Skills on wheels: initial pre-post findings from a pilot study of a pediatric wheelchair skills training program

Abstract

Skills on Wheels, a 5-week pediatric wheelchair skills training program implemented over 2 years, was developed to address confidence, social participation, and mobility for wheelchair-using children. This study tests the hypothesis that pediatric wheelchair skills training will increase wheelchair skill ability, confidence, and participation of wheelchair-using children. Individualized instruction was delivered by occupational (N = 50) and physical (N = 12) therapy practitioners and doctoral students. The primary program intervention was adapted for pediatric wheelchair users from the adult Wheelchair Skills Training Program, developed by Dalhousie University, consisting of a total of 33 wheelchair skills. An adapted version of the Wheelchair Confidence measure (Wheel-Con-M-P), the Participation and Environment Measure for Children and Youth (PEM-CY), and Wheelchair Skills Test (WST) were used to measure participants confidence and ability to complete wheelchair skills, endurance, and participation and satisfaction in community, school, and home. The study resulted in: increases in confidence in ability to move wheelchair over threshold (+1.00, p < 0.05), ability to carry lunchbox/bookbag (+0.65, p < 0.05), ability to move in wheelchair when worried or scared (+1.3, p < 0.05), ability to ask for help, and ability to say “no” if they don’t need help (+0.58, p < 0.05) were indicated. The WST indicated increased ability (p < 0.05) on several skills. The Fear of Falling Measure found an overall decrease in fear of falling (−2.37, p < 0.01). The Skills on Wheels program demonstrated many successes in this initial 2-year study and data suggest a positive trend for iterations to come.

IMPLICATIONS FOR REHABILITATION

• This program increased mobility skills that are typically overlooked in inpatient or outpatient settings.

• Through implementation of a pediatric wheelchair skills training program individuals have noted increased participation in their environments and increased engagement from parents/children in follow up sessions.

Keywords:

• wheelchair skills
• occupational therapy
• pediatrics

Introduction

Regardless of whether wheelchair-using children have acquired their chair as a result of congenital disabilities or progressive injuries and illnesses, wheelchair acquisition has been shown to positively impact independence as well as social participation [1]. This is of high importance as misuse of wheelchairs leading to tips and falls accounted for 65–80% of wheelchair-user injuries treated by emergency departments in a report from the National Electronic Injury Surveillance System [2]. Within the pediatric population, many of those emergency room visits were due to obstacles such as stairs, curbs, and ramps outside of the home.

Improving the ability of individuals with disabilities who are mobility challenged has been recognized worldwide. The United Nations Convention on the Rights of Persons with Disabilities (CRPD), Article 7, Children with disabilities states that all necessary measures are taken to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children [3]. In Article 20 the CRPD calls upon nations to take effective measures to ensure personal mobility with the greatest possible independence for persons with disabilities. The Convention calls upon nations to facilitate the personal mobility of persons with disabilities in the manner and at the time of their choice, and at affordable cost; facilitate access by persons with disabilities to quality mobility aids, devices, assistive technologies and forms of live assistance and intermediaries, including by making them available at affordable cost; and provide training in mobility skills to persons with disabilities and to specialist staff working with persons with disabilities [3].

Children’s main occupations are play, education, and family being. Lepage et al. [4] report a positive correlation between locomotion ability and participation in life activities. This indicates that decreased mobility may lead to decreased participation overall. Children who use wheelchairs may have the device needed to navigate the community, but the inability to skillfully use the device can require caregiver assistance to engage in play activities [5]. Recent studies have shown the effectiveness of new and novel methods of instruction to pediatric manual wheelchair users though it can still be difficult to tailor programming to meet all age ranges [6]. For example, The Seating To Go program in New Zealand showed that manual wheelchair skills training can have a positive impact on satisfaction with participation as well [7].

The ability to navigate the community effectively after a child’s wheelchair prescription might be assumed; therefore, little to no mobility training is provided. However, if children are not provided with training on how to use their wheelchair from clinicians, they might not learn these valuable skills at all. The recent adoption of the World Health Organization Wheelchair Guidelines support training as a key step in wheelchair provision [8]. Therefore, it is a neceanssary right that children must be given the skills through which to navigate the communities in which they live, play, and learn. This need has led to the creation of the Skills on Wheels Training Program, a training program for pediatric wheelchair-users and their caregivers.

