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ORIGINAL RESEARCH article

Front. Rehabil. Sci., 18 March 2024
Sec. Disability, Rehabilitation, and Inclusion
This article is part of the Research Topic Vol II: Person-Centred Rehabilitation – Theory, Practice and Research View all 3 articles

The meaningfulness of exploring one's own limits through interactions and enjoyment in outdoor high-intensity physiotherapy for people with multiple sclerosis: a qualitative study

  • 1Faculty of Nursing and Health Sciences, Nord University, Bodø, Norway
  • 2Department of Physiotherapy, Nordland Hospital Trust, Bodø, Norway

Background and purpose: Physical activity (PA) is often reduced in people with MS (pwMS), even when disability is low. Understanding the perspectives of pwMS on interventions aiming to improve PA is important to inform the development of such services. The aim of this study was to explore the experiences of pwMS participating in an outdoor, high-intensity and balance exercise group intervention.

Methods: This qualitative study was nested within an RCT exploring a novel intervention integrating sensorimotor exercises with high-intensity intervals of running/walking. Individual, in-depth interviews with the intervention group (n = 15; 12 women, 3 men; age 38–66; EDSS score 0–3.5) were conducted postintervention (mean days = 14), analyzed using a phenomenological-inspired approach with systematic text condensation, and interpreted based on enactive theory.

Results: Four categories were generated: (1) Exploration of one's own physical abilities: Challenging one's own limits was perceived by all participants to improve movement performance and/or intensity level. Such bodily changes engendered strong positive feelings. Some negative consequences of high-intensity training were described, increasing a feeling of loss. (2) New insights and beliefs: Participants experienced enhanced beliefs in their own capabilities, which they integrated in activities outside the intervention. (3) An engaging environment: The group setting was perceived as supportive, and the outdoor environment was perceived as stimulating activity. (4) Professional leadership, tailoring and co-creation of enjoyment: Physiotherapist-led, individualized interactions were regarded as necessary to safely revisit prior activities, such as running. Co-creating enjoyment facilitated high-intensity training and intervention adherence.

Discussion: High-intensity training combined with detailed exercises in a physiotherapy outdoor group was perceived to create meaningful bodily changes and enhance PA and prospects for both PA and life. Importantly, however, some negative experiences were also reported from the high-intensity training. Enactive theory allowed for the illumination of new perspectives: the importance of embodiment for self-efficacy and of tailored physiotherapy and an outdoor-group environment for exploring one's own limits to physical capabilities. These aspects should inform future exercise interventions in pwMS with low disability.

1 Introduction

Multiple sclerosis (MS) is a progressive inflammatory disease of the central nervous system (CNS) that is typically diagnosed at 30–40 years of age (1). A great concern is the significantly lower levels of physical activity (PA) in people with MS (pwMS) across disability levels than in their healthy counterparts (2, 3).

Early promotion of PA and exercise is recommended due to numerous established benefits in health, symptom management and well-being for pwMS (4). In particular, high-intensity training is endorsed, as it has possible neuroprotective effects in the disease course (5, 6). In addition, exercises addressing sensorimotor impairments (e.g., reduced muscle strength, reduced neuromuscular control) are recommended, as they target individuals' capability to remain physically active (7). Sensorimotor impairments can influence trunk control, which is commonly disturbed in pwMS, even when disability is low (8, 9), and correlate with impaired balance, walking capacity and distance (10, 11). PwMS's knowledge of exercise benefits, attitudes and motivations, as well as contextual aspects such as lack of optimal exercise interventions, accessibility and support, affect the level of PA and exercise participation (12).

CoreDISTparticipation (Table 1) is a new comprehensive intervention addressing sensorimotor function, trunk control, high-intensity running/walking and work participation in pwMS with low disability (13). It is based on the GroupCoreDIST1 intervention, which has been shown to have significant short- and long-term effects on trunk control, balance and walking among pwMS (14, 15). However, no effects of the intervention on objectively measured PA have been identified, even though the participants reported perceptions of new possibilities to be physically active as their sensorimotor impairments improved (16). To address PA challenges in pwMS, GroupCoreDIST was further developed to include a four-week period of outdoor training, in which high-intensity walking/running and GroupCoreDIST exercises are integrated (Table 2). To our knowledge, combinations of high-intensity training and rehabilitation of specific sensorimotor functions have been sparsely explored. Patient perspectives are essential for the evaluation of healthcare interventions (17); however, the new outdoor component of CoreDISTparticipation has yet to be investigated from a first-person perspective. Particularly interesting is what participants perceive as meaningful regarding the intervention, as this is essential for motivation, motor learning and exercise adherence (18).

Table 1
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Table 1. Overview of the CoreDISTparticipation intervention.

Table 2
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Table 2. Description of the outdoor group.

To deepen our understanding of what the participants perceive as meaningful, we turn to a theoretical perspective that integrates bodily capacities with the construction of meaning. Enactive theory emphasizes that making sense of the world depends essentially on the biological (living) body and the phenomenological (lived or experienced) body (19), which implies that the body is viewed as a neurobiological organism that is concurrently experiencing, expressing and social (embodiment) (20). Thus, what is experienced by an individual during an exercise intervention is constituted by her sensorimotor repertoire for perception and action in interactions with the requirements of the task and the context (21). From this perspective, dysfunctions related to MS, such as sensorimotor impairments, can influence how individuals with MS interpret and understand their participation in a PA intervention. Moreover, the notion of “participatory sense-making” (22) extends the body into the social domain, enabling an understanding of how the interaction processes between two embodied individuals affect shared and individual meaning-making. These concepts may illuminate pwMS's experiences and direct the focus toward bodily, contextual, and interactional aspects that may generate new insights regarding sensorimotor exercise and high-intensity training as part of PA.

