Pector Elizabeth A
Spectrum Family Medicine, SC, Naperville, IL, USA.
J Perinatol. 2004 Jan;24(1):4-10. doi: 10.1038/sj.jp.7211001.
This study assessed the experiences of bereaved parents of multiples with resuscitation and life-support discussions, the death process, and conversations with health-care professionals about death.
In all, 71 bereaved parents of multiples recruited from Internet support groups completed a narrative e-mail survey assessing many facets of bereavement. Numeric data were analyzed using simple quantitative analysis, with a grounded theory approach used for qualitative data.
Most decisions were collaborative, with occasional directive comments. Some decisions were made during crises. Occasionally, parents initiated life-support discussions. Multidisciplinary meetings occurred with 30%, but were desired by more parents. A total of 18% of parents encountered criticism of choices. Most parents attended resuscitation, and found meaning in holding their dying children. Many desire privacy, availability of symptom management, and family or clergy involvement. Photographs of multiples together are valued. Parents offered many suggestions for compassionate death notification, which most felt should occur in person if parents are not present for the death. Respondents valued clear, prompt discussion of the cause of death, and clinician availability for later review of clinical events or decisions.
Multiple-birth parents' choices resemble those of singleton parents at the end of an infant's life.
本研究评估了多胞胎死亡患儿父母在复苏和生命支持讨论、死亡过程以及与医护人员关于死亡的谈话方面的经历。
从互联网支持小组招募了71位多胞胎死亡患儿的父母，他们完成了一项叙述性电子邮件调查，评估丧亲之痛的多个方面。数值数据采用简单定量分析，定性数据采用扎根理论方法进行分析。
大多数决定是协作性的，偶尔有指导性意见。有些决定是在危机期间做出的。偶尔，父母会发起生命支持讨论。30%的患儿父母参加了多学科会议，但更多的父母希望召开此类会议。共有18%的父母遭遇对其选择的批评。大多数父母参加了复苏过程，并在怀抱濒死孩子的过程中找到了意义。许多父母希望有隐私、能进行症状管理以及家人或神职人员的参与。多胞胎的合影受到重视。父母们就富有同情心的死亡通知提出了许多建议，大多数人认为如果父母未在孩子死亡时在场，死亡通知应该亲自进行。受访者重视对死亡原因进行清晰、及时的讨论，以及临床医生在之后对临床事件或决定进行复查时随时可供咨询。
多胞胎父母在婴儿生命末期的选择与单胞胎父母的选择相似。
