ABSTRACT
Multiple sclerosis (MS) encompasses various symptoms, including fatigue, pain, spasticity, motor dysfunction, postural instability, sexual and bladder dysfunction, and cognitive impairment. Despite the documented benefits of exercise for alleviating MS symptoms, adherence to physical activity guidelines often is low, resulting in sedentary lifestyles among people with MS. This qualitative study explores the experiences of individuals with MS who participated in a ballroom dance intervention.
Thirteen community-dwelling individuals with MS participated in five 1-hour focus group sessions as part of a larger ballroom dance study. The Framework Method, utilizing NVivo qualitative analysis software, was applied to verbatim transcripts.
Four themes emerged. (1) Physical and psychological benefits: Ballroom dance improved perceived symptoms, including strength, endurance, coordination, and balance, as well as reduced fatigue and alleviated depression. (2) Positive social support leading to enjoyment/fun: Ballroom dance fostered positive support and served as an enjoyable activity, including for couples. (3) Improved confidence: The dance intervention instilled confidence in physical abilities and emotional well-being. (4) Physical and social facilitation of activity: Ballroom dancing facilitated activity because partners were able to assist when fatigue or balance issues occurred, and the intervention provided social acceptability.
Recreational ballroom or social dance was well tolerated, and individuals with MS and researchers perceived it as beneficial as it led to positive physical and psychological changes. This partnered social dance intervention provided an emotionally and physically supportive environment, improved confidence, and facilitated activity. This study contributes to the understanding of the potential of recreational ballroom dancing to promote physical activity and well-being among people who are living with MS.
Multiple sclerosis (MS) is a progressive central nervous system disease of autoimmune origin.1 Symptoms of MS include fatigue, pain, spasticity, motor dysfunctions, postural instability, sexual and bladder dysfunctions, as well as cognitive impairments and depression.1,2 With the broad range of symptoms and unpredictability of disease progression, it is important to maximize the independence and physical functioning of people with MS.
Because physical activity and exercise decrease symptoms and improve ambulation, general health, and quality of life (QOL) in people with MS,3-5 evidence-based exercise or physical activity guidelines for people with MS have been developed.3,4 Despite the benefits, adherence to physical activity recommendations often is low and many people with MS live a sedentary life.3 Barriers to exercise in this population include disease symptomatology, such as fatigue, pain, and depression; functional disability; social reactions to disability; and lack of accessibility to health or fitness facilities.3,6 The benefits of exercise programs in this population, as well as the barriers to adherence, necessitate development of engaging and innovative programs to promote physical exercise that are accessible to people with MS.
Dance programs can be enjoyable and engaging as an alternative to traditional exercise programs and may encourage participation in a physical and social activity.7 Studies of people with Parkinson disease and other neurological diseases have found dance to have physical, emotional, and social benefits.7-9 Data show that physical activity, cognitive stimulation, and music may improve cognition, but these effects could be interactive when combined as dance, which provides all 3 simultaneously.10 Most of the previous studies used partnered dance (eg, Argentine tango, American ballroom, or folk styles), although nonpartnered dance (eg, modern or rhythmic movement) has also been studied.9
Although comparatively well-studied in people with Parkinson disease, dance has only recently been investigated in people with MS, as highlighted in a recent systematic review.11 A previous study with a person with MS demonstrated improvements in physical and emotional function after a rhythmic dance intervention.12 Subsequent studies reported improved function in people with MS after nonpartnered dance interventions.13-15 Recent studies suggest that partnered social dance is a promising and enjoyable way to improve physical and cognitive abilities in those with MS.10,16,17 In the first partnered dance intervention in people with MS, a small study without a control group, Mandelbaum et al16 noted improvements in physical function and activity, and participants reported that the intervention was enjoyable. Another small study reported on a ballroom/social dance intervention for people with MS in comparison with a control group of people with MS; the intervention demonstrated improvements in physical function, cognition, and quality of life and a trend toward decreased fatigue and depression.17 This study also documented that dance can help meet exercise or physical activity guidelines for exercise intensity.17
The observed success of dance programs in degenerative neurological conditions is noted, yet the literature is sparse, mainly quantitative, and focused on physical symptoms. The literature is lacking evidence from the perspective of people with MS who participate in such programs. Because people with MS have symptoms affecting the psychological and social realms and because dance interventions have the potential to provide feelings of enjoyment and accomplishment as well as social engagement, dance research can include elements beyond physical functioning. Accordingly, using qualitative methods, the current study's objective was to understand the experience of people with MS who participated in a ballroom dance intervention.
