Rajagopal Veena, Brown Katherine, Pagel Christina, Wray Jo
Heart and Lung, Great Ormond Street Hospital For Children NHS Foundation Trust, London, UK.
Clinical Operational Research Unit, University College London, London, UK.
BMJ Paediatr Open. 2020 Feb 26;4(1):e000578. doi: 10.1136/bmjpo-2019-000578. eCollection 2020.
Following paediatric cardiac surgery, quality of life may be significantly impacted by morbidities associated with cardiac surgery. Parental understanding of the potential for postoperative morbidity is important for informed decision making. As part of a broader research study, we aimed to elicit parental understanding and experience of the communication of morbidities following their child's cardiac surgery, using traditional focus groups together with an online forum.
The Children's Heart Federation set up and moderated a closed, anonymous online discussion group via their Facebook page, focusing on complications, information needs and methods of providing families with information. Additionally, we ran three focus groups with parents/carers, moderated by an experienced independent professional. Focus groups were recorded and transcribed and a single transcript was generated from the online forum. All transcripts were thematically analysed.
All data were collected in 2014. The forum ran over 3 months in 2014 and involved 72 participants. Focus groups involved 13 participants. Three broad themes were identified: (1) clinicians' use of language, (2) feeling unprepared for complications and (3) information needs of families.
Clinicians' language is often misunderstood, with wide variability in the way morbidities are described, and between differing teams looking after the same child. Information may not be easily absorbed or retained by families, who often felt unprepared for morbidities that arose after their child's heart surgery. Here, we propose key principles of good communication tailored to the individual receiving it.
小儿心脏手术后，生活质量可能会受到与心脏手术相关的并发症的显著影响。家长对术后并发症可能性的了解对于做出明智的决策很重要。作为一项更广泛研究的一部分，我们旨在通过传统焦点小组和在线论坛，了解家长对其孩子心脏手术后并发症沟通的理解和体验。
儿童心脏联合会通过其Facebook页面设立并主持了一个封闭的匿名在线讨论组，重点关注并发症、信息需求以及向家庭提供信息的方法。此外，我们与家长/照顾者进行了三个焦点小组讨论，由一位经验丰富的独立专业人员主持。焦点小组讨论进行了录音和转录，并从在线论坛生成了一份单一的文字记录。所有文字记录都进行了主题分析。
所有数据均于2014年收集。该论坛在2014年持续了3个多月，有72名参与者。焦点小组有13名参与者。确定了三个广泛的主题：（1）临床医生的语言使用，（2）对并发症准备不足的感觉，以及（3）家庭的信息需求。
临床医生的语言常常被误解，对并发症的描述方式差异很大，而且在照顾同一个孩子的不同团队之间也存在差异。信息可能不容易被家庭吸收和记住，他们通常对孩子心脏手术后出现的并发症没有做好准备。在此，我们提出了针对接收信息个体的良好沟通的关键原则。
