By Jennifaye V. Brown, PT, PhD, NCS, Steven Best, PT, DPT, CSCS, and Julie Suhr, PhD

In their own words, 2 stroke survivors who use different AFOs, discuss the mismatched perception of how the ankle foot orthosis represents long-term disability but is a resource for independent safe mobility.

Three-fourths of all strokes occur in adults older than 65 and as age increases, stroke occurrence is greater in women than men due to life expectancy.^1,2 However, mean age for stroke has decreased recently, such that the term ‘young stroke’ has been used to account for the burden of disease associated with years that individuals live with stroke-related disability impacting daily living activities and participation in parenting and employment social roles.^3-5 The age defining ‘young stroke’ varies; however, stroke occurring under 50 is the recognized norm.⁶

Disability from stroke at any age presents as various impairments, with a common outcome being lower extremity (LE) weakness requiring external support to engage in functional mobility. Rehabilitation guidelines recommend an ankle foot orthosis (AFO) to reduce the impairment of foot drop associated with weakness and its contribution to increased falls risk from loss of balance.⁷  An AFO is designed to keep the foot from dragging on the walking surface. The objective is to achieve foot clearance in swing phase and stability in stance phase.⁸ While the AFO addresses LE weakness by preventing foot drag during swing phase, it does not always address the perceived functional needs of individuals with stroke (IwS). A perceived functional need would be wearing the AFO with different types and styles of shoes. There is insufficient qualitative evidence indicating that prescription, fabrication, and modification of AFOs are patient-centered and improve psychosocial aspects of engagement in daily living from the perspectives of IwS. Therefore, the intent of this study was  to determine how IwS understood and gave meaning to the process of getting an AFO, wearing it, and discussing with orthotists and physical therapists (PTs) issues impacting daily living.

The inability to walk in the same manner as pre-stroke is considered a physical disability and the impairment (foot drop) associated with the disability may impose long-term consequences on self-identity. Research indicates that IwS are equally concerned about AFO appearance and the limitations it imposes on lifestyle choices if they can walk.⁹ There comes a point when the AFO is perceived as a barrier to walking improvement when the IwS is able to move the hemiplegic foot and leg.⁹ On the other hand, if there is no foot drop improvement and the AFO is needed for long-term function, it may represent the possibility that the body may not return to normal, and the perception of chronic illness ensues.¹⁰ Stroke rehabilitation is often geared toward motor recovery to ensure functional independent mobility, the highest level being walking. However, little emphasis is placed on adjusting psychosocial mismatch of perceived recovery based on the functional outcome of walking versus the impairment of persistent weakness.^10-11

Self-identity can be described as body esteem and is related to functional independence.¹² Individuals with stroke can identify their body as an “object” of parts that present as aesthetically pleasing (body-as-object) or as a “functioning” conduit to interact with people or objects (body-as-process), in which appearance is of lesser value.¹³ The AFO can serve to improve walking function, but may not be aesthetically pleasing in appearance, denoting something is wrong with the body, thus reinforcing chronic illness perception. The purpose of this study was to explore and compare sentiments of two IwS, one classified as young stroke, regarding AFO impact on stroke recovery in terms of function versus impairment via its contribution to the body as an “object” or “process.”

Methodology

This exploratory study used a framework analysis approach to determine AFO fit, function, social appearance, maintenance and impact on activities and participation from the perspectives of IwS.^14-15 This method was chosen because it provides a systematic process to deduce similarities and differences between clusters of data. Clusters of data were organized into predetermined categories as a result of questions asked to generate the perspectives of IwS. The unit of analysis were categories of questions in the SHOWeD method.^16-17 What do you See here?; What’s really Happening here?;  How does this relate to Our lives?; Why does this problem or this strength exist?; and What can we Do about this?^16-17 The Ohio University Institutional Review Board approved this study.