Guiding interpretative framework

Critical disability theory (CDT) evolved from critical theories of society developed by Horkheimer [9]; CDT empowers human beings by recognizing and identifying ways to overcome societal constraints based on race, class, gender, and disability [10,11]. CDT views disability as a dimension of difference rather than a deficit; it must be studied within the context of social structures and power imbalances [10]. This is reflected in the current study’s design and methodology that centers participants’ lived experiences to understand the effects of wheelchair skills training on confidence and participation resulting from increased physical mobility. Wheelchair skills training is investigated as a means of overcoming barriers to participation and confidence that exist because of societal privileges for walking individuals and the devaluation of wheelchair use as a mobility method [12].

The present work

The Skills on Wheels program at Indiana University was derived from the Crann Centre Turas Saol Wheelchair Skills Training Program [13]. The Turas Saol (“Life’s Journey” in Gaelic) training program trains children and adolescent wheelchair users to utilize their chairs in the most efficient way leading to safer travel and increased participation in leisure and sports activities. This preparative program was developed by a wheelchair user who observed that children lacked functional wheelchair skills and modified what he had learned from the Wheelchair Skills Training Program (WSTP) developed by Dalhousie University [13]. Through a bi-national agreement, both Indiana University and the Crann Centre have adapted a version of the WSTP. A recent systematic review of the effectiveness of the WSTP shows that it is a safe method of developing both perceived and observed wheelchair skills necessary to navigate the environment of wheelchair-using individuals [14].

The partnership focuses on finding ways to create synergy between the community-based and academic perspectives for improving lives and care for persons with neuro-physical disabilities who are dependent on a wheelchair (or other mobility device). Out of that shared work, Crann introduced the team at IU to the concept of wheelchair skill training for children, and the first US-based Skills on Wheels training session was run at Indiana University in 2021 concurrent with the Ireland-based program.

This program for children is one that specifically addressed confidence and participation. These are two very important factors associated with any wheelchair user navigating their environment [14]. Given that these programs have shown to increase wheelchair skills in adults, it was a natural fit into the goals of the team at Indiana University. However, in the planning of this implementation, it was also important that all of these outcomes were properly measured throughout the program’s implementation.

Primary hypotheses

Based upon this guiding theory, it is the belief of the authors that wheelchair skills training will increase the wheelchair skills of pediatric participants. Further, this training will result in increases in wheelchair confidence and participation.

Methods

Study design

This study utilized repeated-measures, pre-post design. The design choice was based upon the frequency of intervention treatment, the logistical makeup of implementing the program, and ethical considerations that would arise from the use of a control group. Though other design methods allow for ethical use of a control group, it was also not feasible for the implementation in this instance. All participants received the treatment of the Skills on Wheels program and training that was associated therein. We conducted the study over 2 years implementing the program and aggregated the data from both instances for analysis. The first year of the program was a test of concepts with a few participants. This was followed by a second-year implementation. Data from the first year were then incorporated into the second-year analyses and were then reported in the present studied.

Participants

The program consisted of 21 participants over the course of 2 years of implementation (Figure 1). Two of those participants repeated the program in the second year and are therefore recorded twice in the record as separate observations. The inclusion criteria for this study was that a potential participant was a manual wheelchair user in the Indianapolis, IN area. Exclusion criteria were: (i) those that are under 8 years of age or over 18 years of age at the time of the first session; (ii) those that could not safely perform actions when directed by program staff; and (iii) those who had no use of their upper extremities or could not propel themselves forward in a manual wheelchair. All participants were between the ages of 8 and 17 years of age at the time of the treatment. Table 1 highlights the demographic data of these participants. Any other participating children still completed the program even if they chose not to take post surveys. These participants were all from the Indianapolis metro area and had varying diagnose but all self-identified as wheelchair-users as their primary mode of navigating their environment (though some identified as ambulating short distances with assistance).

Figure 1. Participant diagram.

Table 1. Demographic data.

