We believe independent locomotion is a fundamental human right throughout the lifespan. Independent locomotion provides a means for individuals to engage in everyday life activities including exploration and enjoyment of the world. Powered mobility devices (PMDs), 1 type of assistive technology, provide options for individuals with disabilities to engage in daily life. We define a PMD as any device that requires a battery or other electrical power source for activation that an individual uses to move from place to place. These devices may include powered wheelchairs, scooters, or nontraditional forms of technology such as low- or high-tech robots, or even toys.
Researchers have documented the developmental gains for young children with disabilities when provided access to and opportunities for independent locomotion via a PMD.1–5 Children with disabilities as young as 6 months old have used a PMD as a means to explore their world2,3 and displayed positive gains in social communication, cognitive development, and other motor skills, including walking.2,6–8 An emerging PMD option for very young children with disabilities includes modified ride-on cars (ROCs, also known as ride-on toy cars).
Go Baby Go is a community-based, research, design, and outreach program. This program works with families, clinicians, and industry to provide modified ROCs to children with disabilities for exploration and enjoyment. Obtaining an ROC is relatively easy as they are available at local toy stores and online distributors. Modification supplies are also readily available from local hardware stores, department stores, and popular online sites. Modifications can be individualized and typically include an adaptive activation switch and supportive seating systems. Huang and Galloway9 have published a technical report that may be used as a reference.
Modified ROC use seems to be increasing, as has research associated with its use for children with disabilities.10,11 Two reports demonstrated the potential benefits of modified ROC use for an infant with Down syndrome10 and a toddler with cerebral palsy.11 Each child was not considered a typical candidate for a PMD, such as a powered wheelchair, because of their young age (13 and 21 months, respectively). No commercially available powered wheelchair is available for children 2 years and younger. Furthermore, infants with Down syndrome are not candidates to receive a powered wheelchair because they commonly walk independently around 24 months of age. In both reports, each child used their modified ROC to increase their mobility and socialization.10,11 Modified ROCs may be an alternative PMD because they are adaptable in real-time, durable, relatively low-cost, and easily obtained. To the authors' knowledge, these are the only published research studies that provided modified ROCs to young children with disabilities. Similarly, children living in long-term care facilities with complex medical needs (CMNs) are another population that is not always considered for a PMD. The authors have not found any other single-subject research design studies that consider modified ROC use for children with CMNs.
Individuals with CMNs are defined as “...chronically critically ill, long-term mechanical ventilator dependent (or otherwise chronically medically supported).”12 A majority of these individuals have more than 1 primary diagnosis with the most common clinical conditions including genetic/congenital, neuromuscular, cancer, respiratory, gastrointestinal, and cardiovascular conditions.12 A recent estimate suggests that 6 to 14 per 100 000 children live with CMNs.13 How many children within this group experience a lack of independent locomotion is unclear, but given the severity of conditions associated with the CMN classification, the percentage is likely high.
Opportunities for self-directed exploration via PMDs are even more limited for children with CMNs compared with children with disabilities who have a more stable medical history and who are also using a PMD.7,14 This is likely due in part to safety and/or health concerns by caregivers or medical/educational providers.14 The literature involving families and children with CMNs typically focuses on caregiver stress or burden rather than exploration of locomotion.15 The purpose of this report was to determine the feasibility of short-term modified ROC use for exploration and enjoyment by 3 children with CMNs.
The present study was an AB single-subject research design. The design followed the guidelines for rigor and quality established for evidence level V. This study incorporated “heterogeneous” participants with “low-incidence” conditions and participants that may “demonstrate variability from day to day.”16
This study included 3 children with CMNs (see Figure 1 for a photograph of each child). All 3 children used a tracheotomy tube and a mechanical ventilator for breathing. Children are referred to as Child A, Child B, and Child C to protect their identity.