The aim of this study was to explore participants' experiences of the content, delivery and setting of a new outdoor group intervention combining high-intensity training and detailed exercises to generate new knowledge about important aspects of exercise interventions for pwMS with low disability.

2 Materials and methods

2.1 Design

Individual in-depth interviews using a phenomenological-inspired approach were chosen, as this is suitable for exploring the meaning and significance of pwMS's experiences and reflections (23, 24).

2.2 Ethical considerations

The study was conducted according to the Declaration of Helsinki and approved by the Regional Committee for Medical Research Ethics in North Norway (REK North: 174837). Written informed consent was obtained prior to the intervention and confirmed verbally when arranging the interviews. Participation was voluntary and anonymous, and the participants were informed about the opportunity to withdraw from the study. The Consolidated Criteria for Reporting Qualitative Research (COREQ) (25) were used to optimize the conduct and reporting of the study.

2.3 Study context

This interview study was nested within a randomized controlled trial (RCT) comparing the CoreDISTparticipation intervention to usual care (26) and conducted at a regional hospital MS-outpatient clinic (Nordland Hospital Trust) and in two affiliated municipalities in the northern Norway. The current study investigates participants in the intervention group's experiences of the four-week outdoor group, which was part of this new intervention (Table 2). The outdoor sessions were conducted by three trained physiotherapists working in the community healthcare in the two municipalities. The project team included three individuals representing users from the Nordland MS Association, along with an MS nurse and a neurologist from the MS-outpatient clinic, and three physiotherapists/ researchers.

2.4 Research team and reflexivity

All researchers on the team are clinical specialists in neurological physiotherapy. BN and ECA developed the CoreDISTparticipation intervention, and SSHD contributed to the development of the outdoor part.

The researchers' closeness to the intervention and the clinical field may have strengthened the depth and relevance of their interpretations in this study (27), as it was easy to understand what participants described and helped form follow-up questions during the interviews. However, closeness may also produce a risk of “blind spots”, as the researchers may prejudice participants' experiences, omitting questions where the answers are believed to be obvious (27). Thus, throughout the process, trustworthiness and rigor were enhanced by discussing the methodology, findings, and interpretations with external researchers (including specialists in enactive theory), as well as user representatives. The presented theoretical framework (enactive theory) enhanced the distance to the material, as recommended in qualitative research (28).

2.5 Recruitment and participants

Prior to recruitment, the study was introduced to individuals with multiple sclerosis (pwMS) through a seminar hosted by the Nordland MS Association. Additionally, seminars were conducted for health professionals in community healthcare and at the regional hospital. Written information about this study (and the RCT) was sent from the MS clinic at the regional hospital by post to all eligible individuals affiliated with the hospital. Individuals who wished to participate signed the attached consent form and returned it in the pre-stamped envelope. The inclusion criteria were as follows: had been diagnosed with MS, had a score on the Expanded Disability Status Scale (EDSS) (29) of ≤3.5, was ≥18 years, was employed (10%–100% of full-time) and residential address in the two predefined municipalities. The exclusion criteria were as follows: pregnancy, exacerbation of symptoms within two weeks prior to enrollment and other serious conditions compromising balance, walking or work capacity. All participants in the intervention group of the RCT (n = 15) were included (Table 3).

Table 3
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Table 3. Participant demographic information.

2.6 Data collection

The interview guide (Table 4) was developed based on literature reviews, clinical experience and discussions within the research group and with user representatives. Two test interviews were conducted (with pwMS who were not part of the sample), and the interview guide was then refined around the following themes: overall experience and reflections from participation, content, outdoor setting, the group, and the physiotherapists. Questions were open-ended to capture rich, in-depth reflections regarding participants' experiences, following a phenomenological approach. The interviewer asked for both negative and positive experiences and rephrased and asked follow-up questions to clarify and confirm the correct understanding of participants' answers.

Table 4
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Table 4. Interview guide.

As similar themes arose repeatedly and no new themes emerged in the final interviews, data saturation was achieved (23).

2.7 Analysis

The transcribed material was analyzed using systematic text condensation (STC) (30) and was organized utilizing NVivo (version 1.7.1). STC is a method for cross-case analysis inspired by phenomenology. It involves four-steps: (1) identification overall themes from the empirical material, (2) extraction of meaning units from the text which were then coded into groups, (3) condensation of all meaning units within the subgroups into an artificial quotation, that summarize and represents participants' voices, (4) recontextualization of the material into categories, presented as analytical texts. The process is iterative, resulting in continuous movement between the transcripts and within different steps of the analysis. An example of the STC process is illustrated in Figure 1.

Figure 1
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Figure 1. Example of the analysis process (excerpts).