Demographic	Number	Mean
Gender – Male	14 (78%)
Gender – Female	4 (22%)
Age	18 participants	11.5 years
Diagnosis – Spinal Cord Injury	2 (11%)
Diagnosis – Spina Bifida	11 (61%)
Diagnosis – Mitochondrial Myopathy	1 (6%)
Diagnosis – Autism Spectrum Disorder	1 (6%)
Diagnosis – Chromosome 2 Deletion	1 (6%)
Diagnosis – Guillian Barre Syndrome	1 (6%)
Diagnosis – Pineoblastoma Remission	1 (6%)
Diagnosis – Cerebral Palsy	1 (6%)

Recruitment

Participants were recruited by word of mouth, social media, and referral from area hospitals and community programs. Hospitals in the area had fliers that displayed program information and were handed out to children who presented as eligible. Upon filling out a web-based interest form, participants were screened via an appointment with a registered occupational therapist. This, along with a physician’s release, certified that they would be able to safely participate in program activities without more than minimal risk for injury.

Ethical considerations

This study was approved by the Indiana University Human Subjects Research Office. All participants as well as their caregivers were provided with study information sheets; they subsequently provided informed consent/assent for research participation. If a participant or their caregiver chose not to participate in the study, this decision did not preclude them from enrollment in the program or any other program activities. Anyone who did, however, choose to participate in the research project was awarded with up to $100 in gift cards dependent upon the number of instances of participation (pre/post/follow-up interviews).

Procedure

In this repeated measures, pre-post design; administered assessments were used to measure changes in wheelchair skills, wheelchair confidence, fear of falling, caregiver-reported participation, and desired changes in caregiver-reported participation. Participation was categorized as occurring in the home environment, the school environment, and the community. This wheelchair skills training was in line with the well-documented WSTP, and every effort was made to implement the training program with as much fidelity to the published manual as possible [13]. We further consulted these individuals for training and consultation in the planning of the program.

Skills on Wheels – Indianapolis is a training intervention in which children come to a gymnasium on a university campus. It is hosted once per year in the Spring and consists of sessions on 5 consecutive Saturdays to learn wheelchair skills from occupational therapists in collaboration with occupational therapy doctoral students. This way, occupational therapy students themselves also benefit from learning wheelchair skills. Student volunteers participate in a 3-h “boot camp” style training that aligns with other work in the occupational therapy program that is designed to boost confidence in skills and abilities [15]. The further connection of wheelchair skills training to the occupational therapy doctoral curriculum has also been shown to be beneficial [16]. The program itself follows the following framework:

• Saturday 1 – Initial Assessment

• Saturday 2 – Training

• Saturday 3 – Training

• Saturday 4 – Community Day/Training

• Saturday 5 – Post Assessment

The first day of the program is focused on baseline assessment of wheelchair skills. This initial assessment allows therapists and doctoral students to understand the starting physical ability level of the participating child. Outcome measures help to describe skills that are already safely mastered and those yet to be learned. This gives a roadmap as to the goals of the subsequent training sessions. The initial assessment day is followed by two training Saturdays in the gymnasium focusing on many of the skills outlined by the Wheelchair Skills Training Program [13]. Some examples of skills trained are rolling forward/backward, taking apart the wheelchair, navigating street curbs or inclines, and navigating stairs. Students keep secured notebooks from week-to-week documenting training outcomes and meet with caregivers at the end of each session to give homework or practice tips. At the end of each day of training, there are games from the WSTP manual as well as other fun activities for kids to conclude the day and add a fun element to the program.

Community day is the fourth Saturday of the program and involves taking the program to a community location that has large grassy areas, curbs, ramps, and stairs for practice of the skills in a real-world setting. This is an important aspect of the training as the situated nature of learning supports knowledge acquisition and potential transfer of training to other life situations. This equates to a total training time of 12.5 h.

Two unique elements of the program are Caregiver’s Corner and the Wheelchair Pit Stop. These areas help to support caregivers and families outside of the highlighted skill training. Caregiver’s Corner is a retreat for caregivers of children during the first 60–90 min of the program each Saturday. This area allows for a moderated discussion in which caregivers connect with one another on issues such as equipment, school accommodations, activities, and challenges of fostering occupational participation for their children. These issues most often stem from an environment that is not accommodating or built to support wheelchair users in the United States and around the world. Caregivers corner is a space that addresses the need for wheelchair maintenance skills for parents. Previous studies have shown the importance of these skills among manual wheelchair users [17] but this burden generally falls on the caregivers in the case of children. Additionally, Caregiver’s Corner facilitates discussions with pediatricians, wheelchair professionals, and therapists to help equip caregivers for the care and support of the child.

The Wheelchair Pit Stop is a part of the program in which assistive technology professionals (ATPs) and other wheelchair maintenance technicians work to tune up and adjust the wheelchairs of participating children to better support participation in daily life activities. This is done free of charge and relies on the volunteering of time and materials of participating companies or their employees.

