A Qualitative Inquiry of Exercise Preferences among Hispanic Adults with Multiple Sclerosis

Abstract

This study aimed to identify the components of an ideal exercise training program for Hispanics with multiple sclerosis (MS), cultural adaptations, and avenues for dissemination of information to this population. Online, semi-structured interviews were conducted with 27 adults with MS who identified as Hispanic. A deductive content analysis approach was applied for assessing necessary and desired components of an exercise program. Participants articulated preferences for “what,” “when,” “where,” and “who” of exercise programs. All participants expressed an interest in aerobic training (n = 27) and need for resistance (n = 14), flexibility (n = 8), and neuromotor components (n = 10; what). The most commonly mentioned exercise frequency was 3-5 times per week (n = 21; when). The locations included home- or community-based exercise (where), supported through coaching (n = 13) or group (n = 14) delivery with a minority preferring autonomous exercise (n = 5) (who). Cultural adaptations for Hispanics included language, cultural norms, priorities, music/dance, and instructor characteristics. Further, participants provided suggestions for future advertising of exercise programs and resources such as MS-specific websites and health care providers. This study provides guidance for creating a culturally tailored, structured exercise programs for Hispanics with MS that may fill a significant gap in available rehabilitation resources for the subgroup.

“Aerobic exercises were the most commonly noted modality when discussing an ideal exercise program.”

Introduction

Multiple sclerosis (MS) is an immune-mediated disease of the central nervous system that results in significant symptoms including mobility disability, cognitive impairment, emotional dysregulation, and fatigue. ¹ The demographics of persons living with MS have drastically shifted over the past decade, with an increased prevalence among persons of Hispanic/Latinx, hereafter referred to as Hispanic, descent. Indeed, there is an estimated 10-year cumulated prevalence of 161 per 100,000 Hispanic adults living with MS in the United States. ² Hispanics with MS experience distinct health disparities including worse mobility and cognitive functioning, especially among immigrants and individuals diagnosed later in life.^3-7 Hispanics with MS are 30%–40% less likely to see a neurologist than non-Hispanic Whites with MS and significantly less likely to have access to specialty care such as physical and occupational therapy.^8,9

Exercise training is a low cost, evidence-based mode of rehabilitation and symptom management for Hispanics with MS.^10,11 The benefits of exercise in the general MS population include improvements in walking, balance, cognition, fatigue, depression, and quality of life.^10-12 Nevertheless, Hispanics with MS have been virtually absent from the exercise training literature, particularly exercise training clinicals trials. One literature review synthesized current knowledge regarding the characteristics of adults with neurologic disabilities in exercise training clinical trials and not a single study in MS, among 53 published studies, identified any participants as Hispanic. ¹³ One recent cross-sectional study examining the North American Research Committee on Multiple Sclerosis (NARCOMS) registry data reported that fewer than 30% of Hispanics with MS are meeting sufficient levels of health-promoting physical activity and higher rates of physical activity were associated with less disability and better mobility, bowel/bladder function, and physical health related quality of life.^14,15

To date, little is known about the design and delivery of exercise programs for Hispanics with MS, yet such an endeavor should be rooted in a community-engaged foundation that identifies the exercise preferences of the target population. For example, there is a growing line of research regarding exercise training for African Americans with MS.^16-19 This line of research began with a qualitative study identifying exercise preferences among 40 African Americans with MS. ¹⁷ The findings from that qualitative study provided a foundation for developing and testing the feasibility of an exercise training intervention for African Americans with MS that is currently being examined for efficacy in improving walking impairment in a randomized controlled trial.^17,19 Additionally, an adapted exercise training intervention for wheelchair users with MS is currently being pilot tested that was created using a 3-step community-engaged design that began with a foundational qualitative inquiry regarding preferences for the design of an exercise program.^20-23 These studies highlight the importance of focal research on subpopulations of interest when developing and/or adapting exercise training interventions that meet the unique needs of persons with MS with varying cultural backgrounds and phases of the disease course associated with significant health disparities.

