Wang Jingting, Yao Nengliang, Wang Yuanyuan, Zhou Fen, Liu Yanyan, Geng Zhaohui, Yuan Changrong
School of Nursing, Second Military Medical University, China.
Department of Healthcare Policy and Research, Virginia Commonwealth University, USA.
J Telemed Telecare. 2016 Apr;22(3):163-71. doi: 10.1177/1357633X15594753. Epub 2015 Aug 12.
Acute lymphoblastic leukaemia (ALL) is the most common childhood malignancy. Caring for children with ALL is an uncommon experience for parents without medical training. They urgently need professional assistance when their children are recovering at home. This paper documents the process of developing an Android application (app) "Care Assistant" for family caregivers of children with ALL. Key informant interviews and focus group studies were used before programming the app. The key informants and focus group members included: caregivers of children with ALL, cancer care physicians and nurses, and software engineers. We found several major challenges faced by caregivers: limited access to evidence-based clinic information, lack of financial and social assistance, deficient communications with doctors or nurses, lack of disease-related knowledge, and inconvenience of tracking treatments and testing results. This feedback was used to develop "Care Assistant". This app has eight modules: personal information, treatment tracking, family care, financial and social assistance, knowledge centre, self-assessment questionnaires, interactive platform, and reminders. We have also developed a web-based administration portal to manage the app. The usability and effectiveness of "Care Assistant" will be evaluated in future studies.
急性淋巴细胞白血病(ALL)是儿童期最常见的恶性肿瘤。对于没有医学培训背景的父母来说,照顾患ALL的孩子是一种不常见的经历。当他们的孩子在家康复时,他们迫切需要专业帮助。本文记录了为ALL患儿家庭照顾者开发一款安卓应用程序(应用)“护理助手”的过程。在对该应用进行编程之前,进行了关键信息人访谈和焦点小组研究。关键信息人和焦点小组成员包括:ALL患儿的照顾者、癌症护理医生和护士以及软件工程师。我们发现照顾者面临几个主要挑战:获取循证临床信息的机会有限、缺乏经济和社会援助、与医生或护士的沟通不足、缺乏疾病相关知识以及跟踪治疗和检测结果不方便。这些反馈被用于开发“护理助手”。这个应用有八个模块:个人信息、治疗跟踪、家庭护理、经济和社会援助、知识中心、自我评估问卷、互动平台以及提醒。我们还开发了一个基于网络的管理门户来管理该应用。“护理助手”的可用性和有效性将在未来的研究中进行评估。