Abstract
This study provides information to occupational therapy clinicians about how persons with multiple sclerosis coped in both positive and negative ways during the COVID-19 pandemic, which will help clinicians to provide better services to this population in the face of stressful events.
Since the spread of coronavirus disease 2019 (COVID-19), social distancing and other pandemic-related societal shutdowns have had negative psychosocial ramifications for most people (Li & Wang, 2020; McQuaid et al., 2021; Venkatesh & Edirappuli, 2020). People with disabilities have experienced increased stressors, such as greater levels of depression, loneliness, and anxiety relative to those who are not disabled (Courtenay & Perera, 2020; Douglas et al., 2020; Nieto et al., 2020; Schorr et al., 2020). Among individuals with multiple sclerosis (MS), an autoimmune disease of the central nervous system that results in a variety of physical and emotional symptoms, the pandemic has led to significant negative psychosocial issues, including depression (Costabile et al., 2020; Motolese et al., 2020) and anxiety (Haji Akhoundi et al., 2020; Stojanov et al., 2020).
Although the majority of COVID-19–related literature has focused on negative outcomes, several studies have detailed how people have found silver linings during the pandemic, including posttraumatic growth or benefit finding (Batra et al., 2020; Prieto-Ursúa & Jódar, 2020; Stallard et al., 2021; Vazquez et al., 2021), increased creativity (Reiter-Palmon et al., 2021), and increased sense of spirituality and meaning (Prieto-Ursúa & Jódar, 2020; Schnell & Krampe, 2020; Tomaszek & Muchacka-Cymerman, 2020). A focus on positive outcomes during the COVID-19 pandemic (as opposed to a focus on only negative outcomes) is critical, because positive outcomes are powerful buffers against stress and anxiety (Morrill et al., 2008; Nowicki et al., 2020). For example, a sense of meaning and positive coping strategies are reported to be protective against COVID-19–related stress (Krok & Zarzycka, 2020; Schnell & Krampe, 2020). However, positive outcomes have been understudied among people with disability, such as MS.
Benefit finding (sometimes referred to as posttraumatic growth or stress-related growth) is defined as positively evaluating circumstances when faced with a negative situation, and it is considered a successful adapting and coping mechanism in response to a disease or negative event (Affleck & Tennen, 1996). Benefit finding has been shown to mitigate the impact of stress across numerous contexts, including chronic illness (Hart et al., 2008; Helgeson & Zajdel, 2017; Pascoe & Edvardsson, 2013) and natural disasters (Stanko et al., 2015). Among persons with MS, there is significant evidence of benefit finding in response to the disease itself (Mohr et al., 1999; Pakenham, 2005, 2007). For example, there are reports of deepened relationship quality, increased spirituality, and enhanced appreciation of life after diagnosis (Mohr et al., 1999; Pakenham & Cox, 2009). Furthermore, among persons with MS and other clinical populations, benefit finding has been shown to be related to increased well-being, as well as the mitigation of depression and anxiety (Barskova & Oesterreich, 2009; de Vries et al., 2019; Manne et al., 2018). Given the positive associations of benefit finding, we wanted to examine how benefit finding may have played a role among individuals with MS during the COVID-19 pandemic and whether benefit finding helped them to maintain positive emotions throughout the pandemic and provided protection against stressors.
Regarding negative outcomes, we examined how concerned individuals with MS were about COVID-19– specific stressors related to infection or death and their feelings of loneliness. These specific stressors were found to be triggered by the circumstances caused by the pandemic (as opposed to typical stressors one might feel in daily life regardless of a pandemic; Liu et al., 2022). In addition, we also studied other factors that may have affected both positive and negative outcomes, such as resilience and social support. Studies of benefit finding, for example, have reported that people who are more resilient (Gori et al., 2020; Li et al., 2020) and who have better social support (Brand et al., 2016; Slattery et al., 2017; Teall et al., 2013) report better benefit finding. In addition, social support is known to help alleviate perceptions of loneliness (Beal & Stuifbergen, 2007; Drageset et al., 2015) and stress (Bonavita et al., 2020) among individuals with MS. Thus, given the known relationship of resilience and social support to both negative and positive outcomes, we specifically examined the relationship between these variables.
