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Engagement in volunteering activities by persons with multiple sclerosis in Switzerland

Open AccessPublished:November 23, 2022DOI:https://doi.org/10.1016/j.msard.2022.104427

      Highlights

      • Almost one third (29.4%) of the survey persons with MS reported volunteering
      • Study participants most often volunteered in cultural and charitable organizations
      • Having a university degree was positively associated with volunteering
      • Being male and being a homemaker increased chances of volunteering
      • Having a lower ability to perform everyday tasks decreased chances of volunteering

      Abstract

      Background

      Informal and formal volunteering engagement is a proxy for social integration and may have beneficial effects for physical and mental well-being in persons with multiple sclerosis (pwMS). As literature on the topic among the pwMS is lacking, this study aimed to determine frequency and type of volunteering performed by pwMS and to identify factors associated with volunteering.

      Methods

      Cross-sectional, self-reported data of 615 pwMS participating in the Swiss Multiple Sclerosis Registry were analyzed using descriptive statistics to determine frequency and type of performed volunteering engagement in various associations or societies. Univariable and multivariable generalized linear models with binomial distribution and log link function were used to identify factors associated with volunteering. Age, sex, employment status and workload and gait disability were added to the multivariable model as fixed confounders. Sociodemographic, health-, work- and daily activity-related factors were included in the analysis.

      Results

      About one third (29.4%) of participants reported engagement in volunteering activities, most often through charities (16.02%) and cultural organizations (14.36%). In the multivariable model, participants who had a university degree were more likely to volunteer (RR = 1.48 95% CI [1.14; 1.91]). The ability to pursue daily activities (as measured by the EQ-5D subscale) was strongly associated with participation in volunteering among pwMS. Compared with pwMS who had no or only slight limitations in daily activities, those with severe problems (RR = 0.41, 95% CI [0.21; 0.80]) were markedly less likely to engage in volunteering. Finally, pwMS who reported caring for and supporting their family (i.e., being a homemaker) were also more likely to engage in volunteering activities (RR = 1.52, 95% CI [1.15; 2.01]).

      Conclusion

      Nearly one in three pwMS engaged in diverse volunteering activities. Having a university degree, and being less limited in daily activities, or being a homemaker increased the probability for pursuing volunteering activities. Contingent on individual-level motivations, resources or physical abilities, pwMS who experience challenges in performing daily activities or social barriers should be made aware of barrier-free offers of socially inclusive and volunteering activities, often provided by the national MS societies and health leagues.

