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Though they fluctuate, hope and positivity comfort people with multiple sclerosis as their circumstances change and they progress toward end-of-life discussions and planning.

Perspectives on End of Life and Medical Assistance in Dying From Saskatchewan People With Multiple Sclerosis

Care partners support many individuals with multiple sclerosis (MS), but little is known about the support they themselves rely on. This study sought to characterize the support networks used by MS care partners and to identify key characteristics associated with support network size.

Fifteen MS care partners completed an online survey. Individual, semistructured interviews captured care partner support network content. Data were analyzed using descriptive statistics, and correlation coefficients were used to characterize associations between network size and variables of interest.

Participants were predominantly women (n = 13, 86.7%) with a mean age of 50.8 (SD = 11.8) years, and reported a median care-recipient Patient-Determined Disease Steps (PDDS) score of 5. Support networks contained a median of 12 different sources of support (range, 8-27). Friends and family members were the most common support sources, reported by 14 (93.3%) and 11 care partners (73.3%), respectively. Next were friends or family of care recipients (n = 9, 60.0%), and the care recipients themselves (n = 9, 60.0%). Only care partner resilience (

 = .009) were associated with support network size.

Natural supports (ie, friends, family members) were common and important components of care partner support networks. Care recipients were often important members of support networks, highlighting the dyadic disease experience. Findings emphasize the relationship between having support and maintaining resilience among MS care partners. Future efforts to implement novel sources of support must consider existing support networks and the characteristics of individual care partners that are most likely to ensure support uptake and efficacy.

From the Interdisciplinary School of Health Sciences (KLC, NM) and the Brain and Mind Research Institute, Faculty of Medicine (LASW, LAP), University of Ottawa, Ottawa, Ontario, Canada; The Ottawa Hospital Research Institute, Ottawa, Ontario, Canada (LASW); School of Rehabilitation Therapy, Queen’s University, Kingston, Ontario, Canada (AF); and Providence Care Hospital, Kingston, Ontario, Canada (AF). 

Lara A. Pilutti, PhD, Interdisciplinary School of Health Sciences, University of Ottawa, 200 Lees Ave 518D, Ottawa, Canada K1N 6N5; 

The authors declared no conflicts of interest.

Many individuals with multiple sclerosis (MS) accrue physical and cognitive disability that interfere with their ability to complete daily tasks.

 As a result, about one-third of individuals living with MS require assistance from a friend or family member to live independently.

 Going forward, these individuals will be referred to as 

MS care partners complete various tasks to support their care recipients, ranging from basic care tasks (eg, clothing, feeding) to household management and planning.

 Collectively, care partners are responsible for delivering approximately three-quarters of MS-related care.

 Care partners, however, often report heightened levels of stress, burden, and social isolation as a result of their caregiving role, which can have negative impacts on life satisfaction and quality of life.

 Although common, negative outcomes are not universally experienced by MS care partners.

 Some report maintaining high levels of well-being despite mounting care demands, and others experience benefits from their role.

 Notably, however, many MS care partners in Canada report low levels of resilience compared with other caregiving cohorts, suggesting that they may have difficulty maintaining their well-being amid extensive care demands.

 A potential strategy to promote MS care partner well-being and foster positive caregiving outcomes may be to bolster their resilience.

Resource access is an important component of stress appraisal and is implicated in resilience pathways.

 Care partners who feel more supported may experience less stress and feel less overwhelmed in their role.

 However, MS care partners report widespread unmet support needs.

 While support preferences and barriers to resource access have been identified among generalized caregiving populations,

 MS care partners are often overlooked as a distinct population.

 Their unique demographic (ie, younger, more often male) and context (ie, long-term, progressive, unpredictable caregiving role) create a distinct set of challenges, needs, and preferences.

 Thus, MS care partners may require different supports.

The need for additional support for MS care partners is clear. However, little work has been done to assess MS care partner support networks. Networks of natural supports (eg, friends, family) and formal supports (eg, service providers, support groups) are highly dependent on care partners’ characteristics, needs, and preferences.

 The lack of knowledge surrounding existing care partner support use limits our ability to understand their needs and to ensure the efficacy of future resources. The aims of the present study were to characterize the support networks used by MS care partners living in Canada and to identify key characteristics associated with support network size.

This study involved quantitative, cross-sectional, online surveys and qualitative semistructured interviews of MS care partners living in Canada. Surveys were delivered via an institutional SurveyMonkey platform (Momentive). Participants were provided with detailed information about the study and prompted to provide consent online before proceeding to the survey questions. Interviews were conducted using Microsoft Teams (Microsoft Corporation). All participants provided oral consent prior to the interviews. The study protocol was approved by the University of Ottawa Health Sciences and Science Research Ethics Board [H-07-23-9269].

