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（由申请人提供）：美国有359,000多人是原发性大脑和/或中枢神经系统肿瘤的幸存者，约有26,000名幸存者是19岁以下的儿童。五年生存率的改善逐渐提高到65％，这可以归因于多模式疗法的进步，包括手术，化学疗法以及颅和/或脊柱辐射，以及支持护理的改善。然而，这些孩子的生存付出了巨大的认知和社会功能，成长和发展以及主要的器官功能以及最典型的护理人员的母亲的巨大成本。儿童脑肿瘤幸存者的照顾通常一直持续到成年，因为它们通常不会独立于其原籍家庭。从我们如何设计干预措施方面，我们对这些护理人员的理解存在差距，这些干预措施将增加他们作为护理人员的感知能力并重新构成照料者的需求，并治疗幸存者和照料者的社会心理问题，幸存者的身体问题以及家庭功能。这项跨学科研究建议通过基于启发式模型，感知的脑肿瘤幸存者护理人员的能力进行混合方法研究，开始在我们的理解中填补这些空白。将收集有关感知的护理需求，幸存者和照料者的心理社会功能，幸存者的身体相关功能以及来自196个护理人员及其青少年和年轻的成人幸存者（适当的儿童脑肿瘤）的家庭功能的定量数据，在一个大型的，区域性的癌症生存状态和神经学计划中都被发现。 （目标样本量提供了80％的统计能力来定义多元模型，该模型解释了护理人员能力变化的40％，其显着性水平为.001）。所有符合这些标准的护理人员都将被筛选以纳入研究：如果他们的青少年和年轻的成年幸存者距离诊断为5年或更长时以上，则将招募母亲的护理人员；终止治疗后的2年或更长时间；并且，在14至30岁之间。然后，将根据他们根据护理人员能力和照料者需求的评分，从研究定量阶段从有目的的，基于标准的28-40个护理人员中收集定性数据。该研究的结果将用于满足描述模型中变量并测试变量之间的关系的短期目标。然后，该模型可以用作满足基于理论的干预措施的长期目标的基础，以增强母亲的看护人能力，这些母亲是患有脑肿瘤儿童的护理人员。护理和卫生保健提供者关心护理人员的运作以及癌症的长期幸存者的健康，因为护理人员不能在他们的护理角色中有效，并在没有能力作为照顾者的情况下帮助幸存者满足他们的需求。