Informing the development of a mobile application for the physical activity guidelines in multiple sclerosis: a qualitative, pluralistic approach.

PURPOSE: The uptake of Physical Activity Guidelines (PAGs) for adults with multiple sclerosis (MS) may be facilitated through mHealth solutions such as a mobile app. To date, there is limited information regarding preferred features of an app for people with MS. We explored desired features for an app that supports physical activity behaviour among persons with MS. MATERIALS AND METHODS: Using a pluralistic analytical approach, we conducted a secondary qualitative analysis on a portion of data collected from an earlier study to explore (i) what persons with MS wanted in an app based on the PAGs and (ii) how the PAG-based app should facilitate behaviour change. The data were subjected to deductive, content analysis to identify populous mentions of desired PAG-based app elements. We then used inductive, semantic reflexive thematic analysis to further explore the opinions and evaluations of participants. RESULTS: Participants (n = 16) perceived features such as activity tracking, incentives for completing milestones, and customization as both triggers for doing PA and supporting engagement with the app. Participants desired a personalized PA prescription based on mobility and fitness level, expert feedback based on data entered in the app, and an exercise library with a range of evidence-based content. Participants insisted the app be backed by a solid scientific foundation and that accessibility of personal data be controlled by the user. CONCLUSIONS: This study identifies several design considerations for an app based on the PAGs. The results suggest a simple, trustworthy, and evidence-based app that focuses on helping persons with MS reach the PAGs.

mHealth technologies could be an empowering and inclusive method of supporting physical activity uptake among persons with multiple sclerosis (MS).Knowledge is currently lacking regarding how mHealth technologies, such as mobile apps, can facilitate uptake of Physical Activity Guidelines for Adults with MS (PAGs).People with MS (N = 16) desired an app grounded in a solid scientific foundation, but then translated into simple, accessible, personalized physical activity guidelines that focused on achieving activity goals.Motivational, functional, and personalization strategies should be included in the development of an app based on the PAGs.

Desired Resources for Changing Diet Among Persons With Multiple Sclerosis: Qualitative Inquiry Informing Future Dietary Interventions.

BACKGROUND: There are approximately 1 million adults in the United States with multiple sclerosis (MS). Persons with MS are interested in diet as a second-line therapy for improving MS symptoms and disease progression. Examination of desired resources regarding diet among persons with MS is necessary for supporting behavior change. METHODS: Twenty-five adults with MS completed 1-on-1, online semistructured interviews. An inductive, 6-phase, semantic thematic analysis was applied to identify themes associated with participant preferences for dietary behavior change. RESULTS: The research team crafted 4 key themes from the data that encompassed participants' desired resources for dietary behavior change. Theme 1, MS-specific evidence, involved the need for clear information about the impact of diet regimens or specific foods on MS. Theme 2, dietary guidelines, was related to guidelines provided by a reliable source such as a registered dietitian. Theme 3, behavioral supports, underscored the need for support for behavior change, including accountability, self-monitoring, motivation, habituation, and incremental changes. Theme 4, diet resources, highlighted tangible resources for supporting dietary change, including recipes, food lists, meal services, or games. CONCLUSIONS: This study provides a foundation for guiding dietary interventions for persons with MS that incorporates their needs and preferences and could improve their overall health. Such dietary change can be facilitated by theory-based behavioral interventions that incorporate behavior change techniques such as self-monitoring and goal setting for supporting behavior change.

Exercise experiences among persons with multiple sclerosis living in the southeast of the United States.