      Keywords

      1. Introduction

      Employment represents a path to social integration and is associated with higher levels of well-being, quality of life and self-esteem in the general population as well as among persons with multiple sclerosis (pwMS) (
      • Krokavcova M
      • Nagyova I
      • Rosenberger J
      • Gavelova M
      • Middel B
      • Gdovinova Z
      • et al.
      Employment status and perceived health status in younger and older people with multiple sclerosis.
      ,
      • Dorstyn DS
      • Roberts RM
      • Murphy G
      • Haub R.
      Employment and multiple sclerosis: a meta-analytic review of psychological correlates.
      ). As multiple sclerosis (MS) progresses and disability accumulates over time, maintaining regular jobs can become increasingly difficult for pwMS, often leading to the loss of employment (
      • Lehmann AI
      • Rodgers S
      • Kamm CP
      • Mettler M
      • Steinemann N
      • Ajdacic-Gross V
      • et al.
      Factors associated with employment and expected work retention among persons with multiple sclerosis: findings of a cross-sectional citizen science study.
      ,
      • Bishop M
      • Rumrill PD.
      Multiple sclerosis: Etiology, symptoms, incidence and prevalence, and implications for community living and employment.
      ). Volunteering can provide a new sense of purpose and usefulness for pwMS (
      • Van Campen C
      • Cardol M.
      When work and satisfaction with life do not go hand in hand: health barriers and personal resources in the participation of people with chronic physical disabilities.
      ).
      Volunteering is defined as any activity in which time is given freely to benefit another person, group or cause (
      • Wilson J.
      Volunteering.
      ). The annual report on volunteering by the Swiss Society for Common Good distinguishes between formal and informal volunteering, the former reflecting unpaid activities in associations or societies, and the latter a direct third-party engagement (
      • Lamprecht M
      • Fischer A
      • Stamm H.
      Freiwilligen-Monitor Schweiz 2020.
      ).
      Almost half (43%) of the adult population in Switzerland pursues formal or informal volunteering activities, often alongside paid work. Such engagements include formal activities in various clubs and societies, charities, churches and informal volunteering activities outside their own household, but within family and friends circles (
      • Lamprecht M
      • Fischer A
      • Stamm H.
      Freiwilligen-Monitor Schweiz 2020.
      ). Literature on frequency or type of volunteering in which pwMS in Switzerland are engaged is lacking. A recent Europe-wide meta-analysis and a subsequent publication from a longitudinal study confirmed that physical ailments and worsening health condition, such as impaired mobility and depression, are more likely to be barriers to volunteering, than chronic diseases such as heart conditions, diabetes, hypertension, or cancer (
      • Niebuur J
      • van Lente L
      • Liefbroer AC
      • Steverink N
      • Smidt N.
      Determinants of participation in voluntary work: a systematic review and meta-analysis of longitudinal cohort studies.
      ,
      • Papa R
      • Cutuli G
      • Principi A
      • Scherer S.
      Health and volunteering in Europe: A longitudinal study.
      ). Therefore, it can be hypothesized that pwMS, who often face mobility difficulties and have a higher risk of depression (
      • Feinstein A
      • Magalhaes S
      • Richard JF
      • Audet B
      • Moore C.
      The link between multiple sclerosis and depression.
      ), engage in volunteering less often than the general Swiss population.
      Socioeconomic status indicators, such as education and income, are known to promote participation in volunteering, with education considered the most robust predictor of volunteering in the general population (
      • Son J
      • Wilson J.
      Education, perceived control, and volunteering.
      ). Available literature provides conflicting evidence on the relationship between sociodemographic factors and volunteering. While a meta-analysis of European volunteers found no differences in volunteering between men and women, there is evidence that men are more likely to volunteer formally and women are more likely to volunteer informally (
      • Niebuur J
      • van Lente L
      • Liefbroer AC
      • Steverink N
      • Smidt N.
      Determinants of participation in voluntary work: a systematic review and meta-analysis of longitudinal cohort studies.
      ,
      • Helms S
      • McKenzie T.
      Gender differences in formal and informal volunteering in Germany.
      ,
      Bundesamt für Statistik (BFS)
      Schweizerische Arbeitskräfteerhebung 2015 (SAKE).
      ). Similarly, no significant association between age and volunteering was found in Europe (
      • Gil-Lacruz AI
      • Marcuello C
      • Saz-Gil I.
      Individual and social factors in volunteering participation rates in Europe.
      ), while in Canada seniors were more likely to volunteer (
      • Hall MH
      • McKeown LE
      • Roberts K.
      Caring Canadians, involved Canadians: Highlights from the 1997 national survey of giving, volunteering and participating.
      ). Factors that promote volunteering may overlap with those that foster social integration, such as socio-economic status, or language and literacy skills (
      • Gracia E
      • García F
      • Musitu G.
      Macrosocial determinants of social integration: Social class and area effect.
      ). However, to the best of our knowledge, there is currently no evidence on factors that promote or hinder the participation of pwMS in volunteering activities. It remains plausible that not only physical ailments but also the severity of impairments and the degree of mobility and independence may be additional important factors for volunteering, especially for pwMS.
      In health-related research, volunteering is often investigated and was shown to contribute to physical and mental well-being, including better self-reported health, lower mortality, and better coping with one's own disease in various populations (
      • Casiday R
      • Kinsman E
      • Fisher C
      • Bambra C.
      Volunteering and health: What Impact Does It Really Have?.
      ). While the benefits of volunteering in the elderly population have been studied extensively, finding that volunteering contributes to improved well-being (
      • Griep Y
      • Hanson LM
      • Vantilborgh T
      • Janssens L
      • Jones SK
      • Hyde M.
      Can volunteering in later life reduce the risk of dementia? A 5-year longitudinal study among volunteering and non-volunteering retired seniors.
      ,
      • Von Bonsdorff MB
      • Rantanen T.
      Benefits of formal voluntary work among older people. A review.
      ,
      • Kahana E
      • Bhatta T
      • Lovegreen LD
      • Kahana B
      • Midlarsky E.
      Altruism, helping, and volunteering: Pathways to well-being in late life.
      ), there are very few studies about the potential benefits for persons with chronic diseases. Volunteering was shown to moderate the relationship between chronic diseases such as diabetes, cancer, heart diseases, or hypertension and the resulting functional limitations (
      • Kail BL
      • Carr DC.
      Successful aging in the context of the disablement process: Working and volunteering as moderators on the association between chronic conditions and subsequent functional limitations.
      ), as well as between chronic pain and well-being, physical activity, depression, and meaning in life (
      • Salt E
      • Crofford LJ
      • Segerstrom S.
      The mediating and moderating effect of volunteering on pain and depression, life purpose, well-being, and physical activity.
      ). Engagement in volunteering was positively related to well-being among the older Swiss adults with a chronic physical disability (
      • Fekete C
      • Siegrist J
      • Post MW
      • Tough H
      • Brinkhof MW
      SwiSCI Study Group. Does engagement in productive activities affect mental health and well-being in older adults with a chronic physical disability? Observational evidence from a Swiss cohort study.
      ) and among the older cancer survivors (
      • Heo J
      • Chun S
      • Lee S
      • Kim J.
      Life satisfaction and psychological well-being of older adults with cancer experience: The role of optimism and volunteering.
      ). Finally, peer volunteering has benefited persons with chronic pain conditions and end-stage renal disease in terms of pain management, depression and purpose in life (
      • Arnstein P
      • Vidal M
      • Wells-Federman C
      • Morgan B
      • Caudill M.
      From chronic pain patient to peer: Benefits and risks of volunteering.
      ,
      • Hwan NL
      • Hussin NAM.
      Volunteering Experience among Older Adults with End-stage Renal Disease (ESRD).
      ). However, our search did not reveal any studies conducted in the population of pwMS or similar neurological debilitating conditions.
      In this study, we aimed to examine engagement in volunteering in adult pwMS living or receiving treatment in Switzerland. More specifically, we aimed to:
      • 1)
        Determine the frequency and type of volunteering activities in which pwMS are involved and compare it to the general Swiss population.
      • 2)
        Identify factors associated with volunteering among pwMS. In particular, we aimed to explore relationships of volunteering with mobility and independence, and socio-demographic characteristics including education, citizenship, or living with a partner.

