Perceived barriers and facilitators for gait-related participation in people after stroke: From a patients’ perspective

ABSTRACT

Background: An important focus of post-stroke physical therapy is to improve walking and walking capacity. However, many people after stroke experience difficulties with gait-related participation, which includes more than walking capacity alone. Gait-related participation involves walking with a participation goal and requires to deal with changes in the environment during walking and perform dual tasks, for example.

Objective: To explore barriers and facilitators for gait-related participation from the perspective of people after stroke. This knowledge can contribute to the development of effective interventions to improve gait-related participation.

Methods: Semi-structured interviews were conducted to investigate how people after stroke experience gait-related participation. Audio-recorded interviews were transcribed, anonymized, and analyzed thematically. Barriers and facilitators were categorized according to the International Classification of Functioning, Disability and Health (ICF) framework.

Results: Twenty-one people after stroke participated. Median age was 65 years, median time since stroke 16 weeks. Barriers were reported in movement-related functions, cognitive functions, mobility, personal factors, and environmental factors. Facilitators were found on participation level and in personal and environmental factors, such as motivation and family support.

Conclusion: People after stroke who were physically able to walk independently still described multiple barriers to gait-related participation in all components of the ICF framework.

KEYWORDS:

• Stroke
• patient perspective
• participation
• gait
• ICF
• physical therapy

Introduction

In Europe approximately 1.1 million people suffer a stroke each year and the prevalence is expected to increase in the upcoming years because the population is aging (Béjot, Bailly, Durier, and Giroud, 2016; Feigin, Norrving, and Mensah, 2017). After a stroke, many people experience decreased walking ability (Jørgensen, Nakayama, Raaschou, and Olsen, 1995; Lord et al., 2004).

Walking is necessary in order to perform many daily activities within the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) activity and participation domains: mobility, self-care, domestic life, major life areas, and community, social and civic life (Mayo et al., 2002; World Health Organization, 2001). We defined walking with a goal on these ICF domains as gait-related participation. Gait-related participation includes walking to go shopping and walking to perform household chores, work, and leisure activities. It can involve indoor and outdoor walking, in private and public environments.

Gait-related participation comprises not only the walking activity in itself but requires people to consider the context and environmental changes during walking; like terrain irregularity, changes in level, obstacle avoidance, and crowds (Mayo et al., 2002). In addition, gait-related participation requires people to perform dual tasks while walking, for example paying attention to traffic when crossing a busy road with sufficient speed (Plummer-D’Amato et al., 2008). In order to be able to deal with these specific contexts or changes in the environment, both motor and cognitive function are essential. Motor function during walking comprises leg strength, balance, and coordination (van de Port, Kwakkel, and Lindeman, 2008; Wesselhoff, Hanke, and Evans, 2018). Cognitive function during walking comprises the allocation of attention and executive functioning (Montero-Odasso and Speechley, 2018; Yogev-Seligmann, Hausdorff, and Giladi, 2008). People after stroke often have difficulty adapting their walking to environmental constraints because of their motor and cognitive impairments, however subtle they may be (Balasubramanian, Clark, and Fox, 2014). Impaired physical walking capacity (e.g. walking speed and distance), impaired cognition, and multiple personal and environmental factors can negatively affect gait-related participation (Bijleveld-Uitman, van de Port, and Kwakkel, 2013; Blennerhassett et al., 2018; Durcan, Flavin, and Horgan, 2016; Plummer et al., 2013; Robinson, Matsuda, Ciol, and Shumway-Cook, 2013). Because of these impairments, many stroke survivors cannot retain their previous level of gait-related participation, which restricts them in real-life, everyday situations (Engel-Yeger et al., 2018).

Proper understanding of barriers and facilitators for gait-related participation is important in order to improve guidance during therapy and to further develop effective physical therapy interventions. Recently, barriers and facilitators have been studied for outdoor walking in people with chronic stroke (Outermans et al., 2016). This study focused on a person’s outdoor walking activity with the goal to become physically active. The current study focused on gait-related participation which includes a broader range than only outdoor walking, namely all walking with a goal on ICF participation level.