The following information was observed and reported by each child's clinical team. At the start of the study, Child A (6 months of age) could independently sit but could not stand, crawl, or walk with or without assistance. Child B (19 months of age) could independently sit and could stand and walk while using an assistive technology device and with hands-on assistance from a caregiver. Child A and Child B were observed and similarly described as nonverbal. Each understood cause-effect relationships as demonstrated through interactions with toys that resulted in lights and sounds when buttons were pressed. Each was cognitively delayed compared with peers who were typically developing, although the precise amount of delay was unknown. Child C (5 years, 10 months of age) required assistance to sit and did not stand, crawl, or walk with or without assistance. Child C had a spoken vocabulary of approximately 30 words and a comprehensive vocabulary of many more words. He understood cause-effect relationships as demonstrated through interactions with toys that resulted in lights and sounds when buttons were pressed. He was able to identify shapes, colors, and animals and count to 10. He was cognitively delayed compared with peers with typical development, although the precise amount of delay was unknown. None of the 3 children could physically move themselves from place to place by any means, nor did they have access to a PMD. The use of a modified ROC for mobility represented a significant change from their daily routines that were otherwise limited to passive mobility provided by a caregiver.
Description of Facility and Modified ROCs
Modified ROC use and video recordings occurred at a pediatric long-term care facility that specializes in providing care to children with CMNs through skilled nursing, transitional, and palliative care, 24 hours per day, 7 days per week. The primary researcher and the facility staff inspected the facility to determine safe driving spaces for children. Main hallways, 1 recreational room, and 1 gymnasium were agreed upon as safe spaces for driving. Informed parental/guardian consent and permission for photography were obtained before the start of the study. The university Institutional Review Board approved all procedures.
The primary researcher and the staff agreed upon the best ROC model for each child. Key factors in choosing a model included consideration of each child's body size, hand reach, and models that could accommodate the child's ventilator. Common modifications for all 3 ROCs included installation of a Velcro pelvic belt for safety, a headrest constructed of polyvinyl chloride (PVC) pipe, and a child-size kickboard attached to the PVC for additional head support. These materials were used due to their low cost and availability at local hardware and department stores.
Child A used a modified 6-V, Fisher-Price Power Wheels Barbie Volkswagen Beetle ($139.99). This model travels at 1 speed of 2.5 mph and can move forward or in reverse. A large activation switch with light-touch pressure sensitivity was installed and placed on the steering wheel (AbleNet 5″, Big Red Twist Switch, $59). His ventilator was placed in a small trunk in the back of the modified ROC.
Child B used a modified 12-V, Peg Perego John Deere Ground Force Tractor ($229.49). This model travels at 2 speeds, 2.25 and 4.5 mph, and can move forward or in reverse. A small activation switch with light-touch pressure sensitivity was installed and placed on the left handle bar (AbleNet 2.5″, Jelly Bean Twist-Top Switch, $59). A toy trailer was included and attached to the back of the modified ROC and to store the child's ventilator while driving.
Child C used a modified 12-V, Fisher-Price Power Wheels Ford F-150 Truck ($364.99). This model travels at 2 forward speeds, 2.5 and 5 mph. This model can travel at 1 speed in reverse, 2.5 mph. A large activation switch with light-touch pressure sensitivity was installed and placed on the steering wheel (AbleNet 5″, Big Red Twist Switch, $59). His ventilator was placed in a small trunk in the back of the ROC during use. It is important to note than an electrical engineer determined that all modifications were safe for the modified ROCs. See a previously published technical report for more modification suggestions.10 The modified ROCs were kept at the facility at the conclusion of the study. The children were often provided opportunities to continue to use them during the subsequent months.
Description of Study Periods
Occurring in both baseline and intervention periods, car-play sessions were provided to children as an opportunity to explore the environment through use of a modified ROC. Car-play sessions were researcher-led, lasted for 10 minutes, and video-recorded and analyzed to determine exploration and enjoyment. Car-play sessions included an opportunity for exploration such as driving up and down hallways or in the recreational room or gymnasium. The goal of video recording the researcher-led car-play sessions was to track changes over time on the measures of exploration and enjoyment.
