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I first wrote a column about the Stay Up Late campaign for the NZRA back in 2007 (when our newsletter was just a word doc sent out by email). Recently I've been writing a review of the literature on working aged adults with neurological impairments who end up in geriatric residential facilities for one reason or another, and the challenges that emerge from this around creating individualised, flexible, person-centred care for people who need 24 hour support. All this made me think of the Stay Up Late movement once again. In a nutshell, Stay Up Late is a grassroots UK charity originally initiated by Heavy Load – a UK punk band consisting of musicians with intellectual disability or mental health issues and their support staff. The movement boils down to putting a halt to people with support care needs having to leave clubs and music gigs early because their staff finish their shifts at 10pm.
I have to say, I love everything about this movement. I love the punk aesthetics. I love the music. I love the challenging of the status quo; the drive to have fun and maybe be a little bit badly behaved sometimes. I love the enthusiasm and momentum of the people behind it all. Since I last looked at this group in 2007, they have just grown in strength and numbers. The website is intensely active, there is such clear pride in the work, and the charity has pushed into other areas of independent living that need a bit of cage rattling. This is what we need more of in rehabilitation and disability sector.
Check out the website, or if you just want to enjoy the wall of sound that is Heavy Load, checkout the video from back in 2007 below. Rock on, dudes.
William Levack is an Associate Professor of Rehabilitation at the Rehabilitation Teaching & Research Unit, University of Otago, Wellington, New Zealand. Twitter: @DrLevack
Coming up with a definition of rehabilitation that everyone agrees on is super difficult! A good definition should clearly and comprehensively describe what is and what is not within scope of rehabilitation. Does rehabilitation include the management of cerebral pressure in the acute stages of management of traumatic brain injury? Is ice for an ankle sprain rehabilitation? Is cognitive behaviour therapy a form of rehabilitation in all or just some contexts, or it is never actually rehabilitation? Does rehabilitation extend beyond the formal health services to include things like getting back to one's bridge club meetings, going to the beach or pub for the first (or tenth?) time after spinal cord injury, or starting up with wheelchair rugby? At what point is 'rehabilitation' just people getting on with their lives again?
Some might say that rehabilitation is defined by the process involved. If it is goal directed, does that make it rehabilitation? (Football is goal directed: Is that rehabilitation?) Does rehabilitation require the involvement of formally trained health professionals? It is rehabilitation because it is provided by a rehabilitation service (a tautological definition)?
In the business case to establish Cochrane Rehabilitation, we referred to the World Health Organization's (WHO) current definition of rehabilitation which is: ‘a process aimed at enabling [people with disabilities] to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Rehabilitation provides disabled people with the tools they need to attain independence and self-determination’. In 2001, WHO also included the view that: ‘The rehabilitation process does not, however, involve initial medical care’ (p.290). I suspect some people disagree with this extra criteria to define rehabilitation however, which might exclude initial management of spasticity after brain or spinal cord injury for instance. It also raises the question about when 'initial medical care' ends. Nonetheless, this is the definition my colleagues and I used in our review of goal setting in rehabilitation (Levack, 2015) to help make decisions about papers that were and were not ‘in scope’ for the review. Of note, we used this definition to include papers from the mental health sector as well.
One additional thought I have on this topic however is that I’m increasingly questioning the idea that the primary focus of rehabilitation should be on maximizing independence. For people with complex disabilities, I’m wondering whether rehabilitation should be more about maximizing people’s opportunities to fulfill their personal preferences, which may or may not include maximizing independence. It may also include maximizing interdependence. It could also include making decisions to pass control of some aspects of one’s life over to other people.
This is not actually an incredibly radical idea. Being someone with very little hair, I am 'independent' in getting my two weekly haircut. (I just shave my own head.) Others however choose to get help with their hair. They pass control of their hairstyle over to trained professionals. When the hairdresser says 'what would you like me do for you today', the individual in question could in fact say 'I don't know. You decide. Surprise me.' Interestingly, this is not considered 'being dependent on others' (considered a poor outcome in rehabilitation), but rather this is considered to be people exercising their right to choose.
