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）：儿科造血干细胞移植（HSCT）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，其使用适应症最近已扩展到包括以前无法治疗的遗传性代谢和粘多糖疾病。如果没有非正式的父母照顾者，这种治疗的鼓舞人心的成功以及扩大其使用适应症的努力是不可能的，他们在出院后的前6个月提供儿童所需的高科技急性护理以及随后一年的长期需求。很少有人写过在整个移植过程中母亲的需求。这项试点研究的目的是检查反应和长期的母亲调整提供急性护理，他们的孩子在整个HSCT移植轨迹。将在杜克儿科干细胞移植项目的住院和门诊患者中进行纵向、前瞻性、探索性设计。样本将包括100名患有血液恶性肿瘤、实体瘤、骨髓和免疫系统疾病以及遗传性代谢疾病的儿童的母亲。从移植前5天开始，然后在移植后第7、21、90、180和360天，（压力评估，自我和认知应对的期望），情感（情绪影响）和生理影响（唾液皮质醇）的反应，以及长期的母亲调整将被检查（创伤后应激反应和创伤后生长）。将使用描述性统计和回归进行数据分析。本研究的结果将为一项更大规模的研究设计提供信息，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育结果的关系。总的来说，这项研究代表了一项研究计划的第一步，该计划旨在确定HSCT儿童和父母（例如低收入受访者，单亲父母，远离家庭的人）的特定人群，这些人群有可能出现较差的结果，并了解这些结果的机制（情感，认知和生理）。相关研究结果将最终用于制定和目标干预措施，旨在改善父母照顾者及其接受HSCT的儿童的身体和心理社会结果。