Participants were recruited between January 2024 and March 2025 via recruitment flyers, online materials distributed through the MS Canada research portal, social media outlets, care partner support groups, and by contacting individuals who had expressed interest in future research opportunities with our team. Eligible participants were 18 years ad older, currently residing in Canada, able to complete the study in English, able to access an internet-enabled device, and currently providing unpaid support to someone living with MS.

The online survey captured care partner demographics, characteristics, and role. Demographic variables included age, sex, geographic area (eg, rural, urban), educational level, and employment status. Characteristics included care partner resilience, measured with the 25-item Connor-Davidson Resilience Scale;

 perceived social support, measured with the 12-item Interpersonal Support Evaluation List;

 personality, measured using the brief version of the Eysenck Personality Questionnaire with subscales for extraversion and neuroticism;

 and sense of coherence, measured using the Sense of Coherence 29-item scale.

The caregiving role was characterized by the care partner’s relationship to their care recipient (eg, spouse, sibling, child), minutes per day of care provided, and years spent providing care. Care partner–reported Patient-Determined Disease Steps (PDDS) score was collected to describe the disability level of care recipients.

 Types of tasks completed by care partners were characterized using the Caregiving Tasks in Multiple Sclerosis Scale (CTiMSS).

Information about support was elicited through online semi-structured interviews with each participant conducted by the first author (K.C.). Results from the qualitative interviews will be reported elsewhere. Interviews followed a broad net-mapping framework,

 wherein care partners were asked to recall the support means they used in their caregiving role, as well as the relative importance and closeness of those supports. A broad definition of what constitutes support was provided, and care partners were encouraged to name any support they believed to be relevant. Next, care partners were asked to indicate the relative importance of each support to their caregiving role and personal well-being using a scale from 1, 

. Closeness was indicated by placing resources on a digital map of support networks, with the care partner placed in the middle of the digital map. A broad definition of closeness was provided to care partners that included both a practical sense of proximity (ie, the frequency of support use and ease of support access) and the emotional sense of attachment felt between the care partner and the support. Supports that care partners felt closest to were placed closest to them on the digital map, while resources that they felt distant from were placed farther away. A sample network map is shown in 

Data were downloaded from SurveyMonkey and checked for accuracy and completeness. Demographic and scale variables were summarized using descriptive statistics. An overall network support structure was created to summarize the number, importance, and closeness of the supports identified by MS care partners. The number of supports was quantified for each
participant, and mean importance values were calculated for each support (ie, friend, home care, etc). Pearson 

 coefficients were calculated to determine the relationships between scale variables and reported network size. Thresholds for small, medium, and large correlational effects were set at 0.1, 0.3, and 0.5, respectively.

value less than .05. Statistical analyses were conducted using Excel (Microsoft) and SPSS Statistics 29.0 (IBM). 

A full overview of sample characteristics will be published with the qualitative interviews. 

 summarizes key sample demographics. Participants (n = 15) were predominantly women (n = 13, 86.7%), reported a mean age of 50.8 years (SD = 11.8), and were the spouse of their care recipients (n = 11, 73.3%). Participants had been providing care for 11.8 (SD = 8.4) years on average and reported a median PDDS score of 5.0 among their care recipients, corresponding with unilateral support use.

A representative overview of participant support networks is presented in 

. Overall, participants reported a median of 12 supports within their network (range, 8-27). Friends were the most frequently reported source of support (identified by 14 care partners; 93.3%), followed by family members of the care partner (n = 11, 73.3%), friends or family of care recipients (n = 9, 60.0%), and the care recipient themselves (n = 9, 60.0%). Support groups were named by 9 care partners (60.0%), while psychotherapists or counselors were reported by 8 care partners (53.3%). Internet-based resources were common (n = 9, 60.0%), including social media (n = 5, 33.3%), the internet at large (n = 5, 33.3%), and chat forums (n = 3, 20.0%). Physical activity (n = 5, 33.3%) and hobby groups (n = 4, 26.7%) were also reported. Home care services were used by 6 care partners (40.0%). Health care support like MS clinics (n = 5, 33.3%) and neurologists (n = 4, 26.7%) were less frequently reported, as were family doctors (n = 4, 26.7%). MS-specific organizations were reported by 7 care partners (46.7%), while caregiving organizations (eg, Caregivers Alberta, Family Caregivers of British Columbia) were reported by 3 care partners (20.0%).

Regarding the importance of each support, physical activity, home care services, and care recipients had the highest relative importance, with mean scores of 5.0, 4.7, and 4.4 out of 5, respectively. The lowest-rated supports were neighbors, MS clinics, and MS-related organizations, with mean scores of 2.2, 2.3, and 2.5 out of 5, respectively. Comparative visual analysis of the closeness of supports within care partner support structures depicted inner and outer echelons of support. The inner echelon closest to care partners most often consisted of care recipients, immediate family (ie, parents, spouses, siblings, offspring), home care services, and physical activity. The outer echelon of support, most distant from the care partners, often included caregiving and MS-related organizations and technology, including internet-based supports. The closeness of the remaining support varied among care partners without reflecting a unified pattern across the sample (Figure 2).

