Powered mobility interventions for very young children with mobility limitations to aid participation and positive development: the EMPoWER evidence synthesis

Familiarisation

During the familiarisation stage, all the researchers in the team immersed themselves in, and developed a sense of, the data available from the included papers by reading through a sample of the included papers. Three researchers (LTa, JM and NK) further took the lead in becoming familiar with the data in-depth by repeatedly reading through and discussing selected papers. Louise Tanner familiarised herself in-depth with all the included papers, Jennifer McAnuff familiarised herself in-depth with the papers that had used quantitative designs and Niina Kolehmainen familiarised herself in-depth with the papers that had used qualitative or mixed-methods designs.

The framework

The logic model (see Figure 1) was used as the initial framework and the starting point for organising the data from the included studies. First, textual data from the results sections of the included papers (qualitative, quantitative and mixed methods) were reviewed, compared and contrasted against the concepts in the initial framework. Simultaneously, new issues, codes and themes that emerged from the data were generated and used to shape the concepts, to develop new concepts and to reconfigure the framework. All of the following were considered as data: primary participant quotations, primary author narratives, summary concepts and themes, numbers presented in tables or text, and figures.

Several cycles of concept generation were undertaken; each cycle consisted of the following steps:

• Two initial researchers (LTa and NK) independently read and coded textual data from qualitative and mixed-methods papers.

• The same researchers came together to talk through the emerging issues and themes, and relationships between them.

• The same researchers further agreed key concepts and related content.

• One of the initial researchers (LTa) summarised the agreed concepts and their content in memos.

• That researcher (LTa) then systematically sought for any further, related data from the quantitative and mixed-methods papers, and linked these to the memos.

• The memos were then shared with a third researcher (JM), who independently read them, and critiqued them in relation to the included studies and input from the study expert advisors.

• The three researchers finally jointly discussed, reviewed and further modified the emerging concepts.

Coding of higher-quality papers was prioritised over that of the lower-quality papers, and data on similar outcomes were coded on a single round.

The three researchers who were primarily involved in the synthesis had, between them, expertise in the study population and context, movement and mobility interventions, mixed-methods synthesis, framework synthesis, and quantitative systematic review and synthesis methods. In addition, both the modified and emerging concepts were shared with the wider research team at fortnightly discussions, for independent critique and input. The concepts were also brought to an AniMates workshop for exploration, discussion, interpretation and brainstorming, with outcomes fed back to the study team. At the workshop, concepts were presented as brief statements, and the AniMates members were encouraged to discuss, debate and share their own experiences related to the concepts. AniMates produced artwork and brief animations about the key concepts that they were most interested in, which, in turn, fed back into the research team’s thinking about the concepts, and later helped to inform the refined logic model. NVivo version 12 (QSR International, Warrington, UK) and Microsoft Word 2016 (Microsoft Corporation, Redmond, WA, USA) were used to facilitate data management and to maintain a transparent audit trail.

Indexing and charting

Once the key concepts had been agreed, the three researchers (LTa, JM and NK) compared the data of all verbatim outcomes and outcome measures against the key concepts, and ‘indexed’ the studies to the concepts. The indexing was based on a combination of the verbatim outcomes stated by the primary study authors and the outcome measures used. Each outcome was indexed independently; all indexing was completed by at least two researchers, and all uncertainties taken to a third researcher for further review and discussion.

Once all the outcomes were indexed, and in line with the latest Cochrane recommendations for reviews for which there are no consistent effect measures or data across studies, we used vote-counting tables based on direction of effect to summarise and present the numeric/semiquantitative data in relation to each outcome concept. 48 We explored options for graphical summaries (e.g. harvest plots),51 but concluded that it was not possible to meaningfully use these, because few studies provided direct, formal evidence about the effectiveness of the intervention. The reasons for the absence of this evidence were various; it was not possible to disentangle these reasons in a manner that supported the construct of harvest plots. For instance, much of the numeric evidence came from studies with a high risk of confounding and/or small sample sizes, or studies with internally conflicting results, making it difficult to place them within the framework that would be used to support harvest plots. In addition, rather than apply one tool to assess bias for all study designs, which is feasible but often lacks sensitivity, we opted to use tools appropriate to study design. This decision introduced an added layer of complexity that would have led to complicated and unclear plots, thus defeating the objective to clearly and succinctly present the findings of the review. Hence, no harvest plots were produced.

Mapping and interpretation

The concepts and the data relating to each concept were shared with the wider research team throughout, and mapped back on to the logic model. In this, the findings from the mixed-methods synthesis were further triangulated and interpreted with the qualitative synthesis findings, and a new framework (in a form of a refined logic model) agreed for evaluating the effectiveness and cost-effectiveness of powered mobility interventions for children (reported in Integrative synthesis: an integrated logic model to inform the future planning for, and evaluation of, the outcomes of powered mobility for children). To aid the interpretation, we assessed the support that the evidence provided for each of the identified concepts. In this, we acknowledged the methodological challenges related to grading bodies of evidence in mixed-methods syntheses, while also appreciating the importance of providing some summary indication of the level of support that the evidence from the present review provides for each of the concepts (for a more detailed discussion, see Appendix 4). In line with the overall logical methodological stance underpinning the mixed-methods synthesis, we adopted a pragmatic approach to grading whereby we engaged with the broad concept of assessing the certainty of a body of evidence52 through a practical set of published mixed-methods-relevant criteria. Specifically, we used the following rating system to provide an overall assessment of the level of support for each concept:

• strong support – converging evidence from a range of designs; no major gaps

• moderate support – converging evidence from a range of designs; clear gaps in data or theory

• low support – converging evidence from a limited pool of designs; clear gaps in data

• very low support – converging evidence primarily from either qualitative or quantitative designs only; substantial gaps in data

• inconsistent support – no converging evidence.

This assessment was also informed by the assessment of a range of mixed-methods-specific criteria (Table 4) and supplemented with a criterion for publication bias.

Number of studies included

The literature searches of bibliographic databases identified 5948 potentially relevant titles and abstracts, of which 221 were included in full-text screening. A further 16 relevant references were identified from reference lists, 30 were identified from the grey literature and 50 were recommended by expert advisors, resulting in a total of 317 references for full-text screening. Of these, 89 references (covering 89 studies) met the inclusion criteria, and 228 references were excluded. A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow chart summarising the study selection process is presented in Figure 4.

FIGURE 4.

The PRISMA flow chart of included and excluded studies.

The list of included studies and associated references is reported in Appendix 5. Reasons for exclusion for a sample of excluded studies are described in Appendix 6, Table 40.

Characteristics of included studies

A full breakdown of included study characteristics is presented in Appendix 7, Table 41. The included studies comprised two RCTs, 18 qualitative studies, three mixed-methods studies and 66 studies of other designs, such as observational and non-randomised trials. Nearly one-third (n = 24) of the studies were single-subject studies, which often consisted of case reports and clinical cases.

The included studies involved an estimated total of 2070 participants. The sample sizes ranged from 1 to 538 participants in individual studies, with a median of five participants. Fourteen studies (16%) had a sample size of ≥ 30 participants, whereas 24 (27%) had only a single participant. One study did not report the number of participants included in the study. 54 The largest study was in children and young people with spina bifida, and reported data for two age groups: children aged 0–15 years (n = 323) and young people aged 16–25 years (n = 215). 55

In terms of the reporting of data specifically for the two age groups of interest, 35 (39%) studies reported data for children aged < 5 years, and 25 (28%) reported data on children aged ≥ 5 years. Twenty-one studies (24%) reported data for children across the age groups; of these, 10 (11% of all included studies) reported separate data for children aged < 5 and ≥ 5 years. The age range was unclear in eight (9%) studies.

Most of the included studies (n = 46) described multiple diagnoses among the characteristics of their participants. One-quarter (n = 22) included solely children with cerebral palsy, three (3%) included solely children with Down syndrome and three (3%) included solely children with spina bifida. About one-third (n = 28) of the studies explicitly stated that they included children with learning/intellectual disabilities; however, because of the lack of standardised reporting, there is uncertainty about the actual number of studies.