      2. Materials and methods

      2.1 Study design and participants

      This cross-sectional study used data from the Swiss Multiple Sclerosis Registry (SMSR), a nation-wide registry for adult persons with a confirmed MS diagnosis living or receiving treatment in Switzerland (N = 2,277; status quo: April 6th, 2020). The SMSR is a prospective longitudinal study initiated by the Swiss Multiple Sclerosis Society and conducted by the University of Zurich based on the citizen science approach (https://www.Clinical-Trials.gov identifier: NCT02980640). PwMS were involved in key aspects of the design of the SMSR surveys such as the selection of specific research topics and the development of the questionnaires. Further details on the SMSR design and recruitment are described elsewhere (
      • Steinemann N
      • Kuhle J
      • Calabrese P
      • Kesselring J
      • Disanto G
      • Merkler D
      • et al.
      The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research.
      ,
      • Puhan MA
      • Steinemann N
      • Kamm CP
      • Muller S
      • Kuhle J
      • Kurmann R
      • et al.
      A digitally facilitated citizen-science driven approach accelerates participant recruitment and increases study population diversity.
      ). The SMSR was approved by the Ethics Committee of the Canton of Zurich (PB-2016-00894; BASEC-NR 2019-01027) and all participants signed a written informed consent. The present study focused on volunteering by pwMS and used data on work integration collected in the 18-month follow-up survey, which was first launched in the second half of 2018. Of the 651 participants who responded to the survey, 19 did not answer the question about whether they volunteer and were not included in the present analysis. The analyzed sociodemographic characteristics of the participants were asked in the SMSR baseline survey. A total of 17 persons with missing employment status or sociodemographic variables of interest were excluded from the analysis, resulting in a final sample of N = 615.

      2.2 Outcome variable

      Engagement in volunteering was self-reported and measured using a multiple-choice question "Are you currently engaged in volunteering activities (e.g., volunteering within an association or a society)?" with “Yes” and “No” as response options, thus enabling for a dichotomous outcome variable. If the response was positive, participants were asked to provide information about the area of volunteer activity and time spent volunteering in an open-text field. Two authors (MM and VvW) independently analyzed the free text and categorized the type of volunteering according to the classification used by the Federal Statistical Office in Switzerland (
      Freiwilliges Engagement in der Schweiz 2020
      ). Any disagreements in categorization were resolved by the two coders.

      2.3 Variables of interest

      The following sociodemographic characteristics were considered: age, sex (male or female), nationality (Swiss or non-Swiss), education level (having a university degree or other), marital status (married or not), having children, living situation (alone, with partner, and/or with children, with parents). The health-related characteristics considered for the analysis were: self-reported disability status scale (SRDSS), a validated proxy measure for Expanded Disability Status Scale (EDSS) based on 3 multiple-choice questions on mobility and hereafter referred to as EDSS proxy (
      • Kaufmann M
      • Salmen A
      • Barin L
      • Puhan MA
      • Calabrese P
      • Kamm CP
      • et al.
      Development and validation of the self-reported disability status scale (SRDSS) to estimate EDSS-categories.
      ), health-related quality of life measured by the European Quality of Life 5-Dimension 5-Level version (EQ-5D-5L) and the associated visual analogue scale (EQ-5D VAS) (
      • Herdman M
      • Gudex C
      • Lloyd A
      • Janssen M
      • Kind P
      • Parkin D
      • et al.
      Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L).
      ,
      EuroQol Group
      EuroQol - a new facility for the measurement of health-related quality of life.
      ), MS type, duration of MS since the onset of symptoms, currently receiving disease-modifying therapy, self-reported fatigue, and self-reported depression. Finally, factors related to performing daily activities, such as ability to drive a car and use public transportation, as well as work-related factors (i.e., current employment status and workload (full- or part-time), caring for family members, receiving a disability pension, and having had to change job in the past due to MS) were also considered. Except for the EDSS proxy and EQ-5D scales described above, all variables of interest were obtained by self-report and asked with a single multiple-choice question (e.g., “Have you changed or had to change your job in the last 1-2 years because of MS diagnosis?" with response options of “Yes” and “No”, or “Please indicate the current type of your MS.”, with response options: “Clinically isolated syndrome”, “Relapsing-remitting multiple sclerosis”, “Primary progressive multiple sclerosis”, “Secondary progressive multiple sclerosis”, and “Transition stage”).

      2.4 Statistical analysis

      To address the first study aim, descriptive statistics were used to compare the sociodemographic and health-related characteristics of pwMS who were volunteering at the time of the survey with those who were not. Categorical data were summarized as percentages, and continuous variables were summarized as median and interquartile ranges. The categories of the volunteering areas or institutions through which volunteering activities were conducted were analyzed descriptively only.
      To address the second study aim, the abovementioned variables of interest were assessed in a generalized linear model with binomial distribution and log link function with volunteering as an outcome. Age, sex, employment status, and EDSS proxy were included as fixed confounders. Other variables were added sequentially and maintained in the model if the Akaike Information Criterion (AIC) increased by 2 points or more. In addition to the variables listed above, a two-way interaction between age (categorized in 5 discrete groups) and having children (“Yes” or “No”) was tested. The rationale for testing this a priori defined interaction was that young parents may have less time for volunteering activities. However, this interaction did not reach our pre-defined AIC threshold and was therefore not included in the final model.
      Statistical analysis was performed using Stata 16 (Stata Corp., College Station TX, USA). No imputation or adjustments for multiple testing were performed.

