Abstract
Context
The growing number of females entering the armed forces has led to an increase in the number of female Veterans with spinal cord injury and diseases (SCI/D) requiring mobility devices. Limited research exists that explores whether mobility devices meet their needs in terms of comfort, fit and design.
Objective
To characterize respondents with SCI/D who use mobility devices and determine if these devices are meeting their daily needs.
Design
Online survey.
Settings
Veterans Health Administration.
Participants
Female Veterans with SCI/D who received mobility devices in the past five years.
Interventions: Participants completed an online survey regarding their challenges in obtaining and using mobility devices for their daily needs.
Results
101 women with SCI/D participated in a nation-wide online survey. Respondents were mainly in their 50s and 59% were not currently employed due to their disability. Most used manual (35%) or power wheelchairs (34%). Many female Veterans felt their devices were not made with female users in mind and some felt they did not meet their needs. Opportunities to improve the assessment, follow-up, maintenance and repair processes were identified.
Conclusions
Given that some female Veterans with SCI/D felt their devices did not meet all their needs, it is important for researchers to engage women in user-centered design of mobility devices and for providers to be mindful of Veterans’ daily needs within all steps of the provision process in order for mobility devices to support overall function and usability.
Keywords: Females, Veterans, Spinal cord injury, Mobility devices, Daily needs
Introduction
The incidence rate of traumatic spinal cord injuries (tSCI) in the United States (US) continues to increase and as of 2024 is currently at about 18,000 new cases each year based on the National Spinal Cord Injury Statistical Center (NSCISC) databases (1–5). The percentage of women acquiring SCI is about 20% of total injuries, remaining steady (i.e. 22% in 2020 (2) and 21% in 2024 (1)). The number of female Veterans with spinal cord injuries or disorders (SCI/D) is predicted to increase as the number of female Veterans increases. There are nearly 2 million female Veterans living in the US, making up approximately 10% of the overall Veteran population (6). The female Veteran population is expected to increase at an average rate of 18,000 women per year for the next 10 years, with projections that 12% of Veterans nationwide will be women by 2025 (6).
Most individuals with SCI/D are mobility device users and require the use of crutches, canes, and manual or power wheelchairs to participate in essential aspects of life ranging from personal hygiene maintenance to social activity engagement (7). Device use varies by both neurological level of injury and completeness. Individuals with tetraplegia are more likely to use power wheelchairs, while individuals with paraplegia are more likely to use manual wheelchairs, crutches, walking frames, and leg braces. Most of the studies exploring mobility devices focus on men given the higher incidence of SCI/D in males (1–3). Smaller scale studies have reported on the difficulty women face with their mobility devices in terms of size and fit (8), healthcare needs and apprehensions (9, 10), and the gender bias associated with obtaining a mobility device (8). However, large-scale studies examining the experiences and challenges of female Veterans with SCI/D who acquire and use various mobility devices in the US are lacking, especially with the increasing Veteran population. Public Law 114–223 enacted by Congress on September 29th, 2016, specifically noted that the Department of Veterans Affairs (VA) should ensure adequate prosthetic and mobility device research addressing female Veterans. This information could then be used address the needs of female veterans including influencing the future design of mobility devices that incorporates the needs and perspectives of women.
Our study focuses on a subset of female Veterans with SCI/D who participated in a nationwide self-report survey regarding women Veterans’ experiences with mobility devices. The objective of this study was to characterize the respondents with SCI/D who use mobility devices in terms of demographics and devices used as well as determine whether these devices were meeting their daily needs.
Methods
A national online survey was created to obtain information about female Veterans’ experiences with obtaining and using mobility devices. Inclusion criteria were as follows: (1) female; and (2) VA prescriptions for any type of mobility device (e.g. leg braces, canes, walkers, wheelchairs, scooters) issued within the past 5-year period. Qualifying females were identified using national level Veterans Affairs (VA) electronic medical records including VA’s national SCI/D registry. These individuals were mailed an invitation between May and June 2022 to participate in an anonymous, online survey regarding their experiences related to obtaining and utilizing mobility devices. A second invitation was sent 8–10 weeks later to encourage those who had not participated to complete the survey.
This study was reviewed and approved by the Institutional Review Boards at Edward Hines, Jr. VA hospital in Hines, Illinois and the VA Pittsburgh Healthcare System in Pittsburgh, Pennsylvania.
