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Development of a Web-Based Mindfulness Program for People With Multiple Sclerosis: Qualitative Co-Design Study.

Amy-Lee Sesel, Louise Sharpe, Heidi N Beadnall, Michael H Barnett, Marianna Szabo, Sharon L. Naismith

Journal of Medical Internet Research March 2, 2021 DOI: 10.2196/19309 (opens in new tab)

Study at a glance

AI-extracted from the abstract
Characteristics Qualitative study Randomized Peer reviewed
Sample size 19
Population People with multiple sclerosis
Topics Depression Meditation
Keywords Humans Multiple sclerosis Treatment outcome Qualitative research Program development Internet intervention
Key findings People with multiple sclerosis who reviewed the co-designed web-based mindfulness program described it as relatable, feasible, and acceptable, and experts agreed it appropriately represented the main tenets of mindfulness. The authors argue the program reflects common concerns of this population and has the potential to meet unmet psychological needs; a randomized controlled trial was planned to test efficacy.

Abstract

Background: Mindfulness-based stress reduction is an efficacious treatment for people with chronic health problems; however, it is highly intensive and time-consuming, which is a barrier for service provision.

Objective: This study aims to develop an internet-delivered adapted version of mindfulness-based stress reduction for people with multiple sclerosis to make the intervention more accessible.

Methods: We co-designed a web-based mindfulness program with end users, that is, people with multiple sclerosis (N=19). Iterative feedback was also collected from a subsample of the initial group of end users (n=11), and the program was reviewed by experts (n=8).

Results: We identified three main themes common to people with multiple sclerosis: dealing with uncertainty and fears for the future, grief and loss, and social isolation. These themes were incorporated into narratives throughout the program. People with multiple sclerosis who reviewed the program gave feedback that the program was relatable, feasible, and acceptable. Experts agreed that the program appropriately represented the main tenets of mindfulness. Iterative feedback was used to further refine the program.

Conclusions: The web-based mindfulness program that we developed was viewed positively by both experts and end users. The program reflects common concerns for people with multiple sclerosis and has the potential to meet important unmet psychological needs. A randomized controlled trial was planned to determine the efficacy of the program.

Comparable studies

Other qualitative studies on meditation, most cited first.

Study Year Design Participants
The varieties of contemplative experience: A mixed-methods study of meditation-related challenges in Western Buddhists Western Buddhist meditation practitioners and experts in Theravāda, Zen, and Tibetan... 2017 Qualitative study with mixed-methods
The Effects of Mindfulness-based Stress Reduction on Nurse Stress and Burnout Nurses in a hospital system 2004 Implementation study with mixed methods
An exploratory mixed methods study of the acceptability and effectiveness of mindfulness -based cognitive therapy for patients with active depression and anxiety in primary care Primary care patients with recurrent depression or recurrent depression and anxiety 2006 Exploratory mixed methods study n = 13
A qualitative study of mindfulness‐based cognitive therapy for depression Participants in mindfulness-based cognitive therapy in a mental-health context 2001 Qualitative study n = 7
Effortless awareness: using real time neurofeedback to investigate correlates of posterior cingulate cortex activity in meditators' self-report Meditators 2013 Qualitative study using grounded theory methodology

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