Currently submitted to: JMIR mHealth and uHealth
Date Submitted: Jul 20, 2020
Open Peer Review Period: Jul 20, 2020 - Sep 14, 2020
(currently open for review)
Reducing Cancer Caregiver Burden: A User-Centered Design Approach for an mHealth App
Informal caregivers are essential partners in the delivery of complex cancer care services at home, and about 25% of those caring for cancer patients spend more than 40 hours a week providing services. Caregivers frequently suffer psychological, behavioral and physiological effects that can not only affect the patients’ mental and physical health, but also impair the caregivers’ health.
In this paper, we describe a user-centered design approach to build an mHealth smartphone app to provide support and resources to informal caregivers (carepartners) while enabling them to remotely monitor the cancer survivor’s health for unanticipated adverse events, thereby reducing burden for clinical staff.
An iterative information gathering process was conducted that included a) key-informant interviews with 138 stakeholders to assess health care value propositions and corresponding benefit modules; b) semi-structured interviews with clinicians (N=3), cancer patients (N=3) and carepartners (N=3) to identify needs and interests, and; c) a 28-day beta iOS user testing with feasibility and acceptability feedback from 8 carepartners in two geographically different academic cancer centers (Duke and Stanford). This study was registered on clinicaltrials.gov (NCT04018677).
The interviews conducted prior to developing the mHealth app prototype identified areas of consistency in responses between different stakeholder groups in terms of how the mobile app should work, as well as areas of difference. The Beta test of the prototype indicated satisfaction with the app’s usability. Carepartners preferred to focus primarily on the patient’s health and not their own, and regular surveys on the patient’s symptoms helped educate care partners and reduce their anxiety.
This study describes the user-centered design process and demonstrates the feasibility and acceptability of TOGETHERCareTM, an iOS smartphone app for informal cancer carepartners. Larger studies, in various oncology populations, are needed to establish the efficacy of the app in reducing carepartner burden and to facilitate critical remote monitoring. Clinical Trial: clinicaltrials.gov (NCT04018677)
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