A summary of scale measures and their correlations with the number of network supports reported by care partners is shown in 

= .01) had significant correlations with network size. Years of care provided (

= .22) had moderate but insignificant correlations with network size (Table 2).

This study examined the support structures used by MS care partners in Canada. Natural sources of support, such as friends and family, were most frequently reported, whereas physical activity, home care services, and care recipients were the most important supports. There were positive associations between care partner network size and resilience, and negative associations between care partner network size and neuroticism.

The value of natural support networks was evident. While many MS care partners report caregiving as an isolating experience,

 those in the present sample frequently reported friends and family members among the most important sources of support in their networks. Other caregiving populations have described the distinct roles of natural and formal support within support networks, highlighting the need for balance between support types.

 When considering the support needs of MS care partners, care should be taken to assess the presence and suitability of natural support alongside formal support, as friends and family may represent a significant source of assistance and a distinct source of support that formal resources cannot provide. Given the frequency with which MS care partners report difficulty asking for assistance from natural support networks,

 explicit support to overcome barriers to help-seeking behaviors may be warranted. Educational interventions may be helpful to overcome stigma associated with help-seeking behaviors and empower care partners to mobilize needed resources.

 However, environmental changes to the supportive landscape are also required to make pathways to support visible and to minimize accessibility burdens.

Over half of the sample included their care recipients as part of their support network, with care recipients receiving one of the highest importance ratings (mean score, 4.4 out of 5). The dyadic lived experience of MS between individuals with MS and their care partners has been previously documented.

 Enhanced communication and coordination between individuals with MS and their care partners is an important strategy to minimize disease impact.

 Our findings highlight the bidirectional nature of support within MS caregiving relationships. Previous dyadic interventions with other caregiving populations have leveraged the patient–care partner relationship to promote well-being for both parties.

 Our findings suggest that similar interventions promoting healthy dyadic relationships may be leveraged to support MS caregiving dyads as well. Considering the progressive nature of MS, care should also be taken to accommodate potential changes in the capacity of care recipients. While strong dyadic relationships can be beneficial to the well-being of care partners, the progression of MS-related cognitive and physical disability among care recipients may pose a challenge to care partners’ ability to rely on care recipients for support. A measured approach to fostering the interdependence of caregiving dyads should be undertaken alongside encouraging care partners to build robust support networks, which can help ensure that care partners are able to adapt to changes in the dyadic relationship.

Less than half of care partners reported using MS-related organizations as resources, and only 20% of participants reported relying on caregiving organizations. When they were reported by care partners, MS-related organizations and MS clinics ranked among the least important types of support (2.5 and 2.3 out of 5, respectively). Care partners commonly report unmet informational needs to address a range of MS and caregiving-related topics.

 While MS-related and caregiving organizations may be intuitive sources for such information, our sample more often turned to the internet. Although it is easily available, care partners often report concerns about the trustworthiness and reliability of internet-based information.

 Making the information provided by MS and caregiving organizations more visible and readily accessible may be key to ensuring MS care partners receive accurate information.

Neurologists were infrequently reported by participants, but when present in networks, they represented an important source of support. MS clinics and the related supports that they could provide through referrals were similarly infrequent but noted as less important to care partners. Access to consistent neurological care remains difficult for individuals with MS in Canada, as staffing problems and geographical distance often limit patients’ access to comprehensive MS-specific care.

 For care partners, care inaccessibility is compounded by a lack of inclusion within clinics and patient privacy considerations. These challenges may, in part, be responsible for the lack of support from health care professionals within care partner support networks. Clinicians should acknowledge their potential role as support for care partners and, at the discretion of patients, consider explicitly including care partners in care planning.

 Notably, health care providers may act as valuable bridges between care partners and MS caregiving organizations and services that are underrepresented in our findings. Providing tools to help care partners identify and access resources is essential to creating a caregiver-inclusive environment.

Resilience was the only variable with a significant positive association with the size of the care partner support network. This finding is consistent with previous studies examining MS care partner resilience, which have highlighted the importance of social support and resource availability in resilience dynamics.

 Surprisingly, caregiving tasks and minutes per day of care were not associated with support network size, whereas years spent caregiving demonstrated a moderate, but not statistically significant, positive association. Future research should examine the impact of caregiving duration on resource needs and preferences. New care partners may not yet have had the time to acquire the support they need and, therefore, may be at an elevated risk of low resilience levels.

Neuroticism was negatively associated with support network size. Previous studies have found that, in general, individuals with greater neuroticism tend to report fewer positive social connections and greater loneliness.