This study involved 2 assessment periods: baseline and intervention. The baseline period (12 weeks) included 6 biweekly visits by the researcher to the facility. Each baseline visit included a researcher-led 10-minute car-play session that was video-recorded. Children were only provided an opportunity to use a modified ROC during these sessions. The goals of these sessions included allowing the children to become familiar with the car and to learn how to press the activation switch. At the conclusion of the baseline period, clinicians received a 1-hour, in-person training on safe modified ROC use that included positioning each child in the seat, charging the battery, switch operation, and initial suggestions for driving activities. Each clinician demonstrated competence in the training components at the end of the training session.
The intervention period began immediately after the baseline period and was intended to last for 12 weeks. All 3 children were unable to complete 12 weeks because of various health complications, unrelated to use of a modified ROC. The actual number of intervention weeks included 8 weeks for Child A, 7 weeks for Child B, and 5 weeks for Child C. The intervention period included weekly visits by the researcher to the facility. Each intervention visit included a researcher-led, 10-minute car-play session that was video-recorded. The goal of the intervention sessions was to provide an opportunity for exploration to each child while using a modified ROC.
During the intervention period, in addition to car-play sessions, each child's clinical team was encouraged to provide daily opportunities for 20 to 30 minutes of use of a modified ROC. The daily opportunities to use the modified ROC distinguished the baseline and intervention periods. These opportunities included time for exploration, goal-oriented driving, and play-based activities. For example, during exploration, children used the modified ROC in approved locations throughout the facility and chose where they wanted to go, whom to interact with, and if they wanted to play with toys. During goal-oriented driving, clinicians used each child's favorite toys to promote stopping on command and driving with the purpose of reaching a toy in order to play with it. Finally, during play-based activities, clinicians encouraged children to use the modified ROC to interact with peers during social games in the gymnasium. The daily opportunities to use the modified ROCs were structured on a day-to-day basis by a clinician who decided if exploration, goal-oriented driving, or play-based activities would be pursued, but within each driving session children directed their own experiences through independent driving of the modified ROC.
Video recordings of the 10-minute car-play sessions during baseline and intervention visits were coded for the following dependent measures meant to reflect the level of exploration and enjoyment. Exploration was measured by the percentage and total time each child spent in independent, assisted, and caregiver mobility. Enjoyment was measured by the frequencies and percentages of positive and negative facial expressions.
Exploration was defined as children demonstrating independent driving of the modified ROC in approved locations throughout the facility. Children chose where they wanted to go, whom to interact with, and if they wanted to play with toys.
Percentage of time and total time (minutes and seconds) of 10-minute car-play sessions that each child spent were in the following categories:
- Independent mobility: Child drove the modified ROC by independently activating the switch without adult assistance.
- Assisted mobility: Child independently drove the modified ROC after an adult initiated switch activation.
- Caregiver mobility: Child drove the modified ROC with an adult's hand directly on top of his/her hand.
Enjoyment was determined by a frequency count of the child's positive or negative expressions. Expressions were counted in 3-second intervals. For example, if a child smiled continuously for 6 seconds, 2 positive facial expressions were recorded.
Positive facial expressions included the number of facial expressions involving smiling and laughing. Negative facial expressions included the number of facial expressions involving signs of discomfort, unhappy expressions, and crying.
Two researchers independently coded the 10-minute car-play sessions for dependent measures that reflected the children's level of enjoyment and exploration. Interrater and intrarater agreement (>90%) was established before formal data coding using the ratio of agreements/disagreements × 100 to establish a percentage of agreement.
All 3 children learned to drive a modified ROC independently during car-play sessions (Figures 2 and 3). During baseline observations, Child A and Child B required some assistance in learning how to drive independently. Although not measured, it is possible that cognitive delay contributed to requiring assistance to learn how to drive independently. Once provided consistent opportunities to drive during the intervention period, each child transitioned to driving independently 100% of the time. Similar trends emerged for total driving time, increasing from baseline and throughout the intervention. Child A and Child B primarily used the modified ROC for open exploration of the environment. Neither toys nor interactions with others were motivating enough to encourage goal-directed driving.
