Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Apr 17, 2020
Date Accepted: Oct 26, 2020
Warning: This is an author submission that is not peer-reviewed or edited.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.
Development of an online mindfulness program for people with multiple sclerosis: A qualitative co-design study
ABSTRACT
Background:
Mindfulness-based stress reduction (MBSR) is an efficacious treatment for people with chronic health problems but is highly intensive and time consuming which is a barrier for service provision.
Objective:
This study aimed to develop an online version of MBSR for people with MS (PwMS), to make the intervention more accessible.
Methods:
We co-designed an online mindfulness-based program with end-users (n = 19 PwMS). Iterative feedback was also sought from a sub-sample of the initial group of end users, and the program was reviewed by experts (n = 8).
Results:
We identified three main themes common to PwMS: dealing with uncertainty and fears for the future; grief and loss, and social isolation. These themes were incorporated into narratives throughout the program. PwMS who reviewed the program gave feedback that the program was relatable, feasible and acceptable. Experts agreed that the program represented the main tenets of mindfulness appropriately. Iterative feedback was used to further refine the program.
Conclusions:
The online mindfulness program we developed was viewed positively by both experts and end-users. The program reflects common concerns for PwMS and has the potential to meet important unmet psychological needs. A randomized controlled trial is planned to determine the program’s efficacy.
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