Final Word version accepted for publication by British Journal of Occupational Therapy
TITLE
Electrically Powered Indoor/Outdoor Chair performance for children aged seven to nine years.
ABSTRACT
Introduction: Northern IrelandWheelchair Guidelines state that wheelchair users who wish to drive their National Health Service (NHS) provided powered wheelchairs outdoors must complete an electrically powered indoor/outdoor chair (EPIOC) test. Within the same guidelines children in Northern Ireland (NI)under the age of ten are not permitted to complete this assessment. Research was completed to evaluate how children under ten years would perform in EPIOC training and testing under adult supervision.
Method: A case-study design was utilised with three children aged seven to nine years to evaluate if: these children can complete EPIOC training/testing safely with adult supervision; length of time using an electric powered indoor chair (EPIC) correlates with performance on EPIOC training/testing; the current NI guidelines on age restriction should be re-evaluated so that each child is assessed on an individual basis rather than age.
Findings: Paediatric powered wheelchair users aged seven to nine years can become competent EPIOC users with adequate training and adult supervision. Length of time (years) driving an EPIC may not correlate with improved EPIOC performance.
Conclusion: Regional NI criteria relating to EPIOC provision for children should be revised in order to consider an individualneeds assessment, rather than imposing an age restriction.
[200wds]
INTRODUCTION
Within[A1] Northern Ireland (NI), when a service user is being prescribed a powered wheelchair clinicians are required to follow the regional wheelchair guidelines for NI (2012). These Guidelines, which are not imposed elsewhere within the United Kingdom (UK), have criteria which dictate both the lower age for whom an outdoor powered wheelchair can be provided as well as the speed at which the powered wheelchair can be driven. When the service user is provided with their first National Health Service (NHS) powered wheelchair, it has a maximum speed of two miles-per-hour and can only be used indoors. If the service user wishes to drive their wheelchair outdoors they then undertake an assessment called the Electrical Powered Indoor/Outdoor Chair (EPIOC) test. Once successfully completed they are permitted to use their NHS powered wheelchair outdoors as well as indoors with an increased upper speed limit available of four miles-per-hour, reflecting typical walking speed (Mohler et al. 2007). Further these Guidelines only permit service users who are ten years of age or over to complete this test. This imposed age criterion has no evidence supporting its foundation, and appears to have been introduced to correlate with the age that children in NI complete their cycling proficiency training within schools and are deemed to have acquired some level of road safety. These criteria, unique to NI with no similar criterion presently being used elsewhere in the World, were initially put in place as a means of reducing potential road safety risk for the child and their caregiver.
Rationale
Subsequently, due to the current age restrictionon driving speed,application ofthe Guideline imposes several limitations on both the child under ten years, and their family/caregiver. Specifically, where the child is reliant on a powered wheelchair for mobility, then they are unable to independently join the family in everyday outdoor activities, such as shopping and visiting other relatives. Furthermore, they may be unable to partake in outdoor games and social activities with their friends, or simply to go ‘for a walk’ up their street or to visit a neighbour.
Literature Review
Provision of powered mobility for children with mobility limitations has several benefits including improvement in general development, (Ragonesiand Cole, 2012; Lynch et al., 2009; Galloway et al., 2008; andJones et al., 2003); psychosocial skills and inclusion, participation, independence and function, (Guerette et al., 2013; Evans et al., 2007; Tefft et al., 2011; Jones et al., 2012; Rodby-Bousquet and Hagglund, 2010). Additionally, it can afford these children with a greater ability to socialise with their peers and their family (Evans et al., 2007).
Tefft et al. (2011) evaluated powered wheelchair provision for twenty-three children, aged between eighteen and seventy-two months. They found that powered wheelchair provision can improve independence and social intervention for young children, and had an overall positive impact upon the family, reducing the impact of caregiver stress.Indeed, there is evidence to suggest that children with restricted mobility may have passive, dependent behaviour and this can have long lasting consequences (Jones et al., 2012). These children have been found to often fall behind in other developmental areas because they cannot independently explore and act on their environment (Jones et al., 2003). Further these children are at risk of participation in fewer activities (Bult et al., 2011), and their mobility limitations are often key barriers to their participation in everyday activities (Shikako-Thomas et al., 2008).
