Gilljam Britt-Mari, Nygren Jens M, Svedberg Petra, Arvidsson Susann
School of Health and Welfare, Halmstad University, Halmstad, Sweden.
J Med Internet Res. 2020 Jul 28;22(7):e17673. doi: 10.2196/17673.
For children 6-12 years old, there is a shortage of electronic Health (eHealth) services that promote their participation in health care. Therefore, a digital communication tool, called Sisom, was developed to give children a voice in their health care. Children with long-term diseases want to be more involved in their health care and have the right to receive information, be listened to, express their opinions, and participate in decision making in health care. However, the outcomes of using Sisom in practice at pediatric oncology clinics have not been investigated.
The aim of this study was to investigate children's participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom.
A quasiexperimental design with mixed methods was used. We analyzed 27 filmed appointments with pediatricians for 14 children (8 girls and 6 boys) aged 6-12 years (mean 8.3 years) with a cancer diagnosis. The intervention group consisted of children who used Sisom prior to their appointments with pediatricians at a pediatric oncology clinic, and the control group consisted of children who had appointments with pediatricians at 4 pediatric oncology clinics. Data from observations from the videos were quantitatively and qualitatively analyzed. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, the proportion of the appointment time that the children were talking, and levels of participation by the children. For the qualitative analysis, we used directed content analysis to analyze the children's levels of participation guided by a framework based on Shier's model of participation.
Pediatricians directed a greater proportion of their discussion toward the child in the intervention group (731 occasions) than in the control group (624 occasions), but the proportion of the appointment time the children talked was almost the same for both the intervention and control groups (mean 17.0 minutes vs 17.6 minutes). The levels of participation corresponded to the first three levels of Shier's participation model: children were listened to, children were supported to express their views, and children's views were taken into account. The results showed an increased level of participation by the children in the intervention group. Several codes that were found did not fit into any of the existing categories, and a new category was thus formed: children received information.
This study shows that the eHealth service Sisom can increase children's participation during appointments with health care professionals. Further studies employing a randomized control design focusing on the effects of eHealth services on children's health outcomes, perceived participation, and cost-effectiveness could make a significant contribution to guiding the implementation of eHealth services in pediatric care.
对于6至12岁的儿童而言，促进他们参与医疗保健的电子健康（eHealth）服务短缺。因此，开发了一种名为Sisom的数字通信工具，以使儿童在其医疗保健中拥有发言权。患有慢性病的儿童希望更多地参与其医疗保健，并有权接收信息、被倾听、表达意见以及参与医疗保健决策。然而，在儿科肿瘤诊所实际使用Sisom的效果尚未得到研究。
本研究的目的是调查在儿科肿瘤诊所与儿科医生预约期间，儿童在使用或不使用电子健康服务Sisom情况下的参与情况。
采用了混合方法的准实验设计。我们分析了14名年龄在6至12岁（平均8.3岁）被诊断患有癌症的儿童（8名女孩和6名男孩）与儿科医生预约的27段视频记录。干预组由在儿科肿瘤诊所与儿科医生预约前使用Sisom的儿童组成，对照组由在4家儿科肿瘤诊所与儿科医生预约的儿童组成。对视频观察数据进行了定量和定性分析。定量分析包括人工计算儿科医生直接与儿童交谈的次数、儿童交谈时间在预约时间中所占的比例以及儿童的参与程度。对于定性分析，我们使用定向内容分析，以基于希尔参与模型的框架为指导，分析儿童的参与程度。
与对照组（624次）相比，干预组儿科医生在讨论中针对儿童的比例更高（731次），但干预组和对照组儿童交谈时间在预约时间中所占的比例几乎相同（平均17.0分钟对17.6分钟）。参与程度符合希尔参与模型的前三个层次：儿童被倾听、儿童被支持表达观点以及儿童的观点被考虑在内。结果显示干预组儿童的参与程度有所提高。发现的几个编码不符合任何现有类别，因此形成了一个新类别：儿童接收信息。
本研究表明，电子健康服务Sisom可以提高儿童在与医疗保健专业人员预约期间的参与程度。进一步采用随机对照设计的研究，聚焦于电子健康服务对儿童健康结果、感知参与度和成本效益的影响，可能会对指导电子健康服务在儿科护理中的实施做出重大贡献。