PURPOSE: Exercise is one of the best behavioral approaches for improving health and wellbeing among persons with multiple sclerosis. The environment is a key influencer regarding engagement in this health enhancing activity among those with multiple sclerosis, yet existing research has often been restricted amongst Caucasian samples residing in the midwest and northwest of the United States, Europe and New Zealand. This study explored experiences of exercise among persons with multiple sclerosis from the southeast of the United States. MATERIALS AND METHODS: We interviewed 32 persons with multiple sclerosis from the southeast of the United States regarding exercise experiences, and then undertook an inductive, semantic thematic analysis. RESULTS: The racially diverse sample of persons with multiple sclerosis in the southeast of the United States permitted a crafting of five themes that reflected lived experiences of exercise; (i) exercise is a therapeutic strategy, (ii) facilitators of exercise, (iii) barriers of exercise, (iv) ineffective exercise promotion, and (v) necessities for improved exercise promotion. CONCLUSION: Experiences of exercise in multiple sclerosis are transferable up to a point, but exercise interventions should be contextually specific depending on the geographic area and culture of persons with multiple sclerosis.Implications for RehabilitationExercise is one of the only strategies that improves symptoms of multiple sclerosis and improves quality of life.Cultural and geographic climate may significantly influence exercise experiences, and subsequent engagement of exercise among persons with multiple sclerosis.Practitioners working with persons with MS in the southeast of the US should consider designing exercise programs that take into account the oppressive climate of this area.Persons' with MS cultural and geographic backgrounds should be considered when designing exercise programs to ensure more individualized and appropriate application.

Models and materials for exercise promotion in comprehensive multiple sclerosis care: completion of the 'exercise in medicine' development process.

PURPOSE: Health care providers have highlighted the need for tools and resources that support promotion of exercise behavior within comprehensive multiple sclerosis (MS) care. This study involved a final quality improvement evaluation of exercise promotion models and materials for inclusion within this setting. METHODS AND MATERIALS: Our research team distributed a paper-based survey containing Likert scales, open answer questions, and copies of the models for editing. We distributed this survey among health care providers across the United States. We conducted a novel mixed-methods analysis evaluating quantitative, qualitative, and creative data. RESULTS: We received completed surveys from 13 health care providers who strongly rated the clarity and applicability of the models and materials, and reported that no major improvements were necessary. The minor improvements were specific per comprehensive MS care center. The feedback indicated that the "Exercise in Medicine" models and materials are guides such that the processes should be integrated into real world practice by amending roles and responsibilities with the team members and structure per comprehensive MS care center. CONCLUSION: This paper presents finalized models and materials for exercise promotion within comprehensive MS care that are ready to be tested for feasibility and efficacy in a clinical trial.IMPLICATIONS FOR REHABILITATIONHealth care providers require support to promote exercise within the context of comprehensive MS care.The practice models in this article provide guides regarding how to promote exercise in this context.Implementing these exercise promotion guides can reduce the burden of neurologists, and ensure patients receive exercise support from appropriate providers.These guides should be implemented within the context of each individual care center, and not as an explicit step by step guide as each care center is unique.

Using Quality Improvement for Refining Program Materials for Exercise Promotion in Comprehensive Multiple Sclerosis Care.

INTRODUCTION: There is a gap between evidence-based knowledge of exercise benefits and the translation of these benefits among persons with multiple sclerosis within clinical practice. This study represents the second cycle of a Plan-Do-Study-Act ramp to assess and improve three exercise promotion practice models and a screening process for use by healthcare providers to bridge the knowledge-translation gap within comprehensive multiple sclerosis care. METHODS: Using a quality improvement design, our research team created an online survey for evaluating program materials by healthcare providers (i.e., neurologists, nurses, physical therapists, and occupational therapists). Participants provided written comments and suggestions for improvement regarding roles and responsibilities and clarity and relatability of these tools within a real-world setting. RESULTS: Healthcare providers submitted 13 suggestions for improvement. Responses informed four specific improvements regarding program materials (i.e., patient screening, current exercise behavior, referrals, and provider checklists), thereby prompting the research team to adapt and further test the change idea. CONCLUSIONS: This article provides a step forward in a line of research focused on developing a systems-based process for integrating exercise promotion as part of comprehensive multiple sclerosis care.

The Neurologist as an Agent of Exercise Rehabilitation in Multiple Sclerosis.

This review hypothesizes that the neurologist represents the linchpin of exercise behavior change within comprehensive multiple sclerosis (MS) care settings. This is based on a series of recent articles that developed actionable practice models for accomplishing such behavior change through the neurologist as the primary agent. This provides tangible, next steps for exercise promotion in MS.

"Kicking and Screaming" or "Gracefully Conceding": Creative Nonfiction Stories of Aging With Multiple Sclerosis.

