Paediatric Palliative Care Service, Oncology Services Group (A.G., L.D., A.H.), Children's Health Queensland Hospital and Health Service, South Brisbane, Australia; School of Nursing (N.E., N.B.), Queensland University of Technology, Kelvin Grove, Australia; Cancer and Palliative Care Outcomes Centre at Centre for Children's Health Research (A.H., N.B.), Queensland University of Technology, South Brisbane, Australia.
Paediatric Palliative Care Service, Oncology Services Group (A.G., L.D., A.H.), Children's Health Queensland Hospital and Health Service, South Brisbane, Australia; School of Nursing (N.E., N.B.), Queensland University of Technology, Kelvin Grove, Australia; Cancer and Palliative Care Outcomes Centre at Centre for Children's Health Research (A.H., N.B.), Queensland University of Technology, South Brisbane, Australia.
J Pain Symptom Manage. 2023 May;65(5):388-399.e9. doi: 10.1016/j.jpainsymman.2023.02.002. Epub 2023 Feb 10.
Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss.
To evaluate a Bereavement Support Program from the perspectives of both families and service providers.
A cross-sectional study design explored the experiences and perspectives of the benefits of various program components. Respondents were asked about accessing program components, their expectations, and parents were asked to rate the impact of program components on their grief on a scale from one, (no impact) to 100 (positive impact). Space for free text was provided throughout for additional feedback.
SETTING/ PARTICIPANTS: The survey was distributed through mailing lists of parents known to the service, referring service providers, and advertised in the program newsletter.
One hundred two respondents completed the survey and provided detailed comments about their experiences. Most interactions and program components were reported helpful by both parents and service providers. Parents (N = 60) reported a positive impact on grief across all program components (median impact on grief range 81-98, Interquartile range 68.5-99). There were, however, a considerable number of respondents who were unaware of some components.
Bereavement care to navigate the devastating loss of a child is of paramount importance and can offer significant and beneficial resources for families. Findings have supported service development in a major tertiary paediatric hospital facilitating improved access for families, particularly for those in regional and rural locations.
丧亲是一种个体化、微妙的体验，每个照顾临终儿童的父母的表达方式都不同。有证据表明，提供支持对于应对这种丧失是有价值的。
从家庭和服务提供者的角度评估丧亲支持计划。
采用横断面研究设计，探讨了各种计划组成部分的经验和益处。要求受访者了解获取计划组成部分的途径、他们的期望，并要求父母对计划组成部分对他们悲伤的影响进行评分，分值范围为 1（无影响）到 100（积极影响）。为了提供更多的反馈，在整个过程中都提供了自由文本的空间。
地点/参与者：该调查通过服务机构、转介服务提供者已知的家长邮件列表以及在该计划通讯中发布进行分发。
共有 102 名受访者完成了调查，并详细说明了他们的经验。大多数家长和服务提供者都报告说，大多数互动和计划组成部分都有帮助。家长（n=60）报告称，所有计划组成部分对悲伤都有积极影响（悲伤影响中位数范围为 81-98，四分位距为 68.5-99）。然而，有相当数量的受访者不知道某些组成部分。
为应对儿童毁灭性的丧失而提供的丧亲关怀至关重要，可以为家庭提供重要和有益的资源。研究结果支持了一家主要的三级儿科医院的服务发展，为家庭提供了更好的获取途径，特别是为那些位于地区和农村地区的家庭。