Figure 2
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Figure 2. Model of participants’ experiences and interconnections. The figure displays the four categories generated (inner circle). The categories Exploration of one's own physical abilities and New insights & beliefs represent individual aspects, and Professional leadership, tailoring & co-creation of enjoyment and An engaging environment represent contextual aspects shaping participants experiences. Individual and contextual experiences from the intervention were perceived by participants as promoting (+) and hindering (−) their beliefs in own physical capability (outer circle).

The first author (SSHD) transcribed the interviews and read all material several times, while BN and ECA read most of the interviews before preliminary themes were agreed on. SSHD identified meaning units adhering to these themes and coded them into groups. Condensates of the subgroups were written by SSHD and discussed by all researchers. SSHD then recontextualized the material by forming categories described as analytical texts supplemented by quotes, a process that was discussed and revised several times by all authors. All authors contributed to writing the manuscript. Enactive theory was used to interpret the results, aiming at extracting new knowledge beyond what the informants had provided (28).

3 Results

Participants were interviewed one-on-one by the first author (SSHD) in November and December 2021 (mean = 14 days post-outdoor group). The time and place of the interviews were agreed upon according to participants' preferences (undisturbed office (n = 14), participant's home (n = 1)). None dropped out. The interviews lasted between 40 and 70 min (mean = 54, total = 822) and were audio-recorded.

The results are presented as four categories summarized in Figure 2 and described below as analytic texts and illustrative quotes referenced with the participant ID and EDSS score.

3.1 Exploration of one's own physical abilities

Overall, the participants reported strong positive experiences of being supported and pushed to explore the limits of their physical abilities. All participants reported benefits from these explorations, such as improved performance in the exercises, higher training intensity or functional gains such as improved balance or the ability to run again. The organization of the intervals of the exercises supported participants' ability to increase their training intensity. Participants felt that the detailed exercises in between intervals made them more ready or warmed up for the next running/walking interval. The opportunity to choose the terrain (hilly or flat) and walking/running route were appreciated, and technique corrections by the physiotherapist were reported to facilitate physical performance. The majority of participants highlighted that they reached higher intensity than expected during these sessions, and for many, the outdoor intervals mediated participants' strong emotional experiences. One person described this as follows:

The feeling of using my body! That my legs are working and I can run! It is a positive feeling—enhancing the feeling of being alive! I also enjoyed feeling tired after training—as it gave my negative thoughts a break. (ID10, EDSS: 1)

However, two individuals reported a soft-tissue injury during running (ankle sprain, hamstring strain), one experienced increase in dizziness, and three described negative feelings associated with their failure to achieve high intensity:

It was somewhat distressing during the last interval, as my feet were not working, and I did not know what to do to increase my heart rate—when I could not run or walk quickly anymore. (ID2, EDSS: 2)

The focus on the core or the middle of the body in the detailed exercises was stated to improve participants' PA performance; participants described being less clumsy or unsteady or walking without holding on to the walls. Having practiced the detailed CoreDIST exercises in the indoor group beforehand was described as a helpful and pertinent preparation by some participants, as it was regarded as more difficult to accurately execute the exercise techniques outdoors due to their higher intensity, the uneven surface, or bad weather. Some participants commented that the standing exercises (in-between the running/walking intervals) required too much effort, leaving their legs tired for running afterward.

3.2 New insights and beliefs

A key feature of the participants' stories was their new insights into their own physical abilities, which were perceived to influence their beliefs about their own possibilities for PA and life in general:

What meant the most for me was the high-pulse training, as I had thoughts of it being a left behind phase for me. The experience of being able to master it felt so good. It enhances my focus on future possibilities rather than limitations. (ID4, EDSS: 0)

Gains in insight were also reported from the detailed exercise part of the sessions, highlighting how the function of body parts through movements and sensations was linked to performance in PA, as illustrated below:

I have simply been taught some tools to improve certain parts of my body and how that has an effect on, for example, walking: That my hip has to be with me to maintain balance—and that makes how I stand on the ground important. Previously I was not aware of that…., now everything works better. (ID6, EDSS: 2)

Two participants reported that the intervention motivated them to commit to new exercise routines, and some stated that they had more “readiness” for activities such as playing with their grandchildren, hiking with friends, or engaging in a high-intensity activity. Some stated that their bodily changes were perhaps not noticeable for others, but they themselves noticed that it was easier to climb stairs, balance on one leg and walk fast or that they now moved in a “better way” or with less pain. Three participants perceived the duration of the outdoor group to be too short to feel lasting improvements in their physical endurance or muscular strength.

3.3 An engaging environment

Most participants reported that their performances were positively influenced and motivated by the group setting, for example, through cooperating in exercises with balls, seeing other individuals in the group who were “doing well”, cheering each other and competing when running and walking next to each other. However, one participant emphasized that observing people with visible disabilities from MS was distressing, as it revealed negative thoughts about one's own future. It was emphasized that mastering challenges in the group sessions added more meaning than doing the same alone:

I think this particular exercise is hard work, and then it becomes very tiring to do it on my own. However, when I did it in the group and we could laugh a bit in between and so on, it was easier because of the social element. (ID12, EDSS: 1.5)

Being active outdoors was preferred by many participants because of the fresh air and the natural and varied environment:

It was an added positive experience to use our city park and notice all the other people who were there…it is something about challenging our comfort-zone. (ID4, EDSS: 0)

The natural environment was also described as taking focus away from MS symptoms. Cold, rainy or snowy weather conditions required planning of adequate clothing; in addition, these conditions led some participants to use cautious behavior when the ground was slippery and led a few to omit sessions. However, mastering outdoor exercise was highlighted in positive terms, such as discovering new ways to become active.