Aging with multiple sclerosis (MS) is a complex phenomenon. Some individuals report physical and cognitive dysfunctions regarding these combined experiences, whereas others report perceived improvements in quality of life. Beyond this, little is known regarding how people make sense of, and come to embody, negative or positive experiences of MS. Thus, our objectives were to (a) explore how people made sense of aging with MS and (b) present this in an artful, engaging, transformative way. To achieve this, we conducted 40 semi-structured interviews with older adults who had MS, analyzed data using pluralistic narrative analyses, and presented results through two creative nonfictions. We detail our process of creating the nonfictions before presenting the different stories of aging with MS, namely "Kicking and Screaming" and "Gracefully Conceding." We then offer recommendations and implications for using these stories as knowledge translation devices, and further critique the limitations of these stories in practice.

Informing the design of exercise programs for persons with multiple sclerosis who use wheelchairs: a qualitative inquiry of perceived components.

PURPOSE: We investigated the perceptions of persons with multiple sclerosis (MS) who use wheelchairs regarding preferences for the design of exercise programs. MATERIALS AND METHODS: We conducted online, semi-structured interviews with 20 persons with MS who use wheelchairs regarding preferences for exercise programs. We identified perceived necessary and desired components of exercise programs through deductive content analysis. RESULTS: Participants articulated preferences for "what", "when", "where", and "who" of exercise programs for persons with MS who use wheelchairs. The majority of participants expressed an interest in aerobic and strength training, possibly supported by rehabilitation therapies (what). The frequency was 2-7 times per week with a duration of 15-30 minutes (when). The locations included home-, Internet-, or community-based exercise (where), supported through autonomous, one-on-one, and group delivery (who). CONCLUSIONS: Persons with MS who use wheelchairs were interested in exercise, but need resources for engagement in regular exercise programs that yield meaningful health benefits. This study provided guidance for creating personalized, structured exercise programs for persons with MS who use wheelchairs that may improve overall wellness, independence, and quality of life.Implications for rehabilitationExercise training programs often do not account for the unique needs and wants of persons with multiple sclerosis (MS) who use a wheelchair.Personalized, structured exercise programs for persons with MS who use wheelchairs may improve outcomes including independence and quality of life.The proposed exercise guidelines provide initial guidance for persons with MS who use wheelchairs regarding engagement in exercise for improving MS symptoms and quality of life.

The experience and meaning of aging with multiple sclerosis: An existential phenomenological approach.

OBJECTIVES: Over the past 3 decades there have been significant advances in the development of pharmaceutical and rehabilitative treatments for persons with multiple sclerosis (MS), such that life expectancy is continuing to increase. Whilst these advancements are exciting, there are also concerns and unknowns regarding what it is like to age with MS. The objectives of this research were to explore the lived experiences and meaning of aging in conjunction with having MS. METHODS: Semi-structured interviews with 40 persons with MS over 60 years were conducted. Thereafter data were subject to an existential phenomenological analysis. RESULTS: Four different ways were discussed with regards to embodied experiences of aging with MS: aging makes MS worse; MS makes aging worse; aging makes MS better; and MS makes aging better. DISCUSSION: This research highlighted the complexity of aging with MS and the various of ways persons over 60 with MS experience and interpret this phenomenon.

Social cognitive theory as a guide for exercise engagement in persons with multiple sclerosis who use wheelchairs for mobility.

Multiple sclerosis (MS) is an immune-mediated neurodegenerative disease of the brain, optic nerves and spinal cord. Among persons with MS, 30% experience significant mobility impairment that requires use of a wheelchair for mobility. Exercise is an evidence-based second-line therapy that can improve mobility; however, little research has focused on individuals that use wheelchairs for mobility. Framed by social cognitive theory (SCT), we conducted a formative qualitative study examining exercise status and perceptions among 20 persons with MS who use wheelchairs for mobility. Using deductive, semantic thematic analysis, we coded for SCT variables (i.e. self-efficacy, knowledge, outcome expectations, barriers and facilitators) and identified participants as regular or inconsistent exercisers. In total, 12 participants were classified as regular exercisers and 8 inconsistent exercisers. Regular exercisers more frequently reported high self-efficacy, consistent exercise knowledge and numerous facilitators. All participants reported some positive outcome expectations and several barriers and facilitators. These findings can inform future intervention studies supporting exercise behavior change through SCT. Strategies such as increasing self-efficacy, imparting instructional materials, shaping realistic outcome expectations and providing tools directed toward overcoming barriers and identifying facilitators may work to support the exercise endeavor of persons with MS who use wheelchairs for mobility.