Included studies were published between 1971 and 2019. Twelve (13%) were published before 2000, and 58 (65%) from 2010 onwards. Studies were conducted in the USA (n = 46; 52%), the UK (n = 11; 12%), Sweden (n = 6; 7%), Taiwan (n = 4; 4%), Canada (n = 5; 6%), Italy (n = 3; 3%), Japan (n = 3; 3%), Spain (n = 2; 2%) and France, Israel, Australia, Singapore, the Republic of Korea, South Africa, Scotland, Northern Ireland and the Republic of Ireland (n = 1; 1% each).

Powered mobility equipment

The powered mobility equipment assessed in the included studies clustered around five broad types. A summary of their key features is provided in Table 5. The main differences between the types related to the equipment size, appearance and controls. Most, but not all, equipment had been used across age groups, disability populations and settings. We found examples of matching the equipment to a child’s development level and desired outcomes, but no single agreed set of principles or prescription criteria emerged.

The qualitative thematic synthesis specifically set out to develop an overview of the different types of powered mobility equipment and their conceptualisation, purposes and uses, which, for simplicity, are reported in the following sections and expanded on in Table 5.

Ride-on toys

These interventions are typically battery-operated toys that have been modified for use by a child with a disability. Modifications can include larger wheels, protective bumpers, adapted seating, customised controls, and so on (Figure 5). Although these interventions can vary greatly, depending on the specific needs of the child, they are typically used to give children with mobility limitations a chance to play, socialise and have active control over their own exploration, which, in turn, is thought to facilitate developmental gains. The devices are not commercially available in their adapted form, but can be accessed through programmes such as GoBabyGo. 56,57 Although these devices are relatively simple, the universality of their toy-based design makes them ideal for introducing powered mobility at an early age. 58

FIGURE 5.

Example of adapted ride-on toy. Reproduced with permission from Julie Laurence (2020, personal communication).

Reproduced with permission from Julie Laurence (2020, personal communication)

Starter powered mobility devices

Starter powered mobility devices are explicitly designed for young disabled children, with controls that resemble those on a larger powered wheelchair. A number of different starter powered mobility devices are now available in the UK, including the Wizzybug (Designability, Bath, UK) (Figure 6), TinyTrax (TinyTrax, Bristol, UK) and Bugzi (MERU, Epsom, UK). Unlike adapted ride-on toys, starter powered mobility devices are registered medical devices and, although customisable, have standardised designs. Similarly to ride-on toys, these interventions are designed to enable children with mobility limitations to experience and enjoy independent mobility, often for the first time. They may also be used as an introduction to powered mobility and as a wheelchair training tool. They are not routinely used as a child’s primary mobility aid, but can be purchased privately or accessed through loan schemes and certain health services. These types of devices are often classed and described as powered wheelchairs, but we believe that they are conceptualised differently to more traditional powered wheelchairs because of their focus on child-centred design.

FIGURE 6.

Example of starter powered mobility device. Reproduced with permission from Designability (Bath, UK).

Reproduced with permission from Designability (Bath, UK).

Powered wheelchairs

Powered wheelchairs for very young children are sometimes scaled-down versions of full-size powered wheelchairs, but can also be specifically designed for children. They are commonly designed to ‘grow’ with the child, and thus can be adapted to meet each child’s needs over time. Therefore, these devices can be used beyond the age of 5 years; weight limit typically defines the upper limit for use, rather than age. They offer more options for support, specialised seating and control systems than starter powered devices, but are usually larger, faster and heavier. Existing models include the Koala Miniflex (Permobil AB, Timrå, Sweden) (Figure 7) and Zippie Salsa M2 (Sunrise Medical Ltd, Dudley, UK). These are typically designed for indoor–outdoor use [i.e. electrically powered indoor–outdoor chairs (EPIOCs)], but some models may also be specifically designed for either indoor or outdoor use.

FIGURE 7.

Example of a powered wheelchair. Reproduced with permission from Permobil AB.

Reproduced with permission from Permobil AB.

Powered mobility for very young children

There were many similarities in terms of the intervention elements, outcomes and feasibility factors across the age groups, particularly in the prioritisation of autonomy and independence, participation, and social interaction as key outcomes. For example, two studies59,60 found that parents’ primary goals for powered mobility included promotion of independence, autonomy and social inclusion, all of which were noted across studies with older children as well.

Owing to their small sizes and playful, fun designs, ride-on toys60,61 and starter powered mobility devices62 were more common among children aged < 5 years, offering a developmentally appropriate and child-centred approach to introducing powered mobility to very young children. Ride-on toys, in particular, offer a relatively inexpensive and fun way to introduce powered mobility and enable movement, participation, social interaction and independence. 58 From the qualitative studies, utilising developmentally appropriate devices and training was found to be important to ensure that children and families are engaged in the process.

Starter powered mobility devices are not typically designed for children aged > 5 years (because of the child’s size and weight); thus, powered wheelchairs became the predominant powered mobility intervention found in the older age groups.

Powered mobility training

Although some of the included studies reported training elements in detail, 9 of the 27 studies (33%) that included training lacked at least some of the basic information, including information about who delivered the training, how many sessions were provided and how long the sessions lasted (Table 6 presents a summary of the reported training elements). Based on the studies from which information about training was available, the number of sessions ranged from 1 to 64 per participant (estimated median 16 sessions; estimated interquartile range 8–21 sessions), and the session length varied vastly depending on what was described as a session. For example, in one study67 a ‘trial’ lasted for 50 seconds, whereas, in another,74 a session lasted for 30–90 minutes. All studies reported the child as the recipient of the intervention; none reported targeting parents, carers or other people around the child. The training was mainly reported as having been delivered by a researcher and/or a therapy professional, at times with the involvement of parents or carers. Two studies reported using a simulator to deliver the training, and two involved teaching staff in the delivery.

In terms of the nature of the training, the techniques described in the papers mainly targeted a child’s skills in driving the powered mobility equipment. From the included papers, five categories of training techniques were identified: (1) graded task, (2) instruction and guidance, (3) feedback, (4) prompts and driving goals and (5) using motivators (Table 7). There was evidence of all the techniques being used across the age groups, from as young as 7 months of age. There was also evidence of the delivery of the techniques through virtual reality or computer simulation scenarios for children as young as 3 years of age.

Movement and mobility

Movement and mobility was the most frequently described outcome of powered mobility, supported by both the textual and numeric data. Descriptions of movement and mobility related to two related dimensions: (1) play-related movement as an integral part of a movement-based activity (e.g. physical play and games) or as an end point itself (e.g. the sensation of spinning) and (2) destination-focused mobility, whereby movement is a means of transfer to a place or a situation.

Learning to drive the powered mobility equipment

In a chain of powered mobility outcomes, movement and mobility were often implied to emerge after an initial process of learning to acquire the ability to drive powered mobility. Often, although not always, this was learning in a controlled environment before everyday use. The form of the learning process was described differently in different papers, depending on the trainer’s or researcher’s approach to learning. Some studies emphasised emerging skill acquisition through self-directed use (especially those using self-directed exploration; see Powered mobility training), whereas others focused on structured development of skills. Several papers also explicitly drew on both approaches as ways to achieve learning:

Learning to use powered mobility was viewed by all participants as an individualized, cyclical process that occurred over time.

Researcher, Kenyon et al. 61

A lot of children when they first learn to move . . . first need to learn to move and what it is about to move and explore and then driving is much later (. . .).

Professional, Durkin109

The descriptions of the learning process and everyday use could not necessarily be separated from one another by how the activity looked from outside. This was especially true of exploratory play, which was described as both learning and play-related everyday use. Which of these it was viewed to be depended on the purpose of the activity as intended by adults, the child’s developmental stage, the child’s powered mobility competence and preference, and the trainer’s approach to skill acquisition. Although it was common for powered mobility professionals and researchers to conceptualise the initial learning process as a discrete stage, children themselves described continued learning as part of their everyday use of the equipment:

If you crash it tells you how much room you need – how much careful you have to be because it is not that big or it is big.

Child, Durkin109

In terms of differences in learning outcomes by age, there were no differences in the included studies. There was some suggestion that structured learning, targeted through specific techniques, may be particularly important for children with significant cognitive impairments. 74,117 These same papers also demonstrated that it was feasible for children with profound cognitive impairments with added visual impairments and very limited body movements to learn to use powered mobility. All included studies that reported on learning outcomes described positive results, with one study also noting negative results (Table 12). 72 Therefore, there was no scope for assessing the efficacy of specific approaches to supporting children to use powered mobility.