The current study directly addresses the gap in the literature regarding exercise preferences of Hispanics with MS. This formative evaluation of exercise preferences will support the design and delivery of exercise training programs that meet the needs of Hispanics with MS. This qualitative inquiry is focused on identifying the components of an ideal exercise training program (what, who, where, and when), cultural adaptations for Hispanics, and avenues for dissemination of information among this population. The patient-informed nature of this study is crucial for ensuring appropriateness of exercise training programs that address compounding health disparities and outcomes experienced by Hispanics with MS.

Methods

Sampling Procedure and Participants

The study was approved by a University Institutional Review Board and reported using the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. ²⁴ Participants were recruited via e-mail through convenience sampling, specifically individuals who expressed interest in future research that completed a large, cross-sectional study examining exercise behaviors of Hispanics with MS. ²⁵ Inclusion criteria included: (a) age 18 years or older, (b) self-reported diagnosis of MS, (c) identify as Hispanic/Latinx, and (d) English or Spanish as primary language. These inclusion criteria were consistent with the cross-sectional study and therefore additional, formal screening was not required. We sought persons from across the USA with no stipulation of MS type to ensure the inclusion of different geographical, cultural, and MS experiences and offered the option of completing the interview in English or Spanish based on participant’s preferences.

Data Collection

Data were collected through a one-time online, semi-structured, one-on-one interview with one of two trained researchers using virtual meeting software. The trained interviewers included the first author (SLS) who is a PhD-level investigator who has led numerous qualitative research studies and the third author (TO) who was a graduate student that was trained by the first author on best practices for semi-structured interviews. An interview guide was adapted from a previous research study examining exercise preferences of wheelchair users with MS. ²⁰ All interviews began with completion of electronic consent via a Qualtrics survey and confirmation of permission to audio record. Each interviewer took handwritten field notes on a data collection form during the interview. The introduction to the interview included inquiries regarding the participant’s background (i.e., demographics, years diagnosed, type of MS, current location, country of origin, and daily activities). The overarching aim of the interviews was to facilitate discussion regarding exercise preferences and needs, while affording flexibility for elaboration on previous experiences as well as ideal circumstances. The primary research question of interest was “What would be your ideal exercise program?” Probing questions included: What would the program include (activities and modalities)?; How often would it occur?; Who would be involved?; Where would you exercise?; and What resources would you need in order to engage in regular exercise? Participants were asked about potential adaptations needed to promote exercise among Hispanics. Additionally, to guide the future phases of this research, participants were asked: Where do you get information related to MS? and Where should we advertise an exercise program? Interviews were automatically transcribed using the virtual meeting software and reviewed for accuracy by a member of the research team. Participant names were changed into unique study IDs to maintain confidentiality of participants.

Data Analysis

The data analysis was completed by the research team; participants were not asked to review transcripts or provide feedback on findings to minimize burden and given our a priori analysis plan and our research team’s consensus that data saturation was reached. We applied deductive content analysis following the guide put forth by Elo and Kyngas to identify recurrent mentions of a priori defined exercise components. ²⁶ The a priori components were the “what, when, where, and who” of exercise programs for Hispanics with MS, “Hispanic culture,” and “advertising.” The first phase was preparation wherein the aforementioned themes were selected and defined by three members of the research who coded the data. The three coders then initiated the analytic process, which included one of three coders reading all transcripts and completing initial coding using the Microsoft Word comments feature. If a coder conducted the interview, they were not assigned as the initial coder. Each transcript was then reviewed by a second coder (i.e., all transcripts were coded by 2 members of the research team) and information transferred to a data analysis table for each participant that included a column with each code and a column for evidence supporting the code. The first author then initiated abstraction as a method of assembling descriptions and interpretations of themes into categories that were reviewed by all authors. Results of the coding process were synthesized and counts were generated for providing quantitative context related to preferences for exercise across the participants. Quotes presented within the Results have been copyedited for enhancing readability.

