Parent Experiences of Continuing Pregnancy with Lethal Fetal Diagnosis

父母在致命胎儿诊断下继续妊娠的经历

• 批准号: 8240328
• 负责人: DENISE YVONNE COTE-ARSENAULT
• 金额: $ 22.82万
• 依托单位: UNIVERSITY OF NORTH CAROLINA GREENSBORO
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-05-01 至 2014-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8240328
• 关键词: Address; Birth; Caring; Cessation of life; Complex; Couples; Data; Data Collection; Development; Developmental Process; Diagnosis; Distress; Eating; Emotional; Emotional Bonds; Environment; European; Family; Fathers; Fetal Movement; Fetus; Friends; Future; Goals; Grief reaction; Health Personnel; Health Services; Healthcare; Individual; Infant; Intervention; Interview; Joints; Kidney; Knowledge; Learning; Left; Life; Literature; Medical; Modeling; Mothers; New York; Palliative Care; Parents; Patau' s syndrome; Perinatal; Perinatal Care; Persons; Pregnancy; Prenatal care; Preparation; Process; Prospective Studies; Provider; Reaction; Recruitment Activity; Reporting; Resources; Rest; Safety; Services; Sex Characteristics; Sleep; Spouses; Staging; Structure; Testing; Time; Woman; abortion; base; design; evidence base; expectation; experience; fetal diagnosis; infant death; innovation; insight; meetings; news; postnatal; pregnant; prenatal; prenatal testing; programs; prospective; psychologic; psychosocial; response; unborn child; urban area

DESCRIPTION (provided by applicant): Expectant parents are devastated and unprepared when they learn that their fetus has a condition that is incompatible with extrauterine life (such as trisomy 13, 18, or renal agenesis). Parents who choose to continue with the pregnancy turn to health care providers for guidance and expertise regarding treatment options and to help them deal with their distress but this support is often not available. Approximately 2% of all pregnancies are complicated by lethal fetal diagnoses (LFD) that leave parents and care providers with multiple, complex needs and options to address but with few evidence-based resources and supports. Emotional and physical distress, and intense grief are common reactions of the estimated 125,000 mothers per year in the US receiving these diagnoses. More needs to be known about parents' experiences, needs, and responses in order to inform the development of responsive health care services, such as perinatal palliative care. No US prospective studies on continuing pregnancy with LFD are reported in literature. The purpose of this naturalistic, contemporaneous study is to describe parents' experiences of continuing pregnancy with a known lethal fetal diagnosis (LFD), and to examine the parents' needs and responses to health care provider interactions across the perinatal period (prenatal, intrapartal, and postnatal. Using interview data collected from 16 mothers and fathers (or support persons) over four sequential interviews, the specific aims are: (1) To describe the on-going perinatal experiences of mothers and fathers (or support persons) after they receive a lethal fetal diagnosis and decide to continue the pregnancy. (2) To examine parents' needs from and responses to interactions with health care providers regarding pregnancy with a LFD, across the perinatal period and (3) To identify the revised developmental tasks of pregnancy undertaken by mothers and fathers in continuing pregnancy with a lethal fetal diagnosis across the perinatal period. This naturalistic study is grounded in the understanding that pregnancy is a developmental process with inherent predictable psychological tasks, but recognizing that the crisis of knowing baby's condition logically alters the psychological tasks of pregnancy in unknown ways. This study's innovation lies in its unique aims, timeliness, contemporaneous design, developmental perspective, and inclusion of both parents. Sixteen women and their spouse/partner/support person will be recruited from one of two regional perinatal centers in central New York, who meet the following: are 18 years or older, fetus with lethal diagnosis, 18 to 28 weeks gestation, and English-speaking. Data will be gathered through 4 semi-structured interviews across 6-8 months. Results will be a description of key themes of parental experience (including gender difference) over time, across pregnancy and post birth, psychological tasks for parents, and parental needs and responses to health care providers across the perinatal period. The long term goal of the study proposed here is to test a model of perinatal care, informed by these findings, that supports and addresses these parents' needs. PUBLIC HEALTH RELEVANCE: It is estimated that over 125,000 couples each year learn through prenatal testing that their unborn child has a fatal diagnosis, and they choose to continue their pregnancy. Having a diagnosis without accompanying understanding and support from health care providers is due, in part, to lack of knowledge. In this study parents will tell their stories of continuing pregnancy, birth, and infant death. It is hoped that best care will be developed from what is learned, so that future parents will receive support and information, so they can grieve and optimize their short time with their baby.

描述(由申请人提供)：当怀孕的父母得知他们的胎儿患有与宫外生活不相容的疾病(如13-三体、18-三体或肾脏发育不全)时，他们感到悲痛欲绝，毫无准备。选择继续怀孕的父母向保健提供者寻求关于治疗选择的指导和专门知识，并帮助他们处理其痛苦，但这种支持往往得不到。大约2%的妊娠合并致命胎儿诊断(LFD)，这使得父母和护理人员有多种复杂的需求和选择要解决，但几乎没有基于证据的资源和支持。据估计，美国每年有12.5万名母亲接受这些诊断，情绪和身体上的痛苦以及强烈的悲痛是她们的常见反应。需要更多地了解父母的经历、需求和反应，以便为发展响应性卫生保健服务提供信息，例如围产期姑息护理。美国没有关于LFD继续妊娠的前瞻性研究的文献报道。这项自然主义的同期研究的目的是描述父母在已知致命胎儿诊断(LFD)的情况下继续怀孕的经历，并检查父母在围产期(产前、产中和产后)对卫生保健提供者互动的需求和反应。通过四次连续访谈从16位母亲和父亲(或支持人员)收集的访谈数据，具体目的是：(1)描述母亲和父亲(或支持人员)在接受致命的胎儿诊断并决定继续怀孕后正在进行的围产期经历。(2)审查父母在整个围产期对与保健提供者的互动的需求和反应，以及(3)确定在整个围产期被诊断为致命胎儿的母亲和父亲在继续怀孕期间所承担的经修订的怀孕发育任务。这项自然主义的研究基于这样一种理解，即怀孕是一个具有内在可预测心理任务的发育过程，但认识到了解婴儿状况的危机在逻辑上以未知的方式改变了怀孕的心理任务。本研究的创新之处在于其独特的目的性、时效性、时代性设计、发展视角以及父母双方的包容。16名妇女和她们的配偶/伴侣/支持人员将从纽约市中心的两个地区性围产期中心之一招募，他们符合以下条件：18岁或以上，被诊断为致命的胎儿，怀孕18至28周，会说英语。数据将通过4次半结构化访谈收集，历时6-8个月。结果将描述随时间推移的父母经历(包括性别差异)、孕期和产后的关键主题、父母的心理任务，以及围产期父母对保健提供者的需求和反应。这项研究提出的长期目标是测试一种围产期护理模式，根据这些发现，支持和满足这些父母的需求。 与公共卫生有关：据估计，每年有超过125,000对夫妇通过产前测试得知他们未出生的孩子被诊断出患有致命疾病，他们选择继续怀孕。在没有得到卫生保健提供者的理解和支持的情况下进行诊断，部分原因是缺乏知识。在这项研究中，父母将讲述他们继续怀孕、分娩和婴儿死亡的故事。希望从所学到的东西中发展出最好的关怀，让未来的父母得到支持和信息，这样他们就可以哀悼和优化他们与宝宝短暂的相处时间。