Setting and Sampling Strategy

The primary investigator (PI) followed the recruitment process as previously described¹⁸ consisting of a purposive sampling method which required communicating with various healthcare practitioners who interacted with IwS in 43 counties within the Ohio Physical Therapy Association’s central and east central districts. Primary and or comprehensive stroke centers were located within a hundred-mile radius of the 43 counties and therefore deemed likely to provide eligible participants. Healthcare practitioners received a one-page research description, flier, and a self-addressed post card to be returned indicating participation via mail and instructions to indicate participation via electronic mail or fax. Healthcare practitioners were instructed to distribute fliers that explained the study purpose and how to contact the PI for participation. Additional mediums to recruit participants consisted of registering with entities that maintain databases of individuals diagnosed with stroke, public service announcements via radio, print and electronic mail. In the surrounding rural area where the PI was employed at the university, fliers were posted in local businesses and community centers to increase awareness of the study.

Participants

Individuals with Stroke, ages 30 to 65, who currently wear or have worn a custom hinged or solid AFO were targeted participants. The fliers instructed healthcare practitioners to distribute fliers to IwS who: 1) were diagnosed with a unilateral stroke within a year and if over a year, no memory compromise, 2) used a custom hinged or solid AFO for at least 1 month, and 3) walked at least 10 feet.

Data Collection

Fliers had instructions requesting IwS to contact the PI. Thereafter, a phone interview was completed to determine eligibility. Individuals with Stroke were excluded if they were unable to understand spoken or written material or see written material, pictures, or videos. At the initial meeting after explanation of anonymity and written consent indicating understanding of anonymity and study participation, the PI took pictures of the AFO and IwS wearing the AFO, and videotaped IwS performing an activity of their choosing wearing the AFO. At the second meeting, semi-structured interview questions validated for content and based on the SHOWeD method were asked to generate information about the AFO fabrication and maintenance process.^16-17 Participants looked at the pictures and the videotape when asked questions. Interviews were digitally recorded, transcribed verbatim and reviewed for accuracy. One interview length was 49 minutes and the other, 58 minutes. Participants were aware that the PI was a neurologic PT and adept at AFO design, fabrication, and modification based on stroke gait impairments. The PI kept a journal to record notes regarding the participants’ facial expressions and or body gestures during interviews in addition to self-reflections experienced during transcript review and data analysis. Participants received a $25.00 gift card upon interview completion and transcript review.

Data Analysis

The framework approach consisted of a 5-step process to analyze the data.^14-15 First was familiarization to become acquainted with the data. The PI listened to the digital recordings while reading the transcripts to make corrections and reread the transcripts thereafter. In addition, notes taken during the interview were reviewed. Second, recurrent issues, concepts, and topics were identified and grouped together based on supportive data found in the transcripts known as creating a thematic framework. Third, all data within the transcripts were identified by concept words, then sorted within the major themes established, known as data indexing. Fourth, the data within and between the major themes were compared and analysed on how they relate or differ. In an additional step, these major themes were analysed on how they related across the categorical questions of the SHOWeD method.^16-17 Thus, new terms were created to denote synthesis of information, known as charting. Fifth, mapping and interpretation consisted of finding how the developed terms were connected and related back to the research objectives and the issues, concepts or themes that emerged from the data. The analysis was done manually. The framework approach was cross checked by the trained research assistant to assure validity and reliability of data analysis. Agreement on the final themes occurred through reviewing of notes taken during independent data review and data discussion.

Confirmation of Validity & Reliability

Member checking, peer review and reflexivity were mechanisms to assure data credibility.^18-20 Participants received a copy of the interview transcript and corrected it for content accuracy and meaning for member checking. The trained research assistant and the PI independently coded data and then came to consensus on major themes that emerged from data for peer review.¹⁴ Last, the PI maintained an audit trail detailing data collection and analyzation processes. Journaling thoughts about 1) participant behaviors and responses to questions, 2) insights generated during reading transcripts and viewing pictures and videos multiple times, and 3) discussions with the trained research assistant during coding were methods to recognize biases that may have occurred during data collection and analysis, all of which are features of reflexivity.