3.4 Professional leadership, tailoring and co-creation of enjoyment

The way the physiotherapists led the group and, in particular, interacted with each participant were regarded as helpful for improving their bodily functions and activity levels. Some participants reported being afraid to try out new activities or training at high intensities after being diagnosed with MS but felt safe to explore when supervised by the physiotherapist because of their trust in the relationship between them and in the physiotherapist's professional knowledge.

How the physiotherapist approached the participants individually was described as important from this perspective. In particular, bodily interactions in which the physiotherapist demonstrated with his or her own body or placed his or her hands on the participant's body to correct a movement were reported to be successful, as it helped to increase speed and gave participants a sense of performing better or for a longer duration. If they did an exercise in a suboptimal way, participants reported receiving precise supervision, or if they expressed pain or were injured, the physiotherapist was supportive, assessed them and gave them advice for follow-up. Some participants said that when the physiotherapist conducted the exercises or ran/walked together with them, it made them increase their exercise intensity. One participant described this as follows:

The physiotherapists pushed me to perform beyond what I thought I was able to—and that was great! There is no doubt that if someone is running beside you and shouting “come on- well done”, you manage to push yourself further. (ID8, EDSS: 2)

However, one participant described an incident where the interaction with the physiotherapists was not perceived as helpful:

When I get tired, it gets difficult. I can only do one thing at a time, and then these physiotherapists came running, talking and trying to motivate at the same time. I got very tired, and my leg would not follow my commands to run. (ID7, EDSS: 3.5)

Participants reported that they appreciated that the physiotherapists made them engage in playful activities with a ball, run for beanbags, and sing and in general created an informal and nice atmosphere. The enjoyment created was described as important for adherence to the intervention and as encouraging participants' physical effort during the session, as exercise felt easier when it was enjoyable. It was appreciated that the physiotherapists were perceived as both cheerful and serious about the intervention.

4 Discussion

The main findings of this study are that (1) being supported to explore and push one's own physical capabilities by combining high-intensity running/walking with detailed exercises was meaningful and evoked strong emotions. Improving one's balance, walking, and running lead to increased beliefs in one's own possibilities. Some negative experiences were also described, particularly from the high-intensity training. (2) An engaging outdoor group with tailored physiotherapist-participant interactions and the co-creation of enjoyment was perceived to be important for the success of the individual. These findings illustrate how the dynamic intertwining of the body and movement, context and intersubjective interactions create meaning and beliefs in one's own physical capabilities (19).

4.1 Bodily experiences are inherent to beliefs in the mastery of physical activity

The meaningfulness of exploring the limits of training intensity that we identified in our study corresponds with other studies of pwMS's experiences of interventions addressing intensity of activity (31, 32). The exercises emphasizing trunk control were reported to reduce movement impairments and are in line with a study of pwMS with higher disabilities participating in an indoor group intervention (16). However, the perceived interlinking of improved sensorimotor functions and the ease of and efficiency in high-intensity walking/running have not been reported previously. It is likely that the detailed exercises prompted activations of the CNS and musculoskeletal systems, which are prerequisites for high-intensity walking and running (33). Impairments in such systems commonly occur due to CNS lesions or secondary inactivity, and function can improve with increased use (18). Our results support the value of integrating such specificity to optimize the capability to train at high intensity, even in individuals with low EDSS scores.

The described emotional associations of these bodily changes are interesting. Achieving higher exercise intensities, easier movements, reduced pain and improved sensation lead to positive feelings and enhanced prospects for both PA and life, while for some individuals, a failure to achieve high-intensity or no immediate changes in impairments are associated with feelings of loss and negative prospects. This calls attention to acknowledging that sensorimotor capacities facilitate or constrain how an individual perceives the world, which is closely interlinked with feelings, and that influence why participants perceive what they do (34). These experiences necessitate that sensorimotor changes in pwMS involve not only their biological body but also their relational and self-individuating modes of operating in the world, including how an experience coheres with, for example, participants' historical experiences (35). As we primarily regulate such modes to achieve an optimal positive mood state, this can also explain why only changes perceived as positive appear to enhance participants' beliefs for the future (36). Negative experiences such as failure to achieve high intensity because the legs are not working in the last interval can thus be perceived as detrimental by pwMS.

We argue that participants' perceived bodily changes affected their self-efficacy for being physically active. Self-efficacy involves an individual's perception of exerting control over his or her own actions (37) and has been extensively reported to be pertinent to PA engagement in pwMS (38, 39). However, self-efficacy is theoretically described according to social cognitive theory (38). Our findings highlight how experiencing, expressing and socially interacting through the body (embodied experiences) shape individuals' self-efficacy and suggest a crucial role of bodily perceptions in constituting self-efficacy for PA.

4.2 Interactions and environment shape meaning making

Participants perceived the group setting to increase motivation, support, and commitment, which has been found in previously published work (16, 31).

