Mothers as caregivers for survivors of brain tumors

母亲作为脑肿瘤幸存者的照顾者

• 批准号: 7318557
• 负责人: Janet Alma Deatrick
• 金额: $ 37.05万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2007
• 资助国家: 美国
• 起止时间: 2007-07-17 至 2010-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7318557
• 关键词: Adolescence; Adolescent; Adult; Aftercare; Age; Age-Years; Appearance; Appendix; Attention; Belief; Brain; Brain Neoplasms; Cancer Family; Cancer Survivor; Cancer Survivorship; Caregivers; Caring; Central Nervous System Neoplasms; Cephalic; Cessation of life; Child; Childhood Brain Neoplasm; Childhood Solid Neoplasm; Chronic; Chronic Disease; Cognition; Cognitive; Community Clinical Oncology Program; Competence; Complement; Data; Development; Developmental Disabilities; Diagnosis; Dimensions; Discipline of Nursing; Endocrine; Face; Family; Family member; Feeling; Goals; Growth; Health; Health Personnel; Healthcare; Household; Interdisciplinary Study; Intervention; Investigation; Life; Long-Term Survivors; Malignant Childhood Neoplasm; Measures; Methodology; Methods; Modeling; Mothers; Neurologic Dysfunctions; Newborn Infant; Operative Surgical Procedures; Organ; Perception; Persons; Phase; Principal Investigator; Problem Solving; Recruitment Activity; Regional Cancer; Research; Research Personnel; Role; Sample Size; Sampling; Score; Short-Term Memory; Significance Level; Social Functioning; Specialist; Spinal; Supportive care; Survival Rate; Survivors; Testing; United States; Ursidae Family; Variant; Visual; base; body-mind; care giving burden; caregiving; chemotherapy; cost; design; hearing impairment; heuristics; improved; innovation; irradiation; multidisciplinary; neuro-oncology; processing speed; programs; psychosocial; response; skills; social skills; survivorship; theories; therapy design; therapy development; young adult

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.

描述(申请人提供)：在美国，超过359,000人是原发脑部和/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。五年存活率已缓慢提高至65%，这可归功于包括手术、化疗、头颅和/或脊柱放射在内的多种模式治疗的进步以及支持性护理的改进。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--他们最典型的照顾者--都是巨大的代价。对儿童脑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原籍家庭。我们对这些照顾者的理解存在差距，因为我们如何设计干预措施，提高他们作为照顾者的感知能力，重新确定他们的照顾者需求，并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。这项跨学科研究建议通过进行一项基于启发式模型的混合方法研究开始填补我们理解中的这些空白，该模型为脑瘤幸存者的照顾者感知能力。将从196名儿童脑瘤照顾者及其青春期和青春期幸存者(视情况而定)的照顾者及其青少年和青年幸存者(视情况而定)的家庭功能中收集有关感知的照看需求、幸存者和照顾者的心理社会功能、幸存者的身体相关功能和家庭功能的量化数据。这些儿童脑瘤是在美国大西洋中部的一个大型地区性癌症生存计划和神经肿瘤学计划中看到的。(目标样本量提供了80%的统计能力来定义多变量模型，解释照顾者能力中40%的变异，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：如果其青少年和年轻成年幸存者距离确诊有5年或更长时间，距离停止治疗2年或更长时间，以及年龄在14岁至30岁之间，将招募为母亲的照顾者。然后，将从至少28-40名照顾者的有目的的、基于标准的样本中收集定性数据，这些样本来自研究的定量阶段，基于他们对照顾者能力和照顾者需求的衡量标准的分数。本次调查的结果将用于满足短期目标，即描述模型中的变量并测试变量之间的关系。然后，这个模型可以作为实现长期目标的基础，即开发基于理论的干预措施，以提高作为脑瘤儿童照顾者的母亲的感知照顾者能力。护理和保健提供者对照顾者的功能以及癌症长期幸存者的健康感到关切，因为如果不觉得自己是照顾者，照顾者就不能有效地发挥照顾者的作用，帮助幸存者满足他们的需要。