EMPoWER: young people’s take on early powered mobility

EMPoWER – Early Mobility and Powered Wheelchair Evidence Review – was a research project to investigate whether providing powered mobility for very young children (under 5 year olds) provides more benefits than waiting until after children are 5 years or older. From the beginning, we wanted children and young people to influence the project. So we teamed up with AniMates.

EMPoWER logo by Hannah, AniMates

AniMates is a group of seven young people and young artists aged 16-21 years, and an interdisciplinary artist and creative producer Lucy Barker. AniMates makes artwork to shape and share research projects. The group members have experience of living with physical, communication, or learning disabilities. Three AniMates members use powered mobility themselves. Two of the co-investigators on EMPoWER, Aimee Grayston (powered mobility user) and Jennifer McAnuff (clinician researcher), are also AniMates’ members. Another AniMates member, Ria, has previously written about the group and their role in the project.

On EMPoWER, AniMates worked with the project team to: (1) keep the views of young powered mobility users in focus at all times; and (2) find ways to explain how the project has been done, and what the results are. The resulting full project report can be freely accessed here, including the integrated findings and Aimee’s reflections on involvement in the project and the lead investigator’s presentation on the findings.

We now want to further share the creative outputs produced by AniMates. These reflect the group members’ takes on some of the findings from the EMPoWER evidence synthesis. You can view clips around specific topics by scrolling on (see below). You can also view all the clips together as a full 10 minute video link elsewhere. Enjoy!

Video 1. Solomon the Adventurer. The EMPoWER project found that powered mobility can have positive impact on children’s everyday participation, play and social interactions – regardless of age. Specifically, that powered mobility enables children to move, and through that to play, to explore, to learn – and to healthily misbehave!

Video 2. Aimee’s TV Debate on Safety vs Risks. The AniMates young people’s group raised concerns about accidents that could happen if very young children are provided powered mobility. So we looked for evidence about this. We found that concerns about accidents and risks were mentioned in several papers. However, in terms of actual accidents and harm, there were not very many papers. Ultimately, the evidence did suggest that, in real-world use, younger children don’t seem to have any more accidents, or worse accidents, than older children. We did find some suggestion that powered mobility equipment could cause pain and discomfort to the child, especially if the child sat in it for a long time.

Video 3. Ria, Freedom and Risk Assessments. The discussions about risks, harms and accidents further led to more fundamental discussions about important concepts such as freedom, rights, and oppression.

Video 4. Hols, independence and autonomy. The project found limited data on the impact of early powered mobility on self-care or independence. The data we found suggested there could be some positive impact: powered mobility might reduce the child’s reliance on carers; and this in turn might increase the child’s independence, autonomy and freedom.

Our huge and humble thank you to AniMates and Lucy for working on EMPoWER with us! We could not have done it without you!! Also, a big thank you to our amazing EMPoWER advisor network. It was an absolute privilege to work with you on this, and to learn from your wisdom.

As parting thoughts, we have summarised here our team’s digested views about some of the key questions. Our views on these may change, but we hope these help to keep the discussion going:

  • What is the purpose of early powered mobility? To achieve movement for movement’s sake – to enable play, participation and social interactions (as well as to enable mobility of getting from A to B). Many people in the field have expressed this view for some time. How do we adopt this as the dominant view in the society, policy and practice too?
  • Who is powered mobility for? The EMPoWER evidence synthesis suggests it can be beneficial for a wide range of children, regardless of age, cognitive ability, or physical limitation. It is not just for the smaller, future adult powered mobility population.
  • When is a good time to provide powered mobility for a child? There was no single answer to this question, and indeed one of the project recommendations was further work to specify practical criteria to guide this decision. However, from practice point of view, the project suggests that the current provision at age 5 or older is very likely too late for many children. Opportunities will have already been missed.
  • But isn’t it just simply too dangerous to give powered mobility to a young child? There is a balance to be struck between embracing risk and not swinging too far in favour of protecting. The AniMates videos, above, explore some of the key aspects of this. It is important to also recognise that families balance risks all the time as part of their everyday life, and professionals and policy makers also already do so in many other areas.
  • How can we improve the provision of early powered mobility? We should consider powered mobility earlier for more children. Age-based criteria to provision needs to be lifted. Powered mobility provision should not only consider the equipment but also to include: (i) a component to support parents with the conflicting emotions that the provision can trigger; and (ii) careful consideration of how to achieve a good ‘fit’ between the child, their situation and the equipment.
  • How does mobility relate to human rights? The right to personal life includes the right to participate in essential social, cultural and leisure activities. From the evidence found in the EMPoWER study, it seems that early powered mobility can enable participation in social and leisure activities.
  • Where should early powered mobility intervention come from? Who should provide and fund it? This is not a question we can answer from evidence. So far the third sector providers have led the field, and successfully advanced provision. However, this has not been able to secure access to all children who would benefit, and there is a risk that the current provision increases inequities. Wheelchair services have been involved in the project and may have a role to play. And considering the focus on participation and developmental outcomes, child development therapists and play professionals also have a more pro-active role to play. Perhaps the next step is more formally recognising these different provider partners, their roles and the powerfully beneficial contributions each of them can have.
  • So what’s the bottom line? Families, providers and policy makes will have to make choices. Early powered mobility is one option. If we choose other options over early powered mobility, are we really certain we have made the right choice? For instance, are other options like delayed powered mobility provision more worthwhile in terms of time, money and the child’s future development? It is important that we consider these options based on the available evidence, which shows that movement, activity, social participation and community independence are absolutely key for long-term health, happiness and well-being.

Finally, do watch this space as we continue the sense making process with the very young children themselves, and their families…! More to follow!

EMPoWER logo by Ria, AniMates
AniMates logo, by AniMates

The EMPoWER project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment (project reference 17/70/01). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

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