Department of Pediatrics, University of California San Francisco.
The Eli and Edythe Broad Center of Regeneration Medicine and Stem Cell Research, University of California San Francisco.
JAMA Netw Open. 2023 Nov 1;6(11):e2341533. doi: 10.1001/jamanetworkopen.2023.41533.
Parents who experience neonatal loss have the option to participate in autopsy, organ donation, and research donation. However, clinicians are uncomfortable discussing autopsy and may not be aware of research and organ donation opportunities.
To capture the perspectives of parents who had experienced neonatal loss about autopsy, organ donation, and research donation.
DESIGN, SETTING, AND PARTICIPANTS: This qualitative study used virtual focus groups with parents who attended a local bereavement support group in the US. Participants were recruited from Helping After Neonatal Death, a support group with a local chapter. Participants self-selected from an email request if they met the following criteria: aged 18 years or older, English speaking, at least 6 months elapsed since neonatal death, and access to a video conference device with internet. Focus groups took place between April and September 2021. The recorded sessions were analyzed using a grounded theory-informed approach by the research team that included parents with experience of neonatal loss. Data were analyzed from December 2021 through December 2022.
A total of 14 mothers engaged in the focus group; 9 (75%) were aged 30 to 39 years, and 8 (66%) were White. The mothers were overall well educated. The first main theme grew from the lived experience of neonatal loss, specifically the importance of offering all parents the option to donate, rather than prejudging who would or would not be interested. Parents of neonates who die have few opportunities to parent that child and make loving decisions for them. Participants emphasized that the conversation about autopsy, organ donation, and research donation, albeit difficult, can offer a meaningful parenting experience. A second main theme that emerged related to how organ or tissue donation could provide additional meaning to a child's life. These choices contributed to building a legacy to honor their child's memory, which also helped with grief and coping with their loss. A third theme included recommendations to clinicians and health systems for improving communication, including written information for parents and communication training for health care professionals.
In this qualitative study, parents who experienced neonatal loss endorsed the importance of offering parents the choice of autopsy, organ donation, or research donation with skillful and empathetic communication. They provided practical recommendations to improve communication and empower families.
经历新生儿死亡的父母可以选择进行尸检、器官捐献和研究捐赠。然而，临床医生在讨论尸检时感到不舒服，并且可能不知道有研究和器官捐献的机会。
了解经历过新生儿死亡的父母对尸检、器官捐献和研究捐赠的看法。
设计、地点和参与者：这是一项在美国当地丧亲支持小组进行的定性研究，使用虚拟焦点小组。参与者是从美国的一个当地分支机构“帮助新生儿死亡”支持小组中招募的。如果符合以下标准，参与者可以通过电子邮件请求自行选择参加：年龄在 18 岁或以上，会说英语，自新生儿死亡以来至少 6 个月，并且可以使用带有互联网的视频会议设备。焦点小组于 2021 年 4 月至 9 月期间进行。研究团队（包括有新生儿死亡经历的父母）使用扎根理论方法对记录的会议进行了分析。数据于 2021 年 12 月至 2022 年 12 月进行分析。
共有 14 位母亲参加了焦点小组；9 位（75%）年龄在 30 至 39 岁之间，8 位（66%）是白人。母亲们的教育程度普遍较高。第一个主要主题源于新生儿死亡的实际经历，特别是向所有父母提供捐赠选择的重要性，而不是预先判断谁会或不会有兴趣。新生儿死亡的父母很少有机会养育孩子并为他们做出充满爱意的决定。参与者强调，尸检、器官捐献和研究捐献的对话虽然困难，但可以提供有意义的育儿体验。出现的第二个主要主题与器官或组织捐献如何为孩子的生命提供额外意义有关。这些选择有助于建立一个纪念他们孩子记忆的遗产，这也有助于缓解悲痛和应对他们的损失。第三个主题包括向临床医生和医疗保健系统提出的关于改进沟通的建议，包括为父母提供书面信息和为医疗保健专业人员提供沟通培训。
在这项定性研究中，经历过新生儿死亡的父母支持提供尸检、器官捐献或研究捐赠选择的重要性，并以熟练和富有同情心的沟通方式进行。他们提供了改善沟通和赋予家庭权力的实际建议。