From this perspective, rehabilitation for people with complex conditions should be primarily about reinvention of oneself rather than primarily about regaining independence. Restoration of one's prior skills and abilities is still part of this perspective on rehabilitation, but simply not the sole focus. This position in fact aligns nicely with Amartya Sen and Martha Nussbaum 'capabilities theory', which focuses on 'the moral significance of individuals' capability to achieve the kind of lives they have reason to value'. It also fits nicely with a focus on strength of positive self-identity as primary outcome from rehabilitation rather than using measures of functional independence as the main way to judge the 'success' or otherwise of rehabilitation programmes.
In 1624, John Dunne wrote: "No man is an island/Entire of itself/Every man is a piece of the continent/A part of the main." In doing so, Dunne reminds us that none of us are independent; none are separate from the thoughts and actions of others. Maybe it is time to re-define rehabilitation to incorporate a more holistic, interdependent view of functional lives.
Levack, W. M. M., Siegert, R. J., Dean, S. G., McPherson, K., Hay-Smith, E. J. C., & Weatherall, M. (2015). Goal setting and activities to enhance goal pursuit for adults with acquired disabilities participating in rehabilitation. Cochrane Database of Systematic Reviews, Issue 7, Art. CD009727.
World Health Organization. (2001) The UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities. II. Main Report. Geneva: World Health Organization.
This week I have been in the beautiful city of Brescia, Italy, attending a Formal Exploratory Meeting to help finalise a proposal for a new Field in Cochrane – one focussing on clinical rehabilitation. This meeting has been the culmination of two years of work, and is the last step required before the submission of an Action Business Plan to Cochrane. The Cochrane Steering group will formally consider our proposal at the 24th Cochrane Colloquium in Seoul next month, after which – if the proposal is accepted – Cochrane Rehabilitation will be launched. So what is this all this about?
Cochrane (previously known as ‘The Cochrane Collaboration’) is a global, independent, not-for-profit organisation, which is set up to gather and summarise the current best evidence to guide healthcare decision making. Cochrane has been running for 20 years and is comprised of Review Groups, Centres, Method Group, and Fields and Networks. The Review Groups are typically organised around diseases or health disorders and are in charge of the work required to prepare and maintain systematic reviews. Cochrane Centres are the regional branches of Cochrane, and are primarily responsible for providing local support for Cochrane contributors. Cochrane New Zealand is one example of a Cochrane Centre. Method Groups focus on specific issues to do with development and synthesis of evidence in healthcare. The job of a Cochrane Field is to cross boundaries between the various Cochrane groups – so often Fields focus on broader dimensions of healthcare, such are primary care, ageing, children’s health, or, in the case of our proposal, rehabilitation. More recently, Cochrane has indicated a key part of the work of fields will be knowledge translation – making the information about evidence based practice generated in Cochrane more accessible to health funders, providers, and consumers worldwide.
In New Zealand, everyone can freely access all resources within Cochrane if you enter the Cochrane website via the Ministry of Health. To do this, go to the part of the Ministry’s website on Cochrane; then click on the link on the right-hand side to ‘Access the library’.
Development of a group within Cochrane dedicated to rehabilitation was an idea initially proposed by the Evidence Based Medicine Committee of the European Society of Physical and Rehabilitation Medicine. Since then the idea has garnered support from a number of national and international organisations, include the International Society of Physical and Rehabilitation Medicine. Funding to help establish the new Field has come from the Don Gnocchi Foundation and University of Brescia, so the headquarters of Cochrane Rehabilitation will begin in Rovato - a province in Brescia, Italy.