      3. Results

      Data of 615 SMSR participants were included in the analysis, 74.5% of whom were female. The median age [interquartile range] was 51 years [42, 60] and the median MS duration was 11 years [5, 19]. Most of the participants (63.9%) had relapsing-remitting MS (RRMS), 21.2% had primary or secondary progressive MS, while the remainder had clinically isolated syndrome (CIS) or reported experiencing a transition between RRMS and SPMS. Overall, 181 (29.4%) participants were engaged in volunteering.
      Characteristics of the study population are given in Table 1, stratified by engagement in volunteering. Age distribution was similar in the two compared groups. Of 458 women, 126 (27.5%) volunteered, whereas 55 (35.0%) men out of 157 reported volunteering. Women were slightly less represented in the group that volunteered (69.6%) than in the group that did not volunteer (76.5%). Participants who volunteered had a university degree more often than pwMS who did not volunteer (60.8% vs. 48.2%). Almost one third (30.26%) of the Swiss nationals and 7 out of 40 (17.5%) non-Swiss study participants reported volunteering. Both volunteers and those who did not volunteer had equal health-related quality of life, as measured by EQ-5D, but the EQ-5D daily activities subscale differed markedly: 72.9% of the group that volunteered reported no or only slight problems, compared with 60.6% among those who did not engage in volunteering. Furthermore, severe gait disability (as measured by the EDSS proxy ≥ 7) was observed more frequently in the group that reported no volunteering engagement (3.9% vs. 7.6%).
      Table 1Study population, stratified by engagement in volunteering engagement
      No volunteering activities N (%)Volunteering activities N (%)
      N434 (100%)181 (100%)
      Age categories
      18-3565 (15%)23 (12.7%)
      36-4589 (20.5%)36 (19.9%)
      46-55129 (29.7%)55 (30.4%)
      56-6588 (20.3%)44 (24.3%)
      66 and older63 (14.5%)23 (12.7%)
      Female sex332 (76.5%)126 (69.6%)
      Swiss Citizenship401 (92.4%)174 (96.1%)
      Highest education level
      Primary or secondary225 (51.8%)71 (39.2%)
      Tertiary education209 (48.2%)110 (60.8%)
      Civilian status
      not married191 (44%)75 (41.4%)
      Married243 (56%)106 (58.6%)
      Has children250 (57.6%)114 (63%)
      Living situation
      With spouse/partner202 (46.5%)69 (38.1%)
      With family118 (27.2%)60 (33.1%)
      Living alone91 (21%)40 (22.1%)
      Living with parents22 (5.1%)12 (6.6%)
      In clinic / residential home1 (.2%)0 (0%)
      MS type
      RRMS
      = Relapsing remitting MS 2 = Primary progressive MS 3 = Secondary progressive MS 4 = Clinically isolated syndrome 5 = Expanded disability status scale 6 = Disease modifying therapy 7 = As measured with EQ-5D visual analog scale
      272 (62.7%)121 (66.9%)
      PPMS254 (12.4%)17 (9.4%)
      SPMS386 (19.8%)36 (19.9%)
      CIS4 / Transitional form22 (5.1%)7 (3.9%)
      EDSS5 proxy
      0-3.5292 (67.3%)131 (72.4%)
      4-6.5109 (25.1%)43 (23.8%)
      ≥733 (7.6%)7 (3.9%)
      Currently receiving DMT6290 (66.8%)120 (66.3%)
      Experiencing fatigue292 (67.3%)120 (66.3%)
      Experiencing depression69 (15.9%)20 (11%)
      Ability to drive a car
      Yes, standard vehicle292 (68.5%)136 (75.1%)
      Yes, modified vehicle24 (5.6%)13 (7.2%)
      No75 (17.6%)26 (14.4%)
      No driver's license35 (8.2%)6 (3.3%)
      Able to use public transport357 (84.2%)167 (92.3%)
      Employment status (paid work)
      Not working136 (31.3%)63 (34.8%)
      Part-time154 (35.5%)64 (35.4%)
      Full-time77 (17.7%)32 (17.7%)
      Retirement age67 (15.4%)22 (12.2%)
      Caring for family members214 (50.1%)108 (59.7%)
      Disability insurance benefits
      No benefits267 (61.5%)122 (67.4%)
      Partial benefits68 (15.7%)21 (11.6%)
      Full benefits99 (22.8%)38 (21%)
      Had to change work previously because of MS82 (18.9%)27 (14.9%)
      Health-related quality of life index7, median [IQR])80 [54; 90]80 [65; 90]
      EQ-5D-subscale: problems pursuing in daily activities
      No or slight problems263 (60.6%)132 (72.9%)
      Moderate problems114 (26.3%)40 (22.1%)
      Severe or very severe problems57 (13.1%)9 (5%)
      EQ-5D-subscale: selfcare (washing or dressing)
      No or slight problems372 (85.7%)170 (93.9%)
      Moderate problems39 (9%)6 (3.3%)
      Severe or very severe problems23 (5.3%)5 (2.8%)
      Median [IQR] years since MS onset11 [5, 19]12 [5, 20]
      1 = Relapsing remitting MS 2 = Primary progressive MS 3 = Secondary progressive MS 4 = Clinically isolated syndrome 5 = Expanded disability status scale 6 = Disease modifying therapy 7 = As measured with EQ-5D visual analog scale