The assessment of certainty for the concept indicated inconsistent support for learning to drive powered mobility as a powered mobility intervention outcome (Table 13). A large number of included papers had investigated this outcome, including studies of different designs (although there was no formal evidence of effectiveness). The inconsistent overall rating stemmed largely from the two views of the place of learning in the powered mobility intervention causal chain, and the inconsistent operationalisation of the concept as a possible outcome.

Participation, play and social interactions

Participation, play and social interactions formed a prominent cluster of interlinked outcomes in both the textual and numeric data. These outcomes were described as consequences of powered mobility-enabled movement and mobility. Their core focus was children living everyday lives across contexts, including engagement with friends and social interactions, exploration and play, physical activity, and pushing the boundaries of what the children could do and were allowed to do. In the textual data, descriptions of these outcomes were present in the voices across children, parents, professionals and researchers:

I can go shopping (. . .) I can play basketball at my Saturday club all by myself.

Child, Sharma and Morrison98

If she didn’t have the power chair then she’d have to rely on the teacher aide and then the teacher aide’s with her constantly. So that kind of interferes with socialization.

Parent (mother), Wiart et al. 102

(. . .) powered mobility brought major changes in play that was marked by an increase in active play (. . .)

Researcher, Sonday and Gretschel101

She plays hide and seek or sometimes the children runs and she tries to catch them or they sometimes hop onto the back and she gives them a drive.

Parent, Sonday and Gretschel101

[powered mobility allowed] participation in age-appropriate activities within their peer group such as playing in the school’s sports team, shopping, or going out with friends.

Professionals, Pituch et al. 100

(. . .) the importance of participation and how each child’s mobility technology mediated participation, daily activity and interaction with siblings, peers and adults.

Researcher, Feldner et al. 60

In the numeric data, most studies indicated that powered mobility had a positive impact on some of the component skills related to play and social interactions, especially social function (Table 14). There were limited data on the wider concepts of actual everyday participation, play and friendships. We explored, but found little to suggest, substantial variation by age. Although the nature of the activities the children engaged in varied, this variation appeared to be related to their developmental level, powered mobility competence, and environmental factors, rather than biological age.

The assessment of certainty for the concept indicated overall moderate support for participation, play and social interactions as a powered mobility intervention outcome (Table 15). The concept was theoretically sound, including the hypothesised mechanisms linking it to the intervention, and underpinned by data from various designs. However, the overall level was brought down from ‘strong’ by limitations in the numeric data, which focused mainly on the skills underpinning participation, as opposed to the actual doing of it (the dimension emphasised as important in the textual data).

Self-care

Self-care emerged initially only from the numeric data, with related textual data identified after a subsequent targeted search; overall data on the concept was limited. In textual data, descriptions of self-care outcomes were brief comments referring to increased ability to undertake basic tasks related to looking after oneself (e.g. eating or drinking), and to decreased need for caregiver assistance. These were in the voices of children, parents and researchers; we found no comments about self-care outcomes from professionals:

(. . .) without it, I could do almost nothing. (. . .) Even eat by myself, I cannot without sitting in my chair.

Child, Pituch et al. 100

(. . .) who would have thought that you could have gotten up and got water [to drink] on your all-terrain vehicle?

Parent, Feldner et al. 60

In turn, [powered mobility] decreased the level of assistance required from caregivers and the need to wait for others’ availability.

Researcher, Pituch et al. 100

In the numeric data, self-care outcomes were assessed mainly in very young children, with all studies using the PEDI (Table 16). The results were mixed, but reported an overall consistent message that, although powered mobility may not directly change children’s skills in self-care, it may reduce the need for caregiver assistance by enabling a child’s sense of independence and control.

The assessment of certainty for the concept indicated overall low support for self-care as a powered mobility intervention outcome (Table 17); this reflected the overall limited data available for this concept. Furthermore, owing to the limited data, we were not able to explore variation by age.

Autonomy, independence, choice and control, and freedom

Autonomy, independence, choice and control, and freedom were a broad cluster of concepts that emerged primarily from the textual data, and were repeatedly represented in the voices across children, parents, professionals and researchers. They were often articulated and framed through specific incidents of movement, mobility, participation and self-care that the different stakeholders attended to as observable manifestations of the abstract, desirable states of being autonomous, independent and free, and having choices, controls and self-expression:

Going through the door, getting outside. That’s very cool – I mean, talk about freedom (. . .) that is an entrance to his own world. There are no limitations on that.

Parent, Durkin109

It’s given her far more freedom, independence. To go out with friends, she doesn’t need someone.

Parent, Evans et al. 59

Learning to use a power mobility device also altered how children were able to express themselves.

Researcher, Kenyon et al. 61

Analysis of interview responses revealed that nine young people and their families (50%) mentioned increased independence as a result of the EPIOC.

Researcher, Evans et al. 59

We explored the data for differences between the age groups. In the textual data, there was variation in the nature of activities and decisions in which the children expressed their autonomy, freedom, choice and control, and independence; this nature appeared to relate to the children’s developmental stage. Yet, the descriptions of the actual abstract concepts remained consistent across age groups. One specific, repeated example of this was children, across ages, using powered mobility to express their autonomy, choice and control by defying demands and expressing anger or disagreement. This included, for example, deliberately driving away or crashing into objects or people, and was often, but not always, interpreted by parents, professionals and researchers as positive and as developmentally appropriate self-expression:

I think the best picture I have of him is driving away from me. I get tears every time I see it because he’s on his own and he’s able to get somewhere by himself without any help.

Parent, Wiart et al. 102

So it’s quite interesting to see there is a personality now whereas before, you didn’t realize was quite a little naughty streak and someone who actually wanted to go quite fast.

Professional (occupational therapist), Sonday and Gretschel101

Running over people’s toes, hitting walls, (. . .) purposely being naughty because (it) is developmentally appropriate to be . . . naughty (. . .).

Professional, Kenyon et al. 61

Numeric data related to this concept cluster focused mainly on two aspects within the broad cluster: (1) children’s increased self-initiation (as a manifestation of control, choice and independence) and (2) reduced caregiver assistance (as a manifestation of independence) (Table 18). Of these, the latter overlapped with the self-care data.

The assessment of certainty for the concept indicated overall low support for autonomy, independence, choice and control, and freedom as powered mobility intervention outcomes (Table 19). Although the textual evidence was rich and converging, the theoretical focus and linking of the concepts was limited, as was the scope of the numeric data.

Psychological outcomes: sense of achievement, confidence, motivation and cognitive outcomes

Psychological outcomes of powered mobility for children were reported in relation to sense of achievement; a child’s confidence and beliefs about capabilities, motivation and identity; and cognitive outcomes including alertness, language, communication and understanding. In textual data, descriptions of these concepts were present in the voices of parents, professionals and researchers, but not in the voices of the children themselves. The descriptions for sense of achievement, confidence and motivation were easier to find than descriptions of cognitive outcomes:

And she realized then: ‘I thought initially I can’t do it, but I tried and I can’.

Parent, Sonday and Gretschel101

[Researcher:] The family noted pride and self-efficacy (. . .) Teresa [parent] narrated, ‘He had just driven and a bunch of people were telling him how amazing he was and that was his response. That smile was just, like, proud.’ When Sam [child] described the photo, he narrated, ‘I drive. In the gym, I’m happy’.

Researcher, parent and child, Kenyon et al. 60

Observed effects judged to be the result of the training included increased wakefulness and alertness, (. . .) John sometimes arrived at the training sessions asleep or acting very tired, but as he was being positioned in the powered wheelchair, he would straighten up and look around.

Researcher, Nilsson and Nyberg74

The numeric data for achievement, motivation and confidence suggested a consistently positive impact across age groups (Table 20). The achievement data were from measures that require families to uniquely generate items, limiting the interpretation of this finding. The motivation data were based on mastery motivation. The cognitive outcome measurement emphasised language and communication skills, and the data suggested a positive impact (Table 21). There were insufficient data to draw conclusions about differences in responses in the psychological outcomes based on age.

