Maintenance Notice

Due to necessary scheduled maintenance, the JMIR Publications website will be unavailable from Wednesday, July 01, 2020 at 8:00 PM to 10:00 PM EST. We apologize in advance for any inconvenience this may cause you.

Who will be affected?

Advertisement

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)

Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.

Reducing Cancer Caregiver Burden: A User-Centered Design Approach for an mHealth App

  • Ingrid Oakley-Girvan; 
  • Sharon Watkins Davis; 
  • Allison Kurian; 
  • Lisa G. Rosas; 
  • Jena Daniels; 
  • Oxana Gronskaya Palesh; 
  • Rachel J. Mesia; 
  • Arif H. Kamal; 
  • Michelle Longmire; 
  • Vasu Divi; 

ABSTRACT

Background:

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.

Objective:

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.

Methods:

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).

Results:

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.

Conclusions:

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)


 Citation

Please cite as:

Oakley-Girvan I, Davis SW, Kurian A, Rosas LG, Daniels J, Palesh OG, Mesia RJ, Kamal AH, Longmire M, Divi V

Reducing Cancer Caregiver Burden: A User-Centered Design Approach for an mHealth App

JMIR Preprints. 20/07/2020:22608

DOI: 10.2196/preprints.22608

URL: https://preprints.jmir.org/preprint/22608

Download PDF


Request queued. Please wait while the file is being generated. It may take some time.

© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.