What makes this study unique is the use of a qualitative design considering all components of the ICF framework to give a comprehensive overview of factors influencing gait-related participation (Robinson, Matsuda, Ciol, and Shumway-Cook, 2013). Qualitative studies can give a detailed overview of the patients’ perspective and are increasingly accepted in rehabilitation research (Glässel, Coenen, Kollerits, and Cieza, 2012; VanderKaay et al., 2018). The importance of exploring patients’ perspectives is also seen in the rising interest in patient-reported outcome measures in research and clinical care (Reeves et al., 2018). Therefore, the present study uses a qualitative design and aims to explore barriers and facilitators for gait-related participation from the perspective of people after stroke. We include factors from all components of the ICF framework that may affect gait-related participation, covering ICF body function or structure level, activity level, participation level, personal factors, and environmental factors.

Methods

Design

We used semi-structured interviews to investigate how people experience gait-related participation after their stroke. The COnsolidated criteria for REporting Qualitative research guidelines were followed for reporting this study.

Participants

Participants in the semi-structured interviews were recruited from the Virtual Reality Training After Stroke (ViRTAS) study. This study was a randomized controlled trial designed to examine how virtual reality gait training affects participation in community living people between 2 weeks and 6 months after stroke (de Rooij, van de Port, Visser-Meily, and Meijer, 2019). Participants in the ViRTAS study experienced constraints with walking in daily life and were minimally able to walk without physical assistance for balance and coordination (Functional Ambulation Category ≥ 3). They received virtual gait training or non-virtual gait training for 6 weeks.

From January 2018 to January 2019, participants were informed about the semi-structured interviews by the principal investigator during the post-intervention assessment of the ViRTAS study. A description of the content of the semi-structured interviews was included in the subject information and informed consent of the overall study. If participants were willing to participate in the semi-structured interviews, an appointment was made with the interviewer.

Demographic and injury-related information about the participants was taken from the data collected in the randomized controlled trial. The study has been approved by the Medical Ethics Review Committee of Slotervaart Hospital and Reade, Amsterdam, The Netherlands (P1668, NL59737.048.16) and is registered in the Netherlands National Trial Register (NTR6215).

Data collection

Participants were interviewed in a face-to-face session at their homes or at the rehabilitation center in Breda, the Netherlands. The interviews were performed by two female researchers with experience in patient care (VB, LH) of which one is a physiotherapist and the other a human movement scientist. The interviewers were not known to the interviewee before the start of this study. The interviewer started the session with a brief introduction about her role and the aim of the study. Family members were allowed to stay in the same room as the interviewee. However, the interviewer requested that the family members only participated in the interview when they had the feeling that important information could be missed. The interviews lasted 14–50 minutes and were audio-recorded with the permission of the participants to increase the reliability of the data. In addition, field notes were taken if necessary. An interview guide with directional questions was used to guide the interviewer (Table 1). Gait-related participation included both walking in the community and walking in or around the participant’s home. The questions were checked beforehand in a test-interview with a person after stroke who received outpatient rehabilitation. We did not perform repeat interviews with any of the participants.

Table 1. Interview guide with directional questions for the semi-structured interviews

Interview guide

How do you experience your walking in daily life? How satisfied are you with your gait-related activities? Which gait-related activities are difficult for you to perform? Why are these gait-related activities difficult for you to perform? What hinders you or holds you back from walking or performing gait-related activities? What makes it easier or stimulates you to walk or to perform gait-related activities?

Data analysis

Data analysis and data collection were performed in parallel to ensure that new insights or missing themes that emerged from the analysis could be incorporated in the subsequent interviews. Data collection ended when saturation was achieved. In this study, saturation was defined as the point at which no new themes or insights emerged from the last two interviews (Moser and Korstjens, 2018). Two researchers (IR, LH) analyzed the transcriptions of the interviews by performing a thematic analysis using the Framework Method (Braun and Clarke, 2006; Gale et al., 2013).

