End-of-Life Care After Severe Fetal Diagnosis

严重胎儿诊断后的临终关怀

• 批准号: 8252144
• 负责人: Beth Black
• 金额: $ 18.5万
• 依托单位: UNIV OF NORTH CAROLINA CHAPEL HILL
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-04-05 至 2013-03-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8252144
• 关键词: Address; Aftercare; Anxiety; Beginning of Life; Bereavement; Birth; Caring; Cessation of life; Child; Clinical; Complex; Couples; Data; Decision Making; Defect; Development; Diagnosis; Discipline of Nursing; Discipline of obstetrics; Emotional; Epidemiology; Ethnography; Evolution; Face; Family; Fetal Death; Fetus; Foundations; Genetic Counseling; Goals; Grief reaction; Health Personnel; Hospice Care; Infant; Infant Health; Intervention Studies; Interview; Knowledge; Learning; Life; Literature; Maternal Health; Measures; Medical Records; Mental Depression; Modeling; Morphologic artifacts; Nature; Neonatal; North Carolina; Nurses; Palliative Care; Participant; Pastoral Care; Patients; Perinatal; Pregnancy; Pregnancy Outcome; Pregnant Women; Preparation; Provider; Questionnaires; Recruitment Activity; Reporting; Research; Screening procedure; Services; Social Work; Time; Universities; Woman; Work; clinical conference; end of life; ethnographic method; expectation; experience; fetal; fetal diagnosis; hospice environment; in utero; medical schools; medical specialties; neonatal death; neonate; news; oncology; outcome forecast; palliative; prenatal; prenatal testing; programs; public health relevance; response; stillbirth; trait

DESCRIPTION (provided by applicant): The diagnosis of severe (lethal or life-limiting) fetal defects confronts pregnant women, their partners and their health care providers with the devastating paradox of the end-of-life at the beginning of life. The increasing routine use of prenatal testing has increased the numbers of pregnant women who are diagnosed with severe fetal defects. Continuation of pregnancy that is known to likely end in fetal or neonatal death presents challenges in the perinatal setting. Health care providers have recognized the importance of care tailored to the specific needs of these women and their partners, hence end-of-life care in perinatal settings has become increasingly common, although ambiguity exists in the application of traditional hospice or palliative end-of-life care models in this setting. Accordingly, the aims of the proposed study are to: (a) explore the continuation of pregnancy after diagnosis of a severe fetal defect as a new form of perinatal loss and (b) describe the implementation of an end-of-life care model in one perinatal setting addressing this form of loss. The UNC at Chapel Hill School of Medicine's Center for Maternal and Infant Health (the Center) provides perinatal end-of-life care under the rubric of perinatal palliative care, recently changed from perinatal hospice; providers continue to develop this model of care to address the complexities involved in the care of women who continue pregnancy with a fetus likely to die in utero or soon after birth. Twelve women will be recruited from the Center for this longitudinal ethnography. In addition, their intimate partners will be recruited, as will health care providers involved with the women's care. Pregnant women and partners will be interviewed 4 times over a one-year period, beginning soon after the diagnosis is made. Providers, who will be interviewed at least once, will include those most directly associated with the woman's care, including but not limited to her primary obstetric care provider and labor and delivery nurse. Participant observations of a weekly clinical conference in which diagnoses and prognoses are determined will be made over 26 consecutive weeks. Two questionnaires will be administered at each contact with women and their partners, the Clinical Epidemiologic Scale for Depression and the State-Trait Anxiety Scale (state version); the Perinatal Grief Scale will be administered at each contact after delivery. Additional data will be collected from medical records, documents and artifacts of pregnancy and delivery. The extension of end-of-life care into the perinatal period is new and has not been studied extensively. This research will address the conceptual foundations for end-of-life care in the perinatal setting, when pregnant women, their partners and their health care providers face immense challenges when the expectation of a healthy infant is replaced with the prospect of fetal or neonatal death. PUBLIC HEALTH RELEVANCE: With increasingly routine use of prenatal testing, more couples face the devastating consequences of learning of a severe (lethal or life-limiting) fetal defect. End-of-life care is increasingly available for these couples who continue the pregnancy despite the severe diagnosis; however little is known yet about the extension of traditional end-of-life care models into the perinatal period. It is imperative that end-of-life care models appropriate to the perinatal setting be developed in response to couples' complex needs when pregnancy will likely end in fetal or neonatal death.

描述（由申请人提供）：严重（致命或限制生命）胎儿缺陷的诊断使孕妇、其伴侣及其医疗保健提供者面临生命开始时生命结束的毁灭性悖论。越来越多的常规使用产前检测增加了被诊断出患有严重胎儿缺陷的孕妇人数。已知可能导致胎儿或新生儿死亡的继续妊娠在围产期环境中提出了挑战。卫生保健提供者已经认识到根据这些妇女及其伴侣的具体需要提供专门护理的重要性，因此，围产期环境中的临终护理越来越普遍，尽管在这种环境中应用传统临终关怀或姑息性临终护理模式存在模糊性。因此，拟议研究的目的是：（a）探讨诊断为严重胎儿缺陷后继续妊娠作为一种新形式的围产期损失和（B）描述一个解决这种形式的损失的围产期环境中实施的临终关怀模式。查佩尔山医学院的母婴健康中心（中心）提供围产期临终关怀的围产期姑息治疗的标题下，最近从围产期临终关怀改变;供应商继续开发这种模式的护理，以解决复杂的妇女谁继续怀孕与胎儿可能死在子宫内或出生后不久的护理。将从该中心招募12名妇女进行纵向民族志研究。此外，还将招募她们的亲密伴侣以及参与妇女护理的保健提供者。孕妇和伴侣将在一年内接受4次面谈，从诊断后不久开始。提供者将至少接受一次采访，包括与妇女护理最直接相关的人，包括但不限于她的主要产科护理提供者和分娩护士。参与者将在连续26周内观察每周一次的临床会议，在会议上确定诊断和预后。每次与妇女及其伴侣接触时，将进行两次问卷调查，即抑郁症临床流行病学量表和状态-特质焦虑量表（状态版）;分娩后每次接触时将进行围产期悲伤量表。将从医疗记录、文件和妊娠和分娩的人工制品中收集其他数据。将临终关怀延伸到围产期是一个新的做法，尚未得到广泛研究。这项研究将探讨围产期临终关怀的概念基础，当对健康婴儿的期望被胎儿或新生儿死亡的前景所取代时，孕妇、其伴侣及其保健提供者面临巨大挑战。 公共卫生关系：随着越来越多的常规使用产前检查，更多的夫妇面临着严重的（致命的或限制生命的）胎儿缺陷的学习的毁灭性后果。尽管诊断严重，但继续怀孕的夫妇越来越多地获得临终关怀;然而，人们对传统的临终关怀模式延伸到围产期知之甚少。必须制定适合围产期环境的临终护理模式，以满足夫妇在怀孕可能导致胎儿或新生儿死亡时的复杂需求。