METHODS
Study Design
This descriptive, qualitative study employed focus groups to examine the experiences of people with MS who participated in a recreational ballroom dance intervention.18 The focus group methodology was chosen to understand the phenomenon from participants’ perspectives and to allow them to interact and collectively recall their experiences in the ballroom dance program.19
Recruitment and Sample
Participants in the dance intervention were recruited from the community or through the local chapter of the National Multiple Sclerosis Society. Dance sessions were held in 1 academic and 1 community setting from 2014 to 2015. The dance program was developed by the research team of our larger study18 and was similar to that previously reported.17 Focus group participants were chosen from those who took part in the study. See TABLE 1 for participant demographics.
Briefly, dance sessions were led by professional dance instructors who were trained by the research team to have a working knowledge of MS, and who, likewise, shared their artistic and pedagogical knowledge and experience with the research team. Sessions consisted of a warm-up followed by 45 minutes of dance steps (ie, salsa, rumba, foxtrot, swing, waltz, American tango, or push-pull) and a cool-down. Dances were individualized, with some participants performing smaller steps or dancing in half time. Instructors provided appropriate recorded music. Everyone participated with a partner, either one they brought or volunteers from the research team. At the conclusion of the intervention, people with MS who had attended at least 8 of the 10 weeks of dance sessions were invited to participate in 1 of several focus groups.
Data Collection
A semistructured discussion guide (TABLE 2) with open-ended questions was used to elicit participants’ perceptions of the program. The questions were from an exercise/physical activity perspective, focusing on participants’ experiences and their overall perceptions of exercising with MS. Five 1-hour focus-group sessions with 2 to 3 participants per group were conducted 1 to 2 weeks after completing the program sessions. An author (LBP) moderated the focus group sessions, and a second author (AVN) took notes. Focus group sessions were conducted in private conference rooms in the same locations as the dance program and were audio-recorded to ensure accuracy.
Informed Consent and Compensation
The research protocol was reviewed and approved by the Marquette University Institutional Review Board before study commencement. Participants provided written informed consent prior to focus group sessions and received a $10 gift card for compensation after participation.
Data Analysis
Audio recordings were transcribed verbatim, and accuracy was verified by an author (AVN). All authors independently reviewed and analyzed the transcriptions and coded similar statements and phrases. Qualitative analyses were conducted using computer-assisted coding and memo software NVivo (version 11, QSR International). Qualitative data analysis procedures were based on the framework analysis methodology by Krueger and Casey.20 The analysis was an iterative process involving constant comparison.21 Analysis started with labeling or coding transcript data to reflect as many of the nuances in the data as possible, rather than reducing them to a few numerical codes. As the analysis continued, codes were grouped to form categories. This process allowed researchers to sort and arrange the data to build themes and conceptual explanations. During the coding process, the entire research team met several times over a period of months to discuss the data and reflect on recurrent themes. Data collection continued until data saturation was reached, which was defined as no new themes emerging from focus groups.22 The coding process continued until all focus groups had been completed and reviewed. This process ensured internal quality control and helped validate the themes and codes through independent coding and group consensus. Based on the final matrices of collapsed themes, the research team wrote summary statements to describe the findings.
Participant Characteristics
Thirteen people with MS participated in the focus group sessions. The majority of participants had relapsing-remitting MS (n = 12) and were White women (n = 10) with an average age of 45 years (SD = 9.3). Participants had a mean Patient Determined Disease Steps (PDSS)22 score of 2 (range, 0-5). Participants danced with their spouses (n = 6), friends (n = 2), or research team volunteers (n = 5).
RESULTS
Focus Group Findings
Ballroom dance participants identified many benefits to the program. Four major themes emerged from the data: (1) physical and psychological benefits, (2) positive social support leading to enjoyment/fun, (3) improved confidence, and (4) physical and social facilitation of activity.
