Wang Jingting, Howell Doris, Shen Nanping, Geng Zhaohui, Wu Fulei, Shen Min, Zhang Xiaoyan, Xie Anwei, Wang Lin, Yuan Changrong
School of Nursing, Second Military Medical University, Shanghai, China.
Department of Supportive Care, Princess Margaret Cancer Center, Toronto, ON, Canada.
JMIR Mhealth Uhealth. 2018 Nov 19;6(11):e195. doi: 10.2196/mhealth.9981.
Acute lymphoblastic leukemia (ALL) is the most common childhood malignancy. Caring for children with ALL is challenging for parents. A mobile health (mHealth) supportive care intervention was developed to meet parents' needs.
This study aims to evaluate the potential effectiveness of this mHealth supportive care intervention on emotional distress, social support, care burden, uncertainty in illness, quality of life, and knowledge.
We conducted a quasi-experimental pre- and postdesign study from June 2015 to January 2016. In total, 101 parents were enrolled in the study, with 50 in the observation group and 51 in the intervention group. Parents in the observation group received the standard health education and were observed for 3 months. Parents in the intervention group received the mHealth supportive care intervention, in addition to the standard health education. The intervention consisted of 2 parts-an Android smartphone app "Care Assistant (CA)" and a WeChat Official Account. The CA with 8 modules (Personal Information, Treatment Tracking, Family Care, Financial and Social Assistance, Knowledge Center, Self- Assessment Questionnaires, Interactive Platform, and Reminders) was the main intervention tool, whereas the WeChat Official Account was supplementary to update information and realize interaction between parents and health care providers. Data of parents' social support, anxiety, depression, care burden, uncertainty in illness, quality of life, their existing knowledge of ALL and care, and knowledge need were collected before and after the 3-month study period in both groups. For the intervention group, parents' experience of receiving the intervention was also collected through individual interviews.
Overall, 43 parents in the observation group and 49 in the intervention group completed the study. Results found that the intervention reduced parents' anxiety (D=-7.0 [SD 13.1], D=-0.4 [SD 15.8], t=-2.200, P=.03) and uncertainty in illness (D=-25.0 [SD 8.2], D=-19.8 [SD 10.1], t=-2.761, P=.01), improved parents' social function (D=9.0 [SD 32.8], D=-7.5 [SD 30.3], t=2.494, P=.01), increased parents' knowledge of ALL and care (D=28.4 [SD 12.4], D=17.2 [SD 11.9], t90=4.407, P<.001), and decreased their need for knowledge (D=-9.9 [SD 11.6], D=-1.9 [SD 6.4], t=-4.112, P<.001). Qualitative results showed that parents were satisfied with the intervention and their role in the caregiving process.
The mHealth intervention in supporting parents of children with ALL is effective. This study is informative for other future studies on providing mHealth supportive care for parents of children with cancer.
急性淋巴细胞白血病（ALL）是儿童期最常见的恶性肿瘤。照顾患有ALL的儿童对父母来说具有挑战性。因此开发了一种移动健康（mHealth）支持性护理干预措施来满足父母的需求。
本研究旨在评估这种mHealth支持性护理干预措施对情绪困扰、社会支持、护理负担、疾病不确定性、生活质量和知识水平的潜在效果。
我们在2015年6月至2016年1月期间进行了一项准实验性前后设计研究。共有101名父母参与研究，其中观察组50名，干预组51名。观察组的父母接受标准健康教育，并观察3个月。干预组的父母除接受标准健康教育外，还接受mHealth支持性护理干预。该干预包括两部分——一款安卓智能手机应用程序“护理助手（CA）”和一个微信公众号。带有8个模块（个人信息、治疗跟踪、家庭护理、财务和社会援助、知识中心、自我评估问卷、互动平台和提醒）的CA是主要干预工具，而微信公众号则用于更新信息并实现父母与医疗保健提供者之间的互动。在两组为期3个月的研究期前后，收集父母的社会支持、焦虑、抑郁、护理负担、疾病不确定性、生活质量、他们对ALL及护理的现有知识以及知识需求的数据。对于干预组，还通过个人访谈收集父母接受干预的体验。
总体而言，观察组43名父母和干预组49名父母完成了研究。结果发现，干预降低了父母的焦虑程度（差值=-7.0[标准差13.1]，差值=-0.4[标准差15.8]，t=-2.200，P=0.03）和疾病不确定性（差值=-25.0[标准差8.2]，差值=-19.8[标准差10.1]，t=-2.761，P=0.01），改善了父母的社会功能（差值=9.0[标准差32.8]，差值=-7.5[标准差30.3]，t=2.494，P=0.01），增加了父母对ALL及护理的知识（差值=28.4[标准差12.4]，差值=17.2[标准差11.9]，t90=4.4,07，P<0.001），并降低了他们的知识需求（差值=-9.9[标准差11.6]，差值=-1.9[标准差6.4]，t=-4.112，P<0.001）。定性结果表明，父母对干预措施及其在护理过程中的作用感到满意。
mHealth干预对支持ALL患儿父母是有效的。本研究为未来其他关于为癌症患儿父母提供mHealth支持性护理的研究提供了参考。
