Death in the PICU/NICU: Parent and Family Functioning

PICU/NICU 中的死亡：父母和家庭的运作

• 批准号: 7883477
• 负责人: JoAnne M Youngblut
• 金额: $ 45.6万
• 依托单位: FLORIDA INTERNATIONAL UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2006
• 资助国家: 美国
• 起止时间: 2006-09-05 至 2012-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7883477
• 关键词: 18 year old; Acculturation; Affect; Age; Anger; Area; Autopsy; Birth; Brain Death; Cessation of life; Characteristics; Child; Child Abuse; Childhood; Data; Development; Dreams; Early treatment; Emotions; Ethnic Origin; Ethnic group; Event; Exclusion Criteria; Family; Fathers; Feeling; Friends; Future; Grief reaction; Growth; Guilt; Health; Health Professional; Hispanics; Home environment; Hospitals; Hour; Individual; Infant; Injury; Intensive Care Units; Intervention Studies; Interview; Latino; Life; Linear Models; Longitudinal Studies; Medical; Mental Depression; Mental Health; Methods; Modeling; Mothers; Nature; Neonatal; Not Hispanic or Latino; Organ; Outcome; Parents; Patients; Pediatric Hospitals; Population; Post-Traumatic Stress Disorders; Race; Reaction; Recovery; Recruitment Activity; Reporting; Research; Research Personnel; Resources; Risk; Sampling; Social support; Theoretical model; Thinking; Time; Voice; Withdrawal; Withdrawing Treatments; base; experience; inclusion criteria; infant death; neonate; parental influence; prevent; psychologic; racial and ethnic; response

DESCRIPTION (provided by applicant): Whether sudden or anticipated, whether parents participate in the decision to withhold or withdraw treatment, death of an infant/child is a traumatic event for parents. All hopes and dreams for the child's future are gone forever. Parents may feel that a part of them has died. Most of the more than 23,000 infant and child deaths in US hospitals in 2000 occurred in a neonatal (NICU) or pediatric (PICU) intensive care unit. The purpose of this study is to describe the experience of parents whose infant/child died in the NICU/PICU and the impact of the death on parent grief, mental health, personal growth, and family functioning during the first year after the death. Families whose infant/child dies in the NICU (n=75) or PICU (n=75) and who understand spoken English or Spanish will be recruited. Other inclusion criteria for families from the NICU are: singleton birth, neonate lived for >4 hours. Other inclusion criteria for families from the PICU are: patient in the PICU for >4 hours, deceased child 18 years old or younger. Exclusion criteria are: injury suspected to be due to child abuse, parent(s) hospitalized concurrently or death of a parent in the illness/injury event. Quantitative data will be collected in the family's home at 1, 3, 6, and 13 months after the death and through review of the infant's/ child's hospital chart. Quantitative data will include age of the infant/child at death, mode of death, parent anticipation of the death, race/ethnicity & acculturation, partner status, presence of surviving children, parent religiosity, social support, parent grief response, parent mental health (depression and post-traumatic stress disorder), parent personal growth, and family functioning (mother-father couple relationship, parent-surviving children] relationship, functioning of the family unit). Qualitative interviews will be conducted at 7 and 13 months after the infant's/child's death with a subset of 30-40 parents chosen to represent a broad picture of the families in the study. ANOVA, multiple regression, and hierarchical linear modeling will be used to explore the effects of characteristics surrounding the infant's/child's death, parent/family factors and social support on parent and family outcomes at each time point and over time. Content analysis of the qualitative data will be used to corroborate and expand the study's conceptual framework. Research in this area is crucial so that health care professionals can identify parents and families at risk for poor outcomes and target them for early intervention to prevent or minimize undesirable effects.