Theme 1: Physical and Psychological Benefits
Participants noted various physical and psychological benefits they experienced from participating in the ballroom dance program.
Physical benefits
Physical benefits reported by participants included improved strength, endurance, coordination, and balance. Several people reported experiencing improved strength from the dance movements, especially in their lower extremities, and theythat this helped compensate for weakness resulting from MS. They explained that different types of movement, particularly sideways and backward, helped them to “do something that normal people don't even think about” (Participant #1), thus noting that physical ability developed through dance. “It evens out the strength in your legs. Forever, my left leg has been my bad side…and it's making that left leg work and have phenomenal improvement” (Participant #2). This participant related that the improved leg strength also contributed to better posture, reducing the need to use or bend over a walker.
Increases in strength were accompanied by improved endurance (Participant #7) and stamina, with 1 person stating that she was able to stand more and walk with more stability (Participant #1). Another mentioned improved ability to stand and sing in choir for almost entire church services (Participant #2), and another noted the ability to stand up and sit down more consistently during church services, whereas, previously, she used to sit for the whole service (Participant #3). Participants also noted enhancement in balance, with Participant #2 stating, “My balance is one of my biggest problems. I think I've improved the balance because the muscles got tweaked; they got wear.” Another participant summarized the changes experienced from dancing, saying they had “better coordination, better balance, better memory” (Participant #4). In this case, better memory also speaks to the nonphysical benefits described below.
Psychological benefits
In addition to the physical benefits, individual participants reported a variety of psychological or nonphysical advantages, such as reduced symptomatic fatigue, alleviated anxiety, diminished depression, and better memory. For example, Participant #13 noted, “The point in which I begin to feel fatigue is much, much, much later [in the day].” Participant #8 commented on anxiety, “I generally had a good amount of anxiety. Dance class has definitely cut a portion back down.” Another noted that before taking the class, she was “back on antidepressants, not wanting to exercise and not really caring. But this dance class has turned that all around attitude-wise. I'm ready to come off my antidepressants again” (Participant #3). Participants also reported a significant improvement in positive affect and emotional well-being. “The dance class has been the first thing in the past 3 years that has actually made me happy or have a genuine smile, so it's lifting my spirits” (Participant #11).
Theme 2: Positive Social Support Leading to Enjoyment/Fun
Positive social support
Ballroom dance sessions fostered positive social support for participants, which they described as emotional support, safety, and enjoyment being around others with the same diagnosis. One person noted a camaraderie that prevented embarrassment and described it as follows: “I certainly didn't worry about being embarrassed with this group.…I enjoyed the social interaction and the music and the camaraderie with all these people [who] had something in common, more than I enjoyed the dancing itself” (Participant #12). Another noted, “It has changed my and my wife's perception of the possibility of us actually being able to dance without making a fool of ourselves. Here it didn't matter whether we made a fool of ourselves” (Participant #13). Another participant compared the dance sessions to a support group, noting that although traditional support groups are beneficial, the dance sessions offered a more positive and active way of connecting with others: “It was a great support group…it's better than a support group because it's people who want to be active and want to be doing something, and you are with people who are in the similar situation, but you are not sitting around in a circle bemoaning it so much. I mean, I am social worker, I am not against support groups, but to me it was a more positive way to be around people with [a] similar situation” (Participant #10).
The level of support participants felt was exemplified by 1 participant who, on her way into the first class, discussed her disease for the first time with her friend and dance partner. After participating in the sessions, she felt more comfortable discussing her disease: “After 1 class [I was able] to talk to 2 young ladies [who] were in the class. And that was the first time that I spoke to anyone [who] had it and so, I felt another connection and they were very supportive. Well, we were standing outside, and…we all started talking. And then, before I knew it, I was talking, and I started crying” (Participant #11).
All of these experiences emphasized the safe nonjudgmental atmosphere that was formed organically by the group; participants felt they could speak, act, or disclose without fear of being labeled, singled out, or embarrassed. The dance intervention seemed to foster a community feeling as indicated by the comment from Participant #12 above, in which the social aspects were “more enjoyable than the dance itself.”
