Coping Strategies in Parents of Children with a Chromoso

染色体儿童父母的应对策略

• 批准号: 6829362
• 负责人: BARBARA BOWLES BIESECKER
• 金额: --
• 依托单位: NATIONAL HUMAN GENOME RESEARCH INSTITUTE
• 依托单位国家: 美国
• 资助国家: 美国
• 起止时间: 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/6829362
• 关键词: behavioral /social science research tag; chromosome disorders; coping; data collection methodology /evaluation; emotions; family structure /dynamics; gene expression; genetic counseling; health surveys; human subject; orphan disease /drug; patient care personnel relations; psychological adaptation; psychological stressor

This study is examining coping strategies of parents who have a child with a rare chromosome anomaly. These abnormalities are imbued with a great deal of uncertainty that parents must cope with in their adaptation. Two broad categories of coping strategies are emotion-focused and problem-focused. Emotion-focused coping centers on trying to change one's feelings about the stressor. Prior research suggests that people use emotion-focused coping strategies more often when they feel that they are less in control of the situation and when they experience a heightened sense of uncertainty. Accordingly, we hypothesize that when parents perceive there to be a greater level of uncertainty and perceive that they have a low degree of controllability, they will be more likely to use emotion-focused coping strategies. To evaluate this hypothesis, a survey has been administered to parents in a national support organization called the Chromosome Deletion Outreach. Their children have a wide variety of chromosome abnormalitites. Data will be analyzed to identify strategies for health care providers, particularly genetic counselors, to enhance emotion-focused coping in light of high degrees of uncertainty and lack of control.

这项研究正在研究父母的应对策略，他们的孩子患有罕见的染色体异常。这些异常充满了大量的不确定性，父母必须在适应过程中科普。两大类应对策略是以情绪为中心和以问题为中心。以预防为中心的应对方法是试图改变一个人对压力源的感觉。先前的研究表明，当人们觉得自己对情况的控制能力较弱时，以及当他们体验到高度的不确定感时，他们会更频繁地使用以情绪为中心的应对策略。因此，我们假设，当父母认为有一个更大的不确定性，并认为他们有一个低程度的可控性，他们将更有可能使用情绪为重点的应对策略。 为了评估这一假设，一个名为染色体删除外展的国家支持组织对父母进行了一项调查。他们的孩子有各种各样的染色体异常。数据将进行分析，以确定战略的卫生保健提供者，特别是遗传咨询师，以提高情绪为重点的应对高度的不确定性和缺乏控制。