Qualitative perspectives on aquatic exercise initiation and satisfaction among persons with multiple sclerosis

Abstract

Communication regarding local aquatic opportunities is critical for ensuring aquatics engagement among persons with MS. Providers could play a stronger role in emphasizing the feasibility and benefits of aquatic programs. In addition, persons with MS should be encouraged to try local MS and more generalized aquatic programs in order to identify a program matching their social and physical goals. Implications for Rehabilitation Directed communication regarding aquatic opportunities is essential to prompting the initiation of aquatic exercise Both MS-specific and general aquatics classes can provide positive exercise experiences for persons with MS A history of regular exercise or aquatic experiences is not a prerequisite for the initiation of aquatic exercise among persons with MS Health care provider visits may represent missed opportunities for promoting aquatics; providers should consider the suitability of aquatics for all patients with MS, regardless of the patient's exercise history.

‘It struck at the heart of who I thought I was’: A meta‐synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

“…20,22,35,45,[48][49][50] Their MS symptoms were often referred to as 'invisible', obliging them to assert the impacts of MS on daily life and to help others understand a hidden disability. 14,20,22,[33][34][35]48,[50][51][52] Conversely, while information was welcomed by most, some described being bombarded, 17,53 inundated, 54 and overwhelmed 38 by advice and disease details. In response, some chose to manage anxiety about the future by only researching those symptoms that were of current concern to them.…”

“…These included bladder symptoms, 44 pain, 58 fatigue, 34,51,60,61 spasticity, 62 speech problems, 63 balance disturbances, 43 and cognitive and mood changes. 64 This unpredictability caused worry, 43,44,53 made it difficult to plan, 38,43,44,53,58,60 and disrupted valued roles and activities, 22,38,43,44,53,58,60,62 and everyday routines. 22,43,44,62 Lack of certainty about treatment effectiveness, including impact on clinical course, made it difficult to make decisions about which treatments to choose, especially considering potential significant side-effects and impact on quality of life.…”

“…35,63,[66][67][68][69][70][71] Many studies highlighted the impact of MS on people's careers and employment. 9,43,50,53,59,63,[72][73][74][75] The presence of supportive structures and environments at work were factors influencing whether people living with MS chose to remain in employment or not. 59,75 Disclosing or concealing a diagnosis was an important consideration in maintaining a sense of identity and avoiding stigma.…”

“…Managing fatigue required constant planning and pacing of tasks to accommodate the anticipated fatigue-related after effects. 12,13,31,43,49,53,60,61,66 It was described in terms of its impact on work, 20,51,53,72,77,78 social life, 20,47,51,53,[77][78][79] family life 14,20,47,51,53,54,77,78,80 and physical and psychological health. 16,18,49,78 People with MS described feelings of frustration about the limitations that fatigue imposed on their lives and the resulting loss of spontaneity.…”

“…40,48 This was influenced by an overall perceived lack of legitimacy 40,42 of invisible symptoms, and experiences of having to repeatedly explain or justify limitations to friends, family and workplaces, 33,42,48,52 to fight for needs from health professionals and government organizations, 33,36,40,52 and the need to regularly re-establish relationships with rotating or changing health-care providers. 40,48 Lack of community understanding about MS fatigue was recognized 22 with people reporting feelings of guilt, 20,53 unreliability 20,50,53 and being perceived as lazy 20,22,57 when they were unable to meet work and social commitments due to fatigue.…”