JMIR Publications

ABSTRACT

Background:

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.

Objective:

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.

Methods:

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.

Results:

Overall, 43 parents in the observation group and 49 in the intervention group completed the study. Results found that the intervention reduced parents’ anxiety (Dint(Post-Pre)=−7.0 [SD 13.1], Dobs(Post-Pre)=−0.4 [SD 15.8], t90=−2.200, P=.03) and uncertainty in illness (Dint(Post-Pre)=−25.0 [SD 8.2], Dobs(Post-Pre)=−19.8 [SD 10.1], t90=−2.761, P=.01), improved parents’ social function (Dint(Post-Pre)=9.0 [SD 32.8], Dobs(Post-Pre)=−7.5 [SD 30.3], t90=2.494, P=.01), increased parents’ knowledge of ALL and care (Dint(Post-Pre)=28.4 [SD 12.4], Dobs(Post-Pre)=17.2 [SD 11.9], t90=4.407, P<.001), and decreased their need for knowledge (Dint(Post-Pre)=−9.9 [SD 11.6], Dobs(Post-Pre)=−1.9 [SD 6.4], t90=−4.112, P<.001). Qualitative results showed that parents were satisfied with the intervention and their role in the caregiving process.

Conclusions:

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.