The physiotherapist-participant interaction is acknowledged in exercise interventions for pwMS, pointing to professionals' role in informing participants of exercise benefits in the management of MS, including the prescribing mode, frequency, intensity, and duration of exercise (40). Tailored interventions are supported given the heterogenic pathology and symptoms of MS (41, 42). However, our findings illuminate qualitative aspects of how to achieve tailored and meaningful intersubjective interactions in an exercise intervention.

We consider the instances of the physiotherapist running together with the participant, which were perceived as important for participants' performance, to be an example of “participatory sense-making” (22). As participants appreciated being guided or even pushed by the physiotherapists, it appears that the physiotherapists were trusted in directing this interaction. As such, we argue that the physiotherapists' ability to adapt to participants' movements, speech and gestures—tailoring the interaction to their needs—was important for this ability to be perceived as purposeful. This is supported by the few negative incidents described where the participant-physiotherapist interaction seemed to not be jointly coordinated and appeared to fail. The reported mutual influences of sensorimotor capabilities and interpersonal coordination, with the physiotherapists but also the group, are in accordance with sensorimotor capacities and intersubjective interactions being important for sense-making in the world (35). The benefits of these individualized participant-physiotherapist interactions are also described in specific core-stability exercises in indoor groups (16, 43) and are in line with the theoretical framework of facilitation of movement through hands-on interaction previously proposed (44, 45). Our study informs new knowledge of physiotherapist-participant interactions to achieve the recommended high-intensity training and calls for physiotherapy clinical reasoning through bodily and verbal communication skills adapted to the participants' responses in an ongoing and situated way.

Enjoyment has previously been reported to promote PA in pwMS, and our study brings requested knowledge of what can constitute enjoyment in an exercise intervention (46): playful group-exercise tasks, a cheerful physiotherapist, and the outdoor environment.

The appreciation of being active outdoors in the study sample aligns with that in the general population (47). The outdoors provided a natural environment, which both invited participants to actively explore abilities thought of as left behind after their diagnosis with MS, such as running, and provided an appreciated break from focusing on MS symptoms. We also suggest that the positive experiences of mastering the challenging weather conditions and the added meaning of exercising among other people in the city park can be explained according to such terms. These positive experiences show how we are enmeshed in our history, context and social encounters (35) and how these aspects should also be accounted for when designing exercise interventions.

4.3 Methodological considerations

The design and methods were adequate for deriving knowledge from individuals' experiences. The participants self-referred to the intervention and were recruited based on pre-set criteria. This approach yielded rich information from people with mild to moderate disabilities due to MS who were motivated for physical activity (PA), employed, and residing in northern Norway. Ethnicity or socio-economic class were not recorded. However, considering that all these factors can influence PA engagement (46), it is possible that additional aspects of the phenomenon could be uncovered in a different sample (48). There was a higher percentage of women participating than men; however, this corresponds to the gender distribution in the MS population (1).

The use of enactive theory was innovative within the field and allowed for, in particular, new aspects of importance for self-efficacy to be identified. Transference of our results to similar populations can be achieved through theoretical generalization (28).

4.4 Implications for clinical practice

Combining high-intensity walking/running and detailed sensorimotor exercises was valued and provided meaningful embodied experiences, improving participants' ability to master PA and their beliefs of their own possibilities for being active in the future. However, the manner in which the content of an exercise intervention is delivered and the environment in which it is delivered should be accounted for, as these aspects were perceived to be of great importance in creating and shaping participants' experiences. In particular, tailored physiotherapist-participant bodily interactions and an engaging group and outdoor environment were perceived to be pertinent for exploring one's own potential.

To minimize negative incidents in future interventions, we suggest that (1) the effort required from one's leg muscles during the detailed exercises (in between the running/walking intervals) should be low to minimize the negative consequences of leg muscle fatigue prior to high-intensity running/walking, (2) the capacity for running/walking at high-intensity should be explored in one-to-one physiotherapy assessment prior to group training to optimize individuals capabilities and safety, and (3) homogenous and small-sized groups should be used to enable ongoing and tailored physiotherapist-participant interactions.

Data availability statement

The datasets presented in this article are not readily available because of ethical and legal restrictions. Requests to access the datasets should be directed to stine.s.dahl@nord.no.

Ethics statement

This study involving humans was approved by Regional Committee for Medical Research Ethics in North Norway (REK North: 174,837) and the Data Protection Officer at Nordlandssykehuset Hospital Trust, Norway. This study was conducted in accordance with the local legislation and institutional requirements. The participants provided their written informed consent to participate in this study.

Author contributions

SD: Conceptualization, Data curation, Formal Analysis, Investigation, Methodology, Project administration, Resources, Visualization, Writing – original draft, Writing – review & editing. EA: Conceptualization, Formal Analysis, Methodology, Supervision, Writing – review & editing. BN: Conceptualization, Formal Analysis, Funding acquisition, Methodology, Project administration, Resources, Supervision, Writing – review & editing.

Funding

The author(s) declare that financial support was received for the research, authorship, and/or publication of this article.

The development of the CoreDISTparticipation and the RCT is funded by the Northern Norway Health Authority (Helse Nord RHF). This interview study was funded by Nord University (PhD salary).

Acknowledgments

The authors would like to thank the participants in this study and the user representatives from Nordland MS Association for their valuable contributions. The authors also acknowledge philosopher of the mind and cognitive sciences Hanne De Jaegher for the valuable comments on the interpretations and discussions of the results.

Conflict of interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Publisher's note

All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.