Subjects
4078 female Veterans who had received any mobility devices, defined as foot orthoses, leg braces, crutches, walkers, wheelchairs and scooters, were identified using a combination of the VA Corporate Data Warehouse (CDW) and the VA’s Spinal Cord Injury VHA Service Support Center (VSSC) Registry. These women were sent invitations by mail to complete the survey. Of note, we did not link each survey responses with the respondents’ VA medical records, as we chose to keep responses anonymous. However, given that we included women from the SCI registry, we have confidence that our respondents did have an SCI.
Study design
The online survey was developed and administered using Qualtrics software. The 20-item survey included questions regarding participant demographics including age, marital status, employment level, living situation, primary device used, and level of SCI/D (paraplegia or tetraplegia). We did not collect information about etiology of injury. Questions regarding the design, fit, comfort and whether the devices met the respondents’ needs were posed in a Likert style questionnaire with options ranging from not satisfied at all or strongly disagree to very satisfied or strongly agree. An open-ended comment section was also included in the survey after each Likert style question to allow more detailed responses from respondents in regard to their devices. The online survey is included as supplementary material. Some women contacted the study team to request hard copy surveys to be mailed to them as they did not have access to a computer to complete the survey. Respondents were informed that there would be a random drawing in which one out of every 300 respondents would be selected to receive $100 for participation.
Statistical analysis
Descriptive analysis of categorical data was carried out using frequencies and percentages. SPSS version 28 was utilized for analyses.
Results
Almost six hundred respondents (n = 593) completed the survey, of which 101 indicated that they had a SCI/D. Fourteen respondents did not answer all the questions but did respond to questions about primary mobility and were included in the final assessment.
Participant demographics
Participants ranged in age from 18 to 80 with the most common age range reported to be 50–59 years. 96% of the participants identified as female, 2 identified as transgender (male to female), and 2 participants did not answer (Table 1). The two individuals who did not answer were identified as female based on the databases used to select the veterans invited to participate in the survey. Close to half of the women were married (45.5%), and 58% identified themselves as disabled when asked about employment. Approximately a third (32.7%) had an associate degree or had completed some college, and 43.6% of participants lived in a suburban location.
Table 1.
Participant demographics and characteristics.
| Characteristics | N | Percentage |
|---|---|---|
| Age | ||
| 18–29 | 2 | 2.00% |
| 30–39 | 4 | 4.00% |
| 40–49 | 13 | 12.90% |
| 50–59 | 35 | 34.70% |
| 60–69 | 33 | 32.70% |
| 70–79 | 12 | 11.90% |
| 80+ | 2 | 2.00% |
| Sex | ||
| Female | 97 | 96.00% |
| Transgender: Male to Female | 2 | 2.00% |
| Missing | 2 | 2.00% |
| Marital Status | ||
| Never Married (Single) | 19 | 18.80% |
| Married | 46 | 45.50% |
| Divorced | 25 | 24.80% |
| Separated | 1 | 1.00% |
| Widow | 9 | 8.90% |
| Other | 1 | 1.00% |
| Location of Home | ||
| Urban (City Setting) | 27 | 26.70% |
| Suburban (Outside City Limits) | 44 | 43.60% |
| Rural | 29 | 28.70% |
| Highly Rural (i.e. <7 people living within a square mile) | 1 | 1.00% |
| Current Living Situation | ||
| Own Home | 78 | 77.20% |
| Rent | 16 | 15.80% |
| Assistive Living | 2 | 2.00% |
| Nursing Home/Facility | 4 | 4.00% |
| Missing | 1 | 1.00% |
| Highest Degree Attained | ||
| High School/GED | 15 | 14.90% |
| Associate Degree or Some College | 33 | 32.70% |
| Bachelor’s Degree | 28 | 27.70% |
| Advanced Degree | 21 | 20.80% |
| Missing | 4 | 4.00% |
| Employment | ||
| Full Time | 7 | 6.90% |
| Part Time | 5 | 5.00% |
| Retired | 29 | 28.70% |
| Disabled | 58 | 57.40% |
| Not Applicable/Unemployed | 2 | 2.00% |
Disability type and mobility devices
Respondents reported the type and number of disabilities they had, along with their primary mobility device and total number of devices used (Table 2). Of note, 14 respondents reported a concomitant diagnosis of multiple sclerosis. Most respondents used either a manual (35%) or power (34%) wheelchair and identified themselves as having paraplegia (75.2%). The most used device for women with paraplegia was a manual wheelchair (42.1%), while most women with tetraplegia used power wheelchairs (60%).