Thus, in this study we aimed to explore both positive and negative outcomes among community-dwelling individuals with MS during the peak of the COVID-19 pandemic, as well as how these outcomes were associated with social support and resilience. Such examination may help in better understanding the characteristics of persons with MS who have better responses to adversity as compared with those who have a negative response. The findings of this study will shed light on whether and how individuals with MS have coped with the pandemic, negatively or positively. Such information may help identify whether people with MS need more support in terms of learning and using positive strategies to cope with future adverse or traumatic events.
Method
This investigation was part of a larger research study of the impact of COVID-19 on adults with neurological disabilities, including MS, traumatic brain injury, and stroke. Participants were recruited through social media (Facebook, Twitter) and community support groups. Advertisements about the study were posted weekly by the research team on social media in September and October 2020. Interested individuals could open the link in the advertisement, which led to a description of the study (posted on Research Electronic Data Capture [REDCap tools; Harris et al., 2009) hosted at the Kessler Foundation. Individuals then could opt to participate by reviewing and signing an online informed consent form on REDCap. The current study included only data from the MS and healthy control (HC) groups (data on other populations and variables not relevant to this article are described elsewhere: Chen et al., 2022; Goverover, Chen, et al., 2022; Goverover, Kim, et al., 2022; Kim et al., 2022).
Individuals were excluded from participation if they were younger than age 18 yr. The study was approved by the Kessler Foundation Institutional Review Board.
Procedures
Data collection occurred between September and October 2020. Participants completed an online survey via REDCap. The survey was designed to be 30 min in length; however, if participants left their web browser open, they could take longer if needed. The survey assessed a range of domains, including demographics, medical history, general perceptions of resilience, social support, well-being, COVID-19 exposure, health care utilization, and changes in everyday activities that occurred as a result of the COVID-19 pandemic. The current study focused on questions related to COVID-19–related stressors, loneliness, benefit finding, and perceived stress management, as well as resilience and social support. The questions are briefly described in the following sections. As indicated, on certain questionnaires the participants were asked to consider their experiences during the peak of the pandemic, as opposed to the day of survey completion. The decision to use this wording was made to control for the fact that pandemic conditions were (1) changing week to week due to surges in infections, hospitalizations, and death rates; (2) likely to change over the data collection time period; and (3) affecting geographical locations at different times. By asking everyone to consider the peak pandemic time, our intention was to capture the most stressful time in an individual’s pandemic experience.
Demographic and MS Disease Characteristics
Information on age, race and ethnicity, education (highest grade or degree completed), employment and marital status, annual household income, country, approximate dates of MS diagnosis and most recent exacerbation, and MS disease phenotype was collected.
The majority of study variables were measured via survey questions from the COVID-19: Impact of the Pandemic and Health Related Quality of Life (HRQOL) in Cancer Patients and Survivors questionnaire (Penedo et al., 2020), which has subscales related to various aspects of life affected by the pandemic, including benefit finding, health care disruptions, and financial hardships. This questionnaire was minorly modified by the first and last authors (Helen M. Genova and Yael Goverover), who have expertise in the field of MS, to include language relevant only to MS and not to cancer. For example, the item “I have used my experience in coping with cancer to deal with COVID-19” was changed to “I have used my experience in coping with MS to deal with COVID-19.”
Certain subscales were selected for inclusion in the current analysis because they were related to the research question (i.e., benefit finding). These subscales are specified in the following sections. Data from other aspects of the survey, such as subscales not relevant to the research variables of this analysis, were not included in this article but have been reported elsewhere (Chen et al., 2022; Goverover, Chen, et al., 2022; Goverover, Kim, et al., 2022; Kim et al., 2022).