The aim of the Field is to act as a bridge between Cochrane and rehabilitation stakeholders (in the broadest sense of the word). The concept of a ‘bridge’ includes the notion of traffic going both ways. In one direction, Cochrane Rehabilitation intends to act as a conduit for making evidence generated by Cochrane on best practice in rehabilitation more understandable, more meaningful, and more accessible for health professionals, patients, and their families. The sort of ideas already discussed here include the possible development of an online eBook summarising information on different aspects of rehabilitation from Cochrane reviews, the use of newsletters and social media to keep people updated on evidence in rehabilitation medicine, and the provision of training on how to make best use of the resources about rehabilitation available through Cochrane. In the other direction, Cochrane Rehabilitation intends to provide a means by which rehabilitation researchers, professionals, and consumers can actively contribute to the work and thinking of Cochrane as an organisation. This could involve, for instance, active involvement of the Field in discussions within Cochrane regarding new ways to generate, interpret, and synthesise research evidence to better address the challenges of research in rehabilitation contexts. These challenges include issues such as the complexity of rehabilitation intervention that frequently involve multiple components, individualisation of treatment, require behaviour changes from both patients and health professionals, and which may influence a range of different types of health outcomes.
The Formal Exploratory Meeting held this week in Brescia was a necessary step in the establishment of a new Cochrane Field. Cochrane requires these meetings to be held in a certain way – for instance it could not be a meeting that is simply added on to an existing international professional conference. A degree of commitment to discussing and developing a proposal for a new Field is required. Prior to the meeting a draft Action Business Plan was written and circulated to people attending, including Mark Wilson, the CEO of Cochrane. The meeting served as a way to confirm support from the rehabilitation community worldwide regarding the goals, direction, and organisation of the proposed Field. In this regard, the meeting was a huge success. More than 190 people from 48 countries worldwide have so far expressed interest in becoming members in one capacity or another with this new Field, should it be established. Over 40 of these people, representing 19 countries, were able to attend the meeting in Brescia.
Of note, there was considerable commitment at this meeting to making Cochrane Rehabilitation an interprofessional organisation. There was also strong support for consumer representation within the Field and to ensure that the work of the organisation is responsive to the needs of lower income as well as middle and high income countries. This commitment is evident in the name of the organisation, the proposed governance structure, and through its initial aims and objectives.
There will be a lot more to come out about this new initiative over the coming months and years. However, if you would like to learn more, you can read our editorial on the establishment of this group in the Archives of Physical Medicine and Rehabilitation (also published in Physical Therapy, Manual Therapy and the European Journal of Physical and Rehabilitation Medicine). If you wish to sign up to the mailing list for the new Field, you can do so by complete this brief SurveyMonkey questionnaire. You can share the link to this question with others by sending them this URL: http://surveymonkey.com/r/CochranePRM. All are welcome!
I confess to being fascinated by the sudden advance in technology over the last few years in driverless (aka. autonomous) cars. Unlike personal jetpacks (which frankly I’ve been waiting for since 1984 when some dude flew into the opening ceremony of Los Angeles Olympics) driverless cars are a real thing that is highly likely to available for sale within five years. One of the reasons to expect driverless cars on our roads in the near future is that we have not one but multiple major car companies saying they will have autonomous cars on the market by 2020, if not sooner. Yes, there was a tragic fatal accident recently involving a test driver of a Tesla autonomus car, but already there is significant evidence to suggest that driverless car are very likely to be more safe on the road than human driven ones – after all, most accidents on roads are caused by human error.
So what advantages would driverless cars offer people with impairments? Several benefits immediately spring to mind. Firstly, driverless cars provide a personal transport option for people who cannot drive. If you are unable to drive due to visual impairments, cognitive impairments, or physical impairments you could still have all the benefits of personal car use from a driverless car.
Secondly, driverless car do not need to wait where you leave them. It would be possible with a driverless car to take a trip to the supermarket, stop right outside the front door, exit your vehicle, and then send your car off to park somewhere convenient around the corner (or several blocks away) while you do you shopping. When you’re ready to return home, shopping in hand, all you would need to do is just call your car by phone (or by speaking into your watch if you want to do it Michael Knight style) to have it come and pick you up again. Shopping centers would still probably need to have drop-off points reserved for people with disabilities, but driverless cars would increase the number of vehicles that could make use of such parks at any one time.