      As shown in Figure 1, most of the volunteering engagement in pwMS was in the field of social work and within different associations, notably in the field of culture. However, a large diversity in volunteering activities was observed. Additionally, a significant number of participants who volunteered did not indicate the type of activities in which they have been engaged, or the associations do not fall into any of the categories defined. This was the case with, for example, fan clubs or dog sports clubs. In addition, a large number of volunteers among pwMS took part in activities of the MS support groups.
      Figure 1
      Figure 1Distribution of different volunteering activities among all persons engaged in volunteering (N =181). Multiple categories per person were possible.
      Table 2 illustrates point estimates [95% confidence intervals] from univariable (left column) and multivariable (right column) log binomial regression models. None of the four fixed confounding variables (age, sex, current employment status and workload, EDSS proxy) in the multivariable model were statistically significantly associated with volunteering. Participants who had a university degree were more likely to volunteer (RR=1.48; 95% CI [1.14; 1.91]). The ability to pursue daily activities (as measured by the EQ-5D subscale) was strongly associated with volunteering among pwMS. Compared with pwMS who had no or only slight impairments in daily activities, those with moderate (RR=0.72, 95% CI [0.52; 1.00]) or severe problems (RR=0.41, 95% CI [0.21; 0.80]) were less likely to engage in volunteering. Furthermore, pwMS who reported caring for their family (i.e., being a homemaker) were also more likely to engage in volunteering activities (RR = 1.52, 95% CI [1.15; 2.01]). No other variable reached our pre-defined AIC criterion for inclusion in the multivariable model.
      Table 2Log binomial model with volunteering (“Yes” or “No”) as outcome variable. Risk ratios [95% confidence intervals] not including the null value of 1 are printed in boldface. The abbreviation “n.d.” denotes variables that were not included in the multivariable analysis based on our pre-defined AIC criterion.
      Univariable risk ratio [95% confidence interval]Multivariable risk ratio [95% confidence interval]
      Age categories
      18-35Ref.Ref.
      36-451.10 [0.71; 1.72]1.09 [0.70; 1.69]
      46-551.14 [0.76; 1.73]1.12 [0.73; 1.71]
      56-651.28 [0.83; 1.95]1.36 [0.86; 2.15]
      66 and older1.02 [0.62; 1.68]1.12 [0.65; 1.95]
      Female sex (vs. male sex)0.79 [0.61; 1.02]0.76 [0.58; 1.01]
      Swiss Citizenship (vs. other citizenship)1.73 [0.87; 3.43]n.d.
      Completed tertiary education (vs. primary/secondary)1.44 [1.12; 1.85]1.48 [1.14; 1.91]
      Married (vs. not married)1.08 [0.84; 1.38]n.d.
      Has children (vs. no children)1.17 [0.91; 1.51]n.d.
      Living situation
      With spouse/partnerRef.n.d.
      With family1.32 [0.99; 1.77]n.d.
      Living alone1.20 [0.86; 1.67]n.d.
      Living with parents1.35 [0.82; 2.22]n.d.
      MS type
      RRMS
      = Relapsing remitting MS 2 = Primary progressive MS 3 = Secondary progressive MS 4 = Clinically isolated syndrome 5 = Expanded disability status scale 6 = Disease modifying therapy 7 = As measured with EQ-5D visual analog scale
      Ref.n.d.
      PPMS20.78 [0.50; 1.21]n.d.
      SPMS30.96 [0.70; 1.31]n.d.
      CIS4 / Transitional form0.78 [0.40; 1.52]n.d.
      EDSS5 proxy
      0-3.5Ref.Ref.
      4-6.50.91 [0.68; 1.22]1.06 [0.76; 1.47]
      ≥70.57 [0.28; 1.12]0.83 [0.41; 1.69]
      Currently receiving DMT6 (vs. not)0.98 [0.76; 1.27]n.d.
      Experiencing fatigue (vs. not)0.97 [0.75; 1.26]n.d.
      Experiencing depression (vs. not)0.73 [0.49; 1.10]n.d.
      Ability to drive a car
      Yes, standard vehicleRef.n.d.
      Yes, modified vehicle1.11 [0.70; 1.75]n.d.
      No0.81 [0.57; 1.16]n.d.
      No driver's license0.46 [0.22; 0.98]n.d.
      Able to use public transport1.81 [1.11; 2.96]n.d.
      Emloyment status
      Not working / retiredRef.Ref.
      Part-time0.99 [0.76; 1.31]0.92 [0.66; 1.27]
      Full-time0.99 [0.71; 1.40]0.91 [0.59; 1.41]
      Caring for family members1.35 [1.05; 1.73]1.52 [1.15; 2.01]
      Disability insurance benefits
      No benefitsRef.n.d.
      Partial benefits0.75 [0.50; 1.12]n.d.
      Full benefits0.88 [0.65; 1.20]n.d.
      Had to change work previously because of MS0.81 [0.57; 1.16]n.d.
      Health-related quality of life index71.04 [0.98; 1.11]n.d.
      EQ5D-subscale: problems pursuing in daily activities
      No or slight problemsRef.Ref.
      Moderate problems0.78 [0.58; 1.05]0.72 [0.52; 1.00]
      Severe or very severe problems0.41 [0.22; 0.76]0.41 [0.21; 0.80]
      EQ5D-subscale: selfcare (washing or dressing)
      No or slight problemsRef.n.d.
      Moderate problems0.43 [0.20; 0.90]n.d.
      Severe or very severe problems0.57 [0.25; 1.27]n.d.
      1 = Relapsing remitting MS 2 = Primary progressive MS 3 = Secondary progressive MS 4 = Clinically isolated syndrome 5 = Expanded disability status scale 6 = Disease modifying therapy 7 = As measured with EQ-5D visual analog scale