Evaluation of a Conceptual Model Regarding Exercise Promotion Through the Patient-Provider Interaction in Multiple Sclerosis: Health Care Provider Perspectives.

Nearly 80% of persons with multiple sclerosis (MS) do not engage in sufficient amounts of exercise for managing symptoms and improving quality of life. We have addressed this problem by developing a systematic line of qualitative research targeting the patient-provider interaction for promotion of exercise within comprehensive MS care. This research resulted in a conceptual model that guides health care providers in promoting exercise among persons with MS. The current study involves a final evaluation of the model based on semistructured interviews with 28 MS health care providers. Providers perceived that the model was a strong conceptualization of practice that reflected the MS illness course and supported exercise behavior change, but more steps were required to translate the model from concept into practice, including improved clarity of the model, and the development of practice models. The evaluation yielded a final conceptual model for exercise promotion in MS through the patient-provider interaction.

Exercise behaviors of persons with multiple sclerosis through the stepwise implementation lens of social cognitive theory.

Background: Bandura has identified knowledge and four core determinants (e.g., self-efficacy, outcomes expectations, goals, and facilitators/impediments) along with a threefold stepwise implementation model for guiding health promotion and disease prevention interventions.Aims: This research explored the exercise behaviors of persons with multiple sclerosis (MS) through the articulated lens of social cognitive theory.Methods: We conducted secondary analysis of qualitative data from 50 people with MS using deductive, thematic analysis. Participant data were sorted into the three levels of Bandura's threefold stepwise implementation model using our collective perception of espoused beliefs regarding knowledge and the four core determinants of health promotion.Results: Participants expressed the four core determinants of health promotion and knowledge regarding exercise in different ways that permitted classification into distinct levels of Bandura's threefold stepwise implementation model.Conclusions: The confirmation of the four core determinants of health promotion and knowledge aligning with the threefold stepwise implementation model will allow better tailoring and targeting of exercise promotion interventions by healthcare providers, fitness professionals, and researchers.Implications for rehabilitationPersons with multiple sclerosis (MS) are not as physically active as the general population of adults.There is substantial evidence of health benefits through exercise, yet lack of sufficient participation.Interventions for persons with MS in level 1 of Bandura's threefold stepwise implementation model should focus on maintenance of current exercise; technologies to track, record, and share exercise habits; information and guidance that is specific to individual symptoms; and updates on advancements in MS research.Interventions for persons with MS in level 2 of Bandura's threefold stepwise implementation model should raise awareness and understanding of the importance of exercise and overall health; motivational strategies; and low or no-cost options for exercise.Interventions for persons with MS in level 3 of Bandura's threefold stepwise implementation model should focus on establishing a connection between health and exercise; health communication; and incremental steps toward exercise.

The priorities of neurologists for exercise promotion in comprehensive multiple sclerosis care.

BACKGROUND: Fewer than 20% of persons with multiple sclerosis (MS) engage in sufficient amounts of exercise for experiencing health and wellness benefits. Neurologists have a powerful and influential relationship among patients, highlighting the potential for the patient-provider interaction to be a gateway for promoting exercise behavior. Neurologists, however, are under-supported and under-resourced for promoting exercise in comprehensive MS care. The purpose of this study was to determine the priorities of neurologists for exercise promotion among patients in comprehensive MS care and, where possible, provide suggestions for how each priority may be addressed in practice. METHODS: Priority areas were identified through deductive content analysis of 20 semi-structured interviews with practicing neurologists. RESULTS: Seven priority areas were identified regarding promotion of exercise among patients in comprehensive MS care. These included 1). How do I fit exercise promotion into a patient's appointment? 2). What resources should I give my patients about exercise? 3). What are the benefits of exercise for people with MS? 4). What training can I do to be better informed about exercise? 5). What are the prescriptions/guidelines for exercise among persons with MS? 6). What kind of services can I rely on to support me in promoting and supporting exercise behavior? 7). How do I negotiate reimbursement and insurance restrictions when I promote exercise? CONCLUSIONS: This research sets an agenda regarding approaches for exercise promotion among patients with MS through interactions with neurologists in comprehensive care settings.