 Among care partners, neuroticism has been associated with lower resilience and greater burden, stress, and anxiety.

 Consequently, neuroticism may have both direct and indirect effects on care partners’ mental health because of how their personality influences their social support and resilience.

 Supportive interventions for care partners who report high levels of neuroticism may be particularly beneficial for their well-being, but care should be taken to ensure that support is delivered appropriately. Care partners reporting high levels of neuroticism may struggle to identify positive social support in their network and tend to respond less to psychosocial interventions such as counseling.

 Therefore, resources that are accessible independently may be more effective. Future studies should investigate the role of support in the relationship between neuroticism and negative caregiving outcomes.

Our findings must be contextualized within several limitations. First, our sample size was small and demographically homogeneous. Certain care partner perspectives were underrepresented, including men, nonspousal care partners, and those living outside Alberta, British Columbia, and Ontario. Notably, the demographics of the current sample were not representative of the broader MS care partner population in Canada, which has been previously characterized as younger and predominantly male.

 The lack of male care partner perspectives in our findings may have been influential, as they tend to rely on broader networks of social support and may have less knowledge of technology-based supports for caregiving.

 Therefore, our findings may report smaller, more intimate social networks than the broader population and overreport technology use. Men who are caregivers also tend to offload objective burden through the use of practical support more often than women.

 Consequently, the use of practical care support, such as respite and home care services, may be underrepresented by our findings.

Second, the definitions of resources and their importance were dependent on care partners’ interpretations and, therefore, may be incongruent across cases, limiting the comparability and generalizability of findings. Finally, we summarized networks based solely on the number of supports, without directly examining the quality of supports or the complexity of connections within the networks. The presence of highly effective support may have limited the perceived need for additional support; however, the effect of support quality cannot be assessed in the present study.

This study explored the support structures of Canadian MS care partners. Care partners highlighted the importance of natural support networks, including their care recipients. Both resilience and neuroticism were significantly associated with the size of the support network. Future interventions to support MS care partners should recognize the outsized role of natural social networks in providing care and the associations between support and resilience. Moreover, available support must be diverse to accommodate individual care partner preferences and needs.

Friends and family represent an important component of care partner support networks; care recipients are often ranked among the most important means of support.

Components of the Support Networks  of Multiple Sclerosis Care Partners

Despite the benefits of regular physical activity (PA), most adults with multiple sclerosis (MS) are insufficiently active. Identifying the motivational correlates of PA is necessary to facilitate health behavior change. The extent to which the constructs of psychological need satisfaction and motivational regulations associate with self-determined PA in adults with the disease was examined.

Individuals with MS were provided a link to a web-based survey. There were 290 respondents: 242 women and 48 men aged 22 to 71 (mean ± SD, 49.50 ± 12.05) years with primarily mild to moderate mobility impairment who completed the Psychological Need Satisfaction in Exercise scale, the Behavioral Regulation in Exercise Questionnaire, and the International Physical Activity Questionnaire.

Path analysis revealed that PA was best predicted by integrated regulation, competence, and mobility, explaining 28% of the variance in PA behavior. All 3 need satisfaction variables (relatedness, competence, and autonomy) and mobility impairment accounted for 43% of the variance in integrated regulation.

Increasing satisfaction of the need for relatedness, competence, and autonomy can lead to more integrated and internally motivated PA engagement in adults with MS.

From the Department of Rehabilitation and Movement Science, University of Vermont, Burlington, VT, USA (NM, SS, SLK). 

:Susan L. Kasser, PhD, Department of Rehabilitation and Movement Science, University of Vermont, 106 Carrigan Dr, Burlington, VT 05405, USA; 

 The authors declare no conflicts of interest.

Multiple sclerosis (MS) is a neurodegenerative disease that presents with a range of symptoms that coalesce to decrease function

 As such, physical activity (PA) is often recommended,

 especially because regular participation confers a variety of health benefits.

 Benefits of being physically active for individuals with MS include, among other outcomes, improved fatigue, mood, mobility, cognition, and quality of life.

 Despite the value of regular PA, most adults with MS are insufficiently active to derive such outcomes and optimize function.

 In fact, research indicates that individuals with MS are 2.3 times less likely to report that they are meeting the recommended health guidelines of moderate to vigorous PA (MVPA) than individuals without MS.

 In addition, PA levels decline over time,

 which further compounds the problem and worsens symptoms and health.

Considering the low PA participation rates of individuals with MS and the evidence that sedentary behavior is associated with increased risk of comorbidities,

 understanding the motivational underpinnings of PA in this group is necessary. One theoretical approach that is useful in identifying the motivational correlates of PA and facilitating health behavior change is self-determination theory (SDT).

