Communicating Standing and Walking Data after Spinal Cord Injury: A Patient-Engaged, Qualitative Study

This descriptive phenomenological⁹  study was conducted at the Lyndhurst Centre in Toronto with ethical approval granted by the University Health Network Research Ethics Board. The design of the study protocol was informed by Ontario's Patient Engagement Framework, which guides the planning, implementation, and evaluation of patient engagement activities.¹⁰  The framework's guiding principles—partnership, learning, empowerment, transparency, responsiveness, and respect¹⁰ —were interwoven into the study activities to facilitate effective and meaningful engagement. Two engagement approaches were used: (1) consult, in which feedback on a health issue was collected from persons with SCI, and (2) deliberate, in which persons with SCI and health professionals engaged in discussion on a health issue and explored solutions together.¹⁰  A qualitative research methodology facilitated the generation of detailed insights and allowed participants to be involved in generating solutions; these processes align well with the consulting and deliberating activities of patient engagement.

Inpatients with SCI were recruited through the central recruitment service at the Lyndhurst Centre.¹¹  Inpatients who met the following criteria were included: (1) diagnosed with a traumatic or nontraumatic SCI and (2) aged ≥18 years. We adopted purposeful sampling,¹²  considering severity of SCI and sex. We aimed to recruit individuals with motor complete SCI and individuals with motor incomplete SCI, enabling us to gain the perspectives of individuals spanning the full spectrum of mobility status. We also aimed to recruit a sample with approximately 60% to 70% males and 30% to 40% females, since SCI is more common among males.^13-15  A moderate sample size of 16 participants was targeted based on the concept of information power (Table 1). The information power of our sample was impacted by five key factors (i.e., study aim, sample specificity, established theory, quality of dialogue, analysis strategy); consideration of these factors all together, along a continuum, influenced the sample toward favoring a smaller or a larger sample size. After obtaining written, informed consent, demographic (i.e., age, sex) and injury-related data (i.e., time postinjury, mechanism of injury, neurological level of injury, AIS grade, ambulatory status) were collected by a researcher from the patient chart.

All participants received inpatient rehabilitation at the Lyndhurst Centre in Toronto, which is Canada's largest tertiary rehabilitation hospital for SCI. The Lyndhurst Centre receives, on average, more than 300 inpatient admissions and more than 20,000 outpatient visits each year.¹⁶  The SWAT is completed with all inpatients at admission to inpatient rehabilitation (i.e., within 7 days of admission), in the week prior to discharge, and at any other time point during their inpatient rehabilitation stay as deemed appropriate by the treating physical therapist.

Following discharge from inpatient rehabilitation, a researcher (K.C.) contacted participants monthly to maintain engagement in the study and facilitate the development of trust and rapport.¹⁷  Approximately 3 to 4 months postdischarge from inpatient rehabilitation, a semi-structured interview was completed by phone. This time point was chosen as participants were able to comment on whether knowledge of their standing and walking performance may have impacted their inpatient experience and their transition to community living.

The interviews were led by either a researcher (L.C.) who had qualitative interviewing experience and was a physical therapist in neurological and musculoskeletal private practice or a physical therapy student (C.T.). As both interviewers had physical therapy backgrounds, they had an in-depth understanding of the neural control and biomechanical requirements of walking, and they understood that regaining the ability to walk was a therapy goal for some individuals living with SCI. At each interview, L.C. and C.T. explained the information produced by the SWAT measures to provide context. L.C. and C.T. then followed a semi-structured interview guide developed by the research team. Participants were asked open-ended questions about (1) what communication, if any, they had with their physical therapist about their standing and walking ability while an inpatient, and (2) what information, if any, they would have liked to receive about their standing and walking ability during inpatient rehabilitation (see Table 2). Toward the end of the interview, participants were shown the SWAT (i.e., Figure 1) and the Physical Therapy Report Card,^5,18  which includes four core measures of the SWAT. Participants were mailed or emailed the SWAT and report card in advance of the interview and were asked to look at these documents during the interview. The participants’ perspectives on the usefulness of these preexisting tools were gathered. All interviews were audio-recorded.

