Correlating the Physical Activity Patterns of People with Moderate to Severe Multiple Sclerosis Disability and Their Family Caregivers

Abstract

Purpose: People with multiple sclerosis (PwMS) and their family caregivers often react to the impact of the disease as an interdependent dyad. The aim of this exploratory study was to examine interdependence in the physical activity (PA) patterns of dyads affected by moderate to severe MS disability. Method: A total of 15 pairs of PwMS and their family caregivers wore accelerometers for 7 days. By collecting data simultaneously from both partners, we tested interdependence using the dyad as the unit of analysis. Results: PwMS and caregivers averaged 4,091.3 (SD 2,726.3) and 6,160.2 (SD 1,653.0) steps per day, respectively. The mean number of minutes per day of sedentary, light, and moderate to vigorous activity for PwMS was 566.3 (SD 97.7), 167.4 (SD 94.0), and 7.6 (SD 12.4), respectively, and 551.9 (SD 92.4), 199.6 (SD 63.4), and 21.4 (SD 18.2), respectively, for caregivers. Interdependence between dyads for sedentary, light, moderate to vigorous activity, and step count was low and non-significant (rs=0.20, 0.26, 0.13, and –0.27, respectively; p>0.05). Conclusions: Although our findings do not support the interdependence of PA between caregivers and care recipients with MS, they do show that both partners are not engaging in sufficient PA to achieve important health benefits. These findings are important because they indicate that the dyads are likely to benefit from interventions for changing PA behavior.

A concerns report survey of physical activity support needs of people with moderate-to-severe MS disability and family caregivers

“…Despite models such as the Developmental Contextual Coping Model [10], few researchers have included both people with moderate-to-severe MS disability and their caregivers together as active participants in physical activity studies [9,19]. Current literature is also lacking as to what factors influence co-participation (i.e., people with MS and their caregivers together) in physical activity.…”

Multiple sclerosis caregiving: A systematic scoping review to map current state of knowledge

“…Questionnaires, structured interviews (telephone or face‐to‐face) or online surveys were the most common method of data collection ( n = 78, 72.2%), followed by qualitative interviews or focus groups ( n = 20, 18.5%). Other methods used included accelerometry (Fakolade et al., 2018), diaries (Carton et al., 2000; Kleiboer et al., 2006), photovoice (Topcu et al., 2021), secondary analysis of national survey data (Mitchell et al., 2015) and clinical assessments (Bassi et al., 2014, 2016).…”

“…Sixteen studies reported some type of information about the tasks caregivers were performing in their role (Acaster et al., 2013; Akkus, 2011; Aronson et al., 1996; Bassi et al., 2019; Bayen et al., 2015; Buchanan et al., 2009; Carton et al., 2000; Fakolade et al., 2018; Finlayson & Cho, 2008; Forbes et al., 2007; Gregory et al., 1996; Hughes et al., 2013; McCurry, 2013; O'Brien, 1993a, 1993b; Sato et al., 1996). Most often, this information was reflected as yes/no response to a list of tasks, the total number of tasks done, the number of minutes providing care per day, or some type of qualitative description.…”

Objectively-assessed physical activity and self-reported activity pacing in adults with multiple sclerosis: A pilot study

“…Regular participation in physical activity is considered a central component of a healthy lifestyle for people with multiple sclerosis, being associated with improvements in multiple sclerosis fatigue symptoms, quality of life and maintenance of physical function. 1 – 5 However, the experience and expectations of fatigue sensations in relation to physical activity can be a disabling symptom in people with multiple sclerosis and draws several activity engagement strategies. 6 – 9 These include reduced activity levels resulting from and in anticipation of fatigue, and engaging in too many or prolong periods of activities when feeling better, resulting in worsening of fatigue symptoms and then needing to rest or be inactive for prolonged periods to recover.…”