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: 8464806
• 负责人: DENISE YVONNE COTE-ARSENAULT
• 金额: $ 17.27万
• 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 2015-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8464806
• 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.

描述（由申请人提供）：当准父母得知他们的胎儿患有与子宫外生命不相容的疾病（如13、18三体或肾发育不全）时，他们感到震惊和措手不及。选择继续怀孕的父母向医疗保健提供者寻求有关治疗方案的指导和专业知识，并帮助他们应对困境，但这种支持往往得不到。大约有2%的怀孕是由致命的胎儿诊断（LFD）复杂，离开父母和护理提供者有多种，复杂的需求和选择，以解决，但很少有证据为基础的资源和支持。情绪和身体上的痛苦，以及强烈的悲伤是美国每年估计有125，000名母亲接受这些诊断的常见反应。需要更多地了解父母的经验，需求和反应，以便为制定响应性医疗保健服务，如围产期姑息治疗提供信息。文献中未报告关于LFD继续妊娠的美国前瞻性研究。这项自然主义的，同期研究的目的是描述父母的经验，继续怀孕与已知的致命胎儿诊断（LFD），并检查父母的需求和反应，医疗保健提供者的互动在围产期（产前，产时，和产后。本研究以16位母亲和父亲（或支持者）为研究对象，通过四次连续访谈收集资料，具体目的是：（1）描述母亲和父亲（或支持者）在接受致命胎儿诊断并决定继续妊娠后的围产期经历。(2)检查父母的需求和反应与医疗保健提供者的互动，关于妊娠与LFD，在整个围产期和（3）确定修订的发展任务的母亲和父亲在继续妊娠与致命的胎儿诊断在整个围产期。这项自然主义的研究是基于这样的理解，即怀孕是一个具有内在可预测的心理任务的发展过程，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，及时性，同期设计，发展的视角，并包括父母双方。将从纽约中部的两个区域围产期中心之一招募16名女性及其配偶/伴侣/支持人员，她们符合以下条件：18岁或以上，胎儿被诊断为致死，妊娠18至28周，讲英语。数据将通过6-8个月的4次半结构化访谈收集。结果将是随着时间的推移，在整个怀孕和出生后，父母的心理任务，父母的需求和反应，整个围产期的医疗保健提供者的父母的经验（包括性别差异）的关键主题的描述。本文提出的研究的长期目标是测试一种围产期护理模式，以这些发现为依据，支持和解决这些父母的需求。

项目成果

We want what's best for our baby: Prenatal Parenting of Babies with Lethal Conditions.

我们希望为我们的宝宝提供最好的：对患有致命疾病的婴儿进行产前养育。

• 发表时间: 2015
• 期刊: Journal of prenatal & perinatal psychology & health
• 作者: Côté-Arsenault,Denise;Krowchuk,Heidi;Hall,WendashaJenkins;Denney-Koelsch,Erin
• 通讯作者: Denney-Koelsch,Erin

Life-limiting fetal conditions and pregnancy continuation: parental decision-making processes.

限制生命的胎儿状况和妊娠继续：父母的决策过程。

• DOI: 10.1136/bmjspcare-2020-002857
• 发表时间: 2021
• 期刊: BMJ supportive & palliative care
• 影响因子: 2.7
• 作者: Denney-Koelsch,Erin;Cote-Arsenault,Denise
• 通讯作者: Cote-Arsenault,Denise