In the USA there are no age restrictions on children’s usage of powered wheelchairs for outdoor mobility, with early intervention for those aged 0-3 years being federally mandated. Each state has its own mechanism for service delivery and funding which is similar to Canada where each province has its own fiscal criteria (Paleg et al., 2015), and variations in provision are consequently evident within the USA. Conversely, in Sweden there are no financial restrictions for the provision of powered wheelchairs, however, powered wheelchairs are not routinely provided to children. Further, Rodby-Bousquet and Hägglund (2010) reported that no child with cerebral palsy with mobility impairments and under the age of four had independent wheeled mobility outdoors. This may have been a result of the reluctance of parents to accept powered mobility (Rodby-Bousquet and Hägglund, 2010), or the resistance of the therapist to prescribe to young children (Wiart and Darrah, 2002).Moreover, in some countries children are only afforded the opportunity to access powered mobility once they have acquired skills that demonstrate a readiness to drive, however, as Hardy (2004) points out, these skills often can only be attained through having opportunities to experience mobility. Although the affirmative impact of early powered mobility on overall development is recognised (Paleg et al., 2015) there continues to be variations worldwide in both accessing and providing powered wheelchairs for young children. In N.I, children can currently access wheelchair services from three years, with manual wheelchair provision generally still being the first option considered, and powered wheelchairs given to these children for indoor only use. However, similar to the rest of the UK, should the parents wish, it is possible to obtain a powered wheelchair for indoors and outdoors use through self-funding or through charitable organisations.
In 1991, the UK Government ratified the treaty of the United Nations Convention of the Rights of the Child. This gives all children and young people comprehensive rights on all matters that affect them, including the right to leisure and play, to be safe, and to rest (Stancliffe, 2003). Within the treaty, disabled children are given additional rights to ensure that they have special care and support so that they can lead full and independent lives without discrimination. These rights are further enhanced through the Disability Discrimination Act (1995); the Human Rights Act (1998); and the Special Education Needs and Disability Act (1998, 2001). The first referring specifically to the supply of goods and services, and includes provision of children’s equipment to promote independence. Together the UK’s adoption of these legislative acts and policies means that the UK is committed to the provision of services and equipment for all children in the UK, including those with mobility challenges.
The introduction of the World Health Organisation’s (WHO)International Classification of Function, Disability and Health – Child and Youth version (ICF-CY) (WHO, 2004)identifies three levels of human functioning: (1) health condition; (2) body structure and functions (BSF), activities and participation; and (3) environmental and personal factors. Within this model, body structure and function (BSF) and limited independent mobility (activity) and participation are described as the major components of health and are influenced by environmental and personal factors (Casey et al., 2013). Children with gross motor impairment (BSF) and limited independent mobility (activity) may have participation restrictions unless an appropriate mobility device (environmental intervention) is provided. Mobility devices, whether powered or manual, can provide children with limited mobility with a means of self-initiated mobility allowing them to independently explore their environment (Fernandes, 2006), provide them with a sense of autonomy, the opportunity to participate in a range of activities and to pursue the interests of their choice (Frank and De Souza, 2013).
At present children who live in Northern Ireland who have been provided with a NHSpowered wheelchair must be ten years of age before they are eligible to drive their powered wheelchair outdoors. This criterion, which does not appear to have an evidence base, essentiallycompounds young children’s limitation in accessing their environment, as well as participation in everyday life with family and friends.Despite a growing body of research on powered mobility exploring wheelchair training programmes, readiness to drive or the type of powered mobility, there is a paucity of work on whether very young children can safely drive their powered wheelchairs outdoors. Therefore, this study was completed to evaluate how children aged four to nineyearswho are already indoor poweredwheelchair users, would perform in EPIOC training and testing.
Aims and Objectives
The aim of this study was to evaluate the readiness of children (aged between four and nine years), who already use a NHS powered indoor wheelchair to drive an EPIOC under supervision of an adult caregiver.
The objectives were to explore:
- If children between the ages of four and nine years can safely complete EPIOC training/testing with adult supervision;
- If exposure (time in years) to having an EPIC correlates with performance on EPIOC training/testing;
- If the Guidelineshould be reviewed so that each child is evaluated on an individual basis, rather than age in regards to accessing EPIOC training/testing.
Methodology
This study used case study design. A review of existing records showed small numbers of children in NI using powered wheelchairs.With small numbers of young children using powered mobility case study methodology can facilitate exploration and in-depth understanding (Crowe et al. 2011; Yin 2009) of the child’s ability to drive a powered wheelchair outdoors, and offer the potential of analytic generalisations to be made (Yin 2009). Previous studies relating to children’s powered wheelchair have also used low sample sizes (Lynch et al., 2009; Jones et al., 2003).Research Governance was obtained from the Belfast Health and Social Care Trust Research and Development office. Ethical approval was obtained from Ulster Universityand nationally from the Office for Research Ethics Committees Northern Ireland(REC14/NI/0055). Consent was obtained from the parent, and assent was obtained from each child. Anonymity and confidentiality of all participants was assured throughout all phases of this study.
