ObjectiveTo enhance understanding of the experiences of ageing with cerebral palsy (CP) in adulthood with a particular focus on experiences with health services.DesignA qualitative descriptive methodology was applied to capture adults' views of ageing with CP and related interactions with health services. Semistructured interviews were undertaken with data systematically coded and interpreted by grouping information into categories. Themes that encompassed the categories were identified through thematic analysis.SettingAll healthcare settings.Participants28 adults (14 women) with CP, aged 37–70 years.Results5 themes covered the breadth of participants' experiences: (1) acceptance of change; (2) exploring identity: cerebral palsy as only one part of self; (3) taking charge of help; (4) rethinking the future and (5) interacting with health professionals. Being seen and being heard were the features described in positive healthcare interactions. Participants also valued health professionals who reflected on who holds the knowledge?; demonstrated a willingness to learn and respected participants' knowledge and experience.ConclusionsOur findings could, and arguably should, inform more responsive strategies for disabled people in health services and, indeed, all health consumers. Our study supports other findings that impairments related to CP change and, for many, severity of disabling impact increases with age. Increased interactions with health and rehabilitation professionals, as a consequence of these changes, have the potential to impact the person's healthcare experience either positively or negatively. A ‘listening health professional’ may bridge their knowledge gap and, in recognising the person's own expertise, may achieve three things: a more contextualised healthcare intervention; a better healthcare experience for the person with CP and positive impact on the person's sense of autonomy and identity by recognising their expertise. Future research should identify whether this approach improves the healthcare experience for adults living with CP.
BackgroundThe RAPPER II study investigates the feasibility, safety and acceptability of using the REX self-stabilising robotic exoskeleton in people with spinal cord injury (SCI) who are obligatory wheelchair users. Feasibility is assessed by the completion of transfer into the REX device, competency in achieving autonomous control and completion of upper body exercise in an upright position in the REX device. Safety is measured by the occurrence of serious adverse events. Device acceptability is assessed with a user questionnaire.MethodsRAPPER II is a prospective, multi-centre, open label, non-randomised, non-comparative cohort study in people with SCI recruited from neurological rehabilitation centres in the United Kingdom, Australia and New Zealand. This is the planned interim report of the first 20 participants. Each completed a transfer into the REX, were trained to achieve machine control and completed Timed Up and Go (TUG) tests as well as upper body exercises in standing in a single first time session. The time to achieve each task as well as the amount of assistance required was recorded. After finishing the trial tasks a User Experience questionnaire, exploring device acceptability, was completed.ResultsAll participants could transfer into the REX. The mean transfer time was 439 s. Nineteen completed the exercise regime. Eighteen could achieve autonomous control of the REX, 17 of whom needed either no assistance or the help of just one therapist. Eighteen participants completed at least one TUG test in a mean time of 313 s, 15 with the assistance of just one therapist. The questionnaire demonstrated high levels of acceptability amongst users. There were no Serious Adverse Events.ConclusionsThis first interim analysis of RAPPER II shows that it is feasible and safe for people with SCI to use the REX powered assisted walking device to ambulate and exercise in. Participants with tetraplegia and paraplegia could walk and perform a functional exercise program when standing needing only modest levels of assistance in most cases. User acceptability was high.Trial registration ClinicalTrials.gov, NCT02417532. Registered 11 April 2015.
The health response to the COVID-19 pandemic has had significant impacts on neurorehabilitation provision both internationally and in New Zealand. Telerehabilitation, the delivery of rehabilitation at a distance using information and communication technologies, was advocated as a means of addressing the rehabilitation needs of our patients while maintaining physical distancing and reducing the risk of viral transmission. Despite research evidence indicating that telerehabilitation is as effective as in-person rehabilitation for people with neurological conditions, there were significant challenges in delivering and sustaining telerehabilitation practice. We draw upon our experiences in delivering telerehabilitation in neurorehabilitation clinical practice and education to reflect on the process of practice change and to consider how these experiences can inform practice development in the future. We propose that rehabilitation organisations and physiotherapists continue to develop capability to provide telerehabilitation; that physiotherapists and the physiotherapy profession focus on translating their communicative, relational and clinical skills to the digital space to ensure they are competent in telerehabilitation; and that, as a profession, we focus on what constitutes "best practice" in telerehabilitation, and how in-person and telerehabilitation can be integrated to provide engaging, evidence-based and person-centred rehabilitation.
Texas Instruments ADS1299 is an attractive choice for low cost electroencephalography (EEG) devices owing to its low power consumption and low input referred noise. To date, there have been no rigorous evaluations of its performance. In this EEG experimental study we evaluated the performance of the ADS1299 against a high quality laboratory-based system. Two self-paced lower limb motor tasks were performed by 22 healthy participants. Recorded power across delta, theta, alpha, and beta EEG bands, the power ratio across the motor tasks, pre-movement noise, and signal-to-noise ratio were obtained for evaluation. The amplitude and time of the negative peak in the movement-related cortical potentials (MRCPs) extracted from the EEG data were also obtained. Using linear mixed models, no statistically significant differences (p > 0.05) were found in any of these measures across the two systems. These findings were further supported by evaluation of cosine similarity, waveform differences, and topographic maps. There were statistically significant differences in MRCPs across the motor tasks in both systems. We conclude that the performance of the ADS1299 in combination with wet Ag/AgCl electrodes is analogous to that of a laboratory-based system in a low frequency (<40 Hz) EEG recording.
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