Table 2.
Disability type and mobility devices.
| Characteristics | N | Percentage |
|---|---|---|
| Type of Disability | ||
| SCI/D with Paraplegia | 76 | 75.20% |
| SCI/D with Tetraplegia | 25 | 24.70% |
| Number of Disabilities Identified | ||
| Identified as having Single Disability | 49 | 48.50% |
| Identified as having Multiple Disabilities | 52 | 51.50% |
| Type of Primary Mobility Device Used | ||
| Cane | 9 | 8.90% |
| Crutch/Crutches | 1 | 1.00% |
| Walker | 12 | 11.90% |
| Leg or Foot Brace/Orthosis | 8 | 7.90% |
| Manual Wheelchair | 35 | 34.70% |
| Power Wheelchair | 34 | 33.70% |
| Scooter | 2 | 2.00% |
| Number of Devices Used | ||
| Singular Device | 70 | 69.30% |
| Multiple Devices | 31 | 30.70% |
Questionnaire results
In terms of the assessment, equipment recommendation, and selection process, the majority of respondents agreed or strongly agreed (79.3%) that their needs related to mobility were accurately identified, and they felt comfortable providing input in the decision-making process (77.5%; Table 3). However, most were neutral or disagreed when asked if they were able to try different devices (66.2%), if several device options were available (69.8%), or if the devices were designed with women in mind (89.5%).
Table 3.
Participants’ experiences with evaluation, procurement, and follow-up for mobility devices.
| Assessment, equipment recommendation and selection | |||||
|---|---|---|---|---|---|
| Item | Strongly disagree/disagree N (%) | Neutral N (%) | Strongly agree/agree N (%) | Total (N) | No response |
| My needs were accurately identified | 11 (13.80%) | 6 (7.50%) | 63 (79.30%) | 80 | 21 |
| I felt comfortable providing input into decision-making process | 14 (17.50%) | 4 (5.00%) | 62 (77.50%) | 80 | 21 |
| I was able to try out different devices | 38 (47.60%) | 15 (18.80%) | 27 (33.80%) | 80 | 21 |
| There were several options available | 41 (47.70%) | 19 (22.10%) | 26 (30.20%) | 86 | 15 |
| The devices were designed with women in mind | 40 (46.50%) | 37 (43.00%) | 9 (10.50%) | 86 | 15 |
| Procurement, product preparation, fitting, training and delivery | |||||
| Item | Strongly disagree/disagree N (%) | Neutral N (%) | Strongly agree/agree N (%) | Total (N) | No response |
| I received the device in a reasonable time | 16 (18.60%) | 10 (11.60%) | 60 (69.80%) | 86 | 15 |
| I received a device customized to my preferences | 14 (16.30%) | 8 (9.30%) | 64 (74.50%) | 86 | 15 |
| I received enough education and training | 9 (10.50%) | 12 (14.00%) | 65 (75.60%) | 86 | 15 |
| I felt comfortable asking for help on how to use the device | 9 (10.50%) | 14 (16.30%) | 63 (73.30%) | 86 | 15 |
| The VA was able to accommodate all my needs for obtaining the device | 12 (13.90%) | 4 (4.70%) | 70 (81.40%) | 86 | 15 |
| Follow-up, maintenance, & repair | |||||
| Item | Strongly disagree/disagree N (%) | Neutral N (%) | Strongly agree/agree N (%) | Total (N) | No response |
| I received enough information about how to maintain and repair the device | 26 (30.20%) | 24 (27.90%) | 36 (41.80%) | 86 | 15 |
| I am able to talk to someone when I have questions about the device | 10 (11.70%) | 17 (19.80%) | 59 (68.60%) | 86 | 15 |
| I am able to conduct routine maintenance on my own or with outside resources | 17 (19.80%) | 11 (12.80%) | 75 (87.20%) | 86 | 15 |
| I am able to get my device fixed quickly | 24 (27.90%) | 24 (27.90%) | 38 (44.20%) | 86 | 15 |
In terms of procuring the device and the fitting, training and delivery process, the majority of women agreed or strongly agreed that they received the device in a reasonable time frame (69.8%). Respondents said that they received a device that was customized to their preferences (74.5%), they received enough education and training on use of the device (75.6%), they felt comfortable asking for help (73.3%), and that the VA was able to accommodate their needs (81.4%).