Results

Participants

Thirty-seven individuals expressed interest in the study and 36 scheduled interviews. Five participants did not attend the scheduled interview. Four interviews were deemed suspicious of not having MS and were excluded from analyses. The final sample included 27 participants with demographic and clinical characteristics outlined in Table 1. There was not a formal demographics questionnaire and therefore some participant details are missing if they were not organically described in the initial background portion of the interview. Briefly, 22 participants identified as female (81%), most participants were middle aged (a range of 30-67 years old), and 18 participants (67%) indicated they were currently employed. Regarding MS clinical characteristics, 19 participants (83%) reported relapsing-remitting disease course and the number of years diagnosed with MS ranged from 4-29 years. Most participants were born in the United States and described diverse cultural backgrounds from Hispanic countries including Mexico, Puerto Rico, Argentina, Cuba, Columbia, Brazil, and Spain. Additionally, participants were diverse in terms of current North American geographic region, including: South (n = 12), West (n = 7), North (n = 5), Midwest (n = 2), and Canada (n = 1) (Table 1).

Table 1.

Demographic and Clinical Characteristics of the 27 Persons With Multiple Sclerosis Who Completed Semi-Structured Interviews.

Variable (n)
Age (12), years (SD)	45.5 (12.2)
Disease duration (27), years (SD)	12.6 (7.2)
Type of MS (23), n (%)
RRMS	19 (82.6)
PPMS	2 (8.7)
SPMS	2 (8.7)
Biological sex (27), n (%)
Female	22 (81.5)
Male	5 (18.5)
Marital status (23), n (%)
Married/Partnership	15 (65.2)
Single/Divorced	8 (34.8)
Employed (26), n (%)
Yes, full or part time	18 (69.2)
Retired, or disabled	8 (30.8)

Notes. RRMS, relapsing-remitting multiple sclerosis; PPMS, primary progressive multiple sclerosis; SPMS, secondary progressive multiple sclerosis.

The what of a Program

The “what” of a program describes the participant-reported preferences regarding modes of exercise. The themes for modes of exercise were aligned with the recently published National MS Society (NMSS) exercise recommendations for people with MS throughout the disease course: Aerobic, Resistance, Flexibility, and Neuromotor. ²⁷

Aerobic exercise includes physical activities that utilizes large muscle groups that can be maintained continuously and is rhythmic in nature. ²⁸ All 27 participants reported some form of aerobic exercise in their description of an ideal exercise program (Table 2). Of note, participants often mentioned multiple themes across categories leading to values greater than n = 27 throughout the Results. Modes and activities in aerobic exercise included: walking (n = 18), biking (n = 10), Zumba or dance (n = 10), swim or water aerobics (n = 7), machines (n = 5), boxing or kickboxing (n = 3), aerobic videos (n = 2), and paddle board (n = 1). The ease of walking as a form of exercise was highlighted by Participant (PPT) 004, “walking it’s the easiest thing to do.” This aligns with a preference for walking across populations given considerations for cost and accessibility. Additionally, PPT 020 highlighted their preference for walking was inherent in an aversion to traditional exercise, “Walking is my ideal exercise, because I don’t enjoy anything that resembles actual exercise.” Biking indoors or outdoors was mentioned by 10 participants, including PPT 036 who mentioned a preference for outdoor modalities, “I would like to do like mountain biking or like biking on the trail.”

Table 2.

Summary of Components for Developing an Exercise Training Program for Hispanics With MS (N = 27).

Primary ThemeBrief definition	Sub Theme	Count
WhatPreference for modes of exercise training	AerobicResistanceFlexibilityNeuromotor	N = 27N = 14N = 8N = 10
WhenPreferences for the frequency and duration of exercise training programs	Frequency3-5x/week1-2x/week with instructorEverydayDuration	N = 21N = 1N = 6N = 5
WhereExercise training location preferences	Home/RemoteCommunity	N = 10N = 18
WhoIndividuals who design deliver, or participate in exercise training programs	CoachGroupCombinationIndependent	N = 13N = 14N = 7N = 5
Hispanic CultureConsiderations for cultural adaptations	LanguageCultural NormsPrioritiesMusic/DanceInstructor Characteristics	N = 9N = 9N = 6N = 5N = 3
AdvertisingSuggestions for future advertising of an exercise training program	MS-SpecificHealth CareSocial MediaGeneral Community	N = 17N = 16N = 14N = 10

Note. MS, multiple sclerosis.

