Akard T F, Duffy M, Hord A, Randall A, Sanders A, Adelstein K, Anani U E, Gilmer M J
Vanderbilt University School of Nursing, Nashville, TN, USA.
Vanderbilt University, Nashville, TN, USA.
J Neonatal Perinatal Med. 2018;11(1):21-28. doi: 10.3233/NPM-181732.
Legacy-making, actions or behaviors aimed at being remembered, may be one strategy to enhance coping and improve grief outcomes for bereaved parents and siblings. While legacy interventions have been developed and tested in pediatric and adult populations, legacy activities specific to bereaved parents in the neonatal intensive care unit remain unexplored. This study explored bereaved parents' perceptions of a digital storytelling legacy-making intervention for parents after the death of an infant.
Six bereaved mothers and fathers participated in a focus group interview three to 12 months after the death of an infant in the NICU. A semi-structured interview guide with open-ended questions was used to obtain parent self-reports. Qualitative content analysis identified emerging themes.
Four major themes emerged regarding participants' perceptions of a legacy intervention: (a) parents' willingness to participate in a legacy intervention, (b) parents' suggestions for a feasible intervention, (c) parents' suggestions for an acceptable intervention, and (d) parents' perceived benefits of legacy-making.
Participants reported that a legacy-making intervention via digital storytelling would be feasible, acceptable, and beneficial for NICU parents. Study results support the need and desire for legacy-making services to be developed and offered in the NICU.
留下遗产，即旨在被铭记的行为或举动，可能是一种增强丧亲父母及兄弟姐妹应对能力并改善悲伤结局的策略。虽然遗产干预措施已在儿科和成人人群中得到开发和测试，但新生儿重症监护病房（NICU）中丧亲父母特有的遗产活动仍未得到探索。本研究探讨了丧亲父母对婴儿死亡后为父母开展的数字故事讲述遗产干预措施的看法。
六对丧亲父母在其婴儿于新生儿重症监护病房死亡后三至十二个月参加了焦点小组访谈。使用带有开放式问题的半结构化访谈指南来获取父母的自我报告。定性内容分析确定了新出现的主题。
关于参与者对遗产干预措施的看法出现了四个主要主题：（a）父母参与遗产干预措施的意愿，（b）父母对可行干预措施的建议，（c）父母对可接受干预措施的建议，以及（d）父母对留下遗产的感知益处。
参与者报告说，通过数字故事讲述进行的遗产干预措施对新生儿重症监护病房的父母来说将是可行的、可接受的且有益的。研究结果支持在新生儿重症监护病房开发并提供遗产服务的必要性和需求。
