Co-designing a web-based mindfulness program with people with MS

Mindfulness-based stress reduction is an effective treatment for people with chronic health conditions. However, mindfulness programs can be problematic in real-life as they are usually highly intensive and time consuming. This becomes a barrier for healthcare professionals to manage and challenging for people with health issues to practice consistently.

  • People with MS live with higher rates of depression and anxiety than the general population.
  • Recent research in MS has shown that psychological interventions significantly improve depression, anxiety, fatigue, and quality of life, with mindfulness-based stress reduction shown to have significant benefits.
  • This study developed a web-based mindfulness program specifically tailored for people with MS, after careful consideration of unmet needs and feedback from both people with MS and experts in the field.

What did the study investigators do?

This study aimed to develop an internet-based version of a mindfulness program for people with MS, which is both accessible and user-friendly.  What is remarkable about this study is that the study investigators co-designed the program with people with MS, addressing common challenges and experiences. This MS Australia supported study, led by psychologist Amy-Lee Sesel, was published in The Journal of Medical Internet Research.

Study investigators recruited 19 participants from an MS Clinic in Sydney, Australia: 13 females and 6 males. Five participants were living with progressive MS and 14 with relapsing remitting MS. A total of 12 study participants experienced depressive symptoms and about half experienced anxiety. Participants underwent interviews with the study researchers, as well as performing questionnaires to assist in the development of modules to form a mindfulness program which would be accessible and relatable to others with MS. Once the modules were formulated, further feedback from participants was sought, as well as feedback from experts in the field, which led to further changes to the final mindfulness program.

What did the study findings reveal?

Interviews with study participants revealed their own psychological experiences and their unmet needs. Findings showed common themes of uncertainty (about the future, MS progression, MS relapse), grief and loss (of future plans, independence, confidence) and social isolation (difficulties for others in understanding challenges, apathy from others, loss of friendships). These themes provided the narratives to supplement the mindfulness content of the program to tailor it specifically for people living with MS.  The program was reported by participants to be highly relatable and acceptable.

Additionally, study investigators engaged various experts in the field of MS, mindfulness and web-based programs to review the program and make suggestions. These experts considered the content to be consistent with mindfulness principles and teachings. A web-based mindfulness program was subsequently finalised, comprising five 15-minute web modules, designed to be delivered gradually over 8 weeks. The program content covers anxiety, stress, fatigue, dealing with difficult sensations and emotions, low mood, social isolation, mindful communication and self-compassion with both formal and informal tasks to practice between modules.

How will this study help people with MS?

Being co-designed with people with MS from first stages, right through to module development and completion, this study represents a true partnership in research.  Designed to be a psychological intervention to meet the unmet needs of people with MS, the web-based program also helps overcome common barriers for mindfulness programs by using affordable, acceptable, relatable, and flexible methods, whilst considering common MS symptoms such as fatigue and pain.  Ongoing research by the study investigators assessing the effectiveness of the program in the real world using a clinical trial, will be reported in a future WIRE edition.

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Co-designing a web-based mindfulness program with people with MS