描述(由申请人提供)：无论是突然的还是预期的，无论父母是否参与拒绝或撤回治疗的决定，婴儿/儿童的死亡对父母来说都是一件痛苦的事情。对孩子未来的所有希望和梦想都一去不复返了。父母可能会觉得他们中的一部分已经死了。2000年，美国医院超过23,000名婴儿和儿童死亡，其中大部分发生在新生儿(NICU)或儿科(PICU)重症监护病房。本研究的目的是描述NICU/PICU中婴儿/孩子死亡的父母的经历，以及死亡后第一年对父母悲伤、心理健康、个人成长和家庭功能的影响。婴儿/儿童在NICU(n=75)或PICU(n=75)死亡且懂英语或西班牙语的家庭将被招募。来自NICU的家庭的其他纳入标准是：单胎出生，新生儿存活4小时。来自PICU的家庭的其他纳入标准是：患者在PICU&gt；4小时，死亡的孩子18岁或以下。排除标准为：疑似受伤 因虐待儿童、父母(S)同时住院或父母在疾病/伤害事件中死亡。 定量数据将在死亡后1、3、6和13个月在家庭中收集，并通过审查婴儿/儿童的住院表进行收集。量化数据将包括婴儿/儿童的死亡年龄、死亡方式、父母对死亡的预期、种族/族裔和文化适应、伴侣状况、是否有尚存的子女、父母的宗教信仰、社会支持、父母的悲痛反应、父母的精神健康(抑郁症和创伤后应激障碍)、父母的个人成长和家庭功能(父母与父亲的夫妻关系、父母与尚存子女的关系、家庭单元的功能)。定性访谈将在婴儿/儿童死亡后7个月和13个月进行，选择30-40名父母代表研究中家庭的大致情况。本研究将使用方差分析、多元回归和分层线性模型来探索婴儿/孩子死亡的特征、父母/家庭因素和社会支持在每个时间点和时间上对父母和家庭结果的影响。定性数据的内容分析将用于证实和扩展研究的概念框架。这一领域的研究至关重要，以便卫生保健专业人员能够识别有不良结局风险的父母和家庭，并针对他们进行早期干预，以防止或尽量减少不良影响。

项目成果

Parent and child perceptions of the child's health at 2, 4, 6, and 13 months after sibling intensive care or emergency department death.

同胞重症监护或急诊科死亡后2、4、6和13个月，父母和孩子对孩子健康的看法。

• DOI: 10.1097/jxx.0000000000000429
• 发表时间: 2020-05-21
• 期刊: Journal of the American Association of Nurse Practitioners
• 影响因子: 1.2
• 作者: Roche R;Youngblut JM;Brooten DA
• 通讯作者: Brooten DA

Practices following the death of a loved one reported by adults from 14 countries or cultural/ethnic group.

• DOI: 10.1002/nop2.646
• 发表时间: 2021-01
• 期刊: Nursing open
• 影响因子: 2.3
• 作者: Hidalgo I;Brooten D;Youngblut JM;Roche R;Li J;Hinds AM
• 通讯作者: Hinds AM

Parent Grief 1-13 Months After Death in Neonatal and Pediatric Intensive Care Units.

• DOI: 10.1080/15325024.2016.1187049
• 发表时间: 2017
• 期刊: Journal of loss & trauma
• 影响因子: 4.7
• 作者: Youngblut JM;Brooten D;Glaze J;Promise T;Yoo C
• 通讯作者: Yoo C

Perinatal and pediatric issues in palliative and end-of-life care from the 2011 Summit on the Science of Compassion.

2011 年同情科学峰会上的姑息治疗和临终关怀中的围产期和儿科问题。

• DOI: 10.1016/j.outlook.2012.08.007
• 发表时间: 2012
• 期刊: Nursing outlook
• 影响因子: 4.3
• 作者: Youngblut,JonneM;Brooten,Dorothy
• 通讯作者: Brooten,Dorothy

Parent health and functioning 13 months after infant or child NICU/PICU death.

婴儿或儿童 NICU/PICU 死亡后 13 个月内父母的健康和功能。

• DOI: 10.1542/peds.2013-1194
• 发表时间: 2013
• 期刊: Pediatrics
• 影响因子: 8
• 作者: Youngblut,JoanneM;Brooten,Dorothy;Cantwell,GPatricia;delMoral,Teresa;Totapally,Balagangadhar
• 通讯作者: Totapally,Balagangadhar