Enjoyment and fun
Group interaction and the comfortable learning environments made the dancing fun. Participants universally and repeatedly stated that the dance sessions were fun and enjoyable and attributed this to the dance activity itself. They enjoyed learning different steps and found themselves listening to music and moving to it at home or in the car, thinking about which steps they could use. They appreciated having choices in what they wanted to learn: “We were like, we wanna learn this, so it made it fun” (Participant #5).
When talking about the group dance activity, Participant #8 remarked, “My exercises that I do myself are fun because I make them fun, whereas this in itself is fun. It's exercise that's actually entertaining you. Lifting weights, you get a different kind of enjoyment [out] of it, but it's not fun, dancing's fun.…I look forward to it all day. Then, afterwards, you enjoy it afterwards.”
Another participant noted how the dance sessions allowed her to escape from daily stresses and fully immerse herself in the experience: “It's rush hour. Taking time to get down here and you're kind of frazzled like, OK…you run through rush hour. You get here and forget all of that.…When you get in that dance room, everything's out the door. We're having fun for an hour, and that hour went by fast. We learned so much so fast.…It's like you're in a different zone. That's how I felt when I was dancing. Not a care in the world, nothing, not my son, not my house, not anything” (Participant #7).
Participants also said that the enjoyable nature of the sessions contributed to their commitment and adherence. Participant #9 specifically noted, “Because I dance with my husband, I think it was good for us as a couple. We had, like, date night twice a week.” This indicates that the enjoyment from the dance sessions motivated them to participate consistently.
Although participants did not explicitly describe dance as an artistic and aesthetic experience, they highlighted the enjoyment and fun aspects. A participant noted, “My general outlook when I was doing it was just better, [because] I enjoyed it, and I got involved in some other musical endeavors at the same time, and all of it together was just, like, ‘Oh wow, this stuff is happy producing; that's good’” (Participant #12).
Dancing was also described as enjoyable: “It's like a hobby; it was fun” (Participant #5) “where[as] exercise is work” (Participant #6). The positive social support and positive attitude cultivated feelings of improved confidence and well-being.
Theme 3: Improved Confidence
Participating in the ballroom dance program helped to build participants’ confidence in both their physical abilities and emotional well-being. This theme encapsulates the dual aspects of confidence enhancement: physical confidence and emotional confidence.
Physical confidence
Several participants reported increased confidence in their physical abilities, which included exercise and daily activities. They noted that this newfound confidence was accompanied by a sense of happiness in learning and participating in more activities. They were happy that they had been able to enjoy dancing despite having MS and were now confident in their physical ability to go dancing. A participant commented, “I think about the fact that I just learned how to do 6 dances in such a short amount of time. That's—pat yourself on the back, can't believe I did it, but I kept going and I did it” (Participant #7). This participant also noted that this sense of accomplishment encouraged them to try different types of exercise. Participant #4 noted, “It's given me more confidence. I know what I can and can't do.…We learned kind of how to work with the MS and dance with the MS.” Both participants talked about learning 6 dances and their improved confidence in being able to do different things.
Participants felt proud of their perseverance and success despite physical challenges. This sense of achievement contributed to their overall confidence, encouraging them to engage in more physical activities. As Participant #11 stated, “I had not been able to do any exercise, so this was the first time.…It gave me a little bit [of] incentive to try, outside of dance class, going to do something [else] as well.”
Another participant learned to pay attention to breathing much more than they had done in basketball or other sports. They found it beneficial as they “didn't want to keep leaving the room to catch a breath so I just patterned my breathing. Seeing myself doing that in there, I'm using it for other things now” (Participant # 8). One person noted a new confidence to sign up for lessons at a local community center to be able to “exercise in a different way” (Participant #6).
However, not all experiences were fully positive. Some participants mentioned frustration with the dance steps or their inability to go fast enough. One person noted, “One of the hardest [things] for me is coming back every time and being so frustrated because I couldn't remember what she taught the last time” (Participant #13). Another talked about partners with different styles leading to frustration and the need to leave for a few minutes to “regroup” and refocus on it being fun, not “an exam” (Participant #7).
Emotional confidence
Participants also experienced improved emotional confidence, including self-satisfaction, accomplishment, and pride. One participant expressed, “I won't go into doing new things with such trepidation as I had before because I see that I can do it” (Participant #1).
