Jones Maile T, Terala Ananya, Boles Jessika C
Child Life Department, Children's Hospital Colorado Colorado Springs, Colorado Springs, Colorado, USA.
Patient- and Family-Centered Care Department, Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville, Tennessee, USA.
J Palliat Med. 2025 Aug;28(8):1013-1019. doi: 10.1089/jpm.2024.0547. Epub 2025 Apr 7.
Every year, a significant number of parents/caregivers experience the loss of a child, many of whom have received palliative care services. The resultant consequences of grief on their physical and psychological well-being can be significant. Little is known about bereaved parents/caregivers experience with or perceptions about participating in bereavement-focused research. To explore bereaved parents' perceptions of participating in three research studies about their loss experiences and legacy perceptions. A retrospective secondary analysis was conducted using qualitative and archival data drawn from three prior studies. Participants included parents/caregivers of 44 children (ages from birth to 18 years) who died between 2000 and 2020 at a freestanding academic children's hospital in the United States. Transcripts from semi-structured interviews and documentation of email communications were analyzed using an inductive coding approach grounded in psychological phenomenology. Participant experiences of and motivations for participating in bereavement-related research were organized into two themes: 1) a means of extending the child's legacy and 2) an avenue for self-expression and gratitude. None of the participants across studies indicated any discomfort in, dissatisfaction with, or ill feelings toward bereavement research involvement. Bereaved parents/caregivers described their research participation in personally meaningful and altruistic ways and reported gratitude for their involvement in and the focus of the research. With careful attention to bereaved parent/caregiver participant needs and preferences, it is possible to produce impactful family-centered palliative care research that can improve anticipatory and bereavement service provision.
每年，大量父母/照料者经历丧子之痛，其中许多人接受过姑息治疗服务。悲痛对他们身心健康产生的后果可能很严重。对于丧亲父母/照料者参与以丧亲为重点的研究的经历或看法，我们知之甚少。为了探究丧亲父母对参与三项关于他们的丧子经历和遗产认知的研究的看法。我们使用从之前三项研究中提取的定性和档案数据进行了回顾性二次分析。参与者包括2000年至2020年期间在美国一家独立的学术儿童医院去世的44名儿童（年龄从出生到18岁）的父母/照料者。使用基于心理现象学的归纳编码方法分析了半结构化访谈的文字记录和电子邮件通信记录。参与者参与丧亲相关研究的经历和动机被归纳为两个主题：1）延续孩子遗产的一种方式；2）自我表达和感恩的一个途径。所有研究中的参与者均未表示对参与丧亲研究有任何不适、不满或恶感。丧亲父母/照料者以个人有意义且利他的方式描述了他们参与研究的情况，并对参与研究及其重点表示感激。通过仔细关注丧亲父母/照料者参与者的需求和偏好，有可能开展有影响力的以家庭为中心的姑息治疗研究，从而改善临终关怀和丧亲服务的提供。