Other aerobic modalities of interest were more structured and traditional in nature such as the preference of PPT 013 for, “chair yoga when they do even water aerobics. I would definitely do that.” PPT 012 mentioned dancing in general, “I would one day like to be able to move that fast and follow directions and be able to basically dance and do exercise while I’m dancing” whereas PPT 035 was more specific, “I would like to go back to doing my Zumba. The aerobic classes.” Boxing or kickboxing were mentioned, which are commonly applied modalities in the Parkinson’s disease literature. ²⁹ Specifically, PPT 011 said, “I have done boxing at one point in my life, too. I think I would like to.” One additional unique idea was activity-based from PPT 017:

I would like to be able to do paddle board. I used to do Zumba and stuff like that. I physically am not able to do that. It's hard for me to do that now, I miss doing those fun activities.

Collectively, aerobic exercises were the most commonly noted modality when discussing an ideal exercise program. Many participants drew upon their previous experiences and would like adaptations or opportunities to engage in those modalities, particularly more recreational and organically available exercise.

Resistance exercise includes short-duration exercises that enhance muscle and bone strength that are fueled by energy systems within the muscles as opposed to inhaled oxygen. ²⁸ Resistance exercises can be performed with equipment such as weights and resistance bands or using body weight. Fourteen participants reported a preference for resistance exercise in their ideal exercise training program. Statements related to resistance exercises were more direct such as PPT 009, “Dumbbells,” PPT 011, “lifting weights,” PPT 028, “deadlifts, squats, and Stairmaster, and a little bit of upper body.” PPT 002 elaborated a bit more with resistance exercises that include directions regularly provided at physical therapy using bands, “Papers that give you the exercises and show you how it is completed. Therabands to take home because that’s stuff that keep us moving.” Collectively, resistance exercise is noted as a key and vital component among the majority of participants, but there may be a gap in knowledge that must be addressed through comprehensive instruction to meet the guidelines (i.e., training all major muscle groups for 8-15 repetitions/set, 5-10 exercises with various equipment options).

Flexibility exercises are focused on stretching muscles and helping the body move through proper range of motion. Common modalities include yoga and stretching. Among participants, eight mentioned flexibility exercises as a key component within an ideal exercise program. PPT 033 cited stretching as a key component of their current exercise regimen, “I try to stretch before and after.” PPT 018 noted some nuance in their preference for stretching over more traditional, meditative yoga, “Stretching and different sort of like yoga, but not yoga. I don’t think I have the patience to do yoga.” Additionally, PPT 031 thought stretching was an area where adaptations are necessary and possible, “Yoga, a sit and stretch adaptive ways. Not always having to be on the floor.” Collectively, flexibility exercises are a foundational modality within the NMSS guidelines given their potential in assisting with symptoms such as spasticity and many participants highlighted stretching and yoga as key components of an ideal exercise program.

Neuromotor exercises outlined by the NMSS are defined as targeting fall prevention, postural stability, coordination, and agility at various levels of challenge (seated, standing, walking, upper limb). Common activities may include Pilates, dance, yoga, Tai chi, hippotherapy, virtual reality, and balance and motor control training. Ten participants mentioned exercises in the neuromotor category as a preferred component of an ideal exercise program. Core stability is a crucial component of neuromotor exercises that was mentioned by PPT 002, “Core is one of my key exercises besides walking.” Similar to flexibility exercises, PPT 007 mentioned the strength of potential adaptation within neuromotor exercise modalities, “There are different adaptive classes for tai chi and yoga.” Neuromotor exercises often fall within a more rehabilitative and functional movement realm that is key for supporting safety within the home and community for participants and is clearly identified as a necessary component of a comprehensive exercise program in this population. One notable component of our data synthesis is the overlap between modalities such as yoga and dance within aerobic, flexibility, and neuromotor exercises that are related to the focus on cardiovascular stimulus for aerobics, lengthening and stretching within flexibility exercises, and strengthening and coordination within neuromotor exercises, respectively.

Other considerations that were related to modality and format (i.e., what) included a desire for MS-specific programs, “I wish there were more actual MS Specific programs (PPT 007).” Further, PPT 019 provided insights that relate to the need for a theoretical foundation that incorporates motivational and instructional factors that influence exercise program uptake and adherence:

I think it would be definitely some sort of incentives. Maybe if I build up or get some points to get something free. Incentives generally push me to do it now. Maybe there's some questionnaires that could be taken in the beginning that will help them create a custom type of exercise, so they feel it's more personal to them and their goals for MS and exercise. So it feels more like that’s my goal. Questionnaires and the feedback just built it.

