J Obstet Gynecol Neonatal Nurs. 2021 Jul;50(4):402-411. doi: 10.1016/j.jogn.2021.02.009. Epub 2021 Mar 26.
To explore the experiences of women who received life-limiting fetal diagnoses during pregnancy and support from a perinatal palliative care program.
Descriptive qualitative.
The perinatal palliative care program is part of a not-for-profit system of 24 hospitals serving the U.S. Intermountain West region.
A convenience sample of 12 women who experienced pregnancies with life-limiting fetal diagnoses and received care from a perinatal palliative care program.
Women chose to participate from mailed invitations or responded to a post on private social media and then completed semistructured interviews about their experiences surrounding the fetal diagnoses and support from a perinatal palliative care program. Interviews were approximately 40 minutes in length and were conducted over the phone, recorded, and then transcribed. We performed content analysis by coding, forming categories of similar coded data, and constructing themes by recontextualizing categories through iterative, team-based meetings.
We identified four themes from the data: Importance of Memorabilia to Cope With the Death and Documentation of Pregnancy, Acceptance of Death as Part of the Pregnancy Experience, Continued Life Without a Child, and Importance of Empathy Throughout the Process.
The themes support the existing research findings about the needs of pregnant women as they cope with difficult situations. Our findings show the necessity and importance of perinatal palliative care programs.
探索在妊娠期间接受生命限制胎儿诊断并获得围产期姑息治疗计划支持的女性的体验。
描述性定性研究。
围产期姑息治疗计划是为美国山间西部地区 24 家非营利性医院系统服务的一部分。
选择参加的便利样本是 12 名经历过生命限制胎儿诊断并接受围产期姑息治疗计划护理的女性。
女性通过邮寄邀请或回复私人社交媒体上的帖子选择参加，然后完成有关围绕胎儿诊断和围产期姑息治疗计划支持的半结构化访谈。访谈时长约 40 分钟，通过电话进行，录音后转录。我们通过编码进行内容分析，形成相似编码数据的类别，并通过迭代、团队会议重新构建类别来构建主题。
我们从数据中确定了四个主题：纪念品对应对死亡和妊娠记录的重要性、接受死亡是妊娠经历的一部分、继续没有孩子的生活、以及整个过程中同理心的重要性。
这些主题支持了现有关于孕妇应对困难情况的需求的研究结果。我们的研究结果表明围产期姑息治疗计划的必要性和重要性。