The Framework Method consists of seven stages. In the first stage, the audio-recorded interviews were transcribed verbatim. Transcriptions were anonymized and then checked for errors by another research member. In the second stage, the researchers thoroughly read the transcriptions to become familiar with the interviews. If a passage in the transcription was unclear, the audio recordings were listened back to get a better understanding of that passage. The transcriptions were not returned to the participants for comments. In the third stage, the researchers started open coding of the barriers and facilitators using NVivo 12 (QRS International). The researchers analyzed the first four interviews independently by selecting interesting parts of text and describing the content of each text part with a code. In the fourth stage, the researchers compared and discussed the codes that they had applied in the first four interviews to align their way of coding and to define a description for each code. Codes that were related were grouped and subdivided. Thereafter, the researchers decided which sets of codes were applied in analysis of the subsequent interviews. In the fifth stage, the subsequent interviews were labeled by applying the existing codes and still considering new codes. Also in this stage, the researchers compared their coding of interview parts and discussed discrepancies. If no consensus was reached, a third researcher (IP) made the final decision. In the sixth stage, the codes were summarized using a framework matrix. This matrix comprised one row per interview and one row per code. In the seventh stage, the researchers started with the interpretation of the data of the interviews by categorizing the codes according to the components of the ICF framework and searching for overarching themes. The categories and overarching themes were discussed with all authors. Also, two participants were asked to discuss the interpretation of the interviews with the researchers in this last stage.

Results

All potential participants that were invited for an interview agreed to participate. We excluded one participant because he refused to allow the interview to be recorded. Twenty-one participants (14 males and 7 females) were included. Table 2 shows the demographic and clinical characteristics of the participants. The median age was 65 (IQR 56, 71) years and median time since stroke was 16 (IQR 14, 22) weeks at the time of the interview.

Table 2. Demographic and clinical characteristics of the participants (n = 21)

Characteristics	Values
Age (years)	65 (56–71)
Gender (male/female)	14/7
Time since stroke onset (weeks)	16 (14–22)
Type of stroke (infarction/hemorrhage)	20/1
Side of stroke
Left	6
Middle	3
Right	12
Previous stroke (yes/no)	4/17
Assistive devices for use outdoors
None	12
Rollator	5
Cane and rollator	3
Mobility scooter	1
Ankle-foot orthosis (yes/no)	3/18
Functional Ambulation Category score
3	0
4	6
5	15
Partner (yes/no)	18/3
Region of residence
Rural or small town (< 10.000 inhabitants)	7
Small urban (10.000–99.999 inhabitants)	11
Large urban (≥ 100.000 inhabitants)	3

Note: values are N or median (IQR).

All barriers and facilitators that emerged during the semi-structured interviews were categorized according to the five components of ICF framework: body function or structure level, activity level, participation level, personal factors, and environmental factors. We describe the barriers and facilitators for gait-related participation that were mentioned by the participants per component of the ICF framework.

Barriers and facilitators identified on ICF body function or structure level

The barriers that emerged on the function level of the ICF framework can be divided in three ICF domains: 1) neuromusculoskeletal and movement-related functions; 2) sensory functions and pain; and 3) mental functions. No facilitators were mentioned on ICF function level.

Barriers in the domain neuromusculoskeletal and movement-related functions were motor impairment, decreased muscle strength, decreased endurance, decreased coordination, fatigue, and stiffness. Multiple participants named motor impairment and decreased muscle strength because of difficulties with the paretic leg. A 74-year-old male participant said:

“Lifting my left leg (affected leg) high enough is the biggest limitation during walking.”

Difficulties with controlling a paretic leg became more apparent during a longer walk in which fatigue was more present toward the end of the walk. Fatigue was present throughout the day for many participants and consisted of both physical and mental fatigue.

Barriers in the domain sensory functions and pain included impaired visual function, dizziness, tingling or unusual sensations, and pain. Pain and unusual sensations were mainly experienced in the legs and feet. Impaired visual function after stroke limits participants to perform gait-related activities.

Barriers in the domain mental functions were motor dual tasks, allocation of attention, diminished stimulus processing, and delayed information processing. Multiple participants recognized that the impairment of their cognitive functioning was a barrier for their gait-related participation. This could be related to a decreased ability to allocate attention or to perform motor dual tasks, a higher sensitivity to stimuli such as crowds and busy traffic, or a delayed information processing. A 56-year-old female participant described delayed information processing as follows:

“When I stand on a curb to cross the road, sometimes a car will suddenly turn around the corner. Then I have to go back. In my head I already started taking that step forward, which makes it quite difficult to go back. Before my stroke I did not think about this at all, but now I have to give my brains an extra moment to think hey guys I have to go back.”