Relatedly, PPT 025 mentioned the usefulness of self-monitoring, “An app is useful. I think it’s good to track your progress and like being consistent about it.”

The When of a Program

The “when” of a program describes the participant-reported preferences regarding frequency of exercise behavior. Participant responses generally fit within a range of 3-5 times per week with 21 participants reporting a frequency within that range (Table 2). For example, PPT 001 reported, “My personal goal is to exercise it three times a week.” However, six participants mentioned a need for exercise or movement in general every day, “There should be some movement every day, something every day (PPT 031).” One additional nuance was the frequency of coach-led vs independent activity as highlighted by PPT 025, “I would say twice a week with the coach, and then maybe two to three times a week on your own.”

We note that data regarding exercise duration was not directly inquired about within this study, which would be a key component of “when.” Five participants mentioned duration within their response, for example, PPT 024, “Five days a week, for an hour.” We assert that these data are not comprehensive to represent the general preferences of this population and should be investigated directly in future studies. Additional notable considerations related to “when” included time of day with varying needs expressed by participants. PPT 007 stated, “It would be really good if we had something that was later at night” and PPT 031 said, “I do wish that there were more daytime classes, specifically for people with MS.” Taken together, this builds on a potential need for diverse options specifically designed to meet the needs of Hispanics with MS.

The Where of a Program

The “where” of an ideal exercise program encompasses participant preferences for location. Primary themes included home/remote (n = 10) and community (n = 18; Table 2). There were numerous reasons provided by participants that preferred home-based exercises including time, “Rather at home to save time (PPT 019),” dislike of a gym environment, “Ideally my house- I don’t really like gym (PPT 007),” and privacy, “I like at home workouts rather than going to the gym because it’s more private space (PPT 009).”

Community-based exercise preferences included outdoors or a formal setting such as a gym. PPT 015 said, “I would like to drive there, because if my house would be kind of boring,” and PPT 011 who had ongoing exercise experience said, “It’s got to definitely be at a gym.” PPT 024 stated a preference for, “Outside, would love it to be in the seventies, and no humidity,” which highlights a natural environment, but also highlights environmental considerations. Relatedly, PPT 031 mentioned several environmental components including temperature, lighting, and water, “for myself a very cold room. The lights just need to be neutral. Not very bright and access to cold water.” There was some additional nuance related to time expressed by PPT 008, “if I do go to the studio it’s maybe once or twice a week.”

The overarching theme of preferences for “where” of an exercise program aligns with ongoing individual or personal preferences. Time, transportation, accessibility, and environmental considerations all play a role in preferences among Hispanics with MS that warrant adaptive approaches to exercise delivered in both home and community-based settings.

The Who of a Program

The “who” of an exercise training program involved individuals who would be involved in the exercise program. This theme encompassed those who would deliver or lead an exercise training program as well as those who would participate in the exercise training program. The most common themes among participants included a coach (n = 13), group (n = 14), combination of coach and group (n = 7), and independent exercise (n = 5; Table 2).

Exercise training programs often include a coach or trainer to lead in instruction and accountability, which seemed of value among participants. Some participants noted an interest in a person with a background specifically related to MS, such as PPT 001, “In my ideal world I would have an MS PT Specialist.” PPT 004 mentioned a personal trainer to individualize activities that was more general, “I will love a personal trainer to help you find what’s best for you where they’re not just making money off of you.” PPT 025 mentioned the location of the coach as a priority, “I would say having a virtual coach.”

Group-based exercise programs were a common preference among participants. PPT 002 noted the social benefits of group-based programs, “I love to go out. I love mingling with people, I love to socialize with people.” Many participants mentioned a group specifically for persons with MS or other neurological diseases, “It’d be great if it was just MS Patients, but really any patients who had difficulty because of neurological issues (PPT 024).” Similarly, PPT 013 said, “I’d really want to do it with another individual who has MS.” PPT 018 provided some additional insight on their preference for other people in a group with MS, “People with MS. I think that would help and something really basic and no judgment.”