Demographic and injury-related data were reported descriptively using frequency counts, the mean and standard deviation, or the median and interquartile range, as appropriate. The transcripts of the interviews were the single source of data for this study. The interviews were transcribed verbatim offline by a member of the research team (K.C.). Participants were given the option to review their transcript and edit the content or add information. However, none of the participants opted to receive their transcript. NVivo 12 (QSR International) was used for data management.

A conventional content analysis was completed.¹⁹  Two researchers (K.C., a kinesiologist with an MSc in Rehabilitation Sciences and qualitative research experience, and C.T., a physical therapy student) independently read two transcripts line-by-line and recorded marginal notes. They then met to compare and discuss the marginal notes and develop codes with definitions (i.e., a preliminary codebook). The preliminary codebook was then applied to another four transcripts by K.C. and C.T. independently, and updates to the codebook were made. The codebook was iteratively applied to and updated for another six transcripts that were independently coded by K.C. and C.T. and reviewed by L.C. The codebook was finalized by K.C. and L.C. after the analysis of the remaining three transcripts. G.I., a person with SCI, and C.W., a physical therapist, reviewed the resulting themes and example quotes. Edits to the themes were made based on their feedback. Their input allowed us to verify our interpretations of the collected data and incorporate their unique perspectives into the analysis.

Sixteen individuals were enrolled in the study, although one withdrew consent prior to the interview. Fifteen individuals with SCI (5 female, 10 male) aged 59.1 ± 17.3 years participated (Table 3). The severity of participants’ injuries was classified as AIS B (n = 2), AIS C (n = 4), AIS D (n = 7), and unknown (n = 2).

At the start of inpatient rehabilitation, nine participants reported their mobility status as nonambulatory. Those who were able to ambulate typically required the use of an assistive device (e.g., walker). Several participants regained their ability to walk with or without an assistive device over the course of inpatient rehabilitation. At the time of the interview, four participants were nonambulatory and 11 participants were able to ambulate with or without an assistive device in their homes, though some participants required the use of a wheelchair when mobilizing in the community.

Four main themes were identified from the interview data: (1) motivation for standing and walking, (2) current standing and walking practice, (3) participant preferences for feedback on standing and walking ability, and (4) perceptions of preexisting tools. Table 4 outlines the themes, subthemes (if applicable), and example quotes, with Q1, Q2, etc., linking quotes to the text.

Participants indicated that having a motivation to improve their standing and walking ability led to an interest in receiving feedback about their performance during inpatient rehabilitation. Two-thirds of participants (n = 10) expressed having motivation to improve their standing and walking ability (Q1, Q2), with this motivation beginning early after injury. Participants mentioned receiving encouragement from their physical therapist (Q3), which contributed to their motivation. They also discussed specific goals for their walking ability, such as walking without a gait aid (Q4) and participating in recreational activities they enjoyed prior to injury (Q5). Two participants further explained that their motivation to improve standing and walking ability was influenced by concerns about the quality of their walking movements, their safety when trying a new gait aid (Q6), and the possibility of falling in the home environment (Q7).

Participants outlined how information pertaining to their standing and walking ability was obtained and shared in inpatient physical therapy, resulting in two subthemes: (a) assessments conducted during inpatient rehabilitation, and (b) feedback received during inpatient rehabilitation.

Participants explained that assessment of standing and walking ability during inpatient rehabilitation was mainly implemented by physical therapists; however, the implementation varied according to ambulatory status and timing within their inpatient hospital stay. In additional to physical therapists, therapy assistants and an occupational therapist were also noted to occasionally perform these assessments. Participants recalled tests of balance, range of motion, strength, walking, and advanced walking tasks (e.g., avoiding obstacles) being administered (Q8-Q10). Nonambulatory (n = 2) participants reported a lack of assessment of their standing and walking (Q11). This lack of assessment for nonambulatory participants was the only between-group difference identified during the secondary comparison analysis.