Regarding follow-up, maintenance, and repair, the majority of respondents were neutral or disagreed that they had received enough information on maintenance or repair (58.2%). Only a little over half indicated that they were able get their device fixed quickly (55.8%). However, the majority agreed or strongly agreed that they were able to talk to someone when they had questions about their devices (68.6%), and that they could conduct maintenance on their own or with outside resources (67.4%).
Some participants noted that their mobility devices did not meet their needs for some tasks. In particular, they identified housework (24.3%), basic self-care (5.7%), employment (20%), social activities (17.5%), leisure activities (23.1%), childcare needs (25%), public transportation (31%), and travel (20.8%) as areas that were lacking (Table 4). It should be noted that the number of responses to these items is listed in the tables and were based on those who participated in these tasks, as not all tasks were relevant to all respondents (e.g. childcare).
Table 4.
Unmet needs assessment.
| Unmet needs | |||||
|---|---|---|---|---|---|
| Does your mobility device meet your needs with respect to … | Yes N (%) | No N (%) | Total responses (N) | N/A (N) | No response (N) |
| Employment/Job | 16 (80.00%) | 4 (20.00%) | 20 | 67 | 14 |
| Childcare Needs | 9 (75.00%) | 3 (25.00%) | 12 | 74 | 15 |
| Social Activities | 66 (82.50%) | 14 (17.50%) | 80 | 7 | 14 |
| Leisure Activities | 60 (76.90%) | 18 (23.10%) | 78 | 8 | 15 |
| Travel (for business or leisure) Activities | 61 (79.20%) | 16 (20.80%) | 77 | 9 | 15 |
| Public Transportation | 29 (69.00%) | 13 (31.00%) | 42 | 45 | 14 |
| Basic Self-Care (bathing, dressing, hygiene) Activities | 66 (94.30%) | 4 (5.70%) | 70 | 17 | 14 |
| Driving Activities | 57 (91.90%) | 5 (8.10%) | 62 | 25 | 14 |
| Housework (cleaning, cooking) Activities | 53 (75.70%) | 17 (24.30%) | 70 | 16 | 15 |
Twenty-eight comments were provided in the open-ended comment sections focusing on the ill-fitting size and design of devices for female Veterans as well as causing musculoskeletal pain after daily use.
Discussion
The goal of this exploratory study was to characterize female Veterans with SCI/D who used mobility devices and determine if these devices were meeting their daily needs. To our knowledge, this is the first study examining the needs of female Veterans with SCI/D utilizing various mobility devices in the US on a large scale. This study adds to the literature by further detailing their experiences as well as their challenges with devices.
The Wheelchair Service Provision Guide (11), which is published by the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA), identifies the necessary steps in providing wheelchairs including, referral, assessment, equipment recommendation and selection, funding and procurement, product preparation, fitting, training and delivery, follow-up maintenance and repair, and outcome measurement (11). Our study identifies opportunities for improvement in several steps of the provision process, not only for wheelchairs, but for all mobility devices. While different mobility devices have unique characteristics in terms of indication, prescription, and maintenance, this study focused on only the SCI subgroup, therefore, we grouped devices together for analysis.
The majority of the respondents indicated that their needs were identified during the assessment process; however, many noted that their mobility devices did not actually meet their needs once they did receive their device. The majority of female Veterans felt they were not given the option to trial and select from different devices to match their lifestyles and unique needs. Similar concerns have been raised in prior studies that have demonstrated that limited options for selecting a device and having it customized can impede independence and function (8–10). However, the option of trialing different types of equipment may not be feasible at the VA due to regulations and limitations on the number and types of equipment available. These findings suggest the VA should strive to expand clinically appropriate options for various mobility devices for women Veterans to try prior to selection.
Furthermore, while many respondents did indicate that their devices were customized to match their preferences, this was not true for all respondents. Without a more detailed conversation with these respondents, it is difficult to ascertain what parts of customization may have been an issue, thus limiting the conclusions drawn from the responses. Improving communication between the clinician and the Veteran should be considered to better establish what the Veteran hopes to gain from the device in order to match the customization, needs, and preferences of the Veteran.
