Bogetz Jori, Ayala Elsa, Anderson Jordan, Morris Liz, Barton Krysta S, Bradford Miranda C, Zhou Chuan, Yi-Frazier Joyce, Watson R Scott, Rosenberg Abby R
Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine, Treuman Katz Center for Pediatric Bioethics and Palliative Care, Center for Clinical and Translational Research, Seattle Children's Research Institute, United States.
Treuman Katz Center for Bioethics, Center for Clinical and Translational Research, Seattle Children's Research Institute, United States.
Contemp Clin Trials Commun. 2025 Feb 11;44:101455. doi: 10.1016/j.conctc.2025.101455. eCollection 2025 Apr.
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.
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.
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.
NCT06208332.
患有严重神经功能障碍（SNI）的儿童患有中枢神经系统疾病，这会导致医疗复杂性增加以及需要终身的照料者协助。当患有SNI的儿童入住儿科重症监护病房（PICU）时，由于与临床医生沟通不畅，他们的父母/家人可能会经历更大的压力。
为了解决这个问题，我们创建了一种照片叙事干预措施，旨在促进家长与临床医生之间的沟通。该干预措施要求父母/家人分享3张配有文字说明的照片，这些文字说明向临床医生介绍孩子的健康状况和生活质量。步骤包括：1）了解照片叙事；2）确定一个故事；3）选择照片；4）确定更广泛的背景。临床医生会收到一份关于如何使用照片叙事的配套指南。在这项试点随机对照试验中，40名患有SNI儿童的家长/家庭照料者及其孩子的PICU临床医生将被随机分配接受照片叙事干预或常规护理。参与者将在入组时和孩子从PICU出院时完成研究调查；干预组的参与者还将在出院时完成半结构化访谈。主要目的是描述：1）可行性，通过招募率（接触/入组）和完成率（干预完成/干预组）进行评估；2）可接受性（推荐该干预措施/干预组）。我们还将通过比较家长自我报告的压力、对治疗联盟的看法以及对耻辱感、恢复力、益处发现和尊重的影响，以及临床医生自我报告的同理心和换位思考能力的变化，来评估概念验证。
本研究将评估一种旨在减轻照料者压力和改善沟通的新型照片叙事干预措施的可行性和可接受性。研究结果将为未来多中心研究的开展提供指导。
NCT06208332。