Results

During a year and a half of active recruiting, 5 IwS contacted the PI and 2 were eligible for participation. Participant 1 (P1) was a 62-year-old white male with a left cerebrovascular accident (CVA) and right hemiplegia, 25 months post-stroke. He wore a solid AFO at least 4–8 hours per day. Participant 2 (P2) was a 37-year-old white female with a right CVA and left hemiplegia, 21 months post-stroke. She wore a hinged AFO all day during waking hours. The 3 other IwS were excluded because they did not have a custom AFO or could not remember details of their interaction with the PT and orthotist regarding the AFO. From the analysis, six major themes emerged: AFO impact, AFO properties, self-perceptions, communication, AFO modifications and maintenance, and future recommendations.

AFO Impact

The AFO had a positive impact on functional mobility skills and therapeutic activity, but a negative impact on the integumentary system and apparel. Regarding functional mobility, P1 commented that the AFO: “…was the only way that I could walk. It helped me a good bit in the beginning to walk, walk around the house, and I then graduated to the yard and the road.” P1 reaffirmed the importance of walking up and down the ramp, an advanced skill: “Well, it allows me to get in and out of my house.” P2 commented that the AFO provided stability to counteract strength impairments, thus allowing the ability to walk: “I mean I feel better having it on than not anything on. Cause I just don’t feel like my ankle is not very strong enough to walk properly without it rolling, I guess.” Furthermore, P2 reported the AFO provided stability during therapeutic activity using a modified elliptical machine: “Uhm, the brace keeps my ankle stable from rolling. Keeps my ankle from rolling. Laterally, on the left.” P2 further explained the importance of the activity: “I mean just to keep uhm, strong movement, uhm stay active.”

Despite the AFO’s positive impact, there were recognized negative AFO impacts that impeded walking. P1 reported, “But ah lately, it’s more of a hindrance because it doesn’t allow my foot to bend and allow my leg to walk upstairs anything like that.”  He explained compensatory actions caused by the AFO during walking:

Well, like if I, if I go to take a step up a step, I have to ah use my hip instead of using my leg. Ah I’ve got to swing my leg ah to get it to you know, go up a step. The sa- same way when I’m walking. If I’ve got to go up a slight incline I have to use my hip instead of my leg.

Furthermore, the AFO hindered complex functional gait abilities for P1: “Ah if I go to a store, or something I have to step over the curb, I got to lift kinda throw my leg up on the curb. I can’t step normally because it will not flex.”  Moreover, the AFO also affected foot placement: “Ah like when I sit down in a chair ah I, I can’t put my foot flat on the floor.” Additionally, the AFO obstructed the foot during stance phase for both participants. P1: “Like when I’m going on, on an incline, downhill. Ah it you know, it holds me back from taking a normal step because it won’t let my knee bend.”

This was also an issue for P2: “I guess my tibia and fibula moving forward over my ankle to stand and project forward. To propel forward or however you want to word that.” Furthermore, when asked if the AFO stops her body from moving forward, P2 commented: “I would say yes…Just walking forward I mean. My knee doesn’t bend great. My ankle doesn’t move great.”

The AFOs affected the participants’ integumentary system via creating friction and generating heat. Per P1: “I had a problem with my foot was crooked and it started to straighten up. I got a blister because of the brace and he had to, that’s when he ah made that bigger.” P2 stated: “I wouldn’t say it rubs, no, but I do sweat, in the calf part of it and it sticks to the skin.”

Last, the AFO fit altered clothing and shoe selection. P2 articulated: “Uhm, I really don’t know other than like, we’ve discussed it would be nice to wear regular tennis shoes, flip-flops, or you know wear a little sundress.” Both participants had an issue with shoes in terms of size and style for function. P1 was unable to wear his work boots with the AFO and was limited to wearing sneakers: “…I have to have a half-size bigger shoe to get it to fit. Well, it throws my other foot off because I’m wearing a half-size bigger shoe.” Specifically, he now wears New Balance 623 size nine-and-a-half wide, whereas he originally wore a size nine normal width. Similarly, P2 reported: “I was about a seven-and-a-half and these are nine-and-a-half wide.” She has only worn two pairs of sneakers in the past year which were modified with heel lifts to set her foot in plantarflexion to get the knee to bend. Because of the AFO, P2, as with P1, was limited in the style of shoes purchased, which further impacted her choice of clothing, unlike P1 who was not limited in clothing choice.