Positive Outcomes
The Perceived Benefits subscale of the COVID-19: Impact of the Pandemic and HRQOL in Cancer Patients and Survivors questionnaire was included in the survey to assess benefit finding “during the peak COVID-19 pandemic period” and included six items. Sample items included “I have greater appreciation for my family and close friends,” “I have deeper appreciation for life,” “I have been more grateful for each day,” and “[I] have used my experience in coping with MS to deal with COVID-19.” Participants responded to each item on a 5-point Likert-type scale ranging from 0 (strongly disagree) to 4 (strongly agree). A summary score was used in the analysis. The Perceived Stress Management subscale of the COVID-19: Impact of the Pandemic and HRQOL in Cancer Patients and Survivors questionnaire was included in the survey to assess perceived stress management and included five items. Sample items included “I am able to recognize thoughts and situations that make me feel stressed or upset about COVID-19” and “I am able to practice relaxation (e.g., deep breathing, meditation) when feeling stressed about COVID-19.” Participants responded to each item on a 5-point Likert-type scale ranging from 0 (strongly disagree) to 4 (strongly agree). A summary score was used in the analysis.
Negative Outcomes
The COVID-19 Specific Distress (Emotional and Physical Reactions) subscale of the COVID-19: Impact of the Pandemic and HRQOL in Cancer Patients and Survivors questionnaire was used to assess COVID-19– related stressors and consisted of 13 items. Sample items included “I worry about the possibility of dying from COVID-19,” “I feel I have no control over how COVID-19 will impact my life,” and “I feel negative and/or anxious about the future.” Participants responded to each item on a 5-point scale ranging from 0 (strongly disagree) to 4 (strongly agree).
The UCLA Loneliness Scale (Russell, 1996) was used to assess loneliness. Six items selected from the scale were modified by asking participants to gauge the feelings they experienced during the peak pandemic time in their area. These six items were used in the All of Us Research Program of the National Institutes of Health (NIH; https://www.researchallofus.org) to examine the response to the COVID-19 pandemic. Sample items included “I feel isolated from others,” “I lack companionship,” and “I am unhappy being so withdrawn.” Participants responded to each item on a 4-point scale (1 = never, 2 = rarely, 3 = sometimes, 4 = often).
Potential Influencing Factors
Resilience
General level of resilience (not related to the pandemic) was examined as a factor that may influence positive and negative outcomes. Resilience was assessed with the four-item Brief Resilience Coping Scale (Sinclair & Wallston, 2004). Participants responded to each item on a 5-point scale ranging from 1 (does not describe me at all) to 5 (describes me very well).
Social Support
Social support was examined as a factor that may influence outcome. Social support was assessed with the 10-item RAND Medical Outcomes Study Social Support Survey (Sherbourne & Stewart, 1991), taken from the All of Us Research Program of the NIH. Participants responded to each item on a 5-point scale ranging from 1 (none of the time) to 5 (all of the time).
Analysis
Analyses of covariance (ANCOVA) were used to assess differences between the MS and HC groups on positive and negative outcomes. These analyses were adjusted for age because the two groups differed significantly in age (Table 1). Pearson correlations were performed to examine the relationships between positive and negative outcome variables and resilience and social support in the entire sample. A threshold of p < .05 was used to determine statistical significance for all analyses.
Sample Characteristics by Group (N = 178)
Note. Group differences (MS vs. HC) determined by independent-samples t tests for continuous variables, Pearson’s χ2 tests for nominal variables, and Wilcoxon rank-sum test for ordinal variables. Dashes indicate not applicable. HC = healthy control; MS = multiple sclerosis; OCD = obsessive–compulsive disorder; PTSD = posttraumatic stress disorder; TIA = transient ischemic attack.
aStatistically significant differences between groups.
Results
Demographic and MS Disease Characteristics
This study included 74 persons with MS and 104 HCs. The MS group was older than the HC group (M ages = 48 yr and 43 yr for the MS and HC groups, respectively); t(168.42) = −2.23, p = .026. No statistical differences in sex distribution were found between the MS and HC groups, χ2(1) = 0.101, p = .750. Regarding MS disease characteristics, the sample consisted predominantly of individuals reporting the relapsing–remitting phenotype (68%). The majority of the sample was from the United States (84% of the MS group, 90% of the HC group). See Table 1 for the sample’s demographic characteristics.