Every aspect of this program is incorporated with the goal of facilitating occupational participation of the children in their home, school, and community. Further the program elements are aimed at fostering confidence, reducing fear, and building skills of these children. Several assessment tools were used to measure these outcomes to determine whether the Skills on Wheels program impacts mobility, confidence, and social participation.

Wheelchair skills

The Wheelchair Skills Test (WST) version 5.0 was used to score wheelchair skills. This test was developed by the same group that published the WSTP training manual and the two are meant to be implemented concurrently [13]. Given this link, it was a clear choice to evaluate wheelchair skills pre/post for program participants. The latest version of the WST gives clear communication on how to properly score various skills as well as when it can be determined that a skill should not be attempted as it would not be performed safely. The WST is primarily validated for adults but has been shown to be useful for pediatric populations as well [18]. The WST has also been used in a pediatric program that occurs over subsequent Saturdays like the current study [19]. It uses a 4-point scale of “advanced pass,” “pass,” “partial pass,” or “fail” to determine the proficiency of the skill. This is assessment has shown to be a powerful tool that allowed for us to see the changes in abilities of the children participating in the program in just five weeks.

Occupational participation

One construct that was measured through the Skills on Wheels program was participation. Arakelyan et al. [20] examined community participation for children with and without disabilities to find that children with disabilities participated less in unstructured physical activities, organized physical activities, religious gatherings, and getting together with friends. Therefore, it made sense that the this would be an outcome indicative of a successful program engaging this population. To measure this, the Participation and Environment Measure for Children and Youth (PEM-CY) was used. According to the CanChild Institute’s website, the PEM-CY is an assessment that looks at home, school and the community. Within these spaces, it measures the current participation, engagement during participation, and parents desire for further participation [21].

Specifically, it is useful in the present study for us to see the impact of environmental supports as well as changes in those supports over time. Caregivers report in this assessment the changes not only that they see, but the changes that they desire to see which is also useful. Caregivers often do not feel comfortable with a high level of participation for children with disabilities as they are often worried about potential injury. Since caregivers assist their children in learning wheelchair skills, it is the belief of the authors that caregivers will want to see their child participate more in various contexts. The PEM-CY gives the ability to see changes in those desired outcomes using a 5-point scale of participation on the various items involved.

Wheelchair confidence

One construct that was measured during the Skills on Wheels program was confidence in ability to perform wheelchair-related skills. In this context, confidence is described as the self-perceived ability to do an activity safely without assistance. Confidence, or self-efficacy, is important for pediatric wheelchair users as it influences behavior and supports independence [22]. Therefore, it is an outcome indicative of program success in improving independent, meaningful participation for the population of focus. To measure confidence, the program utilized an adapted version of the Wheelchair Use Confidence Scale for Manual Wheelchair Users (WheelCon-M), which was originally intended for use with adults. The WheelCon-M evaluates confidence in six areas, including “negotiating the physical environment, activities performed in the wheelchair, knowledge and problem solving, advocacy, managing social situations, and managing emotions” [22]. The Wheelchair Use Confidence Scale for Manual Wheelchair Users, Pediatric Version [23] is a subjective, self-report tool that provides 33 statements of wheelchair-related tasks. Participants rate their confidence in their ability to complete each task on a scale of one (not confident) to five (very confident). The pediatric version of the WheelCon-M is currently in development and validation. This adapted version of the WheelCon-M simplifies certain verbiage within the assessment to be better understood by children and provides pictures and graphics to support comprehension. In the Skills on Wheels program, the WheelCon-Ped was used as a pre- and post-assessment tool with responses provided verbally by pediatric participants on a 5-point likert scale.

Fear of falling

In the pilot program, wheelchair use confidence was measured; however, literature suggests that a lack of wheelchair use confidence may be indicative of fear [24]. Therefore, it is important to look at both confidence and fear of falling when assessing wheelchair skills. To date, there is only one pediatric fear of falling scale that was developed for ambulatory children with neuromuscular diseases [25]. Given there was not a scale to fit this patient population, the Pediatric Wheelchair-User Fear of Falling Scale (P-WC FOF) was developed and piloted for the second year of the program to measure fear of falling levels for wheelchair mobility skills. This scale was created by selecting mobility skills that are associated with categorical falls (forward, rear, sideways tips, etc.) from the Wheelchair Skills Training Program [13]. Simple language was utilized for children to understand the questions. Levels of fear are presented on a five-point Likert scale for each skill. The child indicates if they do each skill by themselves without a caregiver. If they do not do the skills by themselves, they are then asked if they avoid these skills because they fear falling. This provides further data of “fear avoidance” for mobility skills. The caregivers are asked the same questions regarding their own fear of their child falling. This scale will undergo validation to develop a generalizable assessment tool to measure fear of falling for pediatric wheelchair users.

