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Improving services for electrically powered indoor/outdoor chair (EPIOC) users

Completed

Project description

Summary:

This research programme explored the impact of the provision for very severely disabled people of an Electrically- Powered-Indoor- Outdoor-Chair (EPIOC). The NHS Executive and Department of Health estimated that there were over 11350  EPIOC users in the UK and this number was growing steadily by over 3500 per year.  The impact of the provision of EPIOCs  needed to be fully understood to inform policy and practice.

Description:

The research demonstrated for the first time that provision of an EPIOC significantly improved the QoL of the user as well as mobility, pain and discomfort. Further research focussed on identifying the needs and potential benefits of EPIOCs for specific user groups (younger and older people). The study found that young EPIOC users not only relied on an EPIOC as a means of mobility i.e. to physically access school/college, but equally importantly it allowed them to be able to be socially included; this gave them the opportunity to build relationships with their peers and, with ongoing training in the use of the EPIOC, it facilitated their overall development. It also was found that the use of EPIOCs successfully enabled them to enter the world of work.  Users particularly valued the independence and privacy from their parents that an EPIOC provided. Both parents and children described “risky” behaviours as a result of the greater independence gained through the use of an EPIOC.  The children described these behaviours with excitement and relish, whilst the parents were much more cautious and fearful. Until these findings came to light, EPIOC provision had only been prescribed as a mobility aid; this research evidenced the equally important benefits derived from enhanced social inclusion through the development opportunities afforded. Research into EPIOC use by older people, exploring an underlying assumption that benefits would be minimal for this ageing population.  The research took a qualitative approach to explore the insiders’ views of what it means to be provided with an EPIOC.  The major finding was not only that the older people gained independence and increased their activity by using their EPIOC but also that their major carer (often a spouse, usually older) gained benefits by becoming more independent, as they had more time for themselves. As a result of not having to push the wheelchair, they found their physical health improved and they experienced a great relief from this physically demanding responsibility. Research has expanded to examine EPIOC provision for specific user groups. Cerebral palsy and muscular dystrophy, although thought of as conditions of children and young people are now considered across the lifespan. Multiple sclerosis and spinal cord injury, mostly affecting young to mid-aged adults, are examined with EPIOC users ageing with these underlying health conditions. 

Impact Statement:

Brunel’s research identified the ways in which electrically powered indoor/outdoor chair (EPIOC) use improves the quality of life (QoL) of people with disabilities; key findings have been used to inform public policy, enhance professional standards and international evidenced based guidelines for professional practice and improve the health and social welfare through the empowerment of disabled person’s organisations. The impacts are based on the newly gained recognition, based on the research findings, that young people need an EPIOC to provide opportunities for social inclusion, positive risk taking behaviours, successful transition into the work environment and to enable general healthy development and capacity for independent living.  Older people need EPIOCs to reduce the physical and emotional stress on elderly carers. The impacts have ensured more effective policies are developed, professional practice is enhanced and more appropriate assessment and prescription services are provided for these service users.

Reports:

* THIIS Trade Magazine Feb 2015 https://issuu.com/thiis/docs/thiis_-_feb_15/6  * REHAB Management http://www.rehabpub.com/2015/01/wheelchair-assessment-ms-patients-holisitic/ * Study on wheelchairs for MS users * NSW Government – Family and Community Services – 24 hour Positioning Practice Guide * Royal United Hospitals Bath – Current Awareness Bulletin May 2015 * Transfermaster.com https://www.transfermaster.com/blog/view-post/Wheelchair-Users-With-Advanced-MS-To-Receive-Holistic-Assessment

Frank A and De Souza L. (2013) Recipients of Electric Powered Indoor/outdoor Wheelchairs provided by a National Health Service: a cross-sectional study. Archives of Physical Medicine and Rehabilitation Volume 94: 2403-9. Published on line 25th July 2013.DOI: 10.1016/j.apmr.2013.07.010

Outputs:

Clinical features of children and adults with a muscular dystrophy using powered indoor/outdoor wheelchairs: disease features, comorbidities and complications of disability

https://bura.brunel.ac.uk/handle/2438/14140 

Problematic clinical features of children and adults with cerebral palsy who use electric powered indoor/outdoor wheelchairs: A cross-sectional study

https://bura.brunel.ac.uk/handle/2438/12912 

Problematic clinical features of powered wheelchair users with severely disabling multiple sclerosis

https://bura.brunel.ac.uk/handle/2438/12783 

Rare diseases: matching wheelchair users with rare metabolic, neuromuscular or neurological disorders to Electric Powered Indoor/Outdoor Wheelchairs (EPIOCs).

https://bura.brunel.ac.uk/handle/2438/11753 

De Souza LH and Frank AO (2018). Clinical Features of Electric Powered Indoor/Outdoor Wheelchair Users with Spinal Cord Injuries: A Cross-Sectional Study. In press Assistive Technology, the Journal of the Rehabilitation Engineering Association of North America (RESNA) July 2018. doi.org/10.1080/104000435.2018.1503205