Bristol Royal Hospital for Children, Upper Maudlin Street, Bristol, BS2 8BJ, United Kingdom.
University of the West of England, Bristol, United Kingdom.
Burns. 2019 Dec;45(8):1848-1855. doi: 10.1016/j.burns.2019.07.024. Epub 2019 Aug 6.
The emotional impact after a child's burn injury is poorly understood. Greater insight into the emotional journey can aid services' ability to meet patients/families' needs. To bridge the gap, this study employed an abbreviated form of Experience Based Co-Design (EBCD) to explore the emotional/experiential aspects of moderate to severe burn injuries in children.
Following EBCD, parents and health professionals were invited to share their experiences. Interviews were analysed and a short film was produced and shown at a focus group event for health professionals and families. Both positive and negative aspects of the journey were identified along with potential service improvements.
Families' journeys could be described by the following five distinct phases: life overturned, dawning reality, riding the emotional roller-coaster, aftershocks and, adapting to a new normal. Key areas for improvements were: communication, isolation, dressing changes and managing expectations.
EBCD facilitated collaborative discussion between researchers, families and health professionals. Families felt empowered to shape the future of burn care and health professionals felt included. Study challenges were mainly in participant engagement and the scheduling of interviews and the focus event. Overall the study outcome was successful in generating ideas for service improvements, and the production of a training video for healthcare professionals.
儿童烧伤后的情绪影响尚未得到充分理解。深入了解情绪历程可以帮助服务机构满足患者/家庭的需求。为了弥补这一差距，本研究采用了简化版的基于经验的共同设计（EBCD），以探讨儿童中度至重度烧伤的情绪/体验方面。
在 EBCD 之后，邀请家长和医疗保健专业人员分享他们的经验。对访谈进行了分析，并制作了一部短片，并在医疗保健专业人员和家庭的焦点小组活动中展示。确定了旅程的积极和消极方面以及潜在的服务改进。
家庭的旅程可以用以下五个不同的阶段来描述：生活颠覆、现实初现、情绪过山车、余震和适应新常态。需要改进的主要领域包括：沟通、隔离、换衣和管理期望。
EBCD 促进了研究人员、家庭和医疗保健专业人员之间的协作讨论。家庭感到有能力塑造烧伤护理的未来，医疗保健专业人员感到被包容。研究的挑战主要在于参与者的参与度以及访谈和焦点事件的日程安排。总体而言，该研究成功地提出了服务改进的想法，并制作了医疗保健专业人员的培训视频。