 According to SDT, one’s level of motivation exists on a continuum from intrinsic (engaging in the behavior for its inherent satisfaction) on one end to extrinsic (engaging in the behavior for some other outcome) on the other end. Because many health-promoting behaviors tend to be more extrinsic in nature,

 the extent to which extrinsic motives become more or less autonomous and valued over time depends on the degree to which the behavior is internalized and regulated. The most internalized form of extrinsic motivation is that which is integrated and reflective of behavior that is personally relevant or of value, whereas behaviors that are externally regulated and controlled are initiated in response to some external reward or demand. This is particularly important, given that those with more autonomous and self-determined motivation will experience greater interest, more confidence, and longer behavioral persistence.

 This has also been found to be true for those with MS. Riemann-Lorenz and colleagues

 found that autonomous motivation had a positive effect on long-term PA adherence in those with the disease. Other studies have also highlighted the association between more autonomous motivation and greater PA in this group.

Although these findings are important to our understanding of PA behavior in adults with MS, it is also necessary to understand how motivation becomes more autonomous. From an SDT perspective, the degree to which an individual’s motivation will be more autonomously regulated depends, in part, on the existing social context. Supportive interactions with significant others that satisfy a person’s basic psychological needs for competence, autonomy, and relatedness are most conducive to fostering self-determined motivational regulations.

 In terms of PA, the more individuals experience a higher degree of satisfaction of their needs for competence, autonomy, and relatedness around being active, the more they become self-determined to initiate and maintain their activity behavior. However, few studies have examined autonomy-supportive contexts facilitating the development of internalized and self-regulated motivation for PA in individuals with MS. Kosma

 found that psychological need satisfaction had a large effect on motivation, which, in turn, had a significant association with PA in their study sample. Other research has also shown that autonomy-supportive interactions with spouses offer a context for greater satisfaction of the need for relatedness, competence, and autonomy and facilitate self-determined PA behavior in adults with MS.

Despite numerous studies underscoring the importance of self-determined PA behavior, SDT research examining both internalized and self-regulated motivation simultaneously in adults with MS remains limited. As such, the present study sought to examine the extent to which psychological need satisfaction and motivational regulations associate with PA in adults with MS. With such insight, behavioral change and maintenance interventions can be better conceived and delivered to those with MS, who can benefit from persistent participation in PA.

Individuals with MS were recruited through a regional MS chapter in the northeast United States. An email describing the purpose of the study and providing a link to the web-based survey was sent to those associated with the organization. Participants were informed that their involvement in the research necessitated only 1 completion of the survey and that all information they provide would be anonymous. They were also informed that completion of the surveys was strictly voluntary and that consent was implied from those responding to the survey. Individuals were included if they had physician-diagnosed MS, were 18 years or older, and had the cognitive capacity to complete the online survey. Eligibility was determined via self-reported answers to survey questions that assessed the requisite criteria. Approval for the study was obtained from the University of Vermont institutional review board.

Participants reported their date of birth, sex, year they received a diagnosis of MS, and perceived mobility disability, using the Patient Determined Disease Steps (PDDS) scale.

 Fear of falling was also assessed using the Falls Efficacy Scale–International.

The 18-item Psychological Need Satisfaction in Exercise (PNSE) scale

 was used to assess each of the 3 psychological needs (relatedness, competence, and autonomy) in a PA context. Each item is scored from 1 (false) to 6 (true), with higher scores reflecting greater need fulfillment. The validity and reliability of each PNSE subscale has been documented in exercise.

The Behavioral Regulation in Exercise Questionnaire (BREQ-3)

 was used to measure the reasons why participants exercised. The 24-item questionnaire operationalizes exercise motivation across a self-determination continuum and includes subscales that assess intrinsic, integrated, identified, introjected, external regulation, and amotivation. Participants respond to each item on a 5-point Likert scale, anchored by 0 indicating “not true for me” and 4 indicating “very true for me.” Previous research supports the BREQ’s multidimensional structure and the internal consistency of each subscale.

The International Physical Activity Questionnaire (IPAQ)

 short form was completed to assess the frequency of mild, moderate, and vigorous PA during a typical week. The number of days the individual engages in activity for at least 10 minutes is reported, and the typical amount of time (in minutes) of activity on each of those days is noted. The IPAQ has been routinely used and found to be reliable as a self-report measure of PA in adults with MS.

Data analysis was performed using SPSS Statistics for Windows, version 26.0 (IBM). Observations with missing values were excluded from the analysis. For this study, PA was categorized into 3 levels: (1) inactive, with no reported minutes of MVPA in 1 week; (2) insufficiently active, with 0 to 149 minutes of MVPA in 1 week; or (3) meeting recommended guidelines, with equal to or greater than 150 minutes of MVPA in 1 week.