Footnote

1GroupCoreDIST is a group-based intervention (Group), involving 35 exercises at different levels, addressing activation of trunk musculature (Core) in motor tasks in lying, sitting and standing (e.g. rolling, reaching, squatting, single leg stance. DIST describes essential elements of the concept: D = dose (high), dual task; I = individualization, insight, intensity; S = sensorimotor activation, selective movement control; T = task oriented training.

References

1. Walton C, King R, Rechtman L, Kaye W, Leray E, Marrie RA, et al. Rising prevalence of multiple sclerosis worldwide: insights from the Atlas of MS, third edition. Mult Scler. (2020) 26(14):1816–21. doi: 10.1177/1352458520970841

PubMed Abstract | Crossref Full Text | Google Scholar

2. Casey B, Coote S, Galvin R, Donnelly A. Objective physical activity levels in people with multiple sclerosis: meta-analysis. Scand J Med Sci Sports. (2018) 28(9):1960–9. doi: 10.1111/sms.13214

PubMed Abstract | Crossref Full Text | Google Scholar

3. Kinnett-Hopkins D, Adamson B, Rougeau K, Motl RW. People with MS are less physically active than healthy controls but as active as those with other chronic diseases: an updated meta-analysis. Mult Scler Relat Disord. (2017) 13:38–43. doi: 10.1016/j.msard.2017.01.016

PubMed Abstract | Crossref Full Text | Google Scholar

4. Hoang PD, Lord S, Gandevia S, Menant J. Exercise and sports science Australia (ESSA) position statement on exercise for people with mild to moderate multiple sclerosis. J Sci Med Sport. (2022) 25(2):146–54. doi: 10.1016/j.jsams.2021.08.015

PubMed Abstract | Crossref Full Text | Google Scholar

5. Dalgas U, Langeskov-Christensen M, Stenager E, Riemenschneider M, Hvid LG. Exercise as medicine in multiple sclerosis—time for a paradigm shift: preventive, symptomatic, and disease-modifying aspects and perspectives. Curr Neurol Neurosci Rep. (2019) 19(11):1–12. doi: 10.1007/s11910-019-1002-3

PubMed Abstract | Crossref Full Text | Google Scholar

6. Riemenschneider M, Hvid LG, Ringgaard S, Nygaard MKE, Eskildsen SF, Gaemelke T, et al. Investigating the potential disease-modifying and neuroprotective efficacy of exercise therapy early in the disease course of multiple sclerosis: the early multiple sclerosis exercise study (EMSES). Mult Scler. (2022) 28(10):1620–9. doi: 10.1177/13524585221079200

PubMed Abstract | Crossref Full Text | Google Scholar

7. Kalb R, Brown TR, Coote S, Costello K, Dalgas U, Garmon E, et al. Exercise and lifestyle physical activity recommendations for people with multiple sclerosis throughout the disease course. Mult Scler. (2020) 26(12):1459–69. doi: 10.1177/1352458520915629

PubMed Abstract | Crossref Full Text | Google Scholar

8. Moreno-Navarro P, Manca A, Martinez G, Ventura L, Barbado D, Vera-García FJ, et al. Test-retest reliability and known-groups validity of trunk muscle tests in people with multiple sclerosis: a cross-sectional, case-control study. Phys Ther. (2021) 101(5):1–9. doi: 10.1093/ptj/ptzab049

Crossref Full Text | Google Scholar

9. Raats J, Arntzen EC, Lamers I, Feys P, Normann B. What is the distribution of trunk impairments and its relationship with disability level in individuals with multiple sclerosis? Mul Scler Relat Disord. (2021) 57:103325. doi: 10.1016/j.msard.2021.103325

Crossref Full Text | Google Scholar

10. Normann B, Arntzen EC. What are the relationships between trunk control, balance and walking in individuals with multiple sclerosis with minor to moderate disability? Eur J Physiother. (2021) 23(6):377–83. doi: 10.1080/21679169.2020.1772870

Crossref Full Text | Google Scholar

11. Unluer NO, Ozkan T, Yasa ME, Ates Y, Anlar O. Investigation of the relationship between trunk motor control and balance, functional mobility, and gait capacity in patients with multiple sclerosis/multipl sklerozlu hastalarda govde motor kontrolu ile denge, fonksiyonel mobilite ve yuruyus kapasitesi arasindaki iliskinin incelenmesi. Türk Nöroloji Dergisi. (2021) 27(3):283. doi: 10.4274/tdn.2021.41017

Crossref Full Text | Google Scholar

12. Learmonth YC, Motl RW. Physical activity and exercise training in multiple sclerosis: a review and content analysis of qualitative research identifying perceived determinants and consequences. Disabil Rehabil. (2016) 38(13):1227–42. doi: 10.3109/09638288.2015.1077397

PubMed Abstract | Crossref Full Text | Google Scholar

13. Fikke HK, Normann B, Sivertsen M, Dahl SSH, Arntzen EC. Optimizing sensorimotor function, physical activity and employment for people with MS—a feasibility study. Fysioterapeuten. (2023) 90(1):32–42. doi: 10.52705/c14a8ca05f7546dabc18bd0275cf2edd