Difficulties with the allocation of attention are explained by a 26-year-old female participant:

“Nowadays, I do my groceries without my son (toddler) because doing the groceries and having him around does not go well together. The cognitive changes after my stroke are still there.”

Barriers and facilitators identified on ICF activity level

The barriers and facilitators that emerged on the activity level of the ICF framework covered the mobility domain. Barriers included decreased balance, decreased walking speed, and decreased walking distance. Many participants could not walk fast and/or far enough to perform activities that they were used to doing before their stroke, for example visiting friends or family. A 65-year-old female participant said:

“I cannot go to my friend who lives in another village. At this moment, her house is too far away to reach on foot or by bike. Also, the nearest bus stop is too far to walk.”

Decreased balance was explained by a 66-year-old male participant:

“In the supermarket it is difficult to bend my knees and pick up a product at the bottom of a shelf. I will easily lose my balance.”

Barriers and facilitators identified on ICF participation level

The barriers and facilitators that emerged on the participation level of the ICF framework can be divided in the domains: 1) domestic life; 2) mobility; 3) major life areas; and 4) community, social, and civic life. The only barrier that was mentioned on ICF participation level was outpatient rehabilitation. Because some participants followed outpatient rehabilitation for two or three days per week they felt they had not enough time to perform the gait-related activities that they would like to do in their home environment.

Regarding domestic life, participants mentioned as a facilitator that they feel responsible for the household. This responsibility stimulates them to perform household tasks, to go shopping, and to gather daily necessities. Also, taking care of a dog is an often mentioned facilitator to go for a walk.

Facilitators in the domains mobility and major life areas were the use of public transportation and having work that requires many activities that involve walking.

Regarding community, social and civic life, participants mentioned visiting friends or family, hobbies, social activities, and social contacts as facilitator to perform gait-related activities. Many participants like to walk to their friends or family or to social and leisure activities as playing petanque or watching a soccer match of a grandchild. Several participants explained that they liked to go for a walk for their social contacts. A 65-year-old female participant said:

“I like to go for a walk because of the social aspect. You usually, not always, but frequently come across the same people so you just have a chat with them.”

Barriers and facilitators identified for the personal factors component of the ICF

Because no classification in ICF domains consists for the personal factors component, we did not further categorize the barriers and facilitators for this component. Personal barriers that emerged from the interviews were: feelings of being watched, anxiety and insecurity, stress, decreased initiative or lack of a purpose to go for a walk, dislike walking, co-morbidities, and overestimation of own limits. Some participants felt anxious or insecure when walking in the community or taking the stairs which makes them walk more cautious and conscious. A 74-year-old male participant explained:

“I’m a little bit insecure when taking the stairs. If I don’t lift my leg high enough, I hit the steps. So, I’m more conscious about how I place my foot.”

Other participants mentioned that after their stroke they had a decreased initiative to undertake activities or missed a purpose to go for a walk. Also, sometimes participants overestimated their own limits. This was described by a 65-year-old female participant:

“My grandchildren came and we went for a walk together. I have no idea why, but I suddenly felt exhausted. My grandchild asked: grandma should I hold your hand? And I said: Yes do that, your grandmother is suddenly very tired. Maybe I did too much this morning. I did not rest enough. And then misjudged how tired I was.”

Personal facilitators that emerged from the interviews were an active personality, motivation, fulfillment, loving nature, fresh air or tranquility, and good planning skills. Multiple participants mentioned their motivation to walk and to regain gait-related activities. They explained they performed gait-related activities with the goal to train their walking ability. A 63-year-old male participant described:

“I try to walk the route around the pond every day. I don’t like walking, but I do this to be active and to improve my condition and balance. I see it like a kind of therapy.”

Also, being a nature lover stimulated people to go for a walk outside. A 56-year-old female participant explained:

“I live near the woods, that is at the end of the street. I like being outdoors and love to go for a walk in the woods. I enjoy the nature, the birds, and the squirrels.”

Having good planning skills helps participants to make the most out of their day or week. A 26-year-old female participant described:

“It all continues after my stroke. However, the difference is that I have found more balance and peace in it. This positively affects my leg and my walking. I notice that when I rest between activities, I get through the day much better.”