The assessment of certainty for the concept indicated overall low support for achievement, motivation and confidence as powered mobility intervention outcomes (Table 22), and indicated moderate support for cognitive outcomes as an outcome (Table 23). For achievement, motivation and confidence, the overall rating was low, primarily because of the limited data and the lack of a clear theory about linking these outcomes to powered mobility interventions in the included studies. Although the data were assessed as being more supportive of the cognitive outcomes, it is worth emphasising that there was no direct, high-quality evidence of effectiveness.

Safety outcomes: emotional consequences, accidents and pain

The included studies did not include straightforward negative safety outcomes. Instead, the information relevant to safety outcomes was more nuanced, akin to considerations about benefits and risks of powered mobility interventions. The data clustered around two themes: (1) emotional consequences and (2) accidents and pain.

‘Fit’ and opportunities for everyday use

The concept of ‘fit’ was explicitly labelled and articulated in only one qualitative paper;99 others implied this concept and illustrated it in examples:

Using an EPIOC was an experience which required active involvement from [the child] as they worked to balance, or achieve an adequate fit, between their own abilities, desires and needs; those of their parents and friends; the demands of the environment; and the capabilities and limitations of the EPIOC itself.

Researcher, Gudgeon and Kirk99

As a synthesised concept across the included data, fit can be described as a coming-together of three elements: (1) the child, (2) the equipment and (3) the child’s social, physical and policy environments. Fit is dynamic in that it changes with any of the three elements, and it is a spectrum, that is there are degrees of better and worse fit. Achieving a sufficiently good fit was repeatedly described as a necessary condition for a child’s use of powered mobility, and as something that a child needed to seek to constantly negotiate:

It depends, say err if it’s like a test and there’s a massive space I’ll probably go in (to the classroom in the equipment) (. . .) but say it’s a small one I’ll just maybe like drive into the doorway and leave it there.

Child, Gudgeon and Kirk99

Restrictions in fit were reported to translate to suboptimal powered mobility use and outcomes, and an increased likelihood of negative emotional consequences. In contrast, a good fit had the potential to transform a child’s movement, mobility and participation:

He just sailed on into the camp meeting area where registration was, and he was going around (. . .) chatting with everybody. I was just blown away, because I had never, ever understood that David had the capacity nor would have the opportunity to do something like that.

Parent, Sonday and Gretschel101

Good fit required psychological, social and physical compatibility. The psychological compatibility was described in terms of the child’s self-identity; the social compatibility was described in terms of the way others viewed the child. In this, using powered mobility in everyday life required both the child and those around the child to develop a new sense of what the child is like and what the child can do and actually does in everyday life. From this reframing, a new ‘integrated self’ of the child emerged, both in the child’s own mind and in the eyes of others:

The children perceived that the ‘self’ that existed before they had (the powered mobility) did not adequately fit the environment, and hence they were prevented from fulfilling their needs and desires. In contrast, using (powered mobility) was seen as allowing a new self to emerge, one that integrated their body and (powered mobility).

Researcher, Gudgeon and Kirk99

It (powered wheelchair) changed his peers’ attitudes toward him because they saw that he could do something on his own and that he could actually think on his own.

Parent, Wiart et al. 102

You start to see your child in a different light and they start to see themselves in that light (. . .).

Parent, Kenyon et al. 61

Furthermore, this change in the perceptions about the child was often described to be a catalyst for more opportunities for the child to use the powered mobility and to actualise further positive outcomes in terms of participation and independence:

Learning to use a power mobility device often changed the way that the participants and others perceived a child (. . .) Such changes in how a child was perceived often led to increased opportunities for social interaction and participation and expanded the child’s growing sense of independence and responsibility.

Researcher Kenyon et al. 61

He can go out and wander around the playground with the kids, do everything within his ability that the other kids do, and they don’t look at him as, ‘Oh, God, we have to push the wheelchair’. (. . .) They look at him as a whole person.

Parent (mother), Wiart et al. 102

Numeric data on fit and opportunities were very limited (Table 30), and an overall impression from the data was that fit was a concept emerging from the child and parent narratives, but was less well recognised in professional and researcher narratives. In professional narratives, the focus of fit was often limited to adapting the powered mobility equipment set-up to the point where the child was able to drive it, with limited evidence of broader consideration of fit in the wider sense of compatibility between the child, the equipment and their everyday environment:

Several participants described the individualized nature of equipment needs as a ‘Catch-22’ in which proper equipment and set-up were necessary to enable a child to use a power mobility device, but a child needed to actually use the power mobility device to discover what equipment and set-up were needed (. . .).

Researcher, Kenyon et al. 61

Both the numeric and textual data suggested that it was possible to achieve a good fit in very young children, as well as across age groups, but that this required careful consideration of a child’s wider social and physical environment. The evidence related to these is further summarised in the next two sections on social and physical environment. The assessment of certainty for the concept indicated overall low support for ‘fit’ and opportunities for everyday use (Table 31); the key limitations were the small pool of data and the lack of theory integration.

Social environment: the people and policies around the child

Previous sections have already illustrated ways in which people and policies around the child can shape their powered mobility use and outcomes (e.g. see concepts in Emotional consequences of powered mobility for the parent and child and ‘Fit’ and opportunities for everyday use). As a specific concept, social environment mainly emerged from, and was supported by, textual data (Table 32 presents a summary of the quantitative findings).

Broadly, the social environment concept covered two dimensions. The first dimension was the people and social structures (informal policies, rules, practices) as shapers of children’s use of powered mobility, their user experiences, and the related outcomes. These influences could be negative or positive:

The power that adults have to override the children’s autonomy by disabling their powered mobility equipment – switching the equipment off or by turning down the speed – was clear (. . .).

Researcher, Durkin109

Rocky explained how another child had caused a crash: ‘Sometimes people touch (the EPIOC) ‘cos there was somebody called Oscar and he drove my chair . . . once he made me go head first into the wall, head forwards (. . .)’.

Researcher and child, Gudgeon and Kirk99

Due to certain school policies where children are left in wheelchairs all day long, she is bound to experience pain and discomfort and yes, she does complain of it sometimes.

Parent, Evans et al. 59

The second dimension was the reciprocal impact of children’s powered mobility use on other people and social structures. Common examples were the perceptions that a child’s powered mobility use can make things easier for others, and has the power to fundamentally change how children with disabilities are perceived:

The children also perceived that these gains in independence were beneficial in reducing the need for others to help them. In fact Farrah indicated that this was her main reason for using her EPIOC (. . .).

Researcher, Gudgeon and Kirk99

His mother perceived the identification of her family’s needs and the opportunity of her community members to assist in meeting these needs as a positive step toward a better understanding of disability issues and a step toward interdependence in her community.

Researcher, Wiart et al. 102

The assessment of certainty for the concept indicated overall very low support for social environment (Table 33), due to limitations in the volume and diversity of data, and lack of clear links to theory.

Physical environment

Similarly to social environment, the concept of physical environment had very limited dedicated data and has already been illustrated in previous sections (e.g. see the concepts Accidents and pain and ‘Fit’ and opportunities for everyday use); furthermore, the data underpinning it were largely textual (Table 34).

The features of the physical environment described in the data included access, built spaces and other built features (especially kerbs and potholes), natural environment and the impact of weather (especially issues related to ice and mud), and road safety and traffic. The data originated primarily from children’s and parents’ voices, and focused largely (although not exclusively) on descriptions of physical environment as a barrier.

The assessment of certainty for the concept indicated overall very low support for physical environment (Table 35) due to limitations in the volume and diversity of data, and lack of clear links to theory.

Children’s and parents’ emotional journeys towards acceptance of powered mobility

The experiences of children and families concerning the proposal and acceptance of powered mobility varied greatly, on a broad spectrum, from very positive to very negative. 60,61,69,100,102,103,116,134 One mother of a boy with cerebral palsy described seeing her son use powered mobility for the first time at age 5 years as the ‘best and worst day of her life’ owing to the contrast between the child’s joy and her own beliefs about powered mobility as a symbol of disability. 61 Some parents expressed reluctance in seeking and accepting powered mobility;69,103 conversely, physiotherapists could also be a source of hesitation. 102 The children in the studies had a wide range of diagnoses and mobility needs; some children had deteriorating life-limiting conditions, whereas others did not, which created different contexts towards acceptance of powered mobility. For some parents, the transition to powered mobility was traumatic, uncertain or difficult to accept,61,102,103,134 and prompted an often emotional re-evaluation of their expectations and hopes for their child:61,100,102,134

I was still thinking, ‘Okay, maybe one of these days, he’ll get up and he’ll walk, and we don’t need this.’ Then going into a power wheelchair, it was kind of a realization that ‘No, he isn’t going to be able to walk,’ (. . .) So it was a little tough.