Data analyses

Data analyses were performed using STATA version 17 [26]. All data were collected and summarized with codes in lieu of storing personally identifiable information about the program participants. Data were analyzed using a combination of IBM SPSS statistics version 28 as well as STATA Statistics and Data Science version 17 [27]. For privacy purposes, all data that were analyzed were promptly de-identified as per the protocol approved by the local IRB. T-tests were computed as independent group samples to ensure privacy of participants as this requires no group matching by identifiable information.

Results

Participants

Demographics display the identified gender, mean age, and diagnoses of the participants participating in the study. Programmatically, 4 children participated in year 1 of the program and 17 participated in year 2. This number however varies from those that elected to participate in the research study as well as experimental mortality (dropouts) between pre and post assessments. In the first year of the program, 4 participants enrolled and were a part of the research study. From pre-survey to post-survey timepoints, one participant dropped out. In year 2 of the program, 14 participants took the pre-assessments, and 8 participants took the post-assessments. This gives an aggregated total of 18 pre-assessment participants and 11 post-assessment participants.

Confidence/fear of falling Findings

The original hypotheses predicted an increase in confidence and a decrease in fear when related to wheelchair-based activities for the program participants. The results, displayed in Table 2, from the Wheelcon-Ped and Fear of Falling measures showed significant increases in physical confidence measures such as moving wheelchairs over a threshold (+1.00, p < 0.05) and carrying items in a backpack to school (+0.65, p < 0.05). Psychological confidence measures also showed statistically significant increases such as continuing to move forward if worried or scared (+1.3, p < 0.05), asking for help if needed, and saying “no” if help is not needed (+0.91, p < 0.01). Ultimately, the grouped measure of fear of falling showed an overall decrease in fear of falling out of the wheelchair (−2.37, p < 0.01) from participation of the program.

Table 2. Wheelchair confidence & fear of falling data on a 5-point scale (significant findings).

Item (N = 21)	Pre-mean (SD)	Post-mean (SD)	Change
I’m confident that I can move my wheelchair over a threshold	3.17	4.17	1*
I’m confident that I can carry my lunchbox and a book in my backpack to school	3.92	4.57	0.65*
I’m confident that I can keep moving in my wheelchair when I am worried or scared	3.3	4.6	1.3*
I’m confident that I can ask for help	4.42	5	0.58*
I’m confident that I can say “no” if I don’t need help	3.92	4.83	0.91**
Because I might fall, I’m afraid to attempt wheelchair skill activities (GROUP)	4	1.63	−2.37**

* = p < 0.05; a ** = p < 0.01; *** = p < 0.001.

Participation findings

It was originally hypothesized that overall increases in participation (home, school, and the community) as reported by caregivers from involvement in the Skills on Wheels program. In the case of frequency of participation, the opposite effect was shown pre/post. In many cases, this reflects opportunities for participation in various occupations within home, school, and the community. The depth of participation is really displayed in engagement while participating. There were no significant changes in the engagement of participation while at home or in school from the caregivers’ perspectives. However, a significant increase pre/post was shown in engagement while participating in activities around the communities of children in the Skills on Wheels program (+13.64, p < 0.05) as shown in Table 3.

Table 3. Participation data – caregiver reported (significant findings).

Item (N = 21)	Pre-mean (SD)	Post-mean (SD)	Change
Frequency of Participation – Home	24.46 (8.20)	23.00 (2.16)	−1.47
Involvement During Participation – Home	21.73 (8.00)	21.57 (6.29)	−0.16
Desire of Increased Participation – Home	19.70 (8.30)	22.57 (6.13)	−2.88
Frequency of Participation – School	23.29 (7.44)	15.00 (9.68)	−8.28
Involvement During Participation – School	14.31 (1.98)	11.67 (5.28)	−2.64
Desire of Increased Participation – School	10.86 (5.40)	20.71 (7.22)	9.86**
Frequency of Participation – Community	52.79 (11.65)	35.17 (16.24)	−17.62
Involvement During Participation – Community	31.79 (13.19)	45.43 (17.27)	13.64*
Desire of Increased Participation – Community	20.43 (9.35)	33.40 (10.83)	12.97*

* = p < 0.05; ** = p < 0.01; *** = p < 0.001.