Barriers and facilitators identified for the environmental factors component of the ICF

The environmental barriers and facilitators that emerged from the interviews can be divided in the domains: 1) support and relationships; 2) products and technology;and 3) natural environment and human-made changes to environment. Barriers in the domain support and relationships included worries from family members and physical impairments of a partner. A 63-year-old male participant explained what worried his wife:

“My wife accompanies me when I go for a longer walk because she does not totally trust me to go alone. When I have to cross a road, my impaired sight hinders me.”

Facilitators were advice from caregivers, physical support from a partner, mental support from family and friends, and having a walking companion. A 70-year-old male participant explained:

“My wife loves to go for a walk and I accompany her for fun. And also for some exercise.”

Mental support from family or friends was mentioned multiple times. Family could support actively by stimulating to walk or to perform gait-related activities or more passively by letting their partner do as much as possible himself.

Assistive products were mentioned as facilitators and included the use of a walking aid (e.g. cane or rollator) and ankle-foot orthosis or external guidance from a shopping cart, baby carriage, or banister. The availability of a cane or rollator stimulates people to go for a walk, go shopping or visit friends or family.

Barriers in the natural environment were bad weather, absence of daylight, terrain irregularity, steps (e.g. curbs, doorsteps or stairs), traffic, busy environments, and external time constraints. A 71-year-old male participant explained his difficulties with terrain irregularity:

“Sidewalks are difficult because the pavements are very unequal in our village. I have to look at the ground all the time to see the irregularities in the pavements. It is a challenge to walk outside.”

Also, traffic and busy environments were often experienced as difficult. For example, walking in a shopping mall or at the airport is challenging for many participants because they have to concentrate on their walking and the crowd at the same time. An example of the barrier external time constraints is given by an 80-year-old male participant:

“A few days ago, the trains were late and the train that I had to take arrived at another platform than I was at. I quickly had to go to the other platform and then I stumbled two times when climbing the stairs. Luckily, I could rectify myself with my non-affected hand on the steps that were higher. This was a situation in which I was less attentive and lost the routine.”

Facilitators in the physical environment were availability of places to sit down and nice weather.

Discussion

This study explored the barriers and facilitators for gait-related participation from the perspective of people after stroke using semi-structured interviews. We found barriers and facilitators for gait-related participation in all components of the ICF framework, including body function or structure level, activity level, participation level, personal factors, and environmental factors. Despite the fact that the majority of the participants had the ability to walk independently without physical assistance (Functional Ambulation Category 5), many of them were not completely satisfied with their gait-related participation and still experienced restrictions in walking in daily life. This confirms that gait-related participation is influenced by more factors than physical walking capacity alone. Also, it indicates that these relatively good walkers still have a need for improvement and sometimes additional treatment, which has to focus on more than walking alone. The barriers and facilitators found in this study may help to guide this treatment.

Many barriers that were mentioned are related to physical impairments that are known to be present after stroke, including motor impairment, sensory impairment, and fatigue. In addition, barriers in mental functions appeared to be important for people after stroke to perform gait-related participation. The relationship between cognition and walking in daily life is more and more acknowledged (Plummer-D’Amato et al., 2008; Yogev-Seligmann, Hausdorff, and Giladi, 2008). Previous qualitative studies that searched for barriers and facilitators for traveling outdoors (Barnsley, McCluskey, and Middleton, 2012) and walking outdoors (Outermans et al., 2016), however, did not find the various barriers in mental functions. This may be explained by the fact that our study was more focused on walking with a participation goal requiring more cognitive abilities. In the present study impaired cognitive functioning was described as delayed information processing, diminished stimulus processing, or difficulties with the allocation of attention when performing dual tasks.

Studies focusing on dual-task walking showed that people after stroke have difficulty in combining walking with simultaneous cognitive or motor tasks (Plummer-D’Amato et al., 2008; Yang et al., 2007). Walking with simultaneous dual tasks requires high attentional demands, especially since walking may be less automatic after a stroke (Yogev-Seligmann, Hausdorff, and Giladi, 2008). However, the cognitive ability to allocate attention can also be impaired in people after stroke (Haggard et al., 2000). As a result, the combination of walking and performing a dual task may lead to decreased performance in walking (e.g. slowing down or colliding with an obstacle), deterioration of the cognitive task, or both (Plummer et al., 2013). The decreased performance in walking may in turn lead to incidents such as falls (Montero-Odasso and Speechley, 2018; Weerdesteyn, de Niet, van Duijnhoven, and Geurts, 2008) or could refrain people after stroke from gait-related participation. This makes it important to consider cognitive functioning necessary for gait-related participation.

