“So this is my new life”: A Qualitative Examination of Women Living with Multiple Sclerosis and the Coping Strategies They Use When Accessing Physical Activity

Abstract

<p>The purpose of this study was to explore the lived experiences of women living with multiple sclerosis and their perceived barriers to accessing physical activity. Seven women were invited to complete a background questionnaire and a semi-structured interview to discuss these experiences, and to examine any perceived barriers (i.e., internal and external) that they encountered in relation to physical activity. The key themes that emerged from the interpretive analysis were the apparent importance of: 1) self-management; 2) treatments; and 3) attitude, when accessing such opportunities. The findings suggest that it is important for physicians to understand the patient’s experience of living with multiple sclerosis and the impact of the disease can have on other aspects of their life (e.g., access to physical activity). Acknowledgement of this experience and the issues that these women struggle with on a daily basis could enhance the physician/patient relationship, and encourage a more collaborative effort in terms of establishing an illness management plan for navigating the illness journey.</p>

Physical activity and exercise training in multiple sclerosis: a review and content analysis of qualitative research identifying perceived determinants and consequences

“…Some of the consequences of physical activity and exercise perceived by those with MS mimic the quantitative evidence (e.g. improved aerobic capacity [23][24][25][26][27], balance [27][28][29], depression [26][27][28], muscular strength [26][27][28]30,31] and quality of life [25,26,28,[32][33][34][35]). Yet, qualitative inquiry provides an opportunity for extending our knowledge of the consequences of physical activity and exercise beyond the limitations of items on numerical scales and focal scientific outcomes by telling us, in the person's own words, about the range of perceived consequences.…”

“…Thirteen of these studies used only face-to-face interview methodology [24][25][26]28,[30][31][32][33][34]54,69,70,72], one used faceto-face and telephone interviews [27], one used only telephone interviews [23], and four used focus groups [29,35,68,71]. Interpretative phenomenological analysis [23,31,33,34,70] and more general inductive analytical approaches [24][25][26][27][28][29][30]32,54,68,69] were used in most studies. The remaining three studies used deductive analytical approaches, specifically thematic content analysis [35,71] and phenomenology [72].…”

“…The mean age of participants ranged between 39.2 and 64.5 years (Overall Mean ¼ 46.6, SD ¼ 10.8). Participants' race was only reported in five studies [24,26,29,30,34]; 63 participants were Caucasian and two were Māori. The depth of clinical demographic data varied amongst studies ( Table 1).…”

“…In particular, aspects of the built environment, social influences, one's health condition, and cognitive and behavioral areas have been associated with physical activity and exercise behavior in qualitative and quantitative inquiry [28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43]. Yet, the uniqueness of qualitative inquiry is that much richer and more detailed accounts of these perceived determinants can be identified beyond that identified in quantitative methods.…”

A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis

“…Explorations of help seeking more generally have identified the lengths that many women go to before their symptoms are legitimated (Werner et al 2003), while studies with men have challenged the stereotype of reluctant care seekers, noting how gender intersects with notions of risk and responsibility (Robertson 2006 have identified how women respond to the spatial and temporal changes that disease progression brings by restructuring their roles and activities (Dyck 1995), strategically avoiding physical exertion, and seeking out supportive social relationships (Schneider et al 2010). In contrast, men experience MS as a form of social loss (Kohler-Reissman 2003), and battle against symptoms such as fatigue, which in turn leads to lower self-efficacy than women (Smith 2015).…”