Digitizing a face-to-face group fatigue management program: exploring the views of people with multiple sclerosis and health care professionals via consultation groups and interviews

Journal article


Thomas, S., Pulman, A., Thomas, P., Collard, S., Jiang, N., Dogan, H., Davies Smith, A., Hourihan, S., Roberts, F., Kersten, P., Pretty, K., Miller, J. K., Stanley, K. and Gay, M. 2019. Digitizing a face-to-face group fatigue management program: exploring the views of people with multiple sclerosis and health care professionals via consultation groups and interviews. JMIR Formative Research. 3 (2). https://doi.org/10.2196/10951
AuthorsThomas, S., Pulman, A., Thomas, P., Collard, S., Jiang, N., Dogan, H., Davies Smith, A., Hourihan, S., Roberts, F., Kersten, P., Pretty, K., Miller, J. K., Stanley, K. and Gay, M.
Abstract

Background:

Fatigue is one of the most common and debilitating symptoms of multiple sclerosis (MS) and is the main reason why people with MS stop working early. The MS Society in the United Kingdom funded a randomized controlled trial of FACETS—a face-to-face group-based fatigue management program for people with multiple sclerosis (pwMS)—developed by members of the research team. Given the favorable trial results and to help with implementation, the MS Society supported the design and printing of the FACETS manual and materials and the national delivery of FACETS training courses (designed by the research team) for health care professionals (HCPs). By 2015 more than 1500 pwMS had received the FACETS program, but it is not available in all areas and a face-to-face format may not be suitable for, or appeal to, everyone. For these reasons, the MS Society funded a consultation to explore an alternative Web-based model of service delivery.

Objective:

The aim of this study was to gather views about a Web-based model of service delivery from HCPs who had delivered FACETS and from pwMS who had attended FACETS.

Methods:

Telephone consultations were undertaken with FACETS-trained HCPs who had experience of delivering FACETS (n=8). Three face-to-face consultation groups were held with pwMS who had attended the FACETS program: London (n=4), Liverpool (n=4), and Bristol (n=7). The interviews and consultation groups were digitally recorded and transcribed. A thematic analysis was undertaken to identify key themes. Toward the end of the study, a roundtable meeting was held to discuss outcomes from the consultation with representatives from the MS Society, HCPs, and pwMS.

Results:

Key challenges and opportunities of designing and delivering an integrated Web-based version of FACETS and maintaining user engagement were identified across 7 themes (delivery, online delivery, design, group, engagement, interactivity, and HCP relationships). Particularly of interest were themes related to replicating the group dynamics and the lack of high-quality solutions that would support the FACETS’ weekly homework tasks and symptom monitoring and management.

Conclusions:

A minimum viable Web-based version of FACETS was suggested as the best starting point for a phased implementation, enabling a solution that could then be added to over time. It was also proposed that a separate study should look to create a free stand-alone digital toolkit focusing on the homework elements of FACETS. This study has commenced with a first version of the toolkit in development involving pwMS throughout the design and build stages to ensure a user-centered solution.

KeywordsMultiple sclerosis; MS; Fatigue management; FACETS; Web-based service delivery
Year2019
JournalJMIR Formative Research
Journal citation3 (2)
PublisherJMIR Publications
ISSN2561-326X
Digital Object Identifier (DOI)https://doi.org/10.2196/10951
Official URLhttps://formative.jmir.org/2019/2/e10951/
Publication dates
Online22 May 2019
Publication process dates
Accepted04 Mar 2019
Deposited14 Apr 2022
Accepted author manuscript
License
File Access Level
Open
Output statusPublished
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