      4. Discussion

      This cross-sectional registry study investigated the frequency and type of volunteering among 615 pwMS in Switzerland, focusing on sociodemographic-, health-, work- and daily activity-related factors associated with volunteering. Our study showed that almost one third of the pwMS volunteered, despite possible physical and cognitive difficulties due to MS. However, the observed frequency of volunteering among the pwMS is lower in comparison to the general population in Switzerland, where almost every second person volunteers (
      • Lamprecht M
      • Fischer A
      • Stamm H.
      Freiwilligen-Monitor Schweiz 2020.
      ). It could be speculated that this discrepancy is due to the physical constraints in pwMS, as it was previously described that functional limitations and physical ailments are negatively associated with volunteering (
      • Niebuur J
      • van Lente L
      • Liefbroer AC
      • Steverink N
      • Smidt N.
      Determinants of participation in voluntary work: a systematic review and meta-analysis of longitudinal cohort studies.
      ).
      Volunteering was most commonly pursued within cultural and charitable organizations. This was not surprising, given the vast number of volunteering organizations associated with charitable causes. Volunteering in sports associations, which is by far the most popular volunteering activity among Swiss men (
      • Lamprecht M
      • Fischer A
      • Stamm H.
      Freiwilligen-Monitor Schweiz 2020.
      ,
      Bundesamt für Statistik (BFS)
      Schweizerische Arbeitskräfteerhebung 2015 (SAKE).
      ), tends to be less popular among Swiss pwMS, which is most probably explicable by the physical constraints in pwMS. Volunteering in the MS-related activities was frequently mentioned by study participants, indicating a strong and supportive local MS community fostered by the Swiss MS Society, as well as the existence of forms of volunteering activities specifically tailored to pwMS.
      While sex was not significantly associated with volunteering in our study, women were slightly less often represented among the volunteers. In contrast to the general population in Switzerland, where 41.4% of men and 44.0% of women volunteer, the percentage of male study participants who volunteered (35.0%) was somewhat higher compared to the percentage of women who volunteered (27.5%) (
      • Lamprecht M
      • Fischer A
      • Stamm H.
      Freiwilligen-Monitor Schweiz 2020.
      ). However, existing literature on the relationship between sex and volunteering in the general population is conflicting. Krause et al. found no differences in secular volunteering involvement (
      • Krause N
      • Rainville G.
      Volunteering and psychological well-being: Assessing variations by gender and social context.
      ), and similar findings emerged from a meta-analysis of longitudinal studies in the European population (
      • Niebuur J
      • van Lente L
      • Liefbroer AC
      • Steverink N
      • Smidt N.
      Determinants of participation in voluntary work: a systematic review and meta-analysis of longitudinal cohort studies.
      ). Contrary to this, in neighboring Germany men were found more likely to engage in volunteering coordinated by an organization, i.e., formal volunteering, while women volunteered informally more often, providing direct help to the individuals (
      • Helms S
      • McKenzie T.
      Gender differences in formal and informal volunteering in Germany.
      ). Similar finding is observed in the Swiss general population, when distinction is made between formal and informal volunteering engagement (
      • Lamprecht M
      • Fischer A
      • Stamm H.
      Freiwilligen-Monitor Schweiz 2020.
      ). The difference in the proportion of volunteers between the two sexes in our study and in the Swiss general population could be due to the fact that our analysis of the frequency of volunteering did not distinguish between informal and formal volunteering, and women may not have recognized their informal volunteering engagements as volunteering.
      The frequency with which various age categories were represented among volunteers did not allow us to discern any particular pattern, nor was age associated with the likelihood of volunteering. This is contrary to the Swiss general population, where a steady increase in volunteering engagement is observed with increasing age, until late life (aged 75 and over) (
      • Griep Y
      • Hanson LM
      • Vantilborgh T
      • Janssens L
      • Jones SK
      • Hyde M.
      Can volunteering in later life reduce the risk of dementia? A 5-year longitudinal study among volunteering and non-volunteering retired seniors.
      ). However, such a trend would hardly be expected among the pwMS, considering that disability-related limitations accumulate over time.
      Education is considered one of the most robust factors associated with volunteering. In the resource theory, education is seen as a human capital that enables volunteering resources, such as skills, time, or financial means, while also allowing for a stronger social network through which individuals are more likely to engage in volunteerism (
