PICU中严重神经损伤儿童的临床医生和家长的照片叙述干预方案

IF 1.4 Q4 MEDICINE, RESEARCH & EXPERIMENTAL

Contemporary Clinical Trials Communications Pub Date : 2025-02-11 DOI:10.1016/j.conctc.2025.101455

Jori Bogetz , Elsa Ayala , Jordan Anderson , Liz Morris , Krysta S. Barton , Miranda C. Bradford , Chuan Zhou , Joyce Yi-Frazier , R. Scott Watson , Abby R. Rosenberg

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引用次数: 0

摘要

背景：患有严重神经损伤（SNI）的儿童有中枢神经系统疾病，导致医疗复杂性和终身护理援助。SNI患儿入住儿科重症监护室（PICU）时，其父母/家庭可能会因与临床医生沟通不良而承受更大的压力。为了解决这个问题，我们创建了一个旨在促进家长与临床医生沟通的照片叙事干预。干预要求父母/家庭分享3张照片，并附上说明文字，告知临床医生他们孩子的健康和生活质量。步骤包括：1)学习摄影叙事；2)决定故事；3)选择照片；4)识别更广泛的背景。临床医生会收到一份关于如何使用照片叙事的指南。在本试点随机对照试验中，N = 40名SNI患儿的家长/家庭照顾者及其PICU临床医生将被随机分为两组，分别接受照片叙事干预或常规护理。参与者将在入组和儿童PICU出院时完成研究调查；干预组的参与者也将在出院时完成半结构化访谈。主要目的是描述：1)可行性，通过招募（接近/登记）和完成（干预完成/干预组）率进行评估；2)可接受性（推荐干预/干预组）。我们还将通过比较父母自我报告的压力变化、治疗联盟的感知、对耻辱、恢复力、利益发现和尊重的影响以及临床医生自我报告的同理心和换位思考来评估概念的证明。本研究将评估一种新的照片叙事干预的可行性和可接受性，该干预旨在改善照顾者的压力和沟通。研究结果将指导未来多地点研究的发展。临床试验注册编号：nct06208332。

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A photo-narrative intervention protocol for clinicians and parents of children with severe neurological impairment in the PICU

Background

Children with severe neurological impairment (SNI) have central nervous system conditions that result in medical complexity and lifelong caregiver assistance. When children with SNI are admitted to the pediatric intensive care unit (PICU), their parents/families may experience elevated stress due to poor communication with clinicians.

Methods

To address this, we created a photo-narrative intervention designed to facilitate parent-clinician communication. The intervention asks parents/families to share 3 photos with captions that inform clinicians about their child's well-being and quality-of-life. The steps include: 1) learning about photo-narratives; 2) deciding on a story; 3) selecting photos; and 4) identifying the broader context. Clinicians receive a companion guide on how to use the photo-narrative. In this pilot randomized controlled trial, N = 40 parent/family caregivers of children with SNI and their child's PICU clinicians will be randomized to receive the photo-narrative intervention or usual care. Participants will complete study surveys at enrollment and the child's PICU discharge; intervention-arm participants will also complete semi-structured interviews at discharge. The primary aim is to describe: 1) feasibility, assessed by the recruitment (approached/enrolled) and completion (intervention completion/intervention-arm) rates; and 2) acceptability (recommend the intervention/intervention-arm). We also will evaluate proof of concept by comparing changes in parent self-reported stress, perceptions of therapeutic alliance, and effects on stigma, resilience, benefit-finding, and respect as well as clinician self-reported empathy and perspective-taking.

Discussion

This study will evaluate the feasibility and acceptability of a novel photo-narrative intervention designed to improve caregiver stress and communication. Findings will guide the development of future multisite studies.

Clinical trial registration

NCT06208332.

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来源期刊

Contemporary Clinical Trials Communications Pharmacology, Toxicology and Pharmaceutics-Pharmacology

CiteScore

2.70

自引率

6.70%

发文量

146

审稿时长

20 weeks

期刊介绍： Contemporary Clinical Trials Communications is an international peer reviewed open access journal that publishes articles pertaining to all aspects of clinical trials, including, but not limited to, design, conduct, analysis, regulation and ethics. Manuscripts submitted should appeal to a readership drawn from a wide range of disciplines including medicine, life science, pharmaceutical science, biostatistics, epidemiology, computer science, management science, behavioral science, and bioethics. Contemporary Clinical Trials Communications is unique in that it is outside the confines of disease specifications, and it strives to increase the transparency of medical research and reduce publication bias by publishing scientifically valid original research findings irrespective of their perceived importance, significance or impact. Both randomized and non-randomized trials are within the scope of the Journal. Some common topics include trial design rationale and methods, operational methodologies and challenges, and positive and negative trial results. In addition to original research, the Journal also welcomes other types of communications including, but are not limited to, methodology reviews, perspectives and discussions. Through timely dissemination of advances in clinical trials, the goal of Contemporary Clinical Trials Communications is to serve as a platform to enhance the communication and collaboration within the global clinical trials community that ultimately advances this field of research for the benefit of patients.