Parent of a child with cerebral palsy or myelomeningocele, aged 10–18 years, powered wheelchair users, Wiart et al. 102 Specific characteristics of the individual being quoted are not reported in the paper

Some parents held on to the hope that their child would one day walk, and therefore saw powered mobility as a ‘last resort’;61,102 thus, the offer or provision of powered mobility symbolised a significant change in their life and a powerful symbol of loss or change. 61,100,102 This appeared to be particularly relevant for children with higher skills and abilities, for instance one parent of a child with Duchenne muscular dystrophy stated that their child’s transition to powered mobility at age 7 years was a negative symbol of the child’s reduced independence:61

He . . . caught on (quickly to driving a power wheelchair but) . . . for him, I think (driving a power wheelchair is) a degenerative ability . . . I think his obstacles (to using a power mobility device) are (going to) come.

Father of a 13-year-old male with Duchenne muscular dystrophy, powered mobility device user from age 7 years, Kenyon et al. 61

Interestingly, one parent described using a powered ride-on toy to avoid or postpone their child needing a wheelchair. 116 The process of adjustment to powered mobility can be a source of conflict between parents and therapists/clinicians, resulting from different levels of knowledge and expectations for the child. 102,109,133 The emotional journey for the child and family is an important part of the provision process and should be seen as a key factor for (either a facilitator of or barrier to) intervention effectiveness, particularly for children who need prolonged support and facilitation to get the most out of their powered mobility:

Viewpoints of parents and therapists often varied (. . .) One informant sarcastically told the interviewer: ‘I think that they’re (the footstraps are) useless . . . But then I am not a professional. All I am is her mother and all I have been doing is just watching her and helping her at night . . .

Berry et al. 133 (Parents of children with cerebral palsy, myelomeningocele or other diagnosis, aged 5–23 years, powered wheelchair users)

Children need emotional and practical support through this journey, as the transition to powered mobility can be stressful and full of uncertainty. This requires support from parents and other institutions (i.e. school, social services) to promote confidence and engagement with the learning and provision process, and to let children know that their opinion is valid:

Parent 4 noted that the process of learning powered mobility was very emotional for her child: ‘how are people going to treat me? . . . Will I be able to do it? . . . What if I get stuck?’ There are so many (emotions).

Parent of 7-year-old male with cerebral palsy, powered mobility device user from age 3 years, Berry et al. 133

The development of skills helps children to take agency over the process and motivates continued engagement and ownership. 61,74,105,109 Likewise, parental observation of the child’s development and achievement is emotionally rewarding and vindicates the decision to progress with powered mobility:69,105

I’ve always been very hesitant about a motorised wheelchair for lots of different reasons, but seeing her do this and that she is able to do it, I think has changed my view of the whole thing.

Mother of 6-year-old female with spastic diplegia involving both spasticity and dystonia, smart-wheelchair user69

This emotionally charged experience requires early support from services to help families make the transition. This can be facilitated by early provision of information about what powered mobility may offer, and early education, assessment and training for parents/children to promote better understanding of each child’s long-term potential through powered mobility. 58,102,133

Experiential learning and play to support a continuum of powered mobility skill development

The learning of powered mobility is not initially about learning to drive; there is an important distinction between the process of learning movement and driving a powered mobility device. Children must first understand the concept of movement, then the relationship between their movement and the movement of their device. 61,62,109 They can then begin to understand the relationship between their movement and the space/environment around them:

The developmental learning process now needs to be viewed as a continuum from understanding the concept of movement, understanding how the machine works, through to using the machine as part of attaining a desired lifestyle.

Durkin109 [Children with cerebral palsy or hypoxic brain damage (and their clinicians/therapists), aged 5–12 years, powered wheelchair users]

The learning process in and of itself can have benefits for children, such as encouraging response to stimuli and developing a sense of cause/effect. 58,62,69,74,101,105,117 The act of practising and training helps children to refine their skills and begin to integrate the device into their own sense of movement and space:

After a few sessions she started to look intensely at her hand when it was placed on the joystick. Both children seemed to react more to external stimuli and to show more interest in persons and objects in their vicinity.

Researcher observations of children with profound cognitive disabilities, aged 4–5 years, powered wheelchair users, Nilsson and Nyberg74

Experiential learning is key to developing mobility skills, and requires real-world use of aids and time to develop skills. 61,62,100,105,109,117 Bumping, crashing and receiving feedback on movement can help children to understand the relationship between their movement and the world around them. 109 During the introduction of powered mobility and training, the process should be framed as an opportunity for children to play, explore and engage in fun activities at their own pace. 61,69,101,109 Adult conceptualisations of movement should be avoided, and training should not be focused on teaching children how to ‘drive’. 109 As noted by Durkin,109 very young children benefit from powered mobility interventions that are framed as toys and opportunities to play, thus highlighting the importance of chronologically and developmentally age-appropriate interventions:

When the powered wheelchair appearance was changed by producing a front facade of a well-known children’s character the parents responded very positively which encouraged the children (. . .) As the 12- to 18-month-old children approached 18 months they became more reluctant to enter the powered wheelchair for play.

Durkin109 [Children with cerebral palsy or hypoxic brain damage (and their clinicians/therapists), aged 5–12 years, powered wheelchair users]

Although continuums of skill development are specific to each child, children tend to follow a trajectory of, first, understanding cause and effect and the concept of movement; second, developing purposeful movement; third, gaining basic control of powered mobility (i.e. directional movement and stopping); fourth, developing spatial awareness; and, finally, utilising powered mobility to facilitate lifestyle goals. 61,62,109 It is important that, as part of a powered mobility intervention, the development of mobility and driving skills is started at a very early stage of the process, for instance as a preparatory stage. The development of controlled, safe movement was described as the first stage towards promoting long-term independence and autonomy:

Spinning and experiencing the joy of movement were identified as common first steps. Understanding cause and effect, developing a sense of purposeful movement, driving in the real world, and responding to multiple attentional demands were identified as some of the quintessential points in learning.

Kenyon et al. 61 (Parents and therapists of children with arthrogryposis multiplex congenita, acquired brain injury, cerebral palsy or Duchenne muscular dystrophy; the mean age at powered mobility device use commencement was 3 years)

An important omission is the evaluation of young children’s readiness for powered mobility; a standard approach to assessing readiness for powered mobility in young children is not apparent from the existing qualitative evidence.

The importance of parent and therapist time and support to realise the full potential of powered mobility

The powered mobility needs and abilities of each child are highly variable, and it can take time for them to be revealed. 58,61,62,74,101,109,110,133 Early promotion of skill development and individually tailored interventions can help children to achieve their full potential. It is therefore important that children are given adequate time to learn and practise powered mobility:

We have to give of our time, believe in their ability and really see that this is happening for that person. If we don’t put this effort into the kids they will quit driving eventually. Abilities may therefore be lost (. . .).

Jonasson110 [Parents and therapists of ‘severely disabled’ children, age not specified, smart powered wheelchair users (AKKA-board)]

The relationship between a child’s abilities, impairments and potential to benefit from powered mobility may not be apparent until after powered mobility has already been introduced. 58,74,109 Therefore, powered mobility loan or trial schemes could help to identify children who may benefit from powered mobility, but who would have otherwise been overlooked:

John was, in the beginning, assessed as having a better potential for driving than Anna. The results, however, clearly showed us how wrong this assessment had been. It was Anna who had the greater potential, but that potential was masked by her restricted ability to move her arms and hands.