Thirdly, driverless cars do not need to be owned by a single individual. Driverless cars create options for community ownership of vehicles, which can be used by multiple people at the same time. Your car could drop you off at work, then go and help someone else get to their doctor's appointment rather than sit unused in a carpark, waiting for you to finish your work day.
A fourth advantage of driverless cars is likely to be how space inside the car can be used. Currently, cars have to be set up to accommodate a driver, with a steering wheel, gear shift and so on. A fully functional driverless car wouldn’t even need front-facing seats. The entire interior of a car could be one large space to accommodate a wheelchair or other adaptive equipment, making getting into and out of car much easier.
The cost of driverless car will be an initial barrier to their uptake by people with disabilities, but as use of driverless cars increases, the cost will be driven down. In fact Travis Kalanick, CEO of Uber, has said that his taxi fleet will be completely driverless by 2030, by which time he expects Uber services to be so ubiquitous and cheap as to make car ownership obsolete.
William Levack is an Associate Professor of Rehabilitation at the Rehabilitation Teaching & Research Unit, Univerity of Otago, Wellington, New Zealand. Twitter: @DrLevack
Two outstanding international pioneers in their respective fields of rehabilitation medicine will deliver the keynote addresses at the forthcoming AFRM/NZRA Combined Rehabilitation Meeting.
Associate Professor Barbara Gibson from the University of Toronto will deliver the Norington Lecture on 14 October at the AFRM/NZRA Combined Rehabilitation Meeting.
Associate Professor Gibson is a physical therapist with a PhD in bioethics. She is also a Senior Scientist at the Bloorview Research Institute at the Holland Bloorview Kids Rehabilitation Hospital where she directs the Critical Disability and Rehabilitation Studies (CDARS) unit.
The Norington Lecture is named in memory of the late Bradney Norington, CBE, the first President of the Australian College of Rehabilitation Medicine (ACRM). During his medical studies at Sydney University, Dr Norington developed acute poliomyelitis and was severely affected by extensive severe residual paralysis, restricting him to life in a wheelchair. However, he graduated and went on to work and study in rehabilitation around the world.
Associate Professor Gibson said she was honoured to be invited to deliver the Norington Lecture and will speak on the debate over the fundamental purposes of rehabilitation.
“Rehabilitation has been experiencing a philosophical shift as there is less of a focus on normalising people’s bodies and impairments and an increasing emphasis on the facilitation of functional activities and community participation. There remains, however, considerable debate regarding what constitutes ‘good’ outcomes for people with disability. These debates come down to questions of the norms and values we hold within the rehabilitation community. For example, many of our outcome measures assume a direct link between functional abilities and quality of life, yet this link has been shown to be deeply flawed.”
She also said that she has an interest in both physiotherapy and philosophy and the two disciplines come together in her work.
“When I began my career as a physiotherapist, I suppose I was naturally drawn to the ethical and philosophical issues that arose in practice. In particular, my experience working in a paediatric intensive care unit, where life and death decisions were made based on judgments of future quality of life with a disability, served as a catalyst for me to pursue a research career that could focus on exploring the ethics of such practices.”
In her presentation, Associate Professor Gibson will address the issue of professionals’ and clients’ expectations of ‘rehabilitation’.
“The gradual shift in rehabilitation philosophies from a focus on impairment to participation is not always transparent to the recipients of care and may conflict with their own values and goals. In an era of ‘client and family centred care’ interventions are ostensibly meant to focus on client values, and yet there is a paucity of research investigating how these values align with rehabilitation norms and priorities.”
Associate Professor Gibson says there’s still a great deal of emphasis on achieving ‘normal’ movement and mobility which may not always be the answer.
“Enabling mobility is a primary focus of rehabilitation, and yet larger questions about hierarchical valuing of some forms of mobility over others, and the effects on the recipients of care, are largely absent. For example, walking is considered a better outcome than wheeling in almost all rehabilitation practices and measures. Perhaps more provocatively, an alternative mobility like crawling would be viewed as a ‘failure’ of rehabilitation and/or a personal ‘tragedy’. Nevertheless there are adults who will tell you that their preferred mode of mobility is crawling. I [in the lecture] will explore the opportunities for creative practices that arise when assumptions regarding ‘good’ or ‘bad’ mobility outcomes are reconsidered.”