Innate AFO Properties

According to both participants, neither had problems with AFO properties such as breaking, cracking, or losing its shape, which were positive features inherent to the AFO. However, participants expressed several negative features, including stiffness, temperature, and AFO accessories. P1 commented that the AFO is: “…rigid, it’s solid plastic, it doesn’t give, there’s no give to it,” and “There’s no flex to this thing.” AFO stiffness prevented functional activities, such as squatting: “It, it’s, it’s, ah very rigid…Ah it will not let me my knee bend at all.”  P1 explained how the AFO inhibited foot flat due to it being inflexible: “What it does, where…it wraps around my leg here up, here it won’t let it, when I start dropping my foot, it puts pressure against the back and it won’t let it drop.” Regarding stiffness, P2 responded: “Hmm, I wouldn’t say so.” However, in response to a specific question regarding movement, she gave a response indicating the AFO was stiff because it limited a necessary movement. “I guess ankle movement, yes.” Her foot was in a plantarflexed position, which could be an attribute of the AFO, shoe heel height, or neuromuscular impairment. Therefore, the ability to move the foot may not be perceived as a weakness problem, but rather AFO stiffness. Both participants agreed that the weight and the height were negative AFO characteristics, particularly from P2: “It’s just big, and bulky, and heavy.” Furthermore, for her, having a hinged AFO and it being high up the calf reinforced the AFO’s negative impact: “Uhm, well the hinges don’t help fit inside the shoe…” and

I mean I don’t know if lower is best for the what it’s supposed to do, but it would certainly be nicer to get into a shoe, you know, or wear a pair of shorts with a tennis shoe or something.

AFO plastic temperature was an issue for P1:

It’s cold in the wintertime, it’s very cold. Uhm I know you get a temperature change, it’s possible to get a temperature change with stroke but that brace is cold by itself and uhm it seems like to me it there ought to be something to make it warmer.

Furthermore, the idea of the AFO being plastic posed a negative impact on functional mobility:

And you know it’s just not natural. It uh, it not any brace would be, but you know it’s like your whole leg’s encaged in plastic, your ankle, your foot. It ah it makes things rough to walk. Well because my leg won’t bend.

Last, P2 complained about the AFO ankle straps: “Uhm, well I don’t like this one was long enough to begin with, but it’s lost its sticky to stay on.” These comments described innate features of the AFO.

Another line of questions asked while looking at pictures or video elicited how participants felt about the AFO or what others perceived of them because of the AFO. These responses formed into a theme of self-perception.

Self-Perceptions

The third theme involved self-perceptions of the AFO as an external feature, yet it represented an inherent part of both participants affecting self-image and awareness about their abilities or inabilities. P1 described his AFO picture as: “… doesn’t look very user friendly. It ah, look, it looks very uncomfortable.” and for P2: “Ugly…Sad.” When describing the portrait wearing the AFO, P1 said: “I’m not yeah, don’t look comfortable in that picture.” P2 reported: “Uhm, I don’t know, it’s just, it’s just sad that this what (ah ha-laugh) I have become, this is my life.”  To further clarify how they feel with the AFO on, P1 reported: “Hindered…Ah, my leg and knee and hip;” whereas P2 reported: “Uh, I feel that I’m more stable than when I was without it, but do I like the looks of it, no.” When observing the video, the response about AFO function was positive for P1: “Its, it supports the back of my leg. It allows me to walk. Ah, it gives me support when I need it.” As previously noted under AFO impact, P2 expressed stability being a positive attribute; however, she was aware of her body movement when watching the video: “Yes. Uhm, my left side seems pretty stiff, not as much ankle movement or knee motion, I guess as the right.”