Sample
All children who lived in NIwho had been provided with a NHS powered wheelchair, and who were aged between four and nine years, were invited to participate in the study. Potential participants were identified by an administrator at the Regional Disablement Services (RDS) with access to this regional data. This administrator was not involved in the study therefore limiting the threat of selection bias. A total of twenty-one children were identified as being potentially eligible to participate in the study. Due to this low number a power analysis to determine sample size was not completed. It was anticipated that recruitment for this study would be low in line with other studies exploring the relationship between children and powered mobility which had sample sizes ranging from one to ten, (Ragonesiand Cole, 2012; Lynch et al., 2009; Galloway et al., 2008; Jones et al., 2003).
The first author provided the RDS administrator with an information pack, permission slip, copy of the EPIOC route map and the EPIOC points system to post to each of the parents of potential participants. If the parent agreed for their child to participate in the study they signed and returned the permission slip in the stamped-addressed-envelope. They were then contacted by telephone by the first author to discuss the study further and determine if their child met the inclusion criteria.
Inclusion Criteria[A2]
Eligible child wheelchair users had to have an NHS provided powered indoor wheelchair for at least six months; be aged four to nine years; be able to travel to the EPIOC test/training site with their parent; and both child and parent able to understand and speak the English language. Parents gave informed written consent and the child gave their assent by writing their name or ticking the relevant box on the consent form.
Exclusion Criteria:[A3]
Children were excluded if they hada medical/educational diagnosis of a severe learning disability or cognitive disability; had any problems with eyesight (that could not be corrected with glasses); any hearing impairment (that could notbe corrected with a hearing aid; or had a diagnosis of uncontrolled epilepsy (had to be seizure free for one year before commencement of the study).
Participants
A total of fourteen parents returned the permission slips. Of these nine did not meet the inclusion criteria; two children had not yet received their wheelchairs; for another the parents were non-English speaking; and the other six children had a diagnosis of severe learning disability.
A total of five children were eligible to participate, however due to medical reasons two of these children withdrew before commencement of the study. The total study sample was three children (two boys and one girl) aged seven to nine years, with diagnoses of cerebral palsy with spastic quadriplegia (n=2) and Duchenne Muscular Dystrophy (n=1). All three children were aged seven to nine years.
Data Collection
All training/testing was completed in the Belfast Trust on the grounds of a large regional hospital site, the workplace of the first author. Participants were provided with two appointments, both with their parent present; one for EPIOC training completed by the first author; then a secondappointment two weeks later to complete the EPIOC assessment as per the current NI EPIOC assessment protocol for those aged ten and above. In order to minimise the risk of assessor bias and potential issues with inter-rater reliability the EPIOC assessment was completed by this second occupational therapist, also anaccredited EPIOC trainer/tester. Further, all interventions were completed using the standardised Belfast Health and Social Care Trust route thereby reducing the threat of measurement bias.
To date, there is no standardised outcome measure availablerelating to child or adult performance in EPIOC use. Performance on EPIOC training and assessment was captured using the EPIOC score sheet developed by Trust staff. The EPIOC is a pass/fail test scored out of 500 points and contains twenty-five categories based on obstacles and manoeuvres the powered wheelchair user must face along the training and test route. Each category has a risk factor of low, medium or high. An optimal score is zero, however if participants accrue 120 points they fail the assessment and are not eligible to progress on to complete the EPIOC test as further training would be required. It is used to determine an individual’s ability to safely and competently drive their powered wheelchair outdoors. Additionally, parent comments regarding their child’s performance during training/testing were recorded; along with any verbal prompts to manage the child’s safety during driving were noted.
EPIOC Training
The participants attended the Belfast site to complete EPIOC training using their own powered wheelchair thereby ensuring user familiarity with the wheelchair functionality and settings. The original speed settings of the participant’s powered wheelchair were noted and then re-programmed to a maximum speed of four miles-per-hour. EPIOC training was then completed along the pre-determined EPIOC route, through hospital buildings, along an outdoor footpath and crossing several traffic junctions within the hospital grounds. An average EPIOC training session takes one to one-and-a-half hours and once training was completed, the participant’s wheelchair speed was returned to its original setting.
EPIOC Test
The child returned with their parent two weeks after the EPIOC training for the EPIOC test, which lasted approximately one hour. The second assessor, blinded to their training performance, completed the EPIOC assessment. The twoweek period enabled determination of whether the participant had retained information from the training session.