The PEM-CY also measured the desired changes for participation frequency by caregivers. This is specifically important as caregivers are often the schedulers and gatekeepers for participation in pediatric settings. Desired changes to participation within the home did not show any significant changes. However, significant increases were observed in caregiver desire for participation in both the school (+9.86, p < 0.01) and community (+12.97, p < 0.01) settings.

Wheelchair Skills Test findings

Consistent with the stated hypothesis, the Skills on Wheels program did significantly impact participants’ WST scores (p < 0.05) in turning while moving forward, reaching objects, getting through a hinged door, descending low curbs, ascending high curbs, and ascending/descending stairs as shown in Table 4. The higher-level skills were noted as increasing significantly. All observed WST scores (though not all significant) showed increases over time. It is also of note that pediatric participants of the program displayed a significant increase in relieving weight from the buttocks.

Table 4. Wheelchair skills test data (significant findings).

Item (N = 21)	Pre-mean	Post-mean	Change
Turns while moving forwards	2.00 (50%)	2.57 (64.2%)	0.57*
Reaches object	2.00 (50%)	2.5 (62.5%)	0.50*
Shifts weight (relieves weight from buttocks)	1.53 (38.3%)	2.21 (55.3%)	0.68*
Gets through hinged door	1.56 (39%)	2.14 (53.5%)	0.58*
Descends low curb (5 cm)	1.24 (31%)	1.86 (46.5%)	0.62*
Ascends high curb (5 cm)	0.29 (7.3%)	0.79 (19.8%)	0.50*
Ascends stairs	0.08 (2%)	0.64 (16%)	0.56*
Descends stairs	0.07 (1.8%)	0.57 (14.3%)	0.50*

* = p < 0.05; a ** = p < 0.01; *** = p < 0.001.

Note. All skills measures showed an increase, however only the statistically significant gains are displayed.

Discussion

Wheelchair skills programs exist to engage adults, but few (if any) focus directly on delivery of wheelchair skills to children [28]. It can often be difficult for pediatric wheelchair users specifically to engage in meaningful occupations of play or social participation at school, playgrounds, and other elements within the community [29]. The goal specifically in this study is to leverage such a program to increase participation, confidence, and reduce falling fear within these children. Skills on Wheels is a program that has the potential to impact children across the country. It is important though to study the impacts of the program prior to dissemination or expansion. This study is the first step in determining the impact of a pediatric program like this in the United States or even beyond as this program is relevant globally.

From the first 2 years of the program, increases were found in confidence indicators such as navigating a wheelchair through a series of environments. This increase in confidence is of high importance in encouraging wheelchair-using children to participate in activities. This result compounded by a decrease in overall fear of falling show that this program impacts its participants. Many activities in which children participate involve navigating these types of environments and an increased confidence teamed with a decrease in fear of falling are optimal to encourage participation.

The increases in engagement as reported by caregivers is a potential outcome from confidence increases. Though it cannot directly statistically attribute this as a causal outcome, it can be postulated that they are connected. Increases in skills alongside the social participation of the program may lead to confidence boosts and decreased fear of falling. This confidence boost and decreased fear may result in improved occupational participation at home, school, and the community. Through increases in participation, caregivers appear to see what their children are capable and respond by wanting to see further development in participation. This desire for growth and independence for their children is an ancillary, but crucial outcome of the Skills on Wheels program. Anecdotally, the caregivers mentioned the helpfulness of Caregivers Corner in equipping them with relationships and information to navigate life caring for a child with a disability. Future studies should rigorously examine the impacts of this as well as the wheelchair pit stop for caregivers as this is outside the scope of the current study.

The increases associated with the wheelchair skills training are consistent with previously cited literature in that it increases skills associated with the program manual [30]. The usefulness of these results lends itself to implications both clinically and in the research community. However, as a community program, this fills a very important gap in the lives of many wheelchair-using children. Children need an opportunity to learn and try out these skills so that they can have the opportunities to participate confidently without fear in their homes, neighborhoods, and communities.

