Lynch Fiona, Endacott Ruth, Latour Jos M
Women & Children's Division, Western Sussex NHS Trust, Worthing Hospital, Worthing, UK.
School of Nursing and Midwifery, Faculty of Health and Human Sciences, University of Plymouth, Plymouth, UK.
Nurs Crit Care. 2020 Jan;25(1):31-36. doi: 10.1111/nicc.12472. Epub 2019 Oct 4.
The aim of the study was to explore the incidence, use, and scope of patient diaries in paediatric intensive care units (PICUs) in the United Kingdom and Ireland.
This was an electronic survey sent to 30 PICUs in the United Kingdom and Ireland.
All PICUs (n = 30) responded, and 43% (n = 13) offered diaries. For those units that did not supply diaries, the reasons given were concerns around the legal and professional implication of using diaries. Parental/carer consent to use a diary was obtained informally (79%, n = 11), and once there was agreement to provide a diary to parents, diaries were usually started immediately (72%, n = 12). Parents were the main contributors to the diaries (94%, n = 17), and the diaries were populated with photographs (94%, n = 15), drawings (100%, n = 16), and stickers (94%, n = 15). The reasons for offering diaries were to fill gaps in memories, to engage with families, and to explain what has happened in lay language. The owner of the diary was reported to be the family (82%, n = 14) and the child (12%, n = 2).
The use of patient diaries is an evolving intervention in paediatric intensive care settings in the United Kingdom and Ireland. This national survey has provided a clearer picture of how this intervention is used in the United Kingdom and Ireland. PICU patient diaries are used in a significant number of units, and how these are used is relatively standardized, although in some different ways from general ICUs.
This survey provides a baseline for future exploration, understanding, and promotion of patient diaries, as a well evaluated tool for the critically ill child and his or her family.
本研究旨在探讨英国和爱尔兰儿科重症监护病房（PICU）中患者日记的发生率、使用情况及范围。
这是一项向英国和爱尔兰的30个PICU发送的电子调查问卷。
所有PICU（n = 30）均做出回应，其中43%（n = 13）提供患者日记。对于那些未提供日记的单位，给出的原因是担心使用日记的法律和专业影响。非正式地获得了家长/照顾者使用日记的同意（79%，n = 11），一旦同意向家长提供日记，通常会立即开始记录（72%，n = 12）。家长是日记的主要记录者（94%，n = 17），日记中还包含照片（94%，n = 15）、图画（100%，n = 16）和贴纸（94%，n = 15）。提供日记的原因是填补记忆空白、与家庭互动以及用通俗易懂的语言解释所发生的事情。据报告，日记的所有者是家庭（82%，n = 14）和孩子（12%，n = 2）。
在英国和爱尔兰的儿科重症监护环境中，使用患者日记是一种不断发展的干预措施。这项全国性调查更清晰地展示了这种干预措施在英国和爱尔兰的使用情况。相当数量的PICU使用患者日记，其使用方式相对标准化，尽管在某些方面与普通重症监护病房有所不同。
本次调查为未来探索、理解和推广患者日记提供了一个基线，患者日记是一种经过充分评估的针对危重症患儿及其家庭的工具。
