Moral Distress and Suffering of Genetics Professionals

描述（由申请人提供）：基因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胎儿、儿童或成人诊断出严重或危及生命的疾病时。其他相互作用发生在向受遗传影响的个人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疾病的生命终结问题的NIH研讨会上，人们一致认为，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，并帮助患者应对不确定性。遗传服务提供者在照顾受严重遗传疾病影响或风险增加的个人和家庭的过程中，很可能会经历相当大的悲伤、道德上的痛苦和对诚信的威胁。甚至有证据表明，道德困境会导致职业倦怠。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充分的培训。拟议的研究将从数量和质量上检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，并就可能开发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，我们将组织3个焦点小组，1名遗传咨询师，1名遗传护士和1名临床遗传学家，探讨他们在工作中经历的痛苦和痛苦的本质（道德痛苦，悲伤，诚信威胁，不确定性）。在SA2下，我们将对更大样本（N=300）的遗传服务提供者（每种类型100人）进行问卷调查，他们在产前、儿科和成人遗传诊所照顾可能危及生命的个体，并对90名问卷受访者（每种类型30人）进行深度电话访谈，以确定不同类型遗传服务提供者的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，我们将根据以前的投入以及一个混合焦点小组的投入，制定干预建议，以减少遗传服务提供者所经历的痛苦。这种干预的目的将是恢复对这一职业的承诺，并改善对病人的护理。

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.