The research outcomes of the program are unique in that they address many constructs that are targeted by pediatric interventions involving children with disabilities. The hypothesized connection between skill acquisition, confidence, and participation is one that could open the door for many research projects to come. The specific mechanism of this relationship is one that appears to be well worth exploring. Furthering the research outcomes from this work also may involve collecting more data to see studies that give more statistical power to the outcomes. Outcomes from this study also may or may not be unique to this specific population. It would be interesting to see studies that collect similar data with different populations in different settings. Finally, the use of doctoral students in this program delivery is a unique feature that could present interesting findings for student gains in understanding of both mobility skill as well as disability itself [15].

Skills on Wheels participants who were recruited following an acute rehabilitation hospitalization have experienced a life-changing medical event or accident. These participants become more reliant upon, or permanently reliant upon, a wheelchair for mobility because of these situations. The Skills on Wheels program has been vital for this participant population. The skills taught through this program were unique and often not covered in traditional occupational therapy treatment. Moving forward, the Skills on Wheels program fills a necessary gap to educate participants on wheelchair skills. Wheelchair skills training can begin in inpatient rehab settings to improve independence through functional mobility. Teaching them the skills to operate a wheelchair efficiently, with decreased assistance, and through all of life’s obstacles helps to maximize their independence, foster increased self-esteem, and promote the return to participation in valued activities, including school, sports, and social events.

Often, the children participating in Skills on Wheels, who are followed on an outpatient basis, have been in a wheelchair for a large majority of their life. This is often their primary means of mobility. However, the skills required to operate a manual wheelchair and navigate their environment are often learned at home, through life experiences, and rarely taught in traditional occupational therapy settings. Although this has generally worked, it has been noted that Skills on Wheels has provided a large assistance in learning how to appropriately and safely complete higher-level skills. For example, many individuals will do “wheelies” in their chairs. This can cause damage to the chair frame, as well as to the individual, from the impact of the motion. Skills on Wheels shows the kids how to complete this skill, and many others, in a way that is proper and safe for them. The Skills on Wheels program allows the participants to be individually trained in skills to help them navigate their environment. There has been an increase noted in active participation in subsequent equipment evaluations after completing the program. Many of the participants, and their caregivers, have been noted to be more vocal during their follow up evaluations, actively engaging in the process, and noting challenges based on these newly learned skills. This likely leads to more independence as well as confidence in the participant and their caregivers to engage in ongoing conversation to advocate for their individual equipment needs and use their equipment optimally.

Study limitations

As with any study containing a within-groups design, the lack of a control group is always a threat to the internal validity of the study. Upon program planning, it was decided by the team that to deprive children of this experience in a control group environment would not have been feasible or in the best interest of the children involved. The sample size of the study also is limited and a larger quantitative investigation is warranted. Within that sample, the largest diagnosis was spina bifida. This gives a preferential outcome potentially to that diagnosis over others. Given that the program was delivered at no charge to the families, there is a potential for acquiescence to bias the results as it is always a possibility that families will say what they anticipate the researchers want to hear when receiving a free product or service. Finally, there was no control for any concurrent treatment or therapy during the 5 weeks of the program.

Conclusions

Wheelchair skills are an important part of development and participation for children with spinal cord injuries or diseases. Unfortunately, many therapy environments are not equipped with the time, staffing, or resources to engage in training of these skills. The Skills on Wheels program shows that a unique environment that is geared at social engagement, fun, and learning is an effective way to deliver this type of training. Moreover, the program delivered in this study impacted the participation and confidence of the children involved. Further work in future iterations and studies can expound on these findings and expanding the work into new spaces with new populations in years to come.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The authors acknowledge that this work would not have been possible without the generous philanthropy from the Kate Jarvey and the Ruth Lilly Family Philanthropic Foundation to the Riley Children’s Foundation which has supported both the creation of the collaboration and the launching of the IU Skills on Wheels program. Mary Ciccarelli, Lee Kirby, Paula Rushton, Krista Best, Lisa Kenyon, Béatrice Ouellet for their support and advice. The Crann Centre for Rehabilitation for their collaboration and support. Financial contributions from National Seating & Mobility, The Numotion Foundation, The Permobil Foundation, The Craig H. Nielsen Foundation, The Honda USA Foundation, Riley Children’s Hopital and The James Whitcomb Riley Children’s Foundation. We sincerely thank the students and volunteers for their hours and dedication. Most of all, we thank the participants and their families.