Accepted for/Published in: JMIR Formative Research
Date Submitted: Dec 18, 2018
Open Peer Review Period: Dec 21, 2018 - Jan 31, 2019
Date Accepted: Mar 4, 2019
(closed for review but you can still tweet)
Exploring the views of people with multiple sclerosis and health care professionals about digitising FACETS - a face-to-face group fatigue management programme
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 UK funded a randomised controlled trial of ‘FACETS’ - a face-to-face group-based fatigue management programme for people with multiple sclerosis (pwMS) - developed by members of the research team. Given the favourable 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). While more than 1,500 pwMS have received the FACETS programme, 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 online model of service delivery.
Objective:
To gather views about an online model of service delivery from HCPs who have delivered FACETS and pwMS who have attended FACETS.
Methods:
Telephone consultations were undertaken with FACETS-trained HCPs who had experience of delivering FACETS (n=8). Three consultation groups were held with pwMS who had attended the FACETS programme: London (n=4), Liverpool (n=4) and Bristol (n=7). The consultation groups and interviews were digitally recorded and transcribed. Thematic analysis was used to identify key themes. Towards the project end, 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 online version of FACETS and maintaining user engagement were identified across six themes (delivery, design, group, engagement, interactivity, HCP relationships). Particularly of interest were themes related to the lack of high quality solutions that would support the FACETS weekly homework tasks as well as for symptom monitoring and management.
Conclusions:
A minimal web 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 project should look to create a free stand-alone digital toolkit focusing on the homework elements of FACETS. This work has commenced with a first version of the toolkit in development involving pwMS throughout design and build stages to ensure a user-centred solution.
Citation
Per the author's request the PDF is not available.
Copyright
© 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.