Many of the responses from the open-ended comments focused on the design and fit of the device. This included comments such as, ‘some devices are harder to lift and transport’ or ‘the height of the chairs needed to be adjusted to accommodate a smaller frame of the female Veteran’. Comments concerning the sizing of the devices also included complaints of back and shoulder pain when using the devices on a daily basis along with an increased risk of falls from wheelchairs. Many women outside of the VA setting have also indicated a lack of proper fitting and sizing of devices, especially wheelchairs, with respect to the female body and anatomy in mind (8–10). Improper fitting poses numerous safety concerns and increases the risk of falls and other trauma (12). The VA could take further steps to ensure that clinicians who are assessing women for mobility devices have the proper training to select and fit equipment for these women. However, because not all devices are necessarily designed by women or with women users in mind, an opportunity also exists to engage women Veterans in all stages of the research and development process for mobility devices.
In addition, female Veterans expressed a need for more information on maintenance or repair and felt these services were not available in a reasonable time frame from the VA. Many women sought maintenance or repair services outside the VA as a result. Prior research has shown that people with SCI experience adverse consequences like being stranded when their equipment required repair (12–16). The VA could mitigate this issue by implementing more reliable and quick repair services, providing access to backup or temporary devices, providing training on maintenance and repair (17), and promoting regular wheelchair checkups (18) during annual evaluations.
Limitations
This study had several limitations. One was response rate. Only 17% of female Veterans that were contacted responded to the survey. While the most common SCI/D is tetraplegia (1), majority of the respondents had paraplegia. It may be that more women with paraplegia had an easier time to complete the survey with a computer or smart phone compared to their tetraplegic counterparts. Of note, some respondents did ask for hard copies of the survey. It is not known if these respondents completed the survey independently or had assistance. Self-report and recall bias may affect responses. Low response rate limits some of the conclusions that can be drawn about female Veterans’ unmet needs. For example, the responses for employment and childcare were very small, however, this may also be attributed to the relevancy for respondents. Self-report bias is an additional limitation in the study that can correlate with the discrepancy between number of participants and the response rate.
As this was a VA specific population, the generalizability of findings to the larger female SCI/D population in the US may be limited for several reasons. Obtaining equipment and devices through the VA has added benefits for Veterans with SCI/D. Veterans can be given one power mobility device (i.e. power wheelchair or scooter) along with a backup chair. Having one powered device does not preclude them from having other equipment that is deemed necessary at the same time with no added cost (i.e. walker, cane, etc.). Modifications and customizations for these devices are up to the discretion of the clinician based on clinical judgement and assessment. In contrast, patients with SCI/D obtaining their devices outside of the VA typically are allowed only one mobility device every five years. Furthermore, these entities require the clinician to engage in prior authorizations with the insurance teams to justify the use of devices, which can be a cause of delay in procuring the devices.
Moreover, there was no opportunity for participants to state if they had concomitant co-morbidities (i.e. morbid obesity, limb loss, traumatic brain injury, etc.) on the survey. This may confound responses regarding difficulties related to mobility devices.
Finally, we did not have comparable responses from male Veterans. We do not know the extent to which males may have similar concerns or issues related to their mobility equipment.
Despite these limitations, this study reinforces the importance of matching women with SCI/D to mobility devices that best fit their needs with respect to comfort, use and daily activities of living and steps of the provision process where the VA could make improvements.
Conclusion
The objective of this paper was to characterize the growing female Veteran population with SCI/D who use mobility devices. Some female Veterans felt their devices did not meet their needs and indicated that devices were not designed with female users in mind. Analyzing these Veterans’ goals and requirements for independent living provides an opportunity to improve the assessment, provision, follow-up, maintenance, and repair processes of mobility devices.
Supplementary Material
Acknowledgements
Dr. Frances Weaver is on the editorial board of the Journal of Spinal Cord Medicine. The remaining authors report there are no competing interests to declare. The views and opinions expressed here are those of the authors and do not reflect the views and opinions of the federal government.
Disclaimer statements
Contributors None.
Funding: This work was supported by the United States Department of Veterans Affairs Rehabilitation Research and Development Service [grant number SPIRE Award # RX003452-01A1].
Declaration of interest None.
Conflicts of interest No potential conflict of interest was reported by the author (s) otherwise.
Supplemental data
Supplemental data for this article can be accessed on the publisher’s website at https://doi.org/10.1080/10790268.2024.2383378.
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