In response to how others view them wearing the AFO, P1 responded: “Well, if I’m in a store, they ah they kinda look at me kinda funny, see what’s wrong.” Similarly, P2 had the same sentiment: “Oh its I mean it draws attention. I draw attention, period, end…I just think the look of me in general is not your normal. I mean you can tell that there is something the matter.”

Participants described their activity participation while watching the video. P1 demonstrated insight into his impairments localizing it to the impaired leg: “Well it looks like I’m being careful (laughs) going up and especially going down. But, it’s not that I’m being careful, the leg won’t move.” P2 described herself as opposed to directing the commentary to the impairment: “Uhm, I, I would say that I look stiff and not uhm moving easily. But from where I come from, I think it’s okay.” She further clarified her feelings about the AFO while using the elliptical machine for exercise: “I mean I know I need to wear it, in order to prevent injury. Uhm, do I like the looks of it? No. Do I like the looks of my shoes with the heels? No.” Despite feeling fatigue after the activity, wearing the AFO served a purpose to prevent injury while using it: “Uhm, well since the last surgery, you know, it has taken me awhile to get back up and moving again. So, it’s helping to build my stamina.” Although there was a perceived benefit of stability provided by the AFO, P2’s overall perceptions about the AFO and herself were not positive.

Communication

Another theme was communication among the participant, orthotist, and PT. When asked about a conversation regarding typical shoes worn, P2 simply replied “No.” However, P1 explained: “Hmm, the only thing we had a conversation about ah I would probably have to have a half-size bigger shoe or one I could take the insole out of. And that was the only thing.” P1 had to remove the insole of the half-size larger shoe. There was not a discussion about how the AFO could fit in shoes. P2 replied: “Uhm, just taking out the insert on the left;” whereas P1 stated: “Typical shoes? They said it probably wouldn’t fit.” Neither participant currently wore shoes typically worn before their stroke.

Furthermore, to the best of their recollection, neither the orthotist nor the PT asked the participants about their typical daily activities, which could have guided the AFO fabrication process. P1 reported: “I didn’t really have much say in it. It was I either have that and walk with it or not walk at all.” P1 was told when he should wear the AFO: “At first, at first when I first had my stroke, ah they said that I should wear it if I was out of the house moving around from place to place.” P2 explained how the AFO helps in daily activities but appeared unsure: “Keeps my ankle stable…uhm (pause 5 seconds). I guess it kinda helps with my toe raise and rolling my ankle…Um, laterally, I think.” She offered a reason why the AFO hindered participation in daily activities: “I would say my shoe choice.”

Last, no one asked the participants their opinions how the AFO should look; however, the common sentiment was that it allowed basic walking function. These responses indicate the lack of communication among participants, orthotists, and PTs regarding AFO fabrication, particularly for appearance and activity use.

AFO Modifications and Maintenance

Another theme was AFO modifications and maintenance. The orthotist modified P1’s AFO because he developed a blister, and as a result: “He heated it up and moved it out away from my foot and then he put a piece of padding.” This limited formation of future blisters. AFO modifications occurred for P2: “Uhm, this actually this ankle strap was added to it.” When asked about the strap’s purpose, she replied: “Hmm. I don’t know. I don’t have a clue really…I guess my therapist did not like the way I was walking in it.” She later responded to the same question: “To keep my foot in back in the heel probably.” When asked if she had a choice of getting the ankle strap and explained why it was added, she replied: “No… uhm, I don’t believe so.” P1 further confirmed that she could not recall why she was getting the ankle strap. Additionally, heel lifts were attached to her shoes. She stated the purpose of the heel lift on the hemiplegic side was: “To get a better bend out of my knee is what was told to me. Something like a 9% bend or something.” The heel lift was initially inside the shoe. She explained: “Because you can only have a certain amount inside your shoe before it had to be put outside the shoe.” However, she did not believe the heel lift was making a difference for knee bending: “I couldn’t tell you. I mean, no I don’t feel like my knee is where I want it to be, by any means.” She clarified: “Not really. I think I mean, no, I don’t notice that much of a difference.” AFO modifications were made for both participants, but only P2 had a comment about maintenance: “We just you know sterilize it and clean it…nobody has really maintained it to make sure that it’s working properly.”