Group Differences
Table 2 summarizes group differences on the outcome measures and potential influencing factors variables. The MS and HC groups did not differ in levels of positive outcomes (benefit finding, perceived stress management; p > .05). The MS group experienced worse negative outcomes compared with the HC group, including greater COVID-19–related stressors, F(1, 175) = 11.19, p = .001, and increased loneliness, F(1, 162) = 17.29, p < .001. Furthermore, there was no difference in general levels of resilience, although the HC group reported greater levels of social support, F(1, 199) = 4.61, p = .033.
Group Differences on Positive and Negative Outcome Measures and Predictor Variables.
Note. df = degrees of freedom.
Relationship Between Outcomes and Resilience and Social Support
Table 3 summarizes the relationships between positive and negative outcome measures, as well as resilience and social support across the whole sample. Benefit finding was significantly correlated with perceived stress management. That is, persons who rated higher levels of benefit finding also reported using higher perceived stress management. Benefit finding was not significantly correlated with either negative outcome, but it was significantly correlated with social support and resilience (i.e., higher social support and resilience were associated with higher benefit finding). Perceived stress management was significantly correlated with COVID-19–related stress (better perceived stress management was associated with lower COVID-19–related stress levels), as well as with social support and resilience (better stress management was associated with higher social support and resilience). Loneliness was associated with COVID-related stress (higher loneliness was associated with more stress) and social support (more social support was associated with less loneliness). Social support and resilience were positively and significantly correlated with each other.
Correlations Between Outcome Variables and Social Support and Resilience in Entire Sample
Discussion
Although numerous studies have begun to elucidate the negative impact of the COVID-19 pandemic around the world, the current study aimed to describe positive outcomes in addition to negative outcomes among individuals with MS during the pandemic. The current study showed that although individuals with MS reported higher levels of loneliness and COVID-related stress than HCs, both groups reported similar levels of benefit finding that was associated with positively perceived stress management. This study clarifies that, even during a stressful time (such as a pandemic), benefit finding and effective stress management may be powerful coping mechanisms. It seems that both persons with MS and HCs used similar rates of coping skills.
Consistent with recent studies (Costabile et al., 2020; Motolese et al., 2020), we found that individuals with MS reported significantly worse negative outcomes than HCs (loneliness and COVID-related stressors as a result of the pandemic). Individuals with MS can have comorbid mood symptoms, such as depression and anxiety, which may have made them more vulnerable to the negative mental and emotional impact of the pandemic (Motolese et al., 2020). In addition, individuals with MS tend to be more socially isolated, which may have made enforced social isolation because of COVID-19 even more difficult (Haji Akhoundi et al., 2020; Kalina et al., 2018). Interestingly, we found a positive association between COVID-related stress and loneliness; that is, people who were lonely were more stressed about the pandemic. These results emphasize and support previous findings about the link between loneliness with a variety of worse health outcomes (including sleep quality, cardiovascular health, and mortality; O’Súilleabháin et al., 2019; Tabue Teguo et al., 2016; Thurston & Kubzansky, 2009; Yu et al., 2020). These findings indicate that health care providers who work with the population with MS should address feelings of loneliness and help individuals with MS cope with residual negative issues resulting from the pandemic (Demir et al., 2020).
In relation to positive outcomes, perceived stress management (how one felt one was handling the stress of COVID-19) was related to benefit finding. This finding is somewhat consistent with a recent study reporting that individuals with progressive types of MS who used active, problem-focused coping strategies reported neutral (36%) or positive (16%) outcomes (Morris-Bankole & Ho, 2021). Among people with MS, social support and resilience may help patients to cope with their disease symptoms more efficiently as well as reduce the adverse effects of the disease (Bambara et al., 2011; Costa et al., 2012). Social support networks provide an important positive effect on mental and physical health (Cornwell & Waite, 2009; Pearson, 1986). Similarly, resilience is related to positive outcomes across multiple clinical populations and has become a clinical target in many interventions for reducing stress (Cohn & Fredrickson, 2010; Goldhagen et al., 2015; Teall et al., 2013).
