Parental Care of Children Post Stem Cell Transplant

干细胞移植后儿童的父母护理

• 批准号: 6805392
• 负责人: Sharron L Docherty
• 金额: $ 23.1万
• 依托单位: DUKE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2004
• 资助国家: 美国
• 起止时间: 2004-08-01 至 2008-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6805392
• 关键词: age difference; behavioral /social science research tag; caregivers; children; clinical research; cognition; coping; emotions; female; health care quality; hematopoietic stem cells; human subject; hypothalamic pituitary adrenal axis; longitudinal human study; marriage /marital status; mental health epidemiology; mother child interaction; posthospitalization care; psychometrics; racial /ethnic difference; social support network; socioeconomics; stem cell transplantation; stress; stress management; women' s health

DESCRIPTION (provided by applicant): Pediatric hematopoietic stem cell transplantation (HSCT) is now considered standard therapy for many life-threatening hematologic and oncologic diseases and indications for its use have recently expanded to include previously untreatable inherited metabolic and mucopolysaccharide disorders. The inspiring success of this treatment as well as efforts to expand the indications for its use would not be possible without the informal parental caregivers who provide the highly technological, acute care required by the child for the first 6 months post discharge as well as the longer-term needs in the subsequent year. Very little has been written about the demands of maternal caregiving throughout the transplant trajectory. The purpose of this pilot study is to examine responses and long-term maternal adjustment of mothers providing acute care to their children throughout the HSCT transplant trajectory. A longitudinal, prospective, exploratory design will be conducted in the inpatient and outpatient setting of the Duke Pediatric Stem Cell Transplant Program. The sample will consist of 100 mothers of children with hematologic malignancies, solid tumors, bone marrow and immune system disorders, and inherited metabolic disorders. Beginning with 5 days pretransplant then at post transplant days 7, 21, 90, 180 and 360, maternal cognitive (stress appraisal, expectations of self & cognitive coping), affective (emotional impact) and physiologic (salivary cortisol) responses to caregiving will be examined as well as long term maternal adjustment (post traumatic stress response & post traumatic growth) at 360 days post transplant. Descriptive statistics and regression will be used for data analysis. The results of this study will inform the design of a larger study addressing parental responses and adjustment patterns during a child's HSCT and their relationship to the child's symptom distress as well as health and development outcomes. In general, this study represents an initial step in a program of research designed to identify particular populations of HSCT children and parents (e.g. low income respondents, single parents, those far from home) at risk of poorer outcomes, and to understand the mechanisms (affective, cognitive, and physiologic) accounting for these outcomes. Relevant findings will ultimately be used to develop and target interventions intended to improve physical and psychosocial outcomes for parental care- givers and their children undergoing HSCT.

描述（由申请人提供）：现在被认为是许多危及生命的血液学和肿瘤学疾病的标准治疗（HSCT）被认为是标准疗法，以及用于其使用的适应症最近已扩展到以前无法治疗的遗传性遗传性代谢和粘多糖障碍。如果没有非正式的父母照顾者，这项治疗的鼓舞人心的成功以及扩大其使用迹象的努力将是不可能的，这些非正式父母照顾者在出院后头六个月提供了高度技术，急性护理，以及随后一年的长期需求。关于整个移植轨迹的孕产妇照顾需求的文章很少。这项试点研究的目的是检查在整个HSCT移植轨迹中为子女提供急诊护理的母亲的反应和长期母亲调整。将在杜克小儿干细胞移植计划的住院和门诊环境中进行纵向，前瞻性探索性设计。该样本将由100位血液学恶性肿瘤，实体瘤，骨髓和免疫系统疾病以及遗传代谢疾病的儿童组成。从5天开始进行预科开始，然后在移植后第7、21、90、180和360天开始，孕产妇认知（压力评估，对自我和认知应对的期望），情感（情感影响）和生理（唾液性皮质）（唾液皮质）对护理的响应将得到长期的调整，并在36年后进行临时响应（Traimatitial Postemant）。描述性统计和回归将用于数据分析。这项研究的结果将为一项更大的研究设计，该研究涉及儿童HSCT期间父母的反应和调整模式，及其与儿童症状困扰以及健康和发展结果的关系。一般而言，这项研究代表了一项研究计划的第一步，旨在确定HSCT子女的特定人群（例如，低收入受访者，单亲父母，远离家乡的人）面临较差结果的风险，并了解这些现象的机制（情感，认知和生理）。相关发现最终将用于制定和针对旨在改善父母照顾者及其患有HSCT的孩子的身体和社会心理成果的干预措施。