Saron Holly, Cleary Gavin, Marson Anthony, Ainsworth Jenny, Downing Jennifer, Sandars John, Whitty Laura, Cheetham Shabnam, Sinha Ian, Carter Bernie, Pain Clare E
Faculty of Health, Social Care and Medicine, Edge Hill University, Ormskirk, UK.
Department of Women's and Children's Health, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK.
Rheumatology (Oxford). 2025 Jun 1;64(6):3361-3369. doi: 10.1093/rheumatology/keaf106.
To explore experiences, benefits and concerns associated with remote (telephone/video) consultations from the perspectives of children and young people with juvenile idiopathic arthritis (JIA), their parents and health professionals who were members of a multidisciplinary team in a paediatric rheumatology setting.
Qualitative design (Interpretive Description) utilizing observation of remote (telephone/video) consultations and remote follow-up interviews with children and young people (7-18 years) with JIA, their parents and health professionals. The setting was a tertiary paediatric rheumatology clinic in a hospital in Northwest England. Two groups of experts-by-experience (children, young people, parents) provided high quality input into study design and dissemination materials. Data analysis used reflexive thematic analysis.
Thirty-seven participants were observed (11 video, five telephone consultations): health professionals (n = 8); mothers (n = 11); fathers (n = 3); children and young people (n = 15). Parents (n = 7), children and young people (n = 8) and health professionals (n = 7) were interviewed. The overarching theme was that remote consultations were 'virtually the same but remotely different' to face-to-face hospital-based consultations. Four sub-themes were identified: 'It's a catch-up rather than a check-up'; 'A sense of familiarity but a shift in dynamics'; 'Minimizing disruption and burden'; and 'Being 'seen' but seen differently'.
Overall, remote consultations were viewed positively, bringing benefits to children, young people and parents. There was a notable transition in responsibility towards children and young people and/or their parents for reporting and recognizing disease flare, compared with face-to-face consultations. Optimizing the experience of remote consultations though better preparation, information and education for children, young people, parents and health professionals is needed.
从患有幼年特发性关节炎(JIA)的儿童和青少年、他们的父母以及儿科风湿病学多学科团队中的健康专业人员的角度,探讨远程(电话/视频)会诊的体验、益处和担忧。
采用定性设计(诠释性描述),观察远程(电话/视频)会诊,并对患有JIA的儿童和青少年(7至18岁)、他们的父母以及健康专业人员进行远程随访访谈。研究地点是英格兰西北部一家医院的三级儿科风湿病诊所。两组经验丰富的专家(儿童、青少年、父母)为研究设计和传播材料提供了高质量的意见。数据分析采用反思性主题分析。
观察了37名参与者(11次视频会诊、5次电话会诊):健康专业人员(n = 8);母亲(n = 11);父亲(n = 3);儿童和青少年(n = 15)。对父母(n = 7)、儿童和青少年(n = 8)以及健康专业人员(n = 7)进行了访谈。总体主题是,远程会诊与基于医院的面对面会诊“实际上相同但又有所不同”。确定了四个子主题:“这是一次跟进而非检查”;“有熟悉感但动态有所变化”;“尽量减少干扰和负担”;以及“被‘看到’但看法不同”。
总体而言,远程会诊受到积极评价,给儿童、青少年和父母带来了益处。与面对面会诊相比,在报告和识别疾病发作方面,儿童和青少年及/或其父母的责任有了显著转变。需要通过为儿童、青少年、父母和健康专业人员提供更好的准备工作、信息和教育,来优化远程会诊的体验。