During the first visit of the baseline period, Child C demonstrated and maintained independent driving 100% of the time. In contrast to the other 2 children, Child C's total driving time increased initially during baseline but decreased throughout the intervention. Child C learned how to drive independently early on, and he very quickly transitioned from open exploration to using the modified ROC to engage in goal-directed driving that involved driving to toys, playing hide-and-go-seek, and other games that required stopping. Thus, it is important to note that his decrease in total driving time throughout the intervention was not a limitation but rather likely reflected his increased use of his driving ability for participation in daily play activities. The transition to goal-directed driving was child-directed. That is, he requested to play a game of “hide-and-seek” with toy animals. Toys were hidden along the hallway and he had to find them. This was a part of his play while passively pushed in a wheelchair, but his use of the modified ROC allowed him to become an active participant in this activity. We interpret this observation as an increase in independence by Child C.
Two of the 3 children demonstrated high frequencies and percentages of positive facial expressions compared with negative facial expressions (Figures 4 and 5). Child B and Child C each demonstrated varying frequencies of positive facial expressions throughout the baseline and intervention. Child B demonstrated 2 negative facial expressions during 1 baseline observation, otherwise all facial expressions were positive. Child C never demonstrated a negative facial expression at any point. Child A, however, demonstrated varying frequencies and percentages of positive and negative facial expressions throughout the study. In general, Child A displayed negative facial expressions more often. The association of this nonintuitive behavior with new onset of mobility experiences may reflect uncertainty about the movement itself, the increasing distance from caregivers, novel visual-perceptual input, and/or active frustration during problem solving related to locomotion.17–19 It is also possible that his young age or delayed cognitive and physical development contributed to his lack of expressing enjoyment during use of the modified ROC.
Individuals have several options for locomotion. The general population often relies on multiple modes of locomotion on a daily basis, including walking, car, train, bicycle, or wheelchair. However, the use of multiple, daily modes of locomotion remains underexplored among children with disabilities. This is likely due to a strong emphasis on the goal of walking. This is despite the fact that walking may be an inefficient form of locomotion for this population to use throughout a typical day that often involves several hours of moving through the environment and interacting with peers.20,21 Another factor is likely connected to the rehabilitation approach that focuses on specialized medical equipment, such as wheelchairs or PMDs, as the primary option for alternative mobility. This type of equipment tends to be expensive and can result in delayed access to independent mobility, because of funding issues, and inaccessible environments.22–26 These issues contribute to a recent increased interest in universally designed and easily adaptable equipment.22,27 In fact, many clinicians and industry leaders agree that significant opportunities exist to improve the type and timing of locomotion for children with disabilities, especially for children with CMNs.6,7,9,14 Exploring new alternatives to specialized medical equipment, such as modified ROCs, will significantly improve the access, self-efficacy, independence, and play opportunities for children of all abilities. Findings from this study highlight the strengths, creative accessibility solutions, and nonmedical PMD options for children with CMNs.
Ride-on cars are 1 option that provides a mainstream PMD that is universally designed, adaptable via modifications, and readily available in the United States. Modification tools and supplies are also widely accessible.9 In addition to providing a level of self-directed mobility and exploration, the modified ROC has the potential to reframe clinicians' and caregivers' perspectives in regard to the strengths and abilities of children with disabilities.28 For example, the staff observed Child C independently interacting with his friends in the gym while he used the modified ROC. Typically, Child C had relied on a caregiver for mobility to engage in play. Child C's modified ROC use demonstrated his ability to engage in open exploration, goal-directed driving, and play-based activities with peers. Changes in activity, as well as, in expectations of the child's abilities, are reflected in other studies.1,6,7
Furthermore, the staff observed Child B looking at the large murals painted on the walls during use of a modified ROC. She also reached out to touch different surfaces while driving past. The staff spontaneously commented on this as a significant behavior. The staff passively pushed Child B in her wheelchair by the murals on a daily basis. Yet, they had never seen her actively look at the murals or reach out to touch the walls. Moreover, the staff also noted a new behavior during driving, vigorous leg kicking. They interpreted kicking as a sign of excitement from use of a modified ROC.
