到成年，因为他们通常不会独立于他们的家庭。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，重新构建他们的照顾者需求，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和家庭功能。这项跨学科的研究建议开始，以填补这些空白，在我们的理解进行混合方法研究的启发式模型的基础上，脑肿瘤幸存者的照顾者的感知能力。定量数据将收集有关感知的生存需求，幸存者和照顾者的心理社会功能，幸存者的身体相关功能，以及家庭功能，从196名照顾者和他们的青少年和年轻成人幸存者（视情况而定）的儿童脑肿瘤被视为在一个大型的，区域癌症生存计划和神经肿瘤学计划在美国大西洋中部。(The目标样本量提供80%的统计功效，以定义多变量模型，解释护理人员能力中40%的变异，显著性水平为0.001）。将筛选符合这些标准的所有护理人员，以便纳入研究：如果其青少年和年轻成人幸存者距诊断5年或更长时间，则将招募母亲护理人员;距停止治疗2年或更长时间;并且年龄在14至30岁之间。然后，根据护理人员能力和护理人员需求的测量分数，从研究定量阶段至少28-40名护理人员的有目的、基于标准的样本中收集定性数据。调查结果将用于实现描述模型中的变量和测试变量之间关系的短期目标。然后，该模型可以作为基础，以满足长期目标的发展理论为基础的干预措施，以提高感知的照顾者能力的母亲谁是照顾患有脑肿瘤的儿童。护理和卫生保健提供者担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其照顾作用，并帮助幸存者满足他们的需求，而不感到有能力作为照顾者。

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.