Researcher observations of children with profound cognitive disabilities, aged 4–5 years, powered wheelchair users, Nilsson and Nyberg74

Because of the high degree of variance between children in terms of their chronological and developmental age, abilities, needs and potential to benefit, ‘there’s no recipe’61 to guide provision; therefore, individualised approaches to assessment, provision and training are required. 61,100,133 This, in turn, requires a commitment of time and co-operation from clinicians/therapists, parents and other key stakeholders to ensure that the intervention meets the unique needs of each child:

I think (that) some people strive to have (a recipe to teach children how to use a power mobility device), but (a recipe) doesn’t work . . . (the recipe is) . . . whatever works (for each) individual . . . Parents and therapists recognized the importance of involving all stakeholders (. . .).

Occupational therapist of children with arthrogryposis multiplex congenita, acquired brain injury, cerebral palsy or Duchenne muscular dystrophy (mean age at powered mobility device use commencement was 3 years), Kenyon et al. 61

Strict eligibility criteria may be counterproductive, and clinicians/therapists should instead be given adequate time to conceptualise the intervention as a means to promote a better lifestyle for the child and their family, rather than solely as a means to mobilise the child:99,109

Clinicians should be given time to assess the children and problem-solve in a more holistic way, which is led from the perspective of giving the child and family a ‘lifestyle’ rather than just a piece of mobility equipment.

Durkin109 [Children with cerebral palsy or hypoxic brain damage (and their clinicians/therapists), aged 5–12 years, powered wheelchair users]

Both clinicians and parents can act as facilitators of a child’s development of mobility and independence, rather than as directors or supervisors. Durkin109 defined this role as being a ‘responsive partner’; children should be allowed to direct their exploration and skill development, with careful and subtle encouragement/support from responsive partners, to allow children to develop at their own pace and under their own volition:

The children gave clear messages about how they liked to learn the skills for powered mobility; the importance of exploring and being able to do things on their own; not being watched; learning in a ‘cool’ way; taking the lead in how they played and learnt.

Durkin109 [Children with cerebral palsy or hypoxic brain damage(and their clinicians/therapists), aged 5–12 years, powered wheelchair users]

The support and advocacy of institutions around the child is key to ensuring that the intervention can be optimised. For instance, schools can play an important role in supporting children to use and learn powered mobility. 61,62,99,100,109 Without this support, sceptical or risk-averse institutions can detrimentally affect the powered mobility intervention, and thus affect a child’s potential. To maximise the effectiveness of interventions, physical and attitudinal adaptation may be required, and influential institutions need to be educated about safety and potential benefits. This could form part of the intervention, through a holistic approach to assessment, provision and training. Evans and Baines62 found that interventions for very young children failed when schools and parents did not fully engage from the outset:

He was happy to try it but lack of fine motor skills and dystonia meant his usage remained limited to large flat grassed areas . . .

Parent of a child with cerebral palsy, spinal muscular atrophy, global developmental delay, arthrogryposis, spina bifida, aged 15–72 months, starter powered mobility device users, Evans and Baines. 62 Specific characteristics of the individual being quoted are not reported in the paper

Unfortunately critical school staff did not support the use of Wizzybug and did not follow through with regular use of it to help her master these skills.

Parent of a child with cerebral palsy, spinal muscular atrophy, global developmental delay, arthrogryposis, spina bifida, aged 15–72 months, starter powered mobility device users, Evans and Baines,62 Specific characteristics of the individual being quoted are not reported in the paper

Fit between the child, device and environment influences the child’s sense of self and identity

Powered mobility devices were conceptualised by some parents133 and children59,99,100 as being a child’s ‘legs’. This integration of self and device illustrates a process of adaptation that allows a child’s ‘new self’ to emerge as a result of powered mobility and independent movement. 99 This is an important concept for therapists and clinicians to take account of, as powered mobility can become integral to the child as they become increasingly independent and able to engage with the world around them on their own terms:

Children perceived that the ‘self’ that existed before they had an EPIOC did not adequately fit the environment, and hence they were prevented from fulfilling their needs and desires. In contrast using an EPIOC was seen as allowing a new self to emerge, one that integrated their body and EPIOC.

Gudgeon and Kirk99 [Children with cerebral palsy, muscular dystrophy, spinal muscular atrophy or brain tumour (or their parents), aged 7–16 years, powered wheelchair users]

One of the key barriers to powered mobility use is access. This is particularly relevant in public spaces, which are often poorly designed for powered mobility use. 59–61,99,100,102,116,133 Access can also be an issue in home settings, owing to issues of space and adaptation. 58,61,62,99,100,102,133 Restricted access impedes children’s opportunities to participate in activities59–61,99,100,102,116,133 and to integrate powered mobility into daily life. 99,100 Powered mobility interventions can attempt to actively address these barriers by taking into account the home and public environment in which the child exists:

(. . .) children’s increased sense of liberty was dependent upon and directly limited by environmental obstacles: ‘life when you have an electric wheelchair is still a lot more complicated, due to society, not necessarily because of the wheelchair’ (. . .) Mothers identified various obstacles in the community, notably architectural barriers.

Pituch et al. 100 (Parents of children with skeletal dysplasia, osteogenesis imperfecta, spinal muscular atrophy, arthrogryposis or cerebral palsy, aged 12–18 years, powered wheelchair users)

The logistical issues of transporting powered mobility devices adds another layer of complexity, as a result of the size and weight of such devices. 59,61,99,100,102,103,133 In some circumstances, families may be deterred from using powered mobility outside common settings (such as home and school) because of practical or financial barriers to transportation:61

Most young people did transport their EPIOCs. However, nearly all said that the chair was heavy and cumbersome to take in the family vehicle, thus limiting the chair’s use away from home.

Evans et al. 59 [Children with muscular dystrophy, cerebral palsy or other diagnoses (or their parents), aged 10–18 years, EPIOC users]

Poor fit between the child, device and environment is a major barrier to participation, which, in turn, causes frustration, isolation and affects mood and self-efficacy. 59,99,100,133 Furthermore, poor fit can lead to reduced safety and to risks of harm to the child and people around the child. 59,61,62,100 This requires children and parents to be continually alert and vigilant, particularly in public spaces. The negative experience of accidents/injury can have a detrimental impact on the confidence of children, leading to fear, anxiety or a reluctance to use powered mobility:59,99

Even minor mishaps may affect children’s confidence in the chairs. Many young people said they did not always feel safe in the chair.

Evans et al. 59 [Children with muscular dystrophy, cerebral palsy or other diagnoses (or their parents), aged 10–18 years, EPIOC users]

In contrast, minor bumps and crashes can also be a positive learning experience, and can help children to refine physical driving skills. 109 A balance is needed between encouraging regular use of powered mobility and managing potential safety concerns. For some children, their sense of safety may be too limited to allow unsupervised use of powered mobility,59,109 but this does not mean that they cannot benefit from supervised powered mobility use. Furthermore a child’s initial inability to adequately control a powered mobility device does not indicate an inability to benefit from powered mobility or to develop control at a later date:74

Sometimes an individual’s ability and potential are difficult to assess because of his or her profound disabilities. In such cases ‘driving to learn’ may help to make the underlying potential more apparent. The training may reveal previously unrecognized abilities and determine an individual’s full potential.

Researcher observations of children with profound cognitive disabilities, aged 4–5 years, powered wheelchair users, Nilsson and Nyberg74

The interface between the child, device and environment is complex and multifaceted,61 and is also observed in dynamics between the child and wider society, for instance in the perceived stigma of powered mobility100 and other mobility aids. 58 The appearance of powered mobility devices is also important to children,59,99 highlighting the relationship between device and identity. Ongoing review and follow-up can ensure that devices are fit for purpose as a child grows, and as their needs change. 59,131,133 This requires close monitoring of children and devices, timely maintenance and a sensitivity for the child’s sense of self and emerging personality.

Children’s independence, freedom and self-expression as key outcomes of powered mobility

Independence was identified as an important powered mobility outcome in most studies,58–62,69,99–103,105,110,116,134 and was related, to some extent, with many other outcomes. For instance, independence was related to social participation58–62,69,99–103,105,116,134 and increased opportunities for play58–60,62,69,101,102,105,116 and exploration. 58,60,62,101,102,116 The experience of independent movement for children who would not be otherwise mobile or independent can have a profound impact on a child and their family. Powered mobility is perceived to broaden a child’s horizons as they begin to find new ways to interact with the world in age-appropriate ways:60,100–102,105,116

While Linda’s reluctance to consider a wheelchair for Jamie reflects similar perceptions describing early responses to wheelchair use in the literature, both mothers also share the view that wheelchair and ride-on car function in ‘opening up his world’ so Sam and Jamie can play with siblings and peers more independently.