The supportive and fun environment of the dance sessions significantly contributed to this emotional uplift. Participants enjoyed bonding with others while learning something new, which positively impacted their overall self-efficacy.
Although participants used the term “confidence,” their comments align with improved self-efficacy in physical or social-seeking behaviors.23 The dance program specifically enhanced both physical and emotional self-efficacy and contributed to participants’ willingness to engage in new physical activities and social interactions.
Theme 4: Physical and Social Facilitation of Activity
The ballroom dance program helped participants overcome specific physical barriers to exercise related to their MS. The presence of partners, adaptations (eg, chairs), and the social climate created by the instructors and other participants provided the necessary support and assistance during the dance classes.
Partner support for balance and stability. Participants appreciated the support from their dance partners, which helped them maintain balance and stability during the program. As Participant #12 mentioned, “Having a partner [when] dancing helps because you at least have somebody to rely on for balance and stability.” Participant #2 mentioned that she was able to dance without a walker because she had a partner.
Adaptations for rest and assistance
The program also made adaptations to accommodate participants’ needs, such as providing chairs for rest and support. Participant #2 shared their experience: “…the partners would drag the chairs out and things like that. We figured out how to set up the chairs so there was one there when you needed to sit down. Certain people needed a chair like, now.” They also appreciated the adaptability of the sessions (ie, that changes were made to accommodate varying abilities of participants). The adaptations ensured participants could rest whenever needed during the dance class, which addressed a crucial barrier to exercise for many people with MS.
Social acceptability of MS
Social acceptability was fostered by the dance instructor, who was described as lighthearted and frequently caused laughter during the sessions, setting a fun tone for the class. Rather than focusing on the participants’ MS, the instructors fostered an environment of acceptance and normalcy. A participant captured this feeling of inclusivity and normalcy, saying, “I felt like I was part of the normal world and not different” (Participant #1). Another stated, “She didn't hold back from teaching us different steps just because we have MS” (Participant #12). This approach helped to normalize the experience for participants, making the dance sessions a social activity where their condition was not a limiting factor.
DISCUSSION
The results of this novel study highlight perceived experiences of people with MS who completed a partnered ballroom dance intervention. Dance participants experienced physical and psychological benefits, feelings of social support and enjoyment, improved confidence. In addition, the activity facilitated exercise. These themes support and expand on what has been previously reported in mainly quantitative studies, and they provide further evidence of the benefits of social dance for people with MS.
To our knowledge, this study is the first to describe the experiences of people with MS who participated in partnered social dance. A recent program evaluation of a nonpartnered, group ballet intervention for people with MS by Scottish Ballet also had a qualitative component. This study found themes similar to ours.24 However, in contrast to what we report, participants from the ballet program also described an attraction to dance, explained as being due to the artistic aesthetic of dance (ie, ballet) and the prestige of the ballet company. Participants also praised the expressive and artistic nature of ballet.24 However, although our participants did not specifically mention partnered dance as artistic expression, they did appreciate dance as an artistic endeavor along the same lines as music.
Other studies13,14,16,17,24,25 have investigated physical and psychological outcomes in various dance programs, including partnered ballroom17 and salsa dance,16 but all without a formal qualitative component except for the previously mentioned program evaluation.24 These studies reported improvements in measures of gait,13,15,24 balance or coordination,13,16,26 walking ability, 14,16,17,24 strength,14 endurance,14,15 and time spent in physical activity.16 Cognition, measured by the Paced Auditory Serial Addition Test, was reported to have improved after a recreational ballroom dance intervention17 and trended toward improvement after a multimodal dance for performance intervention.14 Overall, these measured improvements in physical function and cognition were consistent with the improved strength, endurance, coordination, balance, and cognition experienced by our focus group participants.
Our focus group also reported psychological or emotional benefits that, again, reflect what has been measured in previous dance studies. Two studies reported decreased symptomatic fatigue after a ballet intervention,24 as well as after a dance-for-performance intervention.14 One study showed that quality of life improved after ballroom dance17 and, in another, physical activity behaviors were shown to be positively affected after salsa dance.16 Although only 1 of these studies had a formal qualitative component, several anecdotally reported that participants found the dance experience to be positive or enjoyable.15-17 Although others have reported benefits in physical and psychological function using laboratory or survey instruments, the fact that participants described similar benefits attests to the clinical significance of some of these previously reported findings.