The timing of assessments varied from participant to participant. Some participants mentioned being assessed once (i.e., at admission, midpoint, or before discharge) (Q12, Q13), while other participants were assessed at least twice during the course of their inpatient rehabilitation (Q14) or on a day-today basis (Q15). One participant stated that they were assessed during a transition of care (Q16).

Most participants reported receiving feedback about their standing and walking ability during inpatient rehabilitation; however, the format and frequency of that feedback varied. Feedback on standing and walking ability was received in various formats: verbal, written, electronic, and hybrid (i.e., combination of two or more formats), with verbal feedback being most common (Q17). One participant (P04, nonambulatory) “took a picture of the copy” so they would have the option of sharing the results with their outpatient physical therapist. In contrast, three participants, one of whom was nonambulatory, stated that they did not receive any feedback (Q18).

For the participants who did receive feedback, they recalled feedback being received biweekly (Q19) or daily (Q20). However, the daily feedback was not necessarily directly related to their standing and walking ability (Q21). Upon receiving feedback on their standing and walking ability, participants shared that information with family and friends (Q22, Q23) and other healthcare professionals (Q24) in their circle of care. Two participants, including P03 (nonambulatory), mentioned sharing feedback with their hospital roommate, as this was someone also experiencing SCI (Q25).

Participants’ preferences for receiving feedback on their standing and walking ability during inpatient rehabilitation are reflected in two subthemes: (a) what the feedback would be useful for, and (b) preferences for format and timing of feedback.

Most participants (n = 13) stated that receiving feedback on their standing and walking ability would be useful for goal setting (Q26), gaining insight into their physical abilities (Q27), and monitoring progression of their therapy (Q28, Q29). It was also noted that the feedback could be shared with the next physical therapist that a participant would work with after hospital discharge (Q30). Contrarily, two participants, one of whom was nonambulatory, stated it was not important for them to receive feedback on their standing and walking ability (Q31, Q32).

Participants preferences for how feedback on their standing and walking ability is received varied; however, the majority (n = 10) preferred a hybrid format with oral input combined with written or visual information (Q33-Q35). Having a written or electronic copy of the feedback would enable individuals to review the information whenever most appropriate for them during the early postinjury phase (Q36). Two participants indicated they preferred daily feedback on their standing and walking ability (Q37), while others (n = 9) preferred to receive feedback at intermittent time points, such as monthly (Q38, Q39) or at specific time points during their hospital stay (Q40).

After the SWAT and Physical Therapy Report Card were introduced and explained to the participants, they provided their thoughts and opinions of each tool. Overall, participants indicated that both tools were clear and could be helpful when setting goals, expectations, and monitoring progress, especially if the information was linked to functional changes. The SWAT stages were described as “comprehensive” (P03, nonambulatory), “self-explanatory” (P07, ambulatory), “quite clear” (P11, ambulatory), and “straight forward” (P16, nonambulatory). At least seven participants found that the diagrams were helpful to understand the SWAT (Q41, Q42). Similarly, the Physical Therapy Report Card was described as “pretty self-explanatory” (P08, nonambulatory) and “straight-forward” (P14, ambulatory). Providing a range of average scores from community-dwelling adults was perceived to be a useful aspect of the report card (Q43, Q44). Participants indicated that both tools could display their current standing and walking status (Q45) and progression through inpatient rehabilitation (Q46-Q48). It was also suggested that the SWAT stages could facilitate goal setting related to standing and walking ability (Q49, Q50).

