Mindfulness-based interventions for people with multiple sclerosis: a systematic review and meta-aggregation of qualitative research studies

Abstract

Purpose: Mindfulness-based interventions (MBIs) are effective treatments for stress, anxiety, and depression in PwMS. However, low adherence and high attrition may limit effectiveness. Qualitative research can provide important insights into MBI acceptability, accessibility, and implementation. This systematic review and meta-aggregation evaluated qualitative research findings on the use of MBIs for PwMS. Methods: Systematic searches were undertaken in six major electronic databases. Studies using qualitative or mixed methods were included. Two reviewers screened, data extracted, and critically appraised studies. Meta-aggregation was performed following the Joanna Briggs Institute approach, extracting findings, developing categories, and synthesizing findings. Results: Six eligible papers, including 136 PwMS were included in meta-aggregation. 136 findings were extracted, grouped into 17 categories, with four synthesized findings: (1) "accessing mindfulness," (2) "a sense of belonging," (3) "experiencing mindfulness," and ( 4) "making mindfulness more relevant and sustainable for PwMS." Conclusions: MBIs for PwMS need to take into consideration disability which can limit accessibility. Online MBIs (synchronous and asynchronous) appear acceptable alternatives to traditional face-to-face courses. However, PwMS benefit from shared (mindful) experiencing and highlight MBI instructors as crucial in helping them understand and practice mindfulness. Involving PwMS in design, delivery, and iterative refinement would make MBIs more relevant to those taking part. ä IMPLICATIONS FOR REHABILITATION 1. Both face-to-face and online Mindfulness-based interventions (MBIs) appear acceptable to PwMS and, ideally, people should be offered a choice in training modality. 2. PwMS derive benefit from undertaking MBIs with their peers, where a sense of camaraderie and belonging develop through shared (mindful) experiences. 3. Instructors delivering MBIs for PwMS should be knowledgeable about the condition; participants describe how the instructor has a key role in helping them practice mindfulness effectively in the context of unpleasant experiences associated with MS. 4. MBIs tailored for PwMS should include a pre-course orientation session, clearly articulate how mindfulness practices can help with MS, provide well-organized course materials in large font size, and deliver individual mindfulness practices flexibly depending on participant need.

A qualitative analysis of free text comments of participants from a massive open online mindfulness course

“…Participants in an MBI using smart phones that included interaction with the course educators, reported increased connectedness and reduced loneliness and social isolation (36). People with multiple sclerosis undertaking an MBI experienced feelings of camaraderie and belonging (39). Consistent with our study, in Buddhist contemplative training, self-control practices incorporating acceptance nurture an attitude of compassion toward oneself and others, enhancing social connectivity (52).…”

“…The subtheme "learning through a sense of belonging to the community" has also been identified as a mechanism of enhanced learning in people coping with life-changing chronic conditions. In a meta-analysis of six qualitative studies examining MBIs in people with multiple sclerosis "a sense of belonging" was identified as one of the four major themes with shared (mindful) learning identified as a vital mechanism (39). Similarly, stroke survivors (40) and people with amyotrophic lateral sclerosis (41) found the shared experience of MBIs with their peers provided motivation and support.…”

Conceptualization, use, and outcomes associated with compassion in the care of people with multiple sclerosis: a scoping review

“…Virtual interventions to facilitate increased self-compassion among PwMS may represent an effective way of addressing the surge of psychological distress reported by PwMS during the COVID-19 pandemic [ 79 , 80 ]. Online MBIs appear to be acceptable to PwMS [ 81 ], are effective at reducing stress [ 82 , 83 ] and improving self-compassion [ 69 ], but do not have compassion as the core focus of treatment and compassion-based interventions may be more effective at improving compassion specifically [ 9 ].…”

A systematic review and meta-analysis exploring the efficacy of mindfulness-based interventions on quality of life in people with multiple sclerosis

“…Both face-to-face and online MBIs hold potential for effectiveness, though the small number of studies in this area makes drawing firm conclusions difficult. In pragmatic terms, online or virtual MBIs may now be preferrable to PwMS, given the ongoing context created by the COVID-19 pandemic, and may also help to address some of the inequalities PwMS face in accessing mental healthcare [73].…”