Mindfulness Helped MS Patients Cope With Symptoms
Mindfulness-based interventions (MBIs) helped people with multiple sclerosis (MS) cope with symptoms, and many said they would recommend these practices to others living with MS, according to a review of published studies related to patients’ experiences.
The participants reported the benefits of a shared experience, but stressed the importance of MBI instructors to help understand and practice mindfulness, and the inclusion of MS patients in MBI design and delivery to make them more relevant.
The study, “Mindfulness-based interventions for people with multiple sclerosis: a systematic review and meta-aggregation of qualitative research studies,” was published in the journal Disability and Rehabilitation.
MS is a progressive neurodegenerative condition commonly associated with anxiety and depression. Mindfulness-based interventions derived from meditation techniques have been shown to alleviate stress, fatigue, anxiety, and depression in MS, but low adherence and sustainability can limit its effectiveness.
Although review studies have attempted to quantify the impact of MBI in MS, no previous reviews have explored qualitative research data from the perspective of patients and families, attending health professionals, or those who deliver MBIs.
To address that, researchers based at the University of Toronto in Canada and the University of Glasgow in the U.K. examined medical databases, and selected six studies with qualitative findings relating to the experiences of 136 people with MS.
Of these, three studies took place in the U.K., two in Australia, and one in the U.S. Three selected studies also included data from MS clinicians and MBI instructors.
Patients ranged in age from 21 to 66 years, and most included female participants. All different MS types were represented, with relapsing-remitting MS being the most common.
Reviewed studies offered instructor-led MBIs that used mindfulness-based cognitive therapy (MBCT) or mindfulness-based stress reduction (MBSR), either online or in-person. The team combined the findings into four categories: accessing mindfulness, a sense of belonging, experiencing mindfulness, and making mindfulness more relevant and sustainable for people with MS.
Commonly reported motivations for accessing MBIs were help with stress, pain, and sleep disturbances.
“I’m trying to find other ways to solve my problems of falling asleep without drugs, … it seemed like mindfulness makes sense as a potential solution to at least help with some of my MS problems,” said one study participant.
Both patients and clinicians had limited knowledge of MBI. One MS care provider said they would recommend MBI if they knew the instructors were qualified and experienced with MS. Another clinician pointed out the lack of BMI funding in a publicly funded healthcare system and the need for collaboration with charitable organizations.
MS patients highlighted the significance of accommodating people with disabilities, including dedicated parking. These experiences related to why some people with MS preferred online MBI.
“I really enjoyed the online version of mindfulness program as I didn’t have to travel anywhere and could stay in the comfort of my own home,” said a participant.
Shared identity, solidarity, and a sense of belonging were consistent findings across studies of group-based MBIs. Patients were able to network and share ideas about coping with MS.
“Well, it’s always nice to have the camaraderie of people in similar situations. In this case, it was all women, which most of us with MS are, or more of us,” reported one patient. “Commonality of the disease I found very helpful cause you’re all going through and can share the same difficulties and often the same fears,” said another patient.
Participants related their fear of becoming more mindful about the disease, particularly with distressing and unpleasant experiences, but staying focused on moment-by-moment experiences also was identified as beneficial. Some patients did not know what to expect from mindfulness courses.
“I had a reservation that it might make me unhappy, because not understanding very much about it, I thought I’m not really sure if I’m quite ready to accept what I’m going to learn about myself. I did think about that at the start and I do feel like I’m not scared by it anymore,” one commented.
Managing expectations
A clinician said it was important to manage expectations in advance and set realistic goals before MBI.
“I think there are some misunderstandings about what people are expecting to achieve. So, I would hope any courses would start off by being clear about what the goals or lack of goals actually are and modify expectations,” they said.
One study reported that expectations between participants and MBI instructors were mismatched, resulting in one course adding an orientation session, which the instructors saw as positive. In group-based MBIs, the instructors played an essential role in engagement, understanding, and participation.
Through MBI, patients reported an enhanced ability to control how to respond to moment-by-moment experiences, including unpleasant experiences. Others described developing an appreciation of the present moment, with some surprised by the shift in awareness, which felt good.
“Just things that you knew existed, but you never spent time thinking about it and it kind of makes me very grateful, very thankful to be alive and to be able to experience it… being grateful for the abilities that I do have and not really mourning or giving a whole lot of space in my head for the things that I no longer can do,” one participant observed.
In all reviewed studies, participants would recommend mindfulness to others with MS, but there was no consensus on when to learn mindfulness. Many emphasized they would participate if MBI addressed specific symptoms, especially if recommended by their doctor.
“If it’s something like ‘Yeah we can help to work on that anxiety, or work on some things’ and it’s geared towards people with MS, I think that would be really helpful,” said one.
Both participants and clinicians mentioned the importance of including MS patients in the design and delivery of MBIs. MBI instructors said that participants’ experience of disability had to be acknowledged when teaching about mindfulness and that the implementation was done in a flexible and informed manner.
“You really had to take on board disability … to see how it played out in people’s lives … because we were with them so long and just having to really witness and hear about it,” said one instructor.
Perceived benefits were related to taking perspective and changing habits with common MS symptoms such as stress, pain, sleep disturbances, and anger.
“It didn’t change the sensations as such it changed my way of thinking about the sensation … my thought process, I wasn’t stressing about “oh my goodness this is, there’s a tingling here”, I was more relaxed about it and I accepted it,” said a participant. “I’ve also noticed that I’m sleeping better at night,” added another.
To make MBI more relevant within healthcare, clinicians advised seeing benefits would be valuable, as well as feedback from instructors. To make MBI more sustainable, MS patients suggested weekly course reminders or additional sessions after course completion.
“PwMS [people with MS] undertaking an MBI value a sense of belonging that develops through shared (mindful) experiencing and highlight the critical role MBI instructors play in helping participants learn to be mindful,” the researchers concluded.
“How MBIs are taught, their relevance, and sustainability could all be enhanced for PwMS by involving those affected in course design, delivery, and iterative refinement,” they added.
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