An additional theme was warranted given seven participants mentioned a preference for a combination of individuals within their response. For example, PPT 034 said, “Somebody that knows about MS. On the trainer side or being with other people with MS.” PPT 017 preferred independent exercising, but was open to group-based options:

I prefer by myself, but other times like I don't mind with other people. I think like doing something like Zumba, that would be fun with other people.

Family involvement with a coach was highlighted by PPT 019, “Maybe as a family or with my son. To have a virtual coach on the TV screen.”

The last notable theme related to “who” of an exercise program was completely independent. PPT 009 felt they were less likely to be judged on their own at home, “Preferably by myself, where nobody is really judging you. I like to do my own thing.” PPT 010’s preference was for independent exercise, but in a gym setting, “I’ve always just kind of gone in and done my own thing. I would just do it myself.” Overall, the “who” of an exercise program is another component that must be tailored to individual needs and preferences and leverage the breadth of opportunities and resources available with current technology.

Hispanic Culture

All participants were asked about their opinions regarding the need for cultural adaptations to address the unique needs of Hispanics with MS related to Hispanic culture. The primary themes within this category were language (n = 9), cultural norms (n = 9), priorities (n = 6), music/dance (n = 5), and instructor characteristics (n = 3; Table 2).

Language translation is a surface-level adaptation that can be considered as a foundational component for ensuring an exercise program meets the needs of the Spanish-speaking MS community. PPT009 stated that they thought language was the primary factor that would need to be adapted, “I think the language, it would probably be about it.” PPT 005 provided a clear example of a friend for whom language translation would be critical for engaging in an exercise program:

If they were available in Spanish it would be really helpful. For me language is not an issue, but a lot of my friends... For example, my sister moved to the U.S. with her husband and she never assimilated. She never learned the language quite up to the same level.

We highlight that language does not only include direct translation to Spanish, but also reading level and considerations for health literacy among sub populations that would be key from a cultural adaptation lens.

Participants mentioned various cultural norms that influence exercise behavior of Hispanics that must be considered in developing an exercise training program. PPT 013 mentioned differences in general perceptions of the term exercise as being more associated with sport:

The word exercise, in terms of Hispanic, we associate that with we have to go play football soccer, or you have to do a marathon, or running or cycling. They may associate it with like hardcore athletics. If you’re a girl, we don't want to. There was more of let me teach you how to cook.

This quote further highlighted gender role differences reported by many participants, “I don’t think the way I grew up they don’t really encourage exercise or for girls or get dirty. Girls aren’t supposed to be sweaty or messy (PPT 036),” and “I think the education is kind of where we lack…he has that stereotypical like. Oh, you’re a girl you shouldn’t be lifting weights overhead. I’m like no, that’s not how that works (PPT 028).” PPT 018 mentioned social components of exercise among Hispanics, “walking and gossiping, talking about the latest novela.” These quotes collectively highlight major differences that may be considered when approaching exercise training among Hispanics related to gender and acculturation that are often deeply ingrained.

Competing priorities were another major theme that can impact exercise behavior and necessary cultural adaptation. Work priorities were a prominent factor, for example, “I think we’re hard workers for sure, but I don’t think that they go out and seek exercise so much (PPT 037).” PPT 028 mentioned timing related to work schedules and family life:

It's an exercise class late at night because most of us have families, children we have to watch over, or we work till five. Family workout classes because a lot of us have huge families. If I can take my little brother with me and we can work out together.

PPT 024 provided some additional insights related to priorities of mothers within the Hispanic culture, “My mom and other wonderful role models were great moms, but I don’t know if they took enough time out for themselves to exercise or to do stuff like that.” The priorities reported by participants clearly align with considerations among the general Hispanic population and generational differences may be warranted.

