St. Jude Children's Research Hospital, Memphis, TN , USA.
St. Jude Children's Research Hospital, Memphis, TN , USA.
J Pain Symptom Manage. 2022 Jun;63(6):1022-1030.e3. doi: 10.1016/j.jpainsymman.2022.02.003. Epub 2022 Feb 11.
Many pediatric hospitals offer legacy interventions for families to promote coping and support grief prior to and following the death of a child. Despite this practice, parent perceptions of the value of legacy activities are not well described, and best practices for offering and creating legacy interventions remain poorly understood.
To characterize bereaved parents' perspectives on the value of legacy activities; to describe parent recommendations for optimizing provision of legacy activities by child life specialists and music therapists.
In this qualitative study, a purposive sample of 19 bereaved parents of children who died from cancer participated in semi-structured interviews. Interviews were audio-recorded, transcribed, and analyzed inductively using content analysis to identify key concepts and emerging themes.
Analysis of transcripts revealed bereaved parent insights and recommendations across three core themes: 1) the value of legacy items and interventions; 2) the practical roles, uses, and functions of legacy items, and 3) best practices for offering legacy interventions. Bereaved parents sought meaning and purpose in abstract and concrete manifestations of legacy. Parents often used legacy items in specific ways to promote emotional expression and process their grief. Communication, timing, and creativity significantly influenced parent perceptions of legacy-building. Parents recommended individualized assessments to optimize provision of legacy interventions.
Bereaved parents emphasized the meaningfulness of legacy-building activities and the need for an individualized approach when offering these interventions. Future research should explore the perspectives and recommendations of patients and siblings on legacy activities.
许多儿童医院为家庭提供传统干预措施，以在儿童死亡前后促进应对和支持悲伤。尽管有这种做法，但家长对传统活动价值的看法并没有得到很好的描述，提供和创建传统干预措施的最佳实践仍然知之甚少。
描述丧亲父母对传统活动价值的看法；描述家长对儿童生活专家和音乐治疗师提供传统活动的建议。
在这项定性研究中，我们对 19 名丧亲父母进行了有目的的抽样调查，这些父母的孩子因癌症去世。参与者接受了半结构化访谈。访谈进行了录音、转录，并使用内容分析进行了归纳分析，以确定关键概念和新兴主题。
对转录本的分析揭示了丧亲父母在三个核心主题方面的见解和建议：1）传统项目和干预措施的价值；2）传统项目的实际角色、用途和功能；3）提供传统干预措施的最佳实践。丧亲父母在传统的抽象和具体表现中寻求意义和目的。父母经常以特定的方式使用传统物品来促进情感表达和处理悲伤。沟通、时间安排和创造力极大地影响了家长对传统建设的看法。父母建议进行个性化评估，以优化传统干预措施的提供。
丧亲父母强调了传统建设活动的意义，并在提供这些干预措施时需要采取个性化的方法。未来的研究应该探讨患者和兄弟姐妹对传统活动的看法和建议。