Future Recommendations

The last theme that emerged was future recommendations for AFO modifications and shared decision-making for AFO fabrication. P2 had recommendations for various aspects of the AFO but appeared unsure if it would have an impact. For example: “Different straps I guess, I don’t know.” But specifically, for the ankle strap: “Well I guess, moving the straps so I that have more ankle movement [pause: 7 seconds] and leg lower leg movement.”  She then further explained: “The tibia fibula to get a better bend, I guess.” In response to when is a better bend needed, she replied: “Just walking in general. And standing, sit to stand, and squatting, or Bowflex® or bike riding, everything. (laughs).”

Regarding the AFO purpose for foot clearance, P2 said: “I would say it could be better.” She clarified: “At the foot dropping, it could be better to keep it up. It could do better I guess.” Although she had a hinged AFO that was in plantarflexion with a heel lift on the shoe, there was a problem getting the foot up: “I think the hard part for me is with the foot drops is for instance getting caught under steps. The things with ledges or what have you.” P2 did not express any recommendations for strengthening her ankle muscles to pull the foot up and take advantage of the hinged mechanism.

To improve AFO function P1 suggested using different materials that would not only change innate AFO properties to function differently and better, but decrease its size and accommodate shoes regularly worn. He explained:

It seems to me that it doesn’t have all that plastic what’s on it that’s made up. Uhm, you should just be able to, me, on me, go up the plastic up the back and not so much on the sides. Uhm wouldn’t have to have all of foot. Uhm, wouldn’t have to a go a size bigger shoes. If they even done it that way, they cut the brace, they put it in half.

The last statement alludes to AFO bulkiness. He emphasized that: “Ah you know, they don’t have to be as cumbersome as they are.” He described cumbersome as: “Ah it’s like ah well, it’s like a club. You’re walking with a club instead of a foot.” P1 further described the impact of using different materials: “Well, you could, it could be ah lighter, of ah lighter material. It could be thinner. And ah it could flex. There’s no flexibility to it at all.” He reiterated that flexibility could improve walking and referenced a location where AFO flexibility should be: “On the foot. It’ll ah let me take a step like you normally would like normally would.” And specifically, “By the middle of the foot…the middle of the foot.”

P2 agreed: “Lighter… and something that it’s not so cumbersome…” She commented on the AFO being cumbersome: “It’s just big, and bulky, and heavy.” P2’s responses were more descriptive regarding the AFO material and structural parts, while looking at the AFO self-portrait. She reported about AFO design and functional impact: “I would say them if there’s thinner material [to accommodate shoe]…uhm, well the hinges don’t help fit inside the shoe either.” She added: “It would certainly be nicer to get into a shoe you know or wear a pair of shorts with tennis shoes or something.” P1 shared similar thoughts: “It has to be ah smaller. It cannot be ah there’s too much area, when it slides in your shoe. There’s too much area it takes up.”

Both participants had AFO recommendations for function while watching their video. P2 was on the elliptical machine. She reported: “Uhm I would say, not so high up on my leg. Uhm, the ankle stability seems okay on it.” Furthermore, P2 suggested to have the AFO lower on the leg to limit sweat production. She did not comment on the fact that her heel was not flat on the foot plate. P1 was walking up and down the ramp and his response was similar to previous ones: “I would make it smaller.” Additionally, he explained: “It allow, to make it smaller, my foot would bend and my leg would bend.” He explained where the foot was not bending; “Well for one thing, the arch. You can look at the video, my foot isn’t moving. My hips is doing the moving.”

Both participants provided suggestions to improve the look of the AFO from looking at the picture of it. P2 agreed with the sentiments of P1 as noted above about bulkiness, but again appeared unsure: “Hmm I don’t know. Maybe lower or not cut up so high.” She also included the idea of different straps (also noted above).