Music and dance were mentioned by five participants as crucial factors for engaging Hispanics with MS in exercise. One interesting subtheme was that music was associated with positive mood. For example, PPT 007, “We tend to like a lot of music, all different types, but it’s also something that it engages your mind and your body in a way that you know tends to make people pretty happy.” Additionally, PPT 012 mentioned their personal connection between music and mood, “I really think music is important. I think music makes me like want to dance, want to move, and puts me in a better mood.” Further, dance modalities may be more fun than traditional exercise as stated by PPT 029, “I guess Salsa class or something like that would be super fun. Just make it more fun, culturally directed towards us.” There is a strong body of evidence regarding the impact of music on exercise enjoyment that should be adapted for the interests of Hispanics with MS. ³⁰

One novel theme that was mentioned by three participants was instructor characteristics that are particularly relevant for Hispanics with MS. PPT 017 mentioned a culturally similar instructor from the individual’s community:

An instructor that looks like them and speaks their language. Instead of translating the video, having like a Spanish speaking instructor leading the class.

PPT 031 had a related insight regarding instructors, “Encouraging community members in that area to become instructors is really important to ensure that they have somebody that they can relate to and the information is out there may not always be in Spanish.” PPT 008 mentioned considerations for the gender of the instructor as well, “It’s going to be an issue that your instructor is not the same gender as you.” Therefore, some instructor characteristics to consider include alignment from a cultural or community member/peer standpoint as well as gender.

Advertising

We inquired about future advertising of an exercise program for Hispanics with MS given no previous studies have directly recruited the Hispanic MS population, which may be harder to reach. The most common source identified by the participants was MS-specific resources such as the NMSS Website (n = 17; Table 2). Sixteen participants mentioned within a health care setting as the most appropriate location to advertise an exercise training program. Social media and general online sources were highlighted by 14 participants that included common platforms such as Facebook or Instagram, particularly when there are MS-specific groups to reach. Lastly, some novel insights were provided related to general community locations by 10 participants including churches, Mexican supermarkets, taco trucks, schools, coffee shops, any bulletin board at a recreation center or library. Overall, these insights provide a springboard for engaging Hispanics with MS in future research that go beyond traditional recruitment efforts.

Discussion

The current study aimed to inquire about an ideal exercise training program that meets the preferences of Hispanics with MS. The primary themes of interest included “what, when, where, and who” of the exercise training program to provide a foundation for the development of culturally appropriate exercise training interventions. The “what” of an exercise training program focused on modalities of interest with a primary interest in walking, resistance training, Zumba/dance, biking, neuromotor, and flexibility exercises. The majority of participants focused “when” on frequency, with some participants indicating that they thought some movement was crucial on a daily basis, but overall, a primary range of 3-5 days/week. The “where” of an exercise program aligned with many previous studies that included a combination of preferences for community- and home-based options for exercise training.^17,20 Participant-reported preferences for “who” would ideally be involved in an exercise training program were diverse, but some common themes were groups, especially with other persons with MS, as well as a coach in person or remote. Some additional considerations of interest included time of day for exercise (when), appropriate environment when considering heat (where), and further information is needed regarding preferences for duration (when). Collectively, these results, summarized in Figure 1, provide a strong foundation for the identification of an appropriate exercise training program that may be created or adapted to meet the needs of Hispanics with MS.

Figure 1.

Exercise training program for Hispanics with multiple sclerosis: Context, prescription, and cultural adaptations.

One unique component of the current study is the direct inquiry regarding preferences for exercise training that are relevant for persons with MS related to Hispanic culture. The discussion primarily focused on language, and this was not surprising as there are limited resources available regarding exercise for persons with MS in Spanish and we specifically note that translation is an iterative process that includes considerations for differences in dialects, slangs, and literacy. ³¹ The general cultural components identified by participants align closely with barriers to exercise training outlined in the general Hispanic population including gender stereotypes, particularly related to more organic physical activity behavior among women (e.g., walking and gossiping) and among men, an inclination towards more sport-specific exercise behavior (e.g., playing soccer/futbol).^32,33 Competing priorities related to work and family commitments are another common barrier in the general Hispanic population exercise literature that was a notable theme highlighted among participants in this study that may be addressed through adaptive approaches to the primary themes of “where, who, and when.” Music and dance were specifically addressed by participants when discussing Hispanic culture, which may have a direct impact on modalities encouraged for Hispanics (i.e., what) or suggested adaptations related to the overall environment created for facilitating exercise training (e.g., selecting music that will keep individuals motivated). Lastly, one striking theme was the need for consideration of potential coach or instructor characteristics, particularly a strong rationale for ensuring the leaders are identified from within the community as well as considerations related to gender appropriateness and comfort. The findings related to Hispanic culture closely align with previous literature among Hispanics in the general population, which provides a strong body of evidence for moving forward in cultural adaptation based on established frameworks.

