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: 7473203
• 负责人: JoAnne M Youngblut
• 金额: $ 40.63万
• 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 2011-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7473203
• 关键词: 18 year old; Acculturation; Affect; Age; Analysis of Variance; Anger; Area; Autopsy; Birth; Brain Death; Cessation of life; Characteristics; Child; Child Abuse; Childhood; Data; Disease regression; Dreams; Early Intervention; 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; Interview; Latino; Life; Linear Models; Longitudinal Studies; Medical; Mental Depression; Mental Health; Methods; Modeling; Mothers; Nature; Neonatal; Neuro-Oncological Ventral Antigen 2; Not Hispanic or Latino; Numbers; Organ; Outcome; Parents; Patients; Pediatric Hospitals; Population; Post-Traumatic Stress Disorders; Purpose; Race; Rate; 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; neonate; parental influence; prevent; psychologic; racial and ethnic; response; therapy development

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，无论父母是否参与决定暂停或撤销治疗，婴儿/儿童的死亡对父母来说都是一个创伤性事件。对孩子未来的所有希望和梦想都永远消失了。父母可能会觉得他们的一部分已经死了。2000年，美国医院中超过23，000例婴儿和儿童死亡中的大多数发生在新生儿（NICU）或儿科（PICU）重症监护室。本研究的目的是描述父母的婴儿/儿童在新生儿重症监护室/儿科重症监护室死亡的经验和死亡对父母的悲伤，心理健康，个人成长和家庭功能在死亡后的第一年的影响。将招募婴儿/儿童在NICU（n=75）或PICU（n=75）死亡且懂英语或西班牙语口语的家庭。来自NICU的家庭的其他入选标准是：单胎出生，新生儿存活>4小时。来自PICU的家庭的其他入选标准是：患者在PICU中>4小时，死亡儿童18岁或以下。排除标准为：疑似 由于虐待儿童、父母同时住院或父母一方在疾病/伤害事件中死亡。 将在死亡后1、3、6和13个月在家庭家中收集定量数据，并通过审查婴儿/儿童的医院病历。定量数据将包括婴儿/儿童死亡时的年龄、死亡方式、父母对死亡的预期、种族/民族和文化适应、伴侣状况、幸存儿童的存在、父母的宗教信仰、社会支持、父母的悲伤反应、父母的心理健康（抑郁症和创伤后应激障碍），父母个人成长和家庭功能（母亲-父亲夫妇关系、父母-幸存子女]关系、家庭单位的运作）。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名父母作为研究中家庭的一个子集。将使用ANOVA、多元回归和分层线性模型来探索婴儿/儿童死亡、父母/家庭因素和社会支持的特征对每个时间点和随时间推移的父母和家庭结局的影响。定性数据的内容分析将用于证实和扩大研究的概念框架。这一领域的研究至关重要，这样卫生保健专业人员就可以识别出有不良后果风险的父母和家庭，并针对他们进行早期干预，以防止或尽量减少不良影响。