Last, both participants suggested shared decision-making for AFO fabrication, in which opinions about footwear and activities performed should be valued. P2 expressed how to do this: “Well just asking questions. Questioning what their they normally wear, shoe wise and their activities.” P2 was asked to explain the importance of activities. Her response: “Well because we have to stay active to keep from deteriorating. To get that brain uhm firing, like it should. To relearn what was lost.” P2 thought that the orthotist and PT should be asking about daily activities because: “Well that’s part of your every day, well that’s part of being alive. (Laughs). Your normal.” P1 was unsure whether being asked about daily activities would have influenced the AFO fabrication process early on. He reported: “It’s possible it could have been.” However, in terms of initial fabrication: “…when they made my brace, I didn’t really ah have much say in it. It was I either have that and walk with it or not walk at all so.” After wearing the AFO and being mobile, P1 felt he could articulate the AFO impact and share opinions about the AFO: “Me? Probably, it was a good year before I know realize that ah, the brace was hindering me more than helping me.” He answered “Yes” when asked if the orthotist should meet with him again after wearing and understanding the problems associated with it.

Discussion

An AFO serves to benefit the function of walking in IwS; however, there is ambivalence toward its long-term use if it is no longer serving the purpose of the user. The findings of these participants are like those of long-term users in that they can safely and confidently perform activities with the AFO and not depend on an assistive device.^21-23 Although the participants did not specifically mention balance, they were more apt to engage in activities requiring balance confidence with an AFO, especially, after their orthotist or PT told them the AFO was required to engage in activities such as initial pre-gait and walking activities in inpatient rehabilitation, walking outside on uneven terrain, and using equipment that required standing (elliptical).

The participants became dissatisfied with the AFO when it became apparent that it was hindering functional performance of the body part, not the functional activity. Both participants stated that the AFO prevented the knee from bending, and specifically for P2, “My tibia and fibula moving forward over my ankle to stand and project forward.” P1 reported similar comments when walking up the ramp that his hip was “doing the work” due to limited movement at the ankle. Previous research supports these perceptions of decreasing AFO stiffness, specifically a carbon fiber AFO (CF-AFO). Harper et al²⁴ found that there were no significant changes in ankle joint force production as the CF-AFO stiffness decreased, but range of motion (ROM) did increase. If ankle ROM could be improved by altering critical innate AFO properties used by these participants – plastic viscosity, hinge apparatus, and the anterior strap to secure tibia and ankle – to allow ankle ROM, then both participants may have had improved functional performance at their respective body parts and less compensation elsewhere. Research, however, indicates that reducing stiffness in the CF-AFO did not alter hip mechanics²⁴ but when a rocker bar was added to a solid ankle AFO, there was significant hip extension at toe-off.²⁵ Thus, maintaining a forefoot rocker allows for better push off if needed and knee flexion²⁵ at pre-swing to prepare the hemiplegic LE for swing phase – mainly foot clearance via the optimization of hip flexion at initial swing through passive recoil of the hip flexors. Perhaps for P1, this intervention could have alleviated his perception of the hip doing all the moving for the LE as opposed to the ankle from the transition of stance to swing.

