Moral Distress and Suffering of Genetics Professionals

描述(由申请人提供)：基因服务提供商与正在经历深刻个人和情感生活事件的患者互动。在诊断出胎儿、儿童或成人患有严重或危及生命的疾病时，会发生许多相互作用。其他相互作用发生在向受基因影响的个人提供持续护理的过程中，包括在生命接近尾声时提供的护理。在最近的一次NIH关于遗传疾病中的临终问题的研讨会上，人们达成了共识，即遗传服务提供商需要找到方法与他们的患者讨论临终问题，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病影响或风险增加的个人和家庭的过程中，可能会经历相当大的悲痛、精神痛苦和对诚信的威胁。甚至有一些证据表明，精神上的痛苦可能会导致职业倦怠。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。拟议的研究将对不同类型的遗传服务提供者的痛苦的性质、程度、来源和后果进行定量和定性的审查，并就可能制定的干预措施提出建议，以帮助提供者处理其痛苦。在具体目标1(SA1)下，我们将组织3个重点小组，1名遗传咨询师，1名遗传护士和1名临床遗传学家，以探索他们在工作中经历的痛苦和痛苦的性质(精神痛苦、悲伤、对诚信的威胁、不确定性)。根据SA2，我们将在产前、儿科和成人遗传学诊所向更大样本(N=300)遗传服务提供者(每类100人)发放问卷，并对90名受访者(每类30人)进行深入的电话访问，以确定不同类型遗传服务提供者痛苦的来源和程度的差异，每个人经历痛苦的后果，以及他们认为最有用的干预措施。根据SA3，我们将根据以前的投入以及一个混合重点小组的投入，制定干预建议，以减少遗传服务提供者经历的痛苦。这样的干预将旨在重申对该职业的承诺，并改善患者护理。

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.