Subscale reliabilities were obtained using the Cronbach α. Pearson correlations were conducted to determine bivariate associations for continuous variables, and Spearman rho correlations were conducted between the SDT variables of competence, autonomy, and relatedness and exercise behavior.

A multistage path analysis approach was used to determine independent predictors of exercise behavior. This approach adds a relationship structure to the regression analysis that allows the capture of direct and indirect effects and comparison of the magnitudes of influence from each included variable.

 The analysis involved a model respecification method whereby path coefficients that did not meet the criteria of statistical significance and/or meaningfulness were deleted from the model.

 Paths in the model were deleted if: (1) the path regression coefficients were less than 0.05 or (2) the path regression coefficients were less than 0.10 when the path was not meaningful or did not make theoretical sense according to SDT. In this study, 2 regression analyses were performed, one in which PA behavior was regressed on the 5 behavioral regulations, the 3 psychological needs, and any significant univariate correlations between demographic variables and PA, and a second in which any significant behavioral regulation predictors of PA were regressed on the 3 psychological needs and the significant demographic variables. Last, bivariate correlations between demographic variables and the 3 psychological needs were appraised.

Participants included 290 individuals with MS: 242 women and 48 men aged 22 to 71 (mean ± SD age, 49.50 ± 12.05) years. Mean ± SD time since diagnosis was 11.87 ± 8.60 years, with falls ranging from 0 to 25 across the sample. Forty-one percent of respondents reported mild mobility impairment (PDDS score of 1), 34% reported moderate gait disability (PDDS score of 2–4), and 25% had substantial mobility impairment (PDDS score ≥ 5). Only 44.5% of the study sample met the recommended level of 150 minutes of MVPA. 

 provides demographic details of the study participants.

Descriptive data for the variables measured in the study are also in 

. The PNSE subscales of relatedness, competence, and autonomy were found to be highly reliable, with Cronbach α values of 0.95, 0.96, and 0.94, respectively. Reliability of each of the subscales of the BREQ-3 was also found to be high, with coefficients of 0.82, 0.86, 0.84, 0.84, 0.92, and 0.94 for amotivation, external regulation, introjected regulation, identified regulation, integrated regulation, and intrinsic motivation, respectively.

Bivariate correlations among demographic characteristics, SDT variables, and PA behavior are presented in 

, which are published in the online version of this article at IJMSC.org. There was a significant inverse correlation between mobility disability and PA (

 < .01) and between fear of falling and PA (

 < .01), indicating reduced activity levels with increasing walking impairment and fear of falling. Regarding the SDT variables, most correlations were statistically significant and in the expected direction. A significant inverse correlation was found between PA and amotivation (−0.26; 

 < .01), whereas positive and significant associations were observed between PA and introjected regulation (0.15), identified regulation (0.44), integrated regulation (0.44), and intrinsic motivation (0.38) (

 < .01 for all). No statistically significant relationship was found between external regulation and PA. In addition, autonomy was statistically significantly related to all but introjected regulation, relatedness to all but external and introjected regulation, and competence to all behavioral variables. PA was statistically significantly correlated with all 3 of the psychological needs, such that greater fulfillment of these needs related to increased PA.

 presents the final regression model. The overall model explained 28% of the variance in PA behavior (

 < .001), with significant contributions from integrated regulation (β = 0.23; 

 < .05). All 3 need satisfaction variables and mobility impairment accounted for 43% of the variance in integrated regulation (

 < .01), and mobility impairment (β = 0.19; 

 < .01) having significant independent associations. Finally, mobility impairment was significantly and inversely correlated with competence (

Considering the immediate and long-term health benefits of regular exercise participation, understanding how best to increase the reportedly low levels of PA observed in adults with MS is important.

 The present study lends support to promoting more PA in this population. Less than 50% of participants in the present study were meeting recommended levels of health-promoting PA. More concerning, of the 55% of individuals who were not sufficiently active, 23% reported no minutes of MVPA. Most notably, the present findings revealed that along with level of mobility, integrated regulation and satisfaction of the need to feel competent were statistically significantly associated with PA behavior. Moreover, all 3 need satisfaction variables—relatedness, competence, and autonomy—and level of mobility impairment accounted for a meaningful percentage of the variance in integrated regulation.

Although the PA behavior of participants in this study is lower than it is for those without MS,

 it was greater than or comparable with that observed in other MS research.

 The differing levels of reported PA can, in part, be attributed to the mobility limitations accompanying MS. The present results support previous findings that individuals with MS with increasing mobility impairment are not only less active but also engage in less intense activity.

 For participants in this study who met the recommended minutes of MVPA, 48% reported mild mobility impairment (PDDS score of 1), 39% reported moderate mobility impairment (PDDS score of 2–4), and 13% reported more severe mobility impairment (PDDS score of 5–7). In addition to mobility impairment, fear of falling was also statistically significantly associated with whether individuals with MS met the recommended levels of MVPA. This is not surprising, as those with MS who have increased fear of falling often curtail their PA.

