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：
7279976
负责人：
GAIL GELLER
金额：
$ 18.18万
依托单位：
JOHNS HOPKINS UNIVERSITY
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 2009-08-31
项目状态：
已结题

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进行互动。许多相互作用是在胎儿、儿童或成人诊断出严重或危及生命的疾病时发生的。其他相互作用发生在为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。在最近举行的关于遗传性疾病临终问题的美国国立卫生研究院研讨会上，人们一致认为，遗传服务提供者需要找到与患者讨论临终问题的方法，并帮助患者应对不确定性。遗传服务提供者在照顾受严重遗传病影响或罹患严重遗传病风险增加的个人和家庭的过程中，可能会经历相当大的悲伤、道德困扰和诚信受到威胁。甚至有一些证据表明，道德困扰会导致职业倦怠。然而，这种痛苦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这些领域接受过足够的培训。拟议的研究将定量和定性地研究不同类型的遗传服务提供者之间的痛苦的性质、程度、来源和后果，并就可能开发的干预措施类型提出建议，以帮助提供者应对他们的痛苦。根据具体目标 1 (SA1)，我们将组织 3 个焦点小组，包括 1 个遗传咨询师、1 个遗传护士和 1 个临床遗传学家，以探讨困扰和痛苦的本质（道德困扰、悲伤、对诚信的威胁、不确定性）是他们在工作中所经历的。根据 SA2，我们将对更大样本（N=300）的遗传服务提供者（每种类型 100 名）进行问卷调查，这些服务提供者在产前、儿科和成人遗传诊所中照顾可能危及生命的个体，并进行深入的调查。对 90 名调查问卷受访者（每种类型 30 名）进行电话访谈，以确定不同类型遗传服务提供者之间痛苦的来源和程度的差异、每个人经历的痛苦的后果以及他们认为最有用的干预类型。根据 SA3，根据之前的意见以及混合焦点小组的意见，我们将制定干预措施建议，以减少遗传服务提供者所经历的痛苦。此类干预措施旨在重申对专业的承诺并改善患者护理。