Innate AFO properties did not have an overall negative functional impact. Both participants reported being able to engage in valued activities such as exercise and walking on uneven terrain with the AFO. P2 was unable to identify specifically how the AFO affected efficient elliptical machine use. After watching the video, she commented: “my left side seems pretty stiff, not as much ankle movement or knee motion, I guess as the right.” She did not mention the fact that her left foot was not flat on the footplate. P2 was uncertain as to what was the primary problem of her perceived mobility, particularly knee flexion: “I don’t know if it’s stroke-related or mechanic, I don’t know.” P2 reported ambivalence of not knowing about a stroke-related issue be it impairment or the AFO seven times, as opposed to P1, who used the term “I don’t know” one time. P2 was 21 months post-stroke and at this time, would have been knowledgeable about her impairments, their impact and optimal AFO intervention to match the level of recovery if perhaps someone discussed these issues with her.  This could be a communication issue between the participant and orthotist or PT. Both participants agreed that there was a professional dominance of what was best for them regarding AFO interventions. Research indicates that healthcare practitioners are not considering user experiences in the recommendation of AFO modifications.⁹ Furthermore, orthotists are attentive to technical aspects of AFO function, but do not consider how those technical aspects are functioning for AFO users.⁹ In the Holtkamp et al study,⁹ participants who did not use their AFO and who were dissatisfied with it, reported that patient concerns were not obtained throughout the entire process which included diagnosis, prescription, design, manufacturing, delivery, maintenance and user experiences. Furthermore, those who used the AFO and were dissatisfied commented that orthotists did not use patient feedback to improve AFO performance during the entire process. The participants who used the AFO and were satisfied reported AFO problems related to design and conditions under which they used the AFO. All groups reported negative comments that did not parlay into AFOs that were patient-oriented in design, fit, or use. Therefore, as in any therapeutic relationship, communication that includes shared decision-making results in patient participation and practitioner accountability.²⁶ The patient goes from “not knowing” to knowing enough to take an active part in the rehabilitation plan of care.

This knowing enough also parlays into self-awareness that perhaps they are doing better in terms of function, but not getting better in terms of impairment. Stroke recovery can be defined in the scope of functional recovery in which there is improvement in performance at the activity level (walking) but there is not associated motor recovery, which is improvement in strength.²⁷ Individuals with Stroke perhaps are associating recovery with being normal (pre-stroke status) and therefore the lack of motor recovery is indicative of body esteem loss in that a functioning part is lacking but function is occurring (walking). There is a mismatch at valuing functional recovery less and motor recovery more because of perceiving the body as an “object” requiring an AFO rather than perceiving the body as “process” to function with purpose.

Limitations

As an exploratory study using a framework analysis approach to ascertain the views of IwS, the findings cannot be applied to other IwS who wear AFOs. The perceptions expressed by the participants are unique to their lived experiences. Broader views may have been elicited if perhaps more IwS were recruited. However, the study location in rural Appalachia and the inability to recruit participants from urban areas in proximity to the study location may have contributed to a limited pool of eligible IwS.

Conclusion

Two very different IwS in terms of lesion location and resulting impairments, age, gender, and social backgrounds provided more similar than different commentary regarding their experiences associated with the AFO fabrication process, maintenance, and modifications. The AFO had negative and positive impact on functional mobility, and both participants were aware that their AFO became a hindrance when they perceived the ability to improve their walking. However, there appeared to be a disconnect in the realization that the absence of motor recovery may be the primary factor limiting walking improvement. Their ability to describe the impact of AFO properties and how they were perceived when wearing the AFO provided insight into their understanding of how the AFO could be a better functional support system but also served as a reminder that their safe mobility is dependent on the AFO. Thus, they would not return to what was perceived as pre-stroke normal. Last, communicating these issues was not a problem for the IwS, but the opportunity to share their perceptions how the AFO should function and accommodate their lived experiences was lacking. Orthotists and PTs should re-examine their role in the therapeutic relationship as experts in the skill of AFO fabrication and perhaps shift to fabricating an AFO that considers the psychosocial needs of IwS by including them in the decision-making process as to how the AFO should look, fit, and function. Further research is needed to create an AFO evaluation process that addresses and includes opinions of IwS.

Jennifaye V. Brown, PT, PhD, NCS, is a board certified neurologic physical therapist practicing in Charleston, South Carolina, specializing in stroke rehabilitation, specifically gait analysis, AFO design, and the redesign of lived spaces allowing individuals with disabilities to age in place. Contact her at info@jvbneuropt.com.

Steven Best, PT, DPT, CSCS was enrolled in the Doctor of Physical Therapy Program at Ohio University at the time the research was conducted and currently is a Sports Physical Therapy Resident for the University of Pittsburgh Medical Center.

Julie Suhr, PhD is and at the time the research was conducted, a Professor and Director of Clinical Training, Department of Psychology, at Ohio University.