Furthermore, anxiety and insecurity were found as personal barriers to gait-related participation. Often anxiety and insecurity were mentioned together with loss of balance and fear of falling. This suggests that the barriers anxiety and insecurity are in line with previous studies that identified balance self-efficacy as an important facilitator for walking in daily life (Durcan, Flavin, and Horgan, 2016; Robinson, Shumway-Cook, Ciol, and Kartin, 2011).

High motivation, advice of caregivers, and physical and mental support from family and friends were shown to positively influence gait-related participation. Majority of the participants emphasized that they felt that feeling motivated to recover was important to regain gait-related participation. Motivation to recover is thought to be influenced by rehabilitation professionals and family members (Maclean, Pound, Wolfe, and Rudd, 2000). Therefore, physiotherapists might consider exploring motivation of people after stroke in order to improve gait-related participation. The importance of family support in stimulating walking and participation has been confirmed in previous studies (Outermans et al., 2016; Robison et al., 2009; Zhang et al., 2018).

Using all components of the ICF framework together, we provided a thorough overview of the barriers and facilitators that affect gait-related participation. Current physical therapy interventions have the tendency to focus predominantly on ICF function or structure level (Tetzlaff et al., 2018). However, because people after stroke reported barriers and facilitators in all components of the ICF framework, physical therapy or adjuvant rehabilitation interventions should also focus on improving cognitive functioning and identifying personal and environmental barriers and facilitators to improve gait-related participation. To improve cognitive function necessary for gait-related participation, walking should be exercised more often in combination with high cognitive demands such as dual tasks and stimulus-rich environments. Stimulus-rich environments can be created with the use of virtual reality. Using virtual reality training, people can learn in a safe environment to react on unexpected disturbances, obstacles, distractions, and dual tasks during walking (de Rooij, van de Port, Visser-Meily, and Meijer, 2019). Also, training in lively community environments such as shopping areas, train stations, and busy intersections might help to improve cognitive functioning necessary for gait-related participation. Besides cognitive functioning, interventions should focus more on exploring personal and environmental factors. By identifying personal factors, a therapist could find out how to motivate people after stroke and their environment to regain gait-related participation. Insight in environmental factors such as support and relationships and the physical environment of people after stroke can help to design personalized interventions for gait-related participation. These findings are in line with the study of Nanninga et al. (2018) which suggested that walking in home and community environments should be seen as a personal goal. Future research should further explore how barriers and facilitators for gait-related participation can be influenced in clinical practice.

The qualitative study design using semi-structured interviews allowed the participants to describe their view about gait-related participation in their own terms. The interviewer could elaborate on the participants’ answers to collect the most detailed information. However, our study has some limitations. First, the participants were recruited from a subcohort of the ViRTAS study. The participants of the current study might have been selected on their willingness and determination to improve walking because they all voluntarily participated in the 6-week intervention of the ViRTAS study. This may limit the transferability of the results to people after stroke in general. Second, participants were invited for an interview at the end of a 6-week intervention. They might be influenced by healthcare professionals in how they view their walking and how they apply strategies for walking in daily life. However, conducting the interviews at the end of the intervention has the advantage that participants are home for a longer time period and can therefore better describe their barriers and facilitators. Third, participants could have some cognitive impairments which might have influenced their perception of gait-related participation and the depth of their answers. The interviewer asked questions in different ways to get the most detailed and in-depth answers from the participants.

In conclusion, barriers and facilitators were reported in all components of the ICF framework. Gait-related participation is an important outcome measure. People after stroke may further improve on this outcome when considering movement-related functions, cognitive functions, personal factors, and environmental factors together during and after rehabilitation.

Declaration of Interest

The authors declare no conflict of interest.

Acknowledgements

The authors would like to thank the interview participants for their time. We also thank Ms. Vivianne van Beyeren Bergen en Henegouwen (PT, MSc) for contributing to the data collection, and Mr. Franssen and Mr. Willems (participants) for giving their input for the interpretation of the results.

Additional information

Funding

This work was supported by Revant Innovatie [NA].