Lastly, a clinician demonstrated cautious enthusiasm about the future requirements on the staff given Child B's emerging driving ability, consistent enjoyment of her mobility experiences, and insistence on continuing to drive during some sessions. The clinician was excited about the new and empowering opportunities provided to Child B for independent mobility through use of a modified ROC. A comment from the clinician was stated plainly, “How can we get her to stop?” This is a simple, yet profound narrative of the potential for modified ROC use to allow Child B to increase her control and engagement in her physical and social world. Previously, caregivers had decided upon such engagement.
Despite the reframing of clinicians' perspectives noted above, there was some concern related to the physical effort involved in transitioning Child B in and out of the modified ROC. An additional concern for the clinicians was the physical exertion required to keep the children within an arm's length, for safety, while each child used a modified ROC. Finally, the clinicians expressed concern in regard to the extra demand for personnel to supervise car-play sessions when a researcher was not present for support. These concerns are certainly valid. However, transitions from 1 form of assistive technology to another are often a typical part of the day for children with disabilities. Moreover, keeping in mind the behaviors of typically developing peers offers an additional potential response to the concerns of use of a modified ROC. That is, a typically developing 19-month-old is independently walking, climbing, running, and using other forms of locomotion to explore the environment. Any means that attempt to provide children with disabilities with a similar level of exploration is worth, at the least, addressing these concerns head on and developing potential solutions. The involvement of local community volunteers to help with transitions and supervision required of modified ROC use is 1 potential solution.
Limitations and Areas for Future Research
There were limitations of the present study. One limitation was the inability to complete the full intervention because of the children experiencing various health complications, unrelated to use of a modified ROC. Furthermore, the staff reported some difficulty transferring the children into the modified ROC with the associated size, weight, and operational needs of the children's ventilators. One clinician reported difficulty when assisting a child with the modified ROC. While driving, the child was low to the ground and required the clinician to bend over to assist with driving and positioning. Finally, because of the single-subject research design that used each child as their own control between baseline and intervention, the level of evidence for the effect of modified ROC use cannot be generalized to all children with CMNs. Future studies can build on these findings to test specific hypotheses about the effect of modified ROC use on children with CMNs, their caregivers, and the community. Despite these limitations, this initial research with children with CMNs is a promising first step.
Future research is warranted to determine how children with CMNs can more directly participate in making engagement-related decisions within their physical and social world. This may include more specific behavioral observation methods that attempt to quantify increased driving ability and how a modified ROC is used to directly interact with peers and others. Future research may focus on developing a modified ROC that encourages mobility, as well as other goals related to the International Classification of Functioning, Disability and Heath, such as body structure and function benefits.29 For example, a new modified ROC prototype developed in the authors' laboratory includes 2 modes: seated and standing. The seated mode operates exactly as the modified ROCs described in the present study. The standing mode, however, includes an activation switch on the seat and a child must stand up in order to activate the modified ROC. This prototype provides a means of independent mobility while simultaneously encouraging physical skills such as pulling oneself up from sit-to-stand, balance, and coordination.
This study extends the literature in 3 key ways. First, it provided a modified ROC to children with CMNs using a single-subject research design. This study provided evidence for the feasibility of modified ROC use for exploration and enjoyment. Children with CMNs have not received empirical attention in the PMD research literature. The authors hope that the current evidence contributes to increased opportunities for self-directed mobility, via PMDs or modified ROCs, for children with CMNs. Second, this study provided a modified ROC to children that were younger than candidates typically considered for a PMD (Child A was 6 months old and Child B was 19 months old). Finally, as researchers in early child development, the authors are rarely surprised by what young children are capable of learning, and how motivated they are to maximize the opportunities provided to them. The children in this study reinforced the importance of never underestimating a child's drive to explore at an early age, regardless of the complexity of their medical needs.
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