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

Hindawi Publishing Corporation Rehabilitation Research and Practice Volume 2015, Article ID 123494, 7 pages http://dx.doi.org/10.1155/2015/123494 Research Article Perceptions of Participants in a Group, Community, Exercise Programme for People with Multiple Sclerosis Rosemary Clarke and Susan Coote Department of Clinical Therapies, University of Limerick, Limerick, Ireland Correspondence should be addressed to Susan Coote; Received 17 July 2015; Accepted 30 August 2015 Academic Editor: Eric Kerckhofs Copyright © 2015 R. Clarke and S. Coote. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. 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. 1. Introduction Multiple sclerosis (MS) is a chronic debilitating disease of the central nervous system (CNS). It is characterised by the two simultaneous processes, inflammation leading to demyelination and degeneration of neuronal axons, resulting in the disruption of axon potentials in the brain and spinal cord [1]. Depending on the area of the CNS affected MS can cause a multitude of motor, sensory, visual, psychological, sexual, and bladder and bowel symptoms. While there have been significant advancements in the range and efficacy of pharmacological interventions to reduce the number and severity of relapses, there remains no cure for MS. It is therefore essential that we develop and evaluate interventions that reduce symptoms and improve quality of life for people living with MS. Exercise is one modality for which there has been a significant paradigm shift over the last 2 decades. Previously it was thought that exercise may exacerbate symptoms; however, we now have an ever increasing body of evidence to suggest that it is not only safe but also effective at many levels [2–7]. Meta-analyses on the effect of exercise found that cumulatively there is a positive effect on QOL [8, 9] and walking mobility [10]. Additionally, there is increasing evidence for the effectiveness of exercise on fatigue [11, 12] and depression [13]. Qualitative studies can be a useful way of exploring the benefits of exercise programmes from the perspective of participants. Several previous qualitative evaluations of exercise for people with MS were found. Dodd et al. [14] used semistructured interviews of people who completed their 10-week progressive resistance exercise training, while Learmonth et al. [15] and Aubrey and Demain [16] used focus groups evaluating community exercise programmes. The common themes emerging from these papers’ data were that physical, psychological, and social benefits were derived from the programme and that the group setting had many positive aspects. Participants also reported reductions in fatigue and feeling stronger at the end of the programme. Smith et al. [17] explored the influence of exercise on fatigue perceptions in people with MS who took part in an individual 2 aerobic and strengthening programme for 8 weeks. Their participants perceived both positive and negative influences of the intervention on fatigue. These qualitative studies added to the quantitative findings and provided a richer perspective about the outcome of the intervention. The purpose of this study was to explore the perceptions of participants of 10 weeks of group exercise in the community which was part of a multicentre, randomised, and controlled trial known as Getting the Balance Right [18]. The addition of a qualitative evaluation to quantitative measures in a RCT is advocated by the Medical Research Council in their guidance on evaluating complex interventions [19]. In this case, the aim was that the qualitative data would assist in understanding factors affecting participation, explore other effects not captured by the quantitative data, and would aid implementation into everyday practice through an understanding of the intervention from the perspective of users. 2. Study Design A pragmatic programme evaluation approach using qualitative research design was adopted. Focus groups were used as a tool to gather the opinions of a selection of participants from the main study. Focus groups are particularly useful as they allow participants to clarify and distil ideas during the process as well as enabling them to voice opinions and raise aspects not previously considered by the researcher [20, 21]. Purposeful sampling was employed to identify participants in the RCT who attended programmes in Limerick during the time frame of the study. Information leaflets were distributed either in person at the postintervention quantitative assessment or by post. Those interested consented to sharing their contact details with the investigator who then telephoned them to schedule an appointment. The participants in this qualitative study all used at most a stick to walk outdoors (Guy’s Neurological Disability Scale [22] mobility section score of 0, 1, or 2) and were block randomised to exercise in groups in the community led by physiotherapists or fitness instructors. The protocol for the RCT has been described in detail previously [18]. Both physiotherapy and fitness instructor interventions consisted of similar combined strength and aerobic exercise, in the community, once weekly for 10 weeks. 3. Participants A convenience sample of 14 individuals agreed to participate in the focus groups. Group A consisted of 5 people who had together completed the PT led intervention three months before the focus group, group B 6 people who had together just concluded their fitness instructor led programme, and group C 3 people (...truncated)