      • Son J
      • Wilson J.
      Education, perceived control, and volunteering.
      ,
      • Son J
      • Wilson J
      Using normative theory to explain the effect of religion and education on volunteering.
      ,
      • Wilson J
      • Musick M.
      Who cares? Toward an integrated theory of volunteer work.
      ). In line with these findings, the study participants who had a university degree were significantly more likely to volunteer than those who did not, reflecting similar trends in the Swiss population (
      • Lamprecht M
      • Fischer A
      • Stamm H.
      Freiwilligen-Monitor Schweiz 2020.
      ).
      According to national statistics, 23.3% of foreigners living in Switzerland volunteer, compared to 48.7% of the Swiss nationals (
      Bundesamt für Statistik (BFS)
      Schweizerische Arbeitskräfteerhebung 2015 (SAKE).
      ). Therefore, we would have expected the possession of Swiss citizenship to be positively associated with volunteering. However, the citizenship variable did not meet our AIC-based criteria for inclusion in the multivariable model. It is well known that immigrants are less likely to volunteer (
      • Hall MH
      • McKeown LE
      • Roberts K.
      Caring Canadians, involved Canadians: Highlights from the 1997 national survey of giving, volunteering and participating.
      ,
      • Cappelletti P
      • Valtolina GG.
      The Diversity Value How to Reinvent the European Approach to Immigration.
      ), due to language and cultural barriers, as well as discrimination (
      • Cappelletti P
      • Valtolina GG.
      The Diversity Value How to Reinvent the European Approach to Immigration.
      ). Indeed, only 17.5% of non-Swiss study participants reported volunteering, while nearly one third (30.26%) of the Swiss nationals volunteered. Yet, volunteering can also be seen as a means of faster social and cultural integration into the new country (
      • Handy F
      • Greenspan I.
      Immigrant volunteering: A stepping stone to integration?.
      ). Interestingly, although education was significantly associated with volunteering and differences in frequency of volunteering were observed between groups with and without Swiss citizenship, full- or part-time employment, which is often influenced by education and citizenship (
      • Raggi A
      • Covelli V
      • Schiavolin S
      • Scaratti C
      • Leonardi M
      • Willems M.
      Work-related problems in multiple sclerosis: a literature review on its associates and determinants.
      ,
      • Laganà F.
      Blocked mobility or unemployment risk? Labour market transitions of natives and immigrants in Switzerland.
      ), was not significantly associated with volunteering in our study.
      In their meta-analysis of longitudinal cohort studies in the general population, Niebuur et al. (
      • Niebuur J
      • van Lente L
      • Liefbroer AC
      • Steverink N
      • Smidt N.
      Determinants of participation in voluntary work: a systematic review and meta-analysis of longitudinal cohort studies.
      ) found a negative relationship between functional limitations and volunteering. In addition, they found that socioeconomic status determined participation in volunteering. In our study, gait disability as measured by the EDSS proxy, five different EQ-5D subdomain questions, limitations in the use of public transport, and the lack of ability to drive a car were considered proxies for functional limitations. However, of all these variables, only the question on the EQ-5D subdomain “Problems in pursuing daily activities” met the AIC criterion for multivariable model inclusion (in addition to the EDSS proxy, which was a fixed confounder).
      Persons who reported care for their family were more likely to pursue volunteering. The interpretation of this finding is complex and may touch upon at least three dimensions: first, pursuing housekeeping tasks imply the physical abilities to do so. Second, it may be a proxy for reduced or no formal, paid work and thus potentially more time for volunteering engagements. Third, it may reflect social or altruistic attitudes and values that make persons more amenable to other altruistic engagements, such as volunteering. Of note, our multivariable analysis includes variables that control for the first two proposed effects, namely EDSS proxy, as a measure of gait disability, the EQ-5D activity subdomain and employment status, thus leveraging credence for the third hypothetical explanation.
      Finally, several variables in the multivariable model were only nominally associated with volunteering in an expected way. For example, full-time employment or more severe gait disturbances were negatively, but statistically insignificantly associated with volunteering. However, since part-time employment was reported much more frequently than full-time employment, lack of free time to pursue volunteering due to full-time employment may have presented less of a barrier to volunteering in the surveyed group of pwMS.