Crossref Full Text | Google Scholar

14. Arntzen EC, Straume B, Odeh F, Feys P, Normann B. Group-based, individualized, comprehensive core stability and balance intervention provides immediate and long-term improvements in walking in individuals with multiple sclerosis: a randomized controlled trial. Physiother Res Int. (2019) 25(1):e1798. doi: 10.1002/pri.1798

PubMed Abstract | Crossref Full Text | Google Scholar

15. Arntzen EC, Straume BK, Odeh F, Feys P, Zanaboni P, Normann B. Group-based individualized comprehensive core stability intervention improves balance in persons with multiple sclerosis: a randomized controlled trial. Phys Ther. (2019) 99(8):1027–38. doi: 10.1093/ptj/pzz017

PubMed Abstract | Crossref Full Text | Google Scholar

16. Arntzen EC, Øberg GK, Gallagher S, Normann B. Group-based, individualized exercises can provide perceived bodily changes and strengthen aspects of self in individuals with MS: a qualitative interview study. Physiother Theory Pract. (2019) 37(10):1080–95. doi: 10.1080/09593985.2019.1683923

PubMed Abstract | Crossref Full Text | Google Scholar

17. Florio-Smith J, Ayer M, Colhoun S, Daykin N, Hamill B, Liu X, et al. The importance of the patient’s perspective in decision-making in multiple sclerosis: results of the OwnMS patient perspectives study. Mult Scler Relat Disord. (2023) 75:104757. doi: 10.1016/j.msard.2023.104757

PubMed Abstract | Crossref Full Text | Google Scholar

18. Kleim JA, Jones TA. Principles of experience-dependent neural plasticity: implications for rehabilitation after brain damage. J Speech Lang Hear Res. (2008) 51(1):225–39. doi: 10.1044/1092-4388(2008/018)

Crossref Full Text | Google Scholar

19. Thompson E. Mind in Life: Biology, Phenomenology, and The Sciences of Mind. Cambridge, Mass: Harvard University Press (2007).

Google Scholar

20. Merleau-Ponty M. Phenomenology of Perception. London: Routledge Classics (2008).

Google Scholar

21. Buhrmann T, Di Paolo E. The sense of agency—a phenomenological consequence of enacting sensorimotor schemes. Phenomenol Cogn Sci. (2017) 16(2):207–36. doi: 10.1007/s11097-015-9446-7

Crossref Full Text | Google Scholar

22. De Jaegher H, Di Paolo E. Participatory sense-making: an enactive approach to social cognition. Phenomenol Cogni Sci. (2007) 6(4):485–507. doi: 10.1007/s1197-007-9076-9

Crossref Full Text | Google Scholar

23. DiCicco-Bloom B, Crabtree BF. The qualitative research interview. Med Educ. (2006) 40(4):314–21. doi: 10.1111/j.1365-2929.2006.02418.x

PubMed Abstract | Crossref Full Text | Google Scholar

24. Malterud K. The art and science of clinical knowledge: evidence beyond measures and numbers. Lancet. (2001) 358(9279):397–400. doi: 10.1016/s0140-6736(01)05548-9

PubMed Abstract | Crossref Full Text | Google Scholar

25. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. (2007) 19(6):349–57. doi: 10.1093/intqhc/mzm042

PubMed Abstract | Crossref Full Text | Google Scholar

26. Arntzen EC, Braaten T, Fikke HK, Normann B. Feasibility of a new intervention addressing group-based balance and high-intensity training, physical activity, and employment in individuals with multiple sclerosis: a pilot randomized controlled trial. Front Rehabil Sci. (2024) 4:1–17. doi: 10.3389/fresc.2023.1258737

Crossref Full Text | Google Scholar

27. Paulgaard G. Feltarbeid i egen kultur: innenfra, utenfra eller begge deler? / fieldwork in their own culture: from within, outside or both? In: Fossaskåret E, Fuglestad OL, Aase TH, editors. Metodisk Feltarbeid. Produksjon og Tolkning av Kvalitative Data/ Methodical Fieldwork. Production and Interpretation of Qualitative Data. Oslo: Universitetsforlaget (1997). p. 70–93.

Google Scholar

28. Malterud K. Theory and interpretation in qualitative studies from general practice: why and how? Scand J Public Health. (2016) 44(2):120–9. doi: 10.1177/1403494815621181

PubMed Abstract | Crossref Full Text | Google Scholar

29. Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Neurology. (1983) 33(11):1444–52. doi: 10.1212/wnl.33.11.1444

PubMed Abstract | Crossref Full Text | Google Scholar

30. Malterud K. Systematic text condensation: a strategy for qualitative analysis. Scand J Public Health. (2012) 40(8):795–805. doi: 10.1177/1403494812465030

PubMed Abstract | Crossref Full Text | Google Scholar

31. Russell N, Gallagher S, Msetfi RM, Hayes S, Motl RW, Coote S. Experiences of people with multiple sclerosis participating in a social cognitive behavior change physical activity intervention. Physiother Theory Pract. (2022) 39(5):1–9. doi: 10.1080/09593985.2022.2030828

Crossref Full Text | Google Scholar

32. Smith M, Neibling B, Williams G, Birks M, Barker R. Consumer experience of a flexible exercise participation program (FEPP) for individuals with multiple sclerosis: a mixed-methods study. Physiother Res Int. (2021) 26(4):e1922. doi: 10.1002/pri1922

PubMed Abstract | Crossref Full Text | Google Scholar

33. Shumway-Cook A, Woollacott MH, Rachwani J, Santamaria V. Motor Control: Translating Research into Clinical Practice. 6th ed. Philadelphia: Wolters Kluwer Health (2023).

