Despite 30 years of research, not a single therapy has been found to successfully delay or stop the progression of Parkinson’s Disease (PD), a slowly progressive disorder that affects movement, muscle control and balance.
It is the second most common age-related neurodegenerative disorder affecting about three per cent of the population by age 65, and up to 5 per cent of individuals over the age of 85.
Each potential cure for PD has to go through three clinical trial phases to test its safety, whether it shows signs of improving PD, and whether there is any meaningful benefit to people with PD.
Running a clinical trial is a huge logistical, costly, and time-consuming undertaking. For a single new therapy this process can take the best part of a decade.
“The current way we do trials in Parkinson’s is too slow and inefficient,” explained Camille Buchholz Carroll from the Applied Parkinson’s Research Group at the University of Plymouth.
“We need to develop new ways of doing trials such as the Multi Arm Multi Stage (MAMS) trial platform, which will speed up the process and bring us closer to finding a cure, faster. We have the opportunity to learn from the experience in these other conditions and design a new trial that will work for people with Parkinson’s.”
MAMS trial platforms already exist for prostate, renal, and oropharyngeal cancer and are currently being developed within the UK for other neurogenerative disorders such as progressive multiple sclerosis (PMS) and motor neuron disease (MND).
MAMS trials test many potential therapies in parallel (multi-arm), transitioning seamlessly through various phases (multi-stage), i.e., from a phase II safety and efficacy study to a phase III trial.
Early analyses allow unsuccessful therapies to be replaced. At the interim checkpoint, ineffective arms can be dropped and replaced by new treatment arms, thereby allowing for the continuous evaluation of interventions.