An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Co-design and User Testing Study (Preprint)

Abstract

BACKGROUND Caregivers take on new challenges and tasks when their child is diagnosed with cancer, which can be overwhelming. Mobile technology has the capacity to provide in the moment support at their fingertips to aid in symptom tracking, medication management, and planning for emergencies. OBJECTIVE The objective of this study was to engage directly with end-users to co-design and create a mobile technology app to support caregivers in the medical management of their child with cancer. METHODS We engaged directly with caregivers of children with cancer and pediatric oncology nurse coordinators (proxy end-users) to co-design and create the prototype of the Cope 360 mHealth tool. Alpha testing was accomplished through walking the users through a series of pre-determined tasks that encompassed all aspects of the app including tracking symptoms, managing medications, and planning or practicing for a medical emergency that required seeking care in the emergency department. Evaluation was accomplished through recorded semi-structured interviews and quantitative surveys to capture demographics and measure the system usability score. Interviews were transcribed and analyzed iteratively using NVivo 12. RESULTS There were 8 caregivers (ages 33-50) of children with cancer with most children receiving chemotherapy and 6 nurse coordinators with half having 11-20 years of nursing experience. The mean system usability score was 89.4 (95% CI 80-98.8). The main themes found in the qualitative evaluation of caregivers’ experience with alpha testing included need for clarity in the medical information and terminology, improvement in design of tasks, tracking of symptoms including adjusting the look and feel of certain buttons, and changing the visual graph used to monitor symptoms to include date anchors. CONCLUSIONS Further testing among caregivers in a real-world environment is needed to refine the final version of the Cope 360 tool prior to implementation within a randomized controlled trial.