A Qualitative Study of Exercise and Physical Activity in Adolescents with Pediatric-Onset Multiple Sclerosis.

BACKGROUND: Pediatric-onset multiple sclerosis (POMS) accounts for up to 5% of all multiple sclerosis (MS) cases. Of note, the existing literature regarding physical activity and POMS is sparse, and there is limited insight about the lived experiences of individuals with POMS regarding physical activity, including perceptions of its benefits, barriers, facilitators, and promotion. METHODS: We conducted a qualitative exploration of physical activity perceptions and experiences and of preferences for a physical activity intervention in eight persons with POMS. Using semistructured interviews and interpretative phenomenological analysis, we crafted numerous themes that provide new knowledge of physical activity experiences and preferences in this population. RESULTS: The adolescent participants believed that physical activity would be beneficial and important but further believed that it can often be boring and may worsen POMS symptoms. Participants described adequate symptom management, social support, time, and opportunity as facilitators of physical activity, and lack of social support, time, and opportunity as hindrances. The interviewees described that components of a future intervention should focus on education regarding specific exercises, outcomes, and safety during exercise and provide opportunities for social engagement with other individuals with POMS. CONCLUSIONS: This qualitative study provides novel findings regarding the perceptions and experiences of physical activity in POMS. An important step in crafting an understanding of physical activity behavior in POMS, this study serves to inform the development and delivery of physical activity behavioral interventions.

Use of the Godin leisure-time exercise questionnaire in multiple sclerosis research: a comprehensive narrative review.

PURPOSE: The Godin Leisure-Time Exercise Questionnaire has been a commonly applied measure of physical activity in research among persons with multiple sclerosis over the past decade. This paper provides a comprehensive description of its application and inclusion in research on physical activity in multiple sclerosis. METHOD: This comprehensive, narrative review included papers that were published between 1985 and 2017, written in English, involved participants with multiple sclerosis as a primary population, measured physical activity, and cited one of the two original Godin papers. RESULTS AND CONCLUSION: There is a broad scope of research that has included the Godin Leisure-Time Exercise Questionnaire in persons with multiple sclerosis. Overall, 8 papers evaluated its psychometric properties, 21 evaluated patterns of physical activity, 24 evaluated correlates or determinants of physical activity, 28 evaluated outcomes or consequences of physical activity, and 15 evaluated physical activity interventions. The Godin Leisure-Time Exercise Questionnaire is a valid self-report measure of physical activity in persons with multiple sclerosis, and further is an appropriate, simple, and effective tool for describing patterns of physical activity, examining correlates and outcomes of physical activity, and provides a sensitive outcome for measuring change in physical activity after an intervention. Implications for rehabilitation There is increasing interest in physical activity and its benefits in multiple sclerosis. The study of physical activity requires appropriate and standardized measures. The Godin Leisure-Time Exercise Questionnaire is a common self-report measure of physical activity for persons with multiple sclerosis. Godin Leisure-Time Exercise Questionnaire scores are reliable measures of physical activity in persons with multiple sclerosis. The Godin Leisure-Time Exercise Questionnaire further is an appropriate, simple, and effective tool for describing patterns of physical activity, examining correlates and outcomes of physical activity participation, and is an advantageous primary outcome for measuring change in physical activity in response to an intervention.

Evaluation of a Conceptual Model to Guide Health Care Providers in Promoting Exercise Among Persons With Multiple Sclerosis.

Fewer than 20% of persons with multiple sclerosis (MS) engage in enough exercise to manage MS symptoms and improve function. To address this problem, the authors developed a conceptual model to promote exercise among persons with MS through the patient-provider interaction within health care settings. The current qualitative study evaluated and refined the conceptual model based on 32 semistructured interviews involving persons with MS. The data were subject to inductive, semantic thematic analysis. Participants highlighted that the conceptual model was a necessary addition to current MS care and noted multiple strengths regarding its design (e.g., structure) and content (e.g., patient-provider interaction). Furthermore participants noted areas of the conceptual model that could be improved (e.g., less focus on neurologists as exercise promoters). This comprehensive evaluation yielded a refined conceptual model for exercise promotion in MS through the patient-provider interaction.

