新加坡对患有慢性危及生命疾病的儿童的家长/照顾者实施叙事电子写作干预（NeW-I）的初步随机对照试验的可接受性和可行性。

Acceptability and feasibility of a pilot randomized controlled trial of Narrative e-Writing Intervention (NeW-I) for parent-caregivers of children with chronic life-threatening illnesses in Singapore.

机构信息

School of Social Sciences; School of Computer Science and Engineering; Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore.

Duke-NUS Medical School, Singapore, Singapore.

出版信息

BMC Palliat Care. 2022 Apr 29;21(1):59. doi: 10.1186/s12904-022-00945-0.

DOI:10.1186/s12904-022-00945-0

PMID:35488270

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9052453/

Abstract

BACKGROUND

Narrative e-Writing Intervention (NeW-I) is a novel psycho-socio-spiritual intervention which aims to bridge gaps in paediatric palliative care by providing anticipatory grief support to parent-caregivers who are looking after their child with a chronic life-threatening illness in Singapore. This is done via a therapist-facilitated smartphone app that focuses on strengths and meaning derived from parents' caregiving journey. NeW-I is empirically informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by anticipatory grief interventions literature for improving the holistic well-being for parent-caregivers of seriously ill children. NeW-I is implemented in Singapore as an open-label two-armed randomized controlled trial comprising an intervention and control group.

METHODS

This study examined the acceptability (via analysis of participants' post-intervention qualitative feedback and responses to a post-intervention evaluation survey) and feasibility (via records and memos of therapists' experience of delivering the intervention) of NeW-I among 26 intervention participants drawn from the larger trial.

RESULTS

Framework analysis of participants' post-intervention feedback revealed four themes, namely: (i) Meaningful opportunity for reflection, (ii) Congruity with parent-caregivers' needs, (iii) Compatibility of online narrative writing and (iv) Sustainability and enhancement recommendations. The post-intervention evaluation survey showed that participants were overall satisfied with their NeW-I experience with a large number of participants acknowledging that NeW-I had improved their spiritual well-being, hopefulness about the future and perception of social support that was available to them, as well as lessened their feelings of sadness and depression, caregiver burden and fear and anxiety about their child's illness. The research team found it feasible to deliver the intervention in the current setting.

CONCLUSION

NeW-I is an innovative e-health tool that could immeasurably value-add to paediatric palliative care services for Asian families in Singapore and around the world.

TRIAL REGISTRATION

ClinicalTrials.gov, ID: NCT03684382 , Verified: September 2018.

摘要

背景

叙事电子书写干预（NeW-I）是一种新颖的心理-社会-精神干预方法，旨在通过为新加坡照顾患有慢性危及生命疾病的儿童的父母提供预期悲伤支持，弥合儿科姑息治疗中的差距。这是通过一个由治疗师主导的智能手机应用程序实现的，该程序专注于父母照顾旅程中获得的力量和意义。NeW-I 是基于国际系统评价和新加坡基于父母丧亲经历的定性研究的实证信息，并得到预期悲伤干预文献的支持，以改善重病儿童的父母照顾者的整体健康。NeW-I 在新加坡作为一项开放标签的两臂随机对照试验实施，包括干预组和对照组。

方法

本研究通过对 26 名干预参与者的干预后定性反馈和对干预后评估调查的回应进行分析，评估了 NeW-I 的可接受性（通过分析参与者的干预后反馈），并通过治疗师提供干预的记录和备忘录评估了其可行性。

结果

对参与者干预后反馈的框架分析揭示了四个主题，即：（i）有意义的反思机会，（ii）符合父母照顾者的需求，（iii）在线叙事写作的兼容性，以及（iv）可持续性和增强建议。干预后评估调查显示，参与者总体上对他们的 NeW-I 体验感到满意，许多参与者承认 NeW-I 改善了他们的精神健康、对未来的希望以及对他们可用的社会支持的看法，同时减轻了他们的悲伤和沮丧感、照顾者负担以及对孩子疾病的恐惧和焦虑。研究团队发现，在当前环境下提供干预是可行的。