Benefit finding was similar in both groups. The findings of this study demonstrate that those who reported higher benefit finding did not necessarily endorse less loneliness or fewer COVID-related stressors. Thus, benefit finding is related to the process of coping, but it does not necessarily have a role in preventing negative outcomes such as loneliness. Resilience and social support, however, were associated with benefit finding. This finding is consistent with previous studies that found that people with higher levels of social support and higher resilience express an increased ability to find benefit during traumatic situations (Brand et al., 2016; Li et al., 2020; Slattery et al., 2017; Teall et al., 2013). These findings demonstrate that interventions aimed at changing modifiable predictors (social support) may help cultivate benefit finding in the face of changes caused in the environment or by the illness.
Limitations
The strength of the current study is the inclusion of both positive and negative outcomes. One of the major limitations of this study is that the length of the pandemic affected our ability to study outcomes that may change as a function of time. Our survey instructed individuals to respond with how they felt at the peak pandemic time in their area, because we aimed to capture people’s perception of stress at the height of the pandemic. However, it is likely that stress levels ebbed and flowed throughout the year of the pandemic. Many studies have categorized the psychological experience of the COVID-19 pandemic as something akin to grief (Ishikawa, 2020; Zhai & Du, 2020). Thus, stages of grief (i.e., denial, anger, and acceptance) likely occurred over the course of the pandemic and affected how perceptions of psychosocial stress were reported in the current study. In other words, someone who was affected by the pandemic in a significantly negative way at the onset may have become more able to find benefit as the pandemic wore on. Although the associations between benefit finding and social support and resilience are promising, the causal direction remains uncertain because of the cross-sectional design and observational nature of this study.
One other limitation of the study was the nature of the survey itself. The survey reached only a subsample of persons with MS who are able to use the internet and who can sustain their attention for at least 30 min. The survey was designed to take 30 min; however, some people might not have been able to commit to this time frame or might have become fatigued and exited the study. Thus, this limitation resulted in a nonrandom sample of participants who were recruited through social media and support groups. These factors limit the generalizability of the findings to the larger population of people with MS. Furthermore, the sample of people with MS in this study was predominantly female and had higher academic attainment; they were mainly in established relationships, employed, and earning above-average salaries. This sample is not representative of the population with MS and may in fact represent a group of people who are naturally more resilient. Last, one of the primary measures used in this survey was a modified version of a scale developed for cancer patients and survivors. This survey was selected because there were no existing measures for people with MS at the time of study inception. However, the lack of psychometric data for this measure with the population with MS limits our interpretations and generalization of the results.
Implications for Occupational Therapy Practice
This study advances occupational therapy knowledge because it describes both positive and negative outcomes in light of adversity, and it provides support for the role of coping strategies in sustaining and promoting well-being in the context of an ongoing stressor. This study provides further support for the need for treatment that can facilitate MS self-management to maintain quality of life. Additionally, increasing awareness of the unmet needs of people with MS in the OT literature is crucial and specific to facilitating a positive outcome. Clinically, this study supports the importance of occupational therapy in addressing and providing a repertoire of coping strategies, self- management, and community integration (Kalina et al., 2018).
Conclusion
The COVID-19 pandemic provided us with a unique stressful situation for which we could examine how individuals experienced both positive and negative outcomes and how resilience and social support related to those outcomes. In the current study, we found that both groups had similar levels of benefit finding and perceived stress management. They also had similar levels of resilience. However, persons with MS had less social support than HCs, and they were more concerned about COVID-19 infection and experienced greater loneliness than HCs. Moreover, social support and resilience were associated with positive outcomes and may represent important factors or clinical targets in future research. In sum, the pandemic had a significant impact on the lives of individuals both with and without disabilities such as MS. Although we continue to learn more about the residual impact of the pandemic, it is critical to provide information to clinicians about how vulnerable populations (such as persons MS) cope in the face of a traumatic experience. More important, clinicians need these critical data to understand how to best serve individuals with MS in the face of stressful events, such as changes in health or context.
Footnotes
Acknowledgments
We thank the participants who shared their experiences during the pandemic.