      4.1 Practical and research implications

      Our findings suggest that nearly one in three pwMS engage in diverse types of formal and informal volunteering. The lack of clear association between volunteering activities and physical impairment or health-related quality of life is, at first glance, somewhat surprising. A previous SMSR study found that the employment and job retention were strongly associated with MS-related symptoms and impairments (
      • Lehmann AI
      • Rodgers S
      • Kamm CP
      • Mettler M
      • Steinemann N
      • Ajdacic-Gross V
      • et al.
      Factors associated with employment and expected work retention among persons with multiple sclerosis: findings of a cross-sectional citizen science study.
      ). The absence of analogous findings in our study may be explained by the fact that many pwMS were involved in MS-related activities or peer support, which are actively supported and promoted by the Swiss MS Society.
      Studies in persons with other chronic diseases, such as diabetes, heart conditions, cancer or chronic pain and chronic disability, report a beneficial effect on general well-being and quality of life in persons who volunteer (
      • Kail BL
      • Carr DC.
      Successful aging in the context of the disablement process: Working and volunteering as moderators on the association between chronic conditions and subsequent functional limitations.
      ,
      • Salt E
      • Crofford LJ
      • Segerstrom S.
      The mediating and moderating effect of volunteering on pain and depression, life purpose, well-being, and physical activity.
      ,
      • Heo J
      • Chun S
      • Lee S
      • Kim J.
      Life satisfaction and psychological well-being of older adults with cancer experience: The role of optimism and volunteering.
      ,
      • Arnstein P
      • Vidal M
      • Wells-Federman C
      • Morgan B
      • Caudill M.
      From chronic pain patient to peer: Benefits and risks of volunteering.
      ,
      • Hwan NL
      • Hussin NAM.
      Volunteering Experience among Older Adults with End-stage Renal Disease (ESRD).
      ). Although some of these studies describe improvement in symptoms such as pain after volunteering, it remains largely unclear whether volunteers are able to engage in these activities because they are in good health, or whether volunteering truly leads to improvements in well-being. While we were unable to investigate such potential, beneficial effects in our study, it is plausible that they exist in pwMS as well. Therefore, providing opportunities and support for volunteering engagements by pwMS may not only lead to a contribution to society and further social integration, but can also improve the personal well-being of pwMS.
      At the same time, imposing implicit or explicit pressure on pwMS to volunteer must be avoided. Individuals with a high symptom burden or impaired ability to pursue daily activities may lack the physical or mental energy and resources to engage in volunteering activities. Also, volunteering should not be seen as a substitute for paid work, and increased efforts to retain pwMS in the primary labor market remain critical to improving the social integration and financial stability of persons with MS. A previous analysis of the same study population emphasized the importance of adequate job resources (e.g., autonomy or social support) and well-adjusted management of job demands (e.g., time pressures) as critical factors for job retention (
      • Lehmann AI
      • Rodgers S
      • Kamm CP
      • Mettler M
      • Steinemann N
      • Ajdacic-Gross V
      • et al.
      Factors associated with employment and expected work retention among persons with multiple sclerosis: findings of a cross-sectional citizen science study.
      ).
      In terms of opportunities to engage in volunteering activities, regional support groups, organized and offered by MS societies, can play an important role. Furthermore, many pwMS try to maintain their social and cultural activities after the diagnosis. Therefore, societies, clubs, or charitable and non-profit organizations also play an important role in the integration and participation of pwMS and should be supported by the private sector and by political decision makers.

      4.2 Study limitations

      This study has several limitations. All information is based on self-reported data, which may be prone to reporting biases such as underreporting or social desirability. Furthermore, since the survey did not use a strict definition of volunteering, participants were free to decide for themselves what they understood by volunteering. On the other hand, this openness may have provided a better overview of the types of volunteering engagements. Follow-up studies, possibly qualitative in nature, could build on these findings and further explore, for example, the barriers and facilitators as well as the benefits of volunteering engagements. Due to the cross-sectional design of our study, no conclusions could be drawn on the causal relationships between volunteering and variables of interest.

      5. Conclusions

      Nearly one in three pwMS engaged in diverse volunteering activities, many of which promote social integration. The factors associated with volunteering among pwMS were similar to those in the general population. Having a university degree, being able to pursue daily activities and being a homemaker were positively associated with pursuing volunteering activities. Contingent on individual motivation, resources and physical abilities, persons with more severe impairments, and reduced mobility (both in terms of gait problems and impaired ability to use private and public transport) may benefit from additional information and support efforts to advertise and enhance accessibility to volunteering.

      Funding

      SMSR is funded by the Swiss MS Society.

      CRediT authorship contribution statement

      Mathias Mettler: Conceptualization, Methodology, Investigation, Formal analysis, Writing – review & editing. Mina Stanikić: Conceptualization, Methodology, Investigation, Writing – original draft, Writing – review & editing. Urban Schwegler: Writing – review & editing, Investigation. Chloé Sieber: Writing – review & editing, Investigation. Vladeta Ajdacic-Gross: Writing – review & editing, Investigation. Stephanie Rodgers: Writing – review & editing, Investigation. Christina Haag: Writing – review & editing, Investigation. Chiara Zecca: Writing – review & editing, Investigation. Pasquale Calabrese: Writing – review & editing, Investigation. Susanne Kägi: Writing – review & editing, Investigation. Irene Rapold: Writing – review & editing, Investigation. Viktor von Wyl: Conceptualization, Methodology, Investigation, Formal analysis, Writing – original draft, Writing – review & editing, Supervision.

      Declaration of Competing Interests

      Mina Stanikić reports employment by Roche branch in Serbia, Roche d.o.o., from February 2019 to February 2020. The employer of Chiara Zecca receives support for advisor activities, speaking or grants from Celgene, Genzyme, Lilly, Merck, Novartis, Roche, and grants from Abbvie, Almirall, Biogen Idec, Celgene, Genzyme, Lilly, Merck, Novartis, Roche, Teva Pharma. Pasquale Calabrese has received honoraria for speaking at scientific meetings, serving at scientific advisory boards and consulting activities from Abbvie, Actelion, Almirall, Bayer-Schering, Biogen, EISAI, Lundbeck, Merck Serono, Novartis, Sanofi-Aventis and Teva. He also receives research grants from the Swiss Multiple Sclerosis Society (SMSG), and the Swiss National Research Foundation. Mathias Mettler, Urban Schwegler, Chloé Sieber, Vladeta Ajdacic-Gross, Stephanie Rodgers, Christina Haag, Susanne Kägi, Irene Rapold and Viktor von Wyl declare no competing interests.

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