Professor Derick Wade, a consultant in Neurological Rehabilitation at the Oxford Centre for Enablement in the UK, will deliver the George Burniston Oration on Wednesday, 14 October at the AFRM/NZRA Combined Rehabilitation Meeting.
The George Burniston Oration is given every year to honour the late George Burniston, OBE, CMG. Dr Burniston was born in 1914 and graduated in medicine from the University of Sydney in 1939. He served with the RAAF and the RAF during the Second World War. Dr Burniston established and commanded the No 2 RAAF Medical Rehabilitation Unit at Jervis Bay in 1944. He was one of the great pioneers of rehabilitation medicine in Australia and was awarded an OBE in 1969 and a CMG in 1972 for his services in the field of rehabilitation of the handicapped. He died in 1992 at the age of 77.
Professor Wade is also considered a pioneer in the rehabilitation field. He trained in general medicine as well as several specialties including neurology, neurosurgery, psychiatry and neurophysiology. He has been researching stroke and rehabilitation for the past 35 years.
Professor Wade said there have been many achievements since he began his research.
“Since 1980, we’ve achieved the recognition that measured outcomes and randomised controlled trials are possible in rehabilitation, even though at the time, they were considered impossible.
“During my career there has been a surge of rehabilitation research, led by stroke research, and the recognition that stroke rehabilitation (in stroke units) is cost-effective. This has been combined with the development of meta-analysis, systematic reviews and multi-centre trials.”
He also said there are several challenges in the area of stroke rehabilitation.
“The major challenge is to overcome the dominance of the biomedical model of illness, and to reduce the focus on disease and technology towards disability and the patient. We need to explain what rehabilitation is (and is not) and can achieve (and cannot achieve) and gain recognition that rehabilitation is a very complex matter, not just ‘therapy’.”
Professor Wade’s research activities cover a wide area. He has published over 170 papers in peer-reviewed journals on many different studies, including 12 randomised controlled trials and studies on the natural history of illness in disabling neurological conditions. He is currently working on four trials and hopes to set up several trials in China, which may include Chinese massage and feedback to encourage movement.
He says his approach to rehabilitation is holistic.
“I believe in focusing on the patient’s perspective; considering the illness at different, equally relevant levels; weighing up all the contextual factors and accepting that relationships between factors are complex.”
Professor Wade says he is looking forward to sharing his knowledge at the AFRM/NZRA Meeting in October.
“I hope to persuade delegates that we must alter the environment in hospitals so that it does not further disable people. I will warn that not using the biopsychosocial, holistic model will lead to a failure of rehabilitation both as a specialty, and for individual patients.
“I will also stress that understanding the patient’s perspective is essential so that relevant motivating goals are set and that patient practice and engagement in the process is central.
“I will outline my belief that healthcare should have a rehabilitation service that runs in parallel with healthcare from the outset,” Professor Wade concluded.
Systematic reviews, which once upon a time were new and unfamiliar, have now proliferated and are commonplace. Where once it was difficult to read all the clinical trials published on a given topic, it is now a challenge to just get through all the systematic reviews that have been written! In response to this, the Cochrane Collaboration (which all New Zealanders can access for free via the Ministry of Health website) has begun publishing Cochrane Overviews. These are, in essence, systematic reviews of systematic reviews.
One excellent example of a Cochrane Overview is a recent publication by Pollock and colleagues (2014) entitled “Interventions for improving upper limb function after stroke.” For this overview, Pollock et al. collected, critically appraised, and combined the findings from 40 complete systematic reviews on various interventions for hemiplegic arms and hands after stroke. This includes 19 Cochrane reviews and 21 published non-Cochrane reviews. The review covers 18 individual interventions, including investigation of dosages (e.g. frequency and intensity of exercise) and the setting for intervention.