Google Scholar

34. Gallagher S, Bower M. Making enactivism even more embodied. AVANT: J Philos Interdiscip Vanguard. (2014) 5(2):232–47. doi: 10.26913/50202014.0109.0011

Crossref Full Text | Google Scholar

35. Di Paolo E, Cuffari E, Jaegher H. Linguistic Bodies: The Continuity between Life and Language. Cambridge: MIT press (2018).

Google Scholar

36. Colombetti G. The embodied and situated nature of moods. Philosophia (Ramat Gan). (2017) 45(4):1437–51. doi: 10.1007/s11406-017-9817-0

PubMed Abstract | Crossref Full Text | Google Scholar

37. Bandura A. Health promotion by social cognitive means. Health Educ Behav. (2004) 31(2):143–64. doi: 10.1177/1090198104263660

PubMed Abstract | Crossref Full Text | Google Scholar

38. Casey B, Coote S, Hayes S, Gallagher S. Changing physical activity behavior in people with multiple sclerosis: a systematic review and meta-analysis. Arch Phys Med Rehabil. (2018) 99(10):2059–75. doi: 10.1016/j.apmr.2017.12.013

PubMed Abstract | Crossref Full Text | Google Scholar

39. Silveira SL, Cederberg KLJ, Jeng B, Sikes EM, Sandroff BM, Jones CD, et al. Do physical activity and social cognitive theory variable scores differ across symptom cluser severity groups in multiple sclerosis? Disabil Health J. (2021) 14(4):101163. doi: 10.1016/j.dhjo.2021.101163

PubMed Abstract | Crossref Full Text | Google Scholar

40. Learmonth YC, Motl RW. Exercise training for multiple sclerosis: a narrative review of history, benefits, safety, guidelines, and promotion. Int J Environ Res Public Health. (2021) 18(24):13245. doi: 10.3390/ijerph182413245

PubMed Abstract | Crossref Full Text | Google Scholar

41. Baird JF, Motl RW. Response heterogeneity with exercise training and physical activity interventions among persons with multiple sclerosis. Neurorehabil Neural Repair. (2019) 33(1):3–14. doi: 10.1177/1545968318818904

PubMed Abstract | Crossref Full Text | Google Scholar

42. Sandroff BM, Baird JF, Silveira SL, Motl RW. Response heterogeneity in fitness, mobility and cognition with exercise-training in MS. Acta Neurol Scand. (2019) 139(2):183–91. doi: 10.1111/ane.13041

PubMed Abstract | Crossref Full Text | Google Scholar

43. Lahelle AF, Øberg GK, Normann B. Group dynamics in a group-based, individualized physiotherapy intervention for people with multiple sclerosis: a qualitative study. Physiother Res Int. (2019) 25(3):e1829. doi: 10.1002/pri.1829

PubMed Abstract | Crossref Full Text | Google Scholar

44. Normann B. Facilitation of movement: new perspectives provide expanded insights to guide clinical practice. Physiother Theory Pract. (2020) 36(7):769–78. doi: 10.1080/09593985.2018.1493165

PubMed Abstract | Crossref Full Text | Google Scholar

45. Øberg GK, Normann B, Gallagher S. Embodied-enactive clinical reasoning in physical therapy. Physiother Theory Pract. (2015) 31(4):244–52. doi: 10.3109/09593985.2014.1002873

Crossref Full Text | Google Scholar

46. Anens E, Zetterberg L, Urell C, Emtner M, Hellström K. Self-reported physical activity correlates in Swedish adults with multiple sclerosis: a cross-sectional study. BMC Neurol. (2017) 17(1):204. doi: 10.1186/s12883-017-0981-4

PubMed Abstract | Crossref Full Text | Google Scholar

47. Herring TE, Knowles LM, Alschuler KN. Outdoor adventure programs for persons with multiple sclerosis: a review and agenda for future research. Int J MS Care. (2021) 23(4):186–92. doi: 10.7224/1537-2073.2020-066

PubMed Abstract | Crossref Full Text | Google Scholar

48. Creswell JW, Poth CN. Qualitative Inquiry & Research Design: Choosing Among Five Approaches. 4th ed. California: Sage (2018).

Google Scholar

Keywords: physical activity, physiotherapy, multiple sclerosis, qualitative study, exercise therapy, postural balance, enactive theory

Citation: Dahl SSH, Arntzen EC and Normann B (2024) The meaningfulness of exploring one's own limits through interactions and enjoyment in outdoor high-intensity physiotherapy for people with multiple sclerosis: a qualitative study. Front. Rehabil. Sci. 5:1303094. doi: 10.3389/fresc.2024.1303094

Received: 27 September 2023; Accepted: 6 March 2024;
Published: 18 March 2024.

Edited by:

Jacqui H Morris, University of Dundee, United Kingdom

Reviewed by:

Nicola Saywell, Auckland University of Technology, New Zealand
Verna Stavric, Auckland University of Technology, New Zealand

© 2024 Dahl, Arntzen and Normann. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Stine Susanne Haakonsen Dahl stine.s.dahl@nord.no

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.