The psychosocial impact of wheelchair tennis on participants from developing countries.

PURPOSE: Individuals with physical disabilities in developing countries can experience many instances of psychosocial hardship. Although scholars have suggested that participation in sport can positively impact psychosocial health, few studies have explored this phenomenon within the disabled population of developing nations. METHODS: Sixteen wheelchair tennis players were recruited across six developing countries and interviewed in regards to their experiences. Data were collected using semi-structured interviews, transcribed verbatim and subject to thematic analysis. RESULTS: Wheelchair tennis players perceived their participation in sport enhanced their psychosocial well-being. Three broad themes emerged from analysis of the interviews; (1) developed transferrable skills, (2) perceived personal growth and (3) benefits of an athletic identity. CONCLUSIONS: Sports participation, in this case wheelchair tennis, may be a viable means to promote psychosocial well-being in disabled populations within developing nations. Moreover, sport holds the potential to challenge negative perceptions of disability at an individual and societal level within these cultures. Implication for Rehabilitation Individuals with physical disabilities in developing countries may experience psychosocial hardship and cultural stigma. Wheelchair sport may be a viable means to enhance psychosocial well-being in this population. Skills learnt "on court" are transferrable to everyday life potentially improving independence and quality of life. Identifying as an athlete can challenge negative cultural perceptions of disability.

Collective Stories of Exercise: Making Sense of Gym Experiences With Disabled Peers.

Using a dialogical narrative approach, we explored how disabled people made sense of their gym experiences as part of a peer group. Interviews were conducted with 18 disabled people (10 men and 8 women, aged 23-60) who had experience exercising in the gym as part of a group. Data were rigorously analyzed using a dialogical narrative analysis. Within their peer group, participants crafted a collective story that they used to resist disablism in the gym. The dialogical components of the collective story functioned to (a) validate participants' experiences of oppression in the gym, (b) forge an unspoken understanding with peers, (c) craft a more affirmative identity, and (d) instill a sense of empowerment in participants so that they can tell their own story. This study extends knowledge in the field of exercise and disability by showing that despite the oppression disabled people experienced in the gym, they can create a collective story, which is useful for helping to promote and sustain exercise in this space.

Disability and the gym: experiences, barriers and facilitators of gym use for individuals with physical disabilities.

PURPOSE: Individuals with physical disabilities are among the most inactive population in society, arguably due to the lack of suitable environments to exercise. The gym is a space dedicated to improving physical fitness in a controlled environment with specialized equipment and qualified instructors. The feasibility of using this space to promote health to this population, however, is yet to be established. METHOD: Over an 18-month period, 21 people with physical disabilities were interviewed regarding their experiences in the gym. Data were collected using semi-structured interviews, transcribed verbatim, and subject to thematic analysis. RESULTS: Four broad themes were identified: (1) experiencing enhanced well-ness, (2) perceived conflict between gym values and disability, (3) influence of a previous gym identity, and (4) experiences of psycho-emotional disablism. CONCLUSIONS: Participants were perceived to experience a variety of health benefits; however, they also experienced many barriers such as not aligning to the cultural norms of the gym, limited interpretations of health, oppressive messages from the built environment, and negative relational interactions. While there is potential for the gym to be used as a place to promote health, more must be done to foster an inclusive atmosphere in this space. Implications for Research The gym may be a viable place to promote health enhancing behaviors to this population as participants perceived physical, social, and psychological improvements through exercising in this space. Barriers such as not aligning to cultural norms of the gym, psycho-emotional disablism, and a lack of representation in the gym were perceived to hinder exercise participation. Gyms should consider funding instructors to go on courses teaching them how to train an individual with a disability, and also consider employing instructors with a disability to mediate the socio-cultural barriers perceived to exist in the gym. Men and women's past identity as gym users had different ramifications regarding their adoption of exercise after disability, therefore, professionals working in this field should be cognizant of this when designing and delivering exercise programs during and after rehabilitation.