Perceptions of Participants in a Group, Community, Exercise Programme for People with Multiple Sclerosis

Abstract

Purpose. The purpose of this study was to explore the perceptions of people with multiple sclerosis of a community based, group exercise programme. Method. A pragmatic programme evaluation approach using qualitative research design was adopted. Focus groups were used to gather data from 14 participants who had taken part in a RCT of community based exercise interventions for PwMS who used at most a stick to walk outdoors. Data were transcribed verbatim and thematic analysis was used to first identify categories and then to group them into themes. Results. Three themes emerged, psychological benefits, physical benefits, and knowledge gained. The psychological benefits included the role of the group as a social and motivational factor, empowerment, confidence, hope, sense of achievement, and pride. Physical benefits were improved energy and reduced fatigue and improved ability and participation. Knowledge gained caused a shift from thoughts that exercise might do harm, to sufficient knowledge that would give participants confidence to exercise themselves. The role of the group was a key element in the positive outcomes. Conclusions. The qualitative analysis supports the findings of the main trial confirming positive effects of community exercise interventions by reducing the impact of MS and fatigue and improving participation.

Group-based, individualized exercises can provide perceived bodily changes and strengthen aspects of self in individuals with MS: a qualitative interview study

“…The participants highlighted that training together with others who had MS made the training situations feel safe, motivated them and gave them a perception of accomplishment, in line with other studies (Clarke and Coote, 2015;Dodd, Taylor, Denisenko, and Prasad, 2006;Learmonth and Motl, 2016). As emphasized by our findings, the interactions between the physiotherapist and a group member made new possibilities for movement visible to all the group members.…”

“…The participants' perceptions of improved symptoms, movement control and easier access to daily activities are not surprising and in line with significant effects on balance in the RCT, in which this interview study is nested (Arntzen et al, 2019). It is also in agreement with previous reviews of effects in balance and walking (Byrnes, Wu, and Whillier, 2018;Gunn et al, 2015;Hogan and Coote, 2009;Paltamaa, Sjogren, Peurala, and Heinonen, 2012;Rietberg, Brooks, Uitdehaag, and Kwakkel, 2005;Snook and Motl, 2009) and qualitative studies of group-based training in individuals with MS (Carling, Nilsagård, and Forsberg, 2018;Clarke and Coote, 2015). Targeted hands-on adjustments, combined with instructions and engagement, were emphasized as essential for experiencing bodily improvements.…”

“…Studies on users' experiences from group-based exercise programs for individuals with MS have reported social benefits (Dodd, Taylor, Denisenko, and Prasad, 2006), improvements in daily activities, and increased body confidence (Carling, Nilsagård, and Forsberg, 2018;Van Der Linden et al, 2014). Training in groups is a motivational factor for empowerment, improved energy, reduced fatigue, and the gaining of knowledge in self-assisted training (Clarke and Coote, 2015). A review of qualitative studies of individual interventions revealed similar positive findings; however, commonly perceived adverse consequences were increased fatigue and feelings of frustration and lost control (Learmonth and Motl, 2016).…”

Patient reported experiences of using community rehabilitation and/or support services whilst living with a long-term neurological condition: a qualitative systematic review and meta-aggregation

“…Male n=253and female (n=235) participants were represented within the studies. However, the exact number is unknown since four of the studies did not report gender [96,99,103,104]. Opportunities for peer support/social interaction is valued; Coordination is required to ensure continuity during transition to community.…”

Lifestyle, exercise and activity package for people living with progressive multiple sclerosis (LEAP-MS): Protocol for a Single-Arm Feasibility Study.

“…Positive outcomes of regular physical activity include improved mobility, strength and cognition, and reduced fatigue. There are well-established psychological and social bene ts associated with physical activity in MS (9,10).…”