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: 7283678
• 负责人: JoAnne M Youngblut
• 金额: $ 42.18万
• 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/7283678
• 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停止或停止治疗，婴儿/儿童的死亡对父母来说都是一个创伤性事件。所有对孩子未来的希望和梦想都永远消失了。父母可能会觉得自己失去了一部分。2000年，美国医院23000多名婴儿和儿童死亡中，大多数发生在新生儿（NICU）或儿科（PICU）重症监护病房。本研究的目的是描述婴儿/儿童在NICU/PICU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。新生儿/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将被招募。新生儿重症监护室家庭的其他纳入标准为：单胎出生，新生儿生活时间为40 ~ 40小时。来自PICU的家庭的其他纳入标准是：患者在PICU中呆了40小时，死亡儿童年龄在18岁或以下。排除标准为：疑似受伤