Hispanics with MS have been virtually absent from the exercise training literature and it is unclear if this absence is due to lack of interest or poor efforts for targeted recruitment. We assert that health disparities among Hispanics with MS are directly tied to inequities that make it challenging for many individuals to access traditional and comprehensive neurological services.^3,4,34-36 Therefore, we inquired directly about advertising of future exercise training programs and resources to help reach this understudied and often hidden subpopulation in the MS community. Participants most commonly identified MS-specific resources such as the NMSS, but also health care providers that may span beyond top neurology centers such as community-level clinics that serve fewer, but a more diverse patient population. Additionally, harnessing of social media and online resources was widely acknowledged as an opportunity as well as being creative with general community locations that Hispanics frequent such as churches, schools, or supermarkets. We assert that reaching a broader scope of the Hispanic MS community needs to be an ongoing emphasis among researchers and clinicians.

The current study was completed in conjunction with a large cross-sectional study examining social cognitive theory (SCT) correlates of current exercise behaviors among Hispanics with MS. ²⁵ The cross-sectional study indicated that level of disability (i.e., impediments), exercise planning, and exercise self-efficacy were associated with current exercise behaviors among 153 Hispanics with MS. ²⁵ Those factors should be considered in creating an SCT-based exercise training curriculum. However, the current study highlights additional SCT-components and behavior change techniques to consider wherein many participants emphasized the need for self-monitoring, accountability, social support, motivation, and incentives. ³⁷ Collectively, findings from cross-sectional and qualitative studies support SCT as an appropriate theoretical framework for developing exercise training programs for Hispanics with MS.

The foundational guidelines for exercise for persons with MS outlined a minimum recommendation of two times per week 30 minutes of aerobic exercise and two times per week training of major muscle groups for eliciting benefits of exercise such as symptom management and overall health. ³⁸ Project GEMS: Guidelines for Exercise in Multiple Sclerosis created a home-based exercise training program to help persons with MS meet the physical activity guidelines through an SCT-based behavior change curriculum.^39,40 Participant preferences in the current study are aligned with the foundational “what, when, where, and who” of GEMS. Further, GEMS has been successfully adapted for persons with significant mobility disability for home- or community-based delivery (STEP for MS), ⁴¹ and additional adaptations are currently being tested in randomized controlled trials among African Americans with MS and wheelchair users with MS.^19,23 All adaptations of GEMs have included community-engaged research methods aligned with the current study that provide support for considering a robust cultural adaptation of GEMS for Hispanics with MS.

This study is not without limitations. We aimed to recruit a diverse sample from across the United States; however, the current sample may not be representative of the broader Hispanic MS community. In particular, future research may consider recruitment efforts that consider subgroups by Hispanic country or region of origin given there can be vast cultural differences that span beyond identification as Hispanic. Additionally, this online study provided compensation for participating in the interviews. We believe that this incentive led to the engagement of four individuals who were not diagnosed with MS, all seeking the $50 gift card reward. We recommend further, cogent screening in future studies to mitigate potential threats to integrity of research study data. Lastly, as highlighted within the manuscript, there can be overlap in various modalities of interest across categories of exercise within the NMSS recommendations, such as yoga and tai chi, that must be further developed and refined as we move forward in dissemination and implementation of exercise guidelines that are clear and implementable, particularly among populations with lower literacy and foundational exercise knowledge.

Prevalence of MS is growing among the Hispanics population and there is a dearth of evidence and resources currently available to support second-line, lifestyle therapies for management of MS symptoms. The current study is the first qualitative inquiry regarding exercise training needs and preferences of Hispanics is MS. This effort provides a strong foundation for moving forward in creating culturally appropriate resources to support the unique needs of Hispanics with MS with a focus on ongoing partnership and precedence on hearing the voice of the target population.