So how useful are these new types of reviews? What can a Cochrane Overview actually tell us about therapies for people with upper limb hemiplegia after stroke? In fact it would appear quiet a bit! Here is summary of some of the key findings from Pollack et al.'s (2014) review:
The review concluded that there was still considerable room for improving the quality of research trials into upper limb therapies, and in particular into determining the optimal intervention dose for arm rehabilitation.
Pollock et al. (2014) Interventions for improving upper limb function after stroke. Cochrane Database of Systematic Reviews. Issue 11. Art. No.: CD010820. DOI:10.1002/14651858.CD010820.pub2.
Popular culture plays a significant role in how the general public views disability. Representations in the media influence how people think about impairments, and therefore how they act towards people with differences in body structure and function. If impairments are presented in movies as something to be feared or despised, then people will learnt to fear and despise them, with these attitudes (and subsequent behaviour) contributing to everyday disabling experiences for others.
Recently, I was playing a free online game, Facility Z, in which the ‘twist’ at the end involved discovering some guy in a wheelchair as the villain of the story (i.e. the evil scientist in a wheelchair cliché). This got me thinking about all the times that people with disabilities have been villains in movies, books, and games. (Of course, people with impairments are frequently the heroes in these stories too, raising other questions about the role of the ‘super crip’ in popular media, but I’ll save that discussion for another day.)
Disability is often presented in these stories as representing ‘otherness’, with authors of these games, books, and movies using disability in an attempt to make their hero’s nemesis more scary. This presents people with impairments as being ‘not like us’ and therefore objects of uncertainly and a potential threat. Negative stereotypes, discriminatory views of disability, and able-bodied people’s fear of the unknown are used as tools of convenience by the author to drive the story’s narrative. Examples of this include Dr Strangelove (in a wheelchair) and Dr No (with mechanical hands) from the James Bond franchise, and Davros, creator of the Daleks, from Doctor Who.
Other times authors use disability as a justification for why the villain in a story turned bad. The disability becomes a plot point. Perhaps the villain has been seeking a cure for their impairment and as a result of an experiment going ‘horribly wrong’ the otherwise well-intentioned antagonist turns ‘bad’. Inevitably the usually able-bodied hero has to rescue the villain from themselves, or save other people from them, perhaps unwillingly destroying the villain in the process. Here, disability is presented as the origin of evil; an explanation why people with good intentions might go bad. An example of this type of villain is Spiderman’s nemesis, the Lizard, who turned into a superhuman monster after daring to dabble with reptilian DNA in an attempt to grow back his amputated arm. Another example is the character Blizzard in the 1920's silent film classic, The Penalty, the plot of which, according to Wikipedia, is as follows: "Driven insane by the social pressures of being forced to walk on crutches, (bilateral amputee) Blizzard becomes a crime lord. He tracks down the doctor who performed his operation, and plots a twisted revenge: kidnap the doctor's daughter's fiance, and graft his legs onto Blizzard's stumps."
But in an inclusive world, people with disabilities should have every chance of being the villain as they do of being the hero in these stories. Is it possible then for a person with impairments to be the villain of a story, but where their impairment is incidental to the plot? I've wondered whether one movie character has recently achieved this – Bolivar Trask from “X-men: Days of Future Past”. Played by Peter Dinklage (fresh from massive popular acclaim as the anti-hero, Tyrion Lannister, in Game of Thrones) Trask is the evil scientist who takes it upon himself to defend humanity by creating giant robots designed to hunt down and kill the growing mutant superhuman population (the X-men and their community; i.e. the heroes of the story). Interestingly, Bolivar Trask in the original X-men comic book on which the movie is based, did not have a height restricted disorder. But because Dinklage (the actor) has achondroplasia, Trask (the character) is also restricted in height. Sure, the introduction of a Trask with dwarfism in the movies adds an interesting element to his character, but this is utterly incidental to Dinklage’s massive onscreen presence, which is what brings Trask to life for the audience. With a recent resurgence of criticism of able-bodied actors playing disabled characters, it is very refreshing for the movie casting to head in the other direction for a change.
© 2015 New Zealand Rehabilitation Association, Inc.