Moral Distress and Suffering of Genetics Professionals
遗传学专业人士的道德困境和痛苦
基本信息
- 批准号:6965793
- 负责人:
- 金额:$ 38.33万
- 依托单位:
- 依托单位国家:美国
- 项目类别:
- 财政年份:2005
- 资助国家:美国
- 起止时间:2005-09-20 至 2008-08-31
- 项目状态:已结题
- 来源:
- 关键词:anxietybehavioral /social science research tagclinical researchconflictdiagnosis servicefocus groupsgenetic counselinggenetic disorder diagnosisgeneticsgriefhealth care personnelhealth care professional practicehealth care servicehealth science professionhealth services research taghuman subjectinterviewmoralsnursingpatient care managementpatient care personnel relationsphysicianspsychological stressorquestionnaires
项目摘要
DESCRIPTION (provided by applicant): Genetic service providers interact with patients who are experiencing profoundly personal and emotional life events. Many interactions occur at the time of diagnosis of a serious or life-threatening disorder in a fetus, child or adult. Other interactions occur over the course of providing on-going care to genetically affected individuals, including care rendered near the end of life. In a recent NIH workshop on end-of-life-issues in genetic disorders, there was consensus that genetic service providers need to find ways to talk about end-of life issues with their patients, and help patients deal with uncertainty. It is likely that genetic service providers experience considerable grief, moral distress and threats to integrity in the course of caring for individuals and families affected by, or at increased risk of, serious genetic disease. There is even some evidence that moral distress can lead to professional burnout. Yet this distress has rarely been acknowledged or described in the literature, nor have most genetic service providers received adequate training in any of these areas. The proposed study will examine, both quantitatively and qualitatively, the nature, extent, sources and consequences of distress among different types of genetic service providers, and develop recommendations regarding the sort of intervention that might be developed to help providers deal with their distress. Under specific aim 1 (SA1), we will conduct 3 focus groups, 1 of genetic counselors, 1 of genetic nurses and 1 of clinical geneticists, to explore the nature of distress and suffering (moral distress, grief, threats to integrity, uncertainty) that they have experienced in their work. Under SA2, we will administer a questionnaire to a larger sample (N=300) of genetic service providers (100 of each type) who care for individuals with potentially life threatening conditions in prenatal, pediatric and adult genetics clinics, and conduct in-depth telephone interviews of 90 questionnaire respondents (30 of each type) to determine the variability in sources and extent of distress among different types of genetic service providers, the consequences of the distress experienced by each and the kind of intervention that they would find most useful. Under SA3, based on previous input as well as input from one mixed focus group, we will develop recommendations for an intervention to reduce distress experienced by genetic service providers. Such an intervention would be aimed at renewing commitment to the profession and improving patient care.
描述(由申请人提供):遗传服务提供者与正在经历深刻的个人和情感生活事件的患者互动。许多相互作用发生在诊断胎儿、儿童或成人严重或危及生命的疾病时。其他的相互作用发生在向受遗传影响的个体提供持续护理的过程中,包括在生命即将结束时提供的护理。在最近的一次关于遗传性疾病中生命终结问题的NIH研讨会上,人们达成了共识,即遗传服务提供者需要找到与患者谈论生命终结问题的方法,并帮助患者处理不确定性。遗传服务提供者在照顾受严重遗传疾病影响或面临更大风险的个人和家庭的过程中,可能会经历相当大的悲痛、道德压力和对正直的威胁。甚至有证据表明,道德压力会导致职业倦怠。然而,这种困扰很少在文献中得到承认或描述,大多数遗传服务提供者也没有在任何这些领域接受过适当的培训。拟议的研究将从数量和质量两个方面审查不同类型的遗传服务提供者的痛苦的性质、程度、来源和后果,并就可能制定的干预措施提出建议,以帮助提供者处理他们的痛苦。在具体目标1(SA1)下,我们将进行3个焦点小组,1个遗传咨询师,1个遗传护士和1个临床遗传学家,以探索他们在工作中经历的痛苦和痛苦的性质(道德困扰,悲伤,对诚信的威胁,不确定性)。根据SA2,我们将向更大样本(N=300)的遗传服务提供者进行问卷调查(每种100人)在产前、儿科和成人遗传诊所护理有潜在生命威胁的个体,并对90名问卷受访者进行了深入的电话访问(每种类型30个),以确定不同类型的遗传服务提供者之间痛苦来源和程度的差异,每个人所经历的痛苦的后果以及他们认为最有用的干预方式。根据SA3,根据以前的投入以及一个混合焦点小组的投入,我们将制定干预建议,以减少遗传服务提供者所经历的痛苦。这种干预的目的是重新承诺的专业和改善病人的护理。
项目成果
期刊论文数量(0)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
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GAIL GELLER其他文献
GAIL GELLER的其他文献
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{{ truncateString('GAIL GELLER', 18)}}的其他基金
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- 资助金额:
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- 资助金额:
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