Feldner et al. 60 (Parents of children with cerebral palsy, aged 4–5 years, powered wheelchair and ride-on toy users)

Freedom was also an important outcome across the age range. 59,60,100–102,105,116 The concept of freedom related to a child’s ability to control their chair, and the suitability of the environment to allow free movement and exploration, linking to the need to integrate child, device and environment. In younger age groups, caregiver vigilance is still required and may even increase when a child starts using powered mobility. However, child freedom can also spill over into positive impacts to the family and carers through the sharing of joy, reduced caring burden and more free time:62,133

Another parent reported: ‘. . . it allows her the freedom to go where she wants . . .’. Many parents used the word ‘freedom’ in describing what they liked the best about the chair. Freedom for the child helped to ‘free up’ time for the caregiver.

Berry et al. 133 (Parents of children with cerebral palsy, myelomeningocele or other diagnosis, aged 5–23 years, powered wheelchair users)

The wider family may begin to feel a sense of leading a ‘normal family life’62 as they begin to engage in more activities that involve the whole family in fun and play, thus facilitating a sense of family togetherness. 62 Conversely, some parents felt a sense of losing control as a result of their child’s newfound independence:61,62,103

I think it also means losing control as a parent . . . because now things can be run over in your house . . . it was a change to know that it was now happening in our lives . . .

Mother of an 8-year-old male with cerebral palsy, powered mobility device user from age 5 years, Kenyon et al. 61

Self-expression through movement and behaviour can be an indicator of growing agency and self-efficacy. 60,61,109,110,116 The development of independent movement can create a positive feedback loop of growing confidence and motivation, which encourages the child to continue to develop and push the boundaries of their world. 60 This relates to the growing sense of self and integration of powered mobility and body. Children use their powered mobility devices to express themselves and to communicate through movement,58,61,105,109,110 for instance moving away from tasks they do not want to do. They may also engage in risky behaviours and become disobedient as a means of pushing the boundaries of their world and expressing their newfound autonomy. 60,61,103,109,116 Although disobedience can be negative, it may also be indicative of a child participating in typical age-appropriate behaviour, and learning to makes choices and exert control. Therefore, a balance must be struck between encouraging age-appropriate behaviour and maintaining safety:

He tells me ‘No, mommy, I want to go here’ . . . to even be able to talk back to me – it makes me want to cry, in a good way.

Mother of 5-year-old male with cerebral palsy, powered wheelchair user, Feldner et al. 60

It appeared that it was the act of directing their own mobility agenda that brought forward the changes in agency (. . .)

Researcher, Feldner et al. 60

Synthesis of findings specifically relating to powered mobility for very young children

Seven studies referred specifically to children aged < 5 years and presented findings in such a way as to allow subgroup analysis of qualitative evidence;58,60–62,74,105,116 four studies were related to ride-on toys;58,60,61,116 three were related to powered wheelchairs;61,74,105 and one was related to starter powered mobility devices. 62

Very young children varied in their ability to control such devices; some children use these interventions as a means to promote independence and autonomy,60–62,105 some use them to understand cause/effect and response to stimuli58,62,74,105 and others use them to prepare for future powered mobility use,58,62,105 although these were not always mutually exclusive. Early provision of powered mobility was described as an important factor in promoting better outcomes:

They need to be able to keep up to their age, and at one we’re walking, we’re exploring different things, so it’s really no different. It’s just a different way of doing it (. . .) It made us say ‘absolutely he needs power mobility, right now! We can’t waste time (. . .)’.

Mother of 13-month-old male with arthrogryposis multiplex and hypotonia, ride-on toy user, Pritchard-Wiart et al. 58

The underlying conditions of the children and their related abilities appear to govern the purpose and potential of these interventions. This is an important distinction, as children can benefit from using powered mobility devices even if the ultimate goal is not for them to be used completely autonomously, or as a means to be fully independent in their movement. 74 Parents may seek early powered mobility as a means to achieving benefits for the child in the future, which also links to parents’ expectations and hopes:

When he gets older, he’s going to have a better life because of the chair – because he has that independence. When he goes to school, he won’t just be sitting in that chair; he’ll be on the same level that children who can walk are on.

Parent or grandparent of a child with cerebral palsy, myotubular myopathy or tetraphocomelia, aged 2–3 years, powered wheelchair user, Currier et al. 105 Specific characteristics of the individual being quoted are not reported in the paper

The perception of powered mobility devices designed specifically for very young children is also of importance. For instance, the universality of ride-on toys and their close resemblance to age-appropriate toys means that children are not seen as ‘different’ when using them. 58 This also speaks to the stigmatising experience that mobility aid users report. Ride-on toys may therefore be more acceptable to parents and children, with some families even pushing back the need for a wheelchair as a result of ride-on toy use. 58 Ride-on toys and starter powered mobility devices may provide a gentler introduction to powered mobility that is more in tune with parental expectations:

It was kind of neat to give him the opportunity to have a toy that other typical kids in the neighbourhood have . . . and I liked that it didn’t look obvious, as far as a tool for [children with] special needs, it was more subtle.

Mother of 50-month-old male with cerebral palsy, ride-on toy user, Pritchard-Wiart et al. 58

Across all seven studies, it appeared that most very young children gain enjoyment and benefit from their powered mobility devices. It is of note that some starter powered mobility devices were returned unused;62 reasons included the limited motor skills of the child, concerns about safety, poor access to the home, progression to walking rather than powered mobility and lack of parental time to facilitate use of the powered mobility. Likewise, some ride-on car users lost interest in the device over time or progressed to crawling instead. 58 Some negative outcomes of early powered mobility were noted from the parents’ perspective, including parental feelings of loss of control of their child61,62 and concerns about safety when the child used the powered mobility. 60–62 Conversely, parents also expressed that they were able to share in their child’s joy60–62,105,116 and that their expectations for their child improved. 61,105

Summary of findings and GRADE-CERQual assessment

In the final stage of the thematic synthesis, we compared and contrasted the analytical themes to better understand the relationships between the themes and to develop a cohesive summary of the thematic synthesis findings. Subsequently, we developed key findings arising from the qualitative data relating to (1) the acceptance of powered mobility, (2) developing powered mobility skills and competency, (3) using powered mobility safely, (4) anticipated and experienced outcomes from powered mobility and (5) the overall benefit of powered mobility. Further description is provided in Table 37. For each of these key findings, we applied the GRADE-CERQual approach to assess overall confidence in the evidence supporting the findings (see Table 37). Full details of the GRADE-CERQual assessment are provided in Appendix 10, Table 47.

Powered wheelchairs

The price of powered wheelchairs varies widely according the features required to address individual clinical need. In addition, NHS and other providers serving the NHS will be offered discounted prices that are lower than the publicly available list price. Although, in general, powered wheelchairs are more expensive than manual wheelchairs or buggies, the actual prices paid and the relative differential between powered and manual equipment varies widely in the limited national data available; therefore, it is possible to suggest only an approximate average cost.

The NHS reference costs for children’s ‘high need’ powered wheelchairs increased over a 5-year period from £377 in 2012/14, to £1760 in 2016/17. The most recent published figures for 2017/18 state a unit cost of £656 for the basic cost of a ‘high need’ powered wheelchair for children. This is more than double the cost of ‘low need’ (£266) and > 60% higher than ‘medium need’ (£394), but only slightly higher than the cost of a ‘high need’ manual wheelchair (£646). In addition, ‘specialist modification costs without supply’ are stated to be £139. 142

The Unit Costs of Health and Social Care 2018148 does not distinguish between provision for adults and children, but cites a capital cost of £1528 for a powered wheelchair, annuitised to £338 over 5 years. This is more than five times the cost for a self- or attendant-propelled manual wheelchair. Combined with maintenance revenue costs of £129, the unit cost rises to £467 per annum over 5 years. The authors of these unit costs148 cite one commercial site where costs range from £100 to £1300 for self- or attendant-propelled manual wheelchairs, and from £1000 to £5000 for powered wheelchairs.