Our participants reported positive social support coming from a group/community and from a partner. They found being with others with MS and having fun, all while learning a new activity, to be normalizing. Some felt more able to acknowledge their MS. Dance was thought of as fun, and not physical activity or exercise. Participants also reported that partners provided physical and emotional support as dyads navigated new and sometimes challenging dance steps, which gave them a shared sense of facing challenges together. Participants reported feeling more confident, felt barriers to exercise were lessened with partners, and enjoyed the overall social support of the environment. They eagerly anticipated dance sessions and described the experience as “date night” fun. Overall, our results align with the finding that partnered exercise is a top priority for people with MS and their partners.27 They also suggest that partnered dancing may provide certain social benefits that are different from nonpartnered forms of dance, such as ballet or rhythmic movement.
People with MS who participated in a recreational ballroom dance intervention experienced more confidence in their ability to perform physical activity specifically and other wellness activities in general. This self-directed confidence, or self-efficacy, is very important for the incorporation of physical activity or other health-seeking behaviors into one's lifestyle, as self-efficacy (eg, physical) is a significant component of this type of behavioral change.23 This also suggests that physical activity considered fun or recreational would be more likely to be integrated into one's life.
Participants reported that balance and stability barriers to dancing were reduced due to the direct physical help provided by their dance partners. These reports suggest that some dance experiences may be unique to partnered dance. The sessions were designed to be accessible, including temperature control and accommodation of MS-related fatigue, and participants appreciated the instructor's abilities to adapt programming to individual and group abilities.
The experiences reported by people with MS are similar to what has been reported in qualitative findings in people with Parkinson disease during partnered ballroom28 or therapeutic dance,29 as well as from a mixed group of people with Parkinson disease and people with MS.30 This latter study also emphasized the transformative experience of dance. MS has a different pathophysiology than Parkinson disease, but the similar findings suggest the overall dance experience may be comparable to the experience of those with other neurological diseases.
This study had several limitations, all commonly observed in focus group research. First, the small sample size and potential selection bias may limit the generalizability of the findings. The sample lacked diversity in terms of ethnicity, sex, social background, and disease severity, which could impact the applicability of the results to a broader population. Second, direct comparisons with other studies were not always feasible due to the qualitative research design. Although all participants reported enjoying the partnered social dance and experiencing benefits in either physical and/or psychological/emotional domains, it is important to acknowledge that these benefits might be applicable to any dance or group exercise. Lastly, this study did not compare partnered dance with nonpartnered dance or other physical activities. Therefore, it remains uncertain whether the observed benefits are unique to partnered social dance or whether they could be derived from alternative forms of dance or exercise. Future research should consider addressing these limitations to provide a more comprehensive understanding of the impact of dance on individuals with MS.
CONCLUSIONS
This study found that participants experienced specific physical, psychological, and social benefits from partnered dance. It is possible that the experience of any dance to music may elicit physical and emotional, or self-efficacy, improvements, as well as a positive attitude toward exercise or physical activity12,14-16 ; however, participants in this study found partnered dance specifically removed barriers to exercise and provided emotional support that other forms of dance may not. Further investigation is needed to fully understand the potential benefits of partnered or ballroom dance for individuals with MS. Overall, quantitative and, now, qualitative studies demonstrate the feasibility and benefits of dance as recreational physical activity for people with MS.
ACKNOWLEDGMENTS:
We thank Danceworks MKE for providing excellent dance instruction tailored for people with MS and to ProHealth Care for providing physical space for us to meet.
FINANCIAL DISCLOSURES: All authors declare that they have no conflicts of interest.
FUNDING/SUPPORT: Funding for this research came from the Greater Milwaukee Foundation.
PRIOR PRESENTATION: Two posters have been presented based on this work. Recreational Ballroom Dance and Multiple Sclerosis was a poster at the American College of Sports Medicine Annual Meeting; May 2019; Orlando, FL. Recreational Ballroom Dance and Multiple Sclerosis: Date Night Fun was presented at the 43rd Annual Midwest Nursing Research Society Conference; March 2019; Kansas City, MO.