 Although correlated with PA, fear of falling did not remain as a statistically significant independent predictor in the path model when considered in combination with the other variables. This was likely because of the significant contribution that motor impairment and mobility difficulties themselves make to fear of falling.

 In addition to being statistically significant, mobility impairment also made sense, given its association with PA.

 the analytical model revealed that each of the 3 psychological needs were significantly associated with behavioral regulation, which, in turn, significantly predicted PA. The SDT variables, along with mobility impairment, explained 28% of the variance in PA. Regarding behavioral regulation, only the more autonomous integrated regulation statistically significantly and independently contributed to PA behavior. It seems that for individuals in the present study, their PA had become more internalized and integrated, whereby they made decisions to engage in this behavior based on internal values and regulations rather than on external ones. In other words, these individuals likely saw being physically active as part of who they are and their identity and felt it personally important to be active. The present findings are similar to those of Fasczewski and Gill,

 who also found a significant and direct contribution of internalized regulation to PA. Although identified regulation (not integrated regulation) was shown to be the best predictor of PA in their study, this difference may likely be a result of the different versions of the BREQ instrument used across the 2 studies rather than the degree of internalization. In their study as well as ours, both external regulation and intrinsic motivation did not have statistically significant effects on PA. This study’s findings also align with those found across the research involving healthy adults. In a systematic review by Teixeira and others,

 there is consistent evidence to support the positive relationship between more autonomous forms of motivation and exercise behavior. It seems reasonable to find that external and introjected forms of motivational regulation did not significantly predict the PA of the present study participants. Previous research has not shown individuals with MS to exercise because of controlled motives.

 Instead, it is likely that participants in this study reflected a more autonomous and self-endorsed willingness to be physically active because of its personal value and utility.

 PA engagement in this group often centers around meeting goals of improved disease management and overall health

 rather than on the expectations of others, or because it is inherently pleasurable.

The present study extends the foundational research on self-determination and PA in those with MS by examining both the motivation and what underpins such motivation. According to SDT, satisfaction of the basic psychological needs for autonomy, competence, and relatedness is considered essential to the development of internalized motivation and behavioral outcomes.

 In the present study, need satisfaction explained 43% of integrated regulation, with satisfaction of the need for competence found as a significant independent predictor. This finding is consistent with the postulates and motivational sequence observed in other SDT research.

 Unlike the present findings, Fasczewski and Gill

 found self-efficacy, along with the SDT motivation constructs, to be a strong predictor of PA, with identified regulation and self-efficacy explaining 20% of the variability in this outcome. In the present model, self-efficacy was not a statistically significant predictor and did not offer anything more to the model, in part because of the statistical approach that differed across the 2 studies. In the previous study, self-efficacy was modeled as a copredictor of PA rather than as a predictor of behavioral regulation, as in the present research. Specifically, SDT posits that the basic psychological needs for autonomy, competence, and relatedness are essential to the development of internal motivation, which then promotes PA. In addition, it has also been shown that self-efficacy does not always associate with PA in individuals with MS

 and that there is a conceptual difference between perceived competence for activity and activity self-efficacy.

 Although self-efficacy centers around the belief that one can execute a specific task within a given circumstance,

 perceived competence is the need to master personally meaningful and challenging tasks by exerting control over one’s environment.

Because behavior that is integrated and internally regulated leads to greater engagement and adherence,

 the present findings highlight the importance of supportive contexts that satisfy the psychological needs for relatedness, competency, and autonomy in facilitating self-determined PA in adults with MS. PA practitioners are well positioned to create motivational climates that support these very needs. Need-supportive contexts are those in which practitioners foster perceptions of belonging and connectedness through the ways in which they conduct their programs and interact with participants, enhance feelings of competence and capability by structuring and scaffolding activities, and promote feelings of autonomy and volition by offering choices around PA. By doing so, they have the potential to enhance the internalized and self-regulated PA motives of those with MS.

Some study strengths and limitations should be noted. This study adds to the current research in MS, as few studies have tested a more complete application of the SDT sequence in a PA context. It is one of the first studies to theoretically test and empirically examine the role of need satisfaction in fostering more internalized forms of behavioral regulation and its association with PA in those with the disease. The study also used a validated measure of PA and, more importantly, examined PA in accordance with the recommended guidelines for health-enhancing outcomes.

Although the present analytical approach corroborated and extended existing research, the study design and model, although informative, were associative, which limits the ability to make causal inferences. In addition, the model was not inclusive of all variables conceived to contribute to self-determined behavior. It has been suggested that other constructs, such as participation motives, orientations, and need-supportive settings and interactions, be included to derive greater understanding and more fully explain the drivers of motivation.

 Another consideration is that PA levels were derived through self-report. Although the IPAQ is often used to measure PA in individuals with MS, subjective reports of moderate and vigorous PA rely on relative intensity, and those who are less fit tend to overestimate.

 Using an objective measure would increase the validity of these results. The study is also limited in its generalizability. The sample underrepresented men and mostly consisted of individuals who reported more mild disability and 0 to 1 fall. Thus, the model and its resultant relationships might not be representative of men and/or others with MS who have greater functional challenges and more falls and/or fear of falling. It might be prudent to explore the SDT model with a larger and more functionally diverse sample to better understand the motivational profiles in these individuals.

In conclusion, despite the acknowledged limitations, the study findings suggest that fostering increased satisfaction of the need to feel relatedness, competence, and autonomy around PA has the potential to promote greater internalized motivation for PA participation in adults with MS. Because individuals are more likely to be self-regulated and autonomously motivated to be physically active in settings where they experience the satisfaction of these needs, practitioners might consider strategies that include multiple contexts and support systems to ensure these needs are met.

Health and physical activity (PA) practitioners who can help foster relevance, competence, and autonomy around PA can enhance the internalized and self-regulated PA motives of individuals with multiple sclerosis.

Motivation for Physical Activity in Adults With Multiple Sclerosis: A Self-determination Theory-Based Approach

Few multidisciplinary rehabilitation studies with a heterogeneous design have focused on individuals with multiple sclerosis (MS). This study compared subjective-reported changes in performance and satisfaction with daily activities among moderately and severely disabled individuals with MS during a 2-year, multidisciplinary, group-based, outpatient rehabilitation program comprising education in self-management and compensatory techniques, exercise, and guided peer support.

Thirty-eight adults with moderate disability (Expanded Disability Status Scale [EDSS] score of 4.0–5.5, 74% women, mean age of 48) and 41 individuals with severe disability (EDSS 6.0–8.5, 63% women, mean age of 48) were assessed at baseline and after 12 and 21 months of outpatient rehabilitation using the Canadian Occupational Performance Measure (COPM). Group × time interactions were analyzed using mixed analysis of variance. Participants’ explanations of reasons for changes in activity performance were collected via semistructured interviews and analyzed content.

Statistically significant improvements in COPM performance and satisfaction scores were reported in both groups from baseline to 21 months of rehabilitation. No significant between-group differences in improvement were observed. The self-reported reasons for improvement were mainly linked to environmental factors.

The outpatient rehabilitation program, including 4 themes—cognition, mood, energy conservation, and body control—improved the self-reported performance of patients with MS with moderate and severe disabilities. Environmental factors warrant consideration during rehabilitation.

From the GeroCenter Foundation for Aging Research and Development (MEK, KK, PE) and Faculty of Sport and Health Sciences (AH), University of Jyväskylä, Jyväskylä, Finland; South-Eastern Finland University of Applied Sciences, Mikkeli, Finland (MEK); Masku Neurological Rehabilitation Centre,Masku, Finland (PH); Finnish Neuro Society, Masku, Finland (PH, JR); University of Turku, Turku, Finland (PH, JR); Department of Physical Medicine and Rehabilitation, Central Finland Health Care District, Jyvaskyla, Finland (AH); and Research Department, Social Insurance Institution of Finland, Helsinki, Finland (A-LS). 

: Maarit E. Karhula, PhD, South-Eastern Finland University of Applied Sciences, Patteristonkatu 3D, 50101 Mikkeli, Finland; email: maarit.karhula@gmail.com.

We thank all the people with MS who participated in this study; the interviewers, Tuija Heiskanen and Maikku Tammisto; and the district coordinators of the Finnish MS Society, Annika Ingves, Anne Huuskonen, and Hannu Kapanen, for their participation in data collection. The study was a part of the first author’s dissertation “Participation of People with Multiple Sclerosis in Everyday Life” published by University of Jyväskylä, Finland.

 The study was performed as a part of a larger project funded by the Social Insurance Institution of Finland, and this work was supported by the Finnish Cultural Foundation’s South Savo Regional Fund.

Multiple sclerosis (MS) is a chronic, progressive, and an unpredictable inflammatory autoimmune disease of the central nervous system.

 Various combinations of problems at the body-function level, such as fatigue, bladder dysfunction, impaired tactile perception, pain, muscle weakness, spasticity, and poor walking balance,

 hinder functioning in everyday life. The International Classification of Functioning, Disability, and Health (ICF) strongly recommends that various environmental and personal factors

 be considered when focusing, planning, and conducting holistic, multidisciplinary MS rehabilitation.

The 2-year, multidisciplinary, group-based, outpatient rehabilitation program similarly improved the performance of everyday activities in individuals with moderate and severe disability.

Loralee Herter

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