Publication
Research Article
Friends and family represent an important component of care partner support networks; care recipients are often ranked among the most important means of support.
Background: 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.
Methods: 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.
Discussion: 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 (r = 0.539, P = .038) and neuroticism (r = –0.65, P = .009) were associated with support network size.
Conclusions: 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). Correspondence: Lara A. Pilutti, PhD, Interdisciplinary School of Health Sciences, University of Ottawa, 200 Lees Ave 518D, Ottawa, Canada K1N 6N5; email: lpilutti@uottawa.ca.
Many individuals with multiple sclerosis (MS) accrue physical and cognitive disability that interfere with their ability to complete daily tasks.1,2 As a result, about one-third of individuals living with MS require assistance from a friend or family member to live independently.2 Going forward, these individuals will be referred to as care partners.
MS care partners complete various tasks to support their care recipients, ranging from basic care tasks (eg, clothing, feeding) to household management and planning.3 Collectively, care partners are responsible for delivering approximately three-quarters of MS-related care.4 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.5-7 Although common, negative outcomes are not universally experienced by MS care partners.8 Some report maintaining high levels of well-being despite mounting care demands, and others experience benefits from their role.9 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.10 A potential strategy to promote MS care partner well-being and foster positive caregiving outcomes may be to bolster their resilience.11
Resource access is an important component of stress appraisal and is implicated in resilience pathways.12,13 Care partners who feel more supported may experience less stress and feel less overwhelmed in their role.12 However, MS care partners report widespread unmet support needs.14,15 While support preferences and barriers to resource access have been identified among generalized caregiving populations,16,17 MS care partners are often overlooked as a distinct population.7 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.8,10 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.16,18 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.
Study Design
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].
Sample and Measures
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;19 perceived social support, measured with the 12-item Interpersonal Support Evaluation List;20 personality, measured using the brief version of the Eysenck Personality Questionnaire with subscales for extraversion and neuroticism;21 and sense of coherence, measured using the Sense of Coherence 29-item scale.22
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.23 Types of tasks completed by care partners were characterized using the Caregiving Tasks in Multiple Sclerosis Scale (CTiMSS).3
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,24 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, least important, to 5, most important. 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 Figure 1.
Figure 1. Support Network Map Example
Data Analysis
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 r 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.25 Statistical significance was set at a P 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. Table 1 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.
Table 1. Demographics and Characteristics of Sample (N = 15)
A representative overview of participant support networks is presented in Figure 2. 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%).
Figure 2. Support Network Visual Summary
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 Table 2. Only resilience (r = 0.54; P = .04) and neuroticism (r = –0.65; P = .01) had significant correlations with network size. Years of care provided (r = 0.45; P = .10), instrumental care tasks (r = 0.41; P = .13), and social support (r = –0.34; P = .22) had moderate but insignificant correlations with network size (Table 2).
Table 2. Overview of Scaled Variables
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,12 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.26 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,27 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.28,29 However, environmental changes to the supportive landscape are also required to make pathways to support visible and to minimize accessibility burdens.28,29
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.6,8 Enhanced communication and coordination between individuals with MS and their care partners is an important strategy to minimize disease impact.30 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.31,32 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.7 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.33 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.34 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.35 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.10,12,36 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.37,38 Among care partners, neuroticism has been associated with lower resilience and greater burden, stress, and anxiety.38,39 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.40 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.41,42 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.10 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.43,44 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.4 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.
Conflicts of Interest: The authors declared no conflicts of interest.
Financial and Material Support: The study received no external funding.
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