Despite these potential benefits, some participants (n = 3) mentioned that numbers and scores were not as important as tangible, functional changes in their standing and walking ability (Q51, Q52). As stated by P13 (ambulatory), “I don't go by papers, I go from my performance… how my body talks to me.” It was also suggested that the amount of information provided on the report card was more than necessary for a person with SCI (Q53) and that the report card would not be able to reflect the constant changes in their function (Q54).

This exploratory, descriptive qualitative study described how information about standing and walking ability was translated from physical therapists to inpatients with SCI at a Canadian tertiary rehabilitation hospital and identified patient preferences for the receipt of feedback about their standing and walking ability. The majority of participants described having motivation and goals to improve their ability to stand and/or walk. There is considerable variety in the nature, format, and frequency of feedback on standing and walking ability that inpatients with SCI receive. Verbal feedback is most common, possibly because written records are created for clinicians and the patient's chart. Participants indicated that feedback is useful for goal setting, monitoring therapy progress, and communicating their abilities to other healthcare professionals, families, and peers. Verbal feedback combined with written or visual information was the preferred format for receiving feedback. Preexisting tools, such as the SWAT figure and Physical Therapy Report Card, may facilitate the feedback process, but some participants stressed the value of seeing tangible, functional changes in their standing and walking ability rather than focusing on scores on clinical assessments.

Taken altogether, the findings suggest most individuals with SCI are interested in receiving feedback on their standing and walking ability during inpatient rehabilitation; however, a key finding was the variability in the desired format (e.g., verbal, written), frequency (e.g., daily, monthly), and nature (e.g., functional achievements, scores on clinical measures) of the feedback. This finding suggests a personalized approach is needed. At the beginning of inpatient rehabilitation, the physical therapist and individual with SCI could jointly create a feedback plan that reflects the individual's preferred format, frequency, and nature of feedback. The plan could be revisited throughout the individual's hospital stay as preferences may change as recovery progresses. Explicitly personalizing the feedback process through consideration of the individual's needs and preferences aligns with the philosophy of person-centered care.²⁰  Individuals with SCI want to contribute more to the decision-making of their care, and their involvement facilitates empowerment, feeling capable, and increased autonomy— all desired outcomes of the rehabilitation process.²¹ 

To facilitate the exchange of personalized feedback on standing and walking ability, it would be helpful to have a variety of feedback tools that clinicians can select from. The Physical Therapy Report Card is one such tool. Participants in the current study indicated that the SWAT figure may be a useful feedback tool, albeit with some modifications as the SWAT figure was not designed for this purpose. Other tools may exist that could be modified to share feedback on standing and walking. For example, inpatients receiving medical care have expressed interest in a progress bar with important steps and past/future events related to their care displayed; a similar tool could be developed for standing and walking rehabilitation.²²  The collection of a variety of resources available to clinicians may have the benefit of reducing their workload, as standardized tools would likely take less time to complete than a nonstandardized form or tool. By creating a variety of feedback tools, a toolkit on standing and walking feedback could be developed. Toolkits are a collection of varied knowledge translation products that collate explicit knowledge.²³  They are a low-cost strategy to facilitate clinical implementation, and their use has been linked to improved quality of care for other clinical populations.^24-26 

We identified three limitations of our study. First, the interviews were conducted over the phone due to COVID-19 restrictions, so we were unable to observe participants’ body language and nonverbal cues. Second, only four participants were nonambulatory at the time of the interview; hence, the study findings primarily reflect ambulatory individuals with SCI. Third, we only collected the perspectives of inpatients with SCI, but not the clinicians who provide feedback on standing and walking ability. Future work could focus on probing clinician perspectives on sharing feedback on standing and walking ability with their patients, especially as tools for providing feedback are developed.

Feedback on standing and walking ability provided to inpatients with SCI should be individualized according to the preferences and needs of each individual with SCI. The nature, format, and frequency should be jointly determined by the individual living with SCI and their physical therapist. The creation and implementation of feedback tools may facilitate the delivery of personalized feedback on standing and walking ability after SCI.