From discussions with contacts within the NHS and the project advisory group (predominantly service providers/managers, service commissioners, commercial directors and representatives of national charitable organisations), and from reviewing the equipment cited in publications identified in the evidence review, we ascertained that the prices for powered wheelchairs for very young children are higher, ranging from £1800 to £8500. Based on the cost of chairs cited by NHS contacts and manufacturers’ list prices, our best estimate for the average cost of a powered wheelchair in this age range is £3939 (range £1800–8500). We assumed that these devices would be used by two children over the life of the chair; the cost per child is thus £1970 (range £900–4250). This is similar to the figures presented in the report Developing a Wheelchair Tariff Pilot Programme. 149

Starter powered mobility devices

Starter powered mobility devices, such as the Wizzybug145 and Bugzi,146 are generally aimed at children up to the age of 5 years (or weight limit of 25 kg). Other items aimed at this younger age group offer the potential for continued use after the age of 5 years, such as the TinyTrax, with a ‘grow with me’ design, and the SnapDragon (Dragonmobility Ltd). 150

These devices are not generally funded directly by the NHS, and are usually provided by loan through the third sector, either directly from the organisation or referred to by (or in collaboration) with therapists in the NHS. Families often obtain funding by application to other third-sector organisations for support, or fund the loan themselves. Manufacturers and other third-sector sites provide links to potential sources of funding. Families may privately fund the purchase entirely, although this is not thought to happen regularly.

Some professionals actively direct families to loan schemes or make them available to children through their own service. The current refundable deposit fees for Bugzi and the Wizzybug loans are between £100 and £200. The devices are loaned until the child no longer requires them, and are then returned for refurbishment for future loan. Capital costs of the items are between £3500 and £5000. Costs of provision and maintenance are often met by the supplying charity; however, in some cases, there will be extra associated costs, such as transport to the assessment/for collection and for maintenance. Based on these costs, our best estimate for the average cost of a starter powered mobility device is £4250 (range £3500–5000). Assuming that these devices would be used by two children over the life of the device, the cost per child is £2125 (range £1750–2500).

Ride-on powered toys

A number of researchers have explored building equipment to give very young children some experience of mobility through self-builds, using carts, robots and adaptations of ride-on car toys. The materials costs are relatively low in comparison with commercially available powered mobility equipment; however, the items are often bespoke for the child, so the amount of engineer resource may vary significantly according to need and the complexity of the build. The GoBabyGo scheme utilises students’ science, technology, engineering and mathematics (STEM) projects and estimates costs of the toy and adaptations as US$500. 56 Our best estimate for the average cost of an adapted ride-on powered toy is, therefore, £410 (range £310–510), based on the assumption that these devices would be useable by only one child, and the similar provision of engineering resource, using STEM students or voluntary resource.

Housing

Families with a disabled child may be able to access funding from their local authority for up to £30,000 in England to adapt the home. 147 The mean grant provided is £7500 (this value includes adults, as adaptations for wheelchair use are standard and unrelated to age of user). 156 The number of families accessing these grants is unknown, but is likely to be a small proportion; we have therefore assumed that 10% of children would receive funding for housing modifications before the age of 5 years, factoring in that some homes would not need to be adapted.

Costs calculated for relevant housing modifications were taken from the Personal Social Services Research Unit’s Unit Costs of Health and Social Care 2018. 148 Assuming that an entrance requires a ramp (at a cost of £906 per ramp), a doorway widened (at a cost of £667 per door) and path (at a cost of £153 per path) installed, and that each child would require two entrances to be adapted, the total cost equates to £3452 (range £1726–7500) per child, which we have used for our unit cost.

Community facilities

Adaptations may be required to community buildings likely to be visited by children who might benefit from powered mobility outside the home, for example schools, recreation centres, community centres and places of worship. No specific information was found about the associated costs of community adaptation in the systematic review. Although it is assumed that the costs of providing adaptations to accommodate a powered mobility device in such spaces would be the same as for housing, as most new community buildings are already built with accessibility in mind, and many older buildings will have adaptations already in place. It is anticipated that the number of new adaptations specifically for a child using powered mobility would be small; therefore, these costs are not included in the analysis.

Transport

There are no current data on the proportion of families requiring different or adapted vehicles because of their child’s disability, nor of the relative requirement for this based on use of a powered versus a manual mobility device. However, transport is recognised as causing issues throughout the review data. In the Canadian survey,132 > 70% of respondents cited difficulty transporting their powered wheelchair. In 2003, the organisation Whizz-Kidz published findings from a postal survey106 among families of children aged < 7 years who had been provided with powered wheelchairs; 61% said that they transported the child in the car, using a four-point strap and/or ratchet clamps. The Motability Scheme in the UK allows parents or carers of children aged ≥ 3 years to use their mobility allowance to lease a car or wheelchair-accessible vehicle. 137 Data obtained from personal communication with Motability UK (Press and Public Relations Department, Motability UK, 2019) indicate that, in the financial year 2018/19, 120 grants for these were made in relation to children aged < 5 years, which is < 10% of the grants awarded to all children aged < 18 years. This might be expected to increase should a greater number of this age group be given access to powered mobility options suitable for use outside the home.

Motability grant values averaged £2706 in 2018, so this has been used for our best estimate (range £2435–2977). 157 We have assumed that 10% of children will receive Motability grants. Families may need to top up this funding, but the exact levels involved have not been determined for this report. Similarly, we acknowledge that there will be additional travel and associated increased costs, such as fuel and depreciation of vehicles, for travel to appointments, training, etc., but insufficient data are available to quantify this.

In terms of transport to school, local authorities are responsible for the provision of free transport in appropriate circumstances, including to children with disabilities that affect their ability to walk. Legally, transport is required to be provided for eligible children only from the age of compulsory education (5 years),158 although many authorities provide transport for eligible children from the commencement of the school year in which the child attains the age of 5 years and starts full-time education, which is more commonly at age 4 years. Provision of powered mobility suitable for indoor and outdoor use to very young children, as opposed to waiting until they reach the age of 5 years, may increase the need for provision by an extra year per child, but, because of the lack of corroborating data, we have not included this cost in the analysis.

Population

• A total of 7300 children aged < 5 years are referred to NHS Wheelchair Services.

  • Of these, 400 are assessed for a powered mobility device and receive it.

• An additional 225 children receive a starter powered mobility device from the third sector or privately outside NHS services.

Mobility equipment

• Powered mobility device costs are based on the assumption that each device will last for 5 years and be used by two children during that time, assuming that each device is refurbished and then reused once (refurbishment costs are included in repair/maintenance costs).

• NHS provision is based on current NHS practice. Specific powered mobility device models are likely to vary, and may include some starter powered mobility devices: best estimate £3939 per device (range £1800–8500), equating to a cost per child of £1970 (range £900–4250).

• Third-sector provision is based on reported costs from manufacturers. Specific devices include Wizzybug145 and Bugzi:146 best estimate £4250 per device (range £3500–5000), equating to a cost per child of £2125 (range £1750–2500).

• Powered wheelchair costs and starter powered mobility device costs are multiplied by 23% and 6%, respectively, for each child, to account for customisation and modification.

Resources used in assessment, provision, handover and maintenance of powered mobility

• One-off staff costs associated with the assessment, provision and customisation of powered mobility are included in the analysis: £507 (range £368–936) per child.

• It is assumed that each child receives three reviews/maintenances during their use of the device: £1338 (range £1017–1365) per child, with lower maintenance frequency for less complex needs.

• For third-sector provision, it is assumed that all costs associated with assessment, provision, review and maintenance are included as overheads in the cost of each device.

Training

• Families of children requiring training for all wheelchair types are directed to further wheelchair training, provided by third-sector organisations such as Go Kids Go! or Whizz-Kidz, with 10% of children attending this training: £450 per child (range £350–550).

Housing and transport

• It is assumed that 10% of families receive adaptations to the home associated with powered mobility provision: £3452 per child receiving adaptation (range £1726–7500).

• It is assumed that 10% of families apply for a Motability grant to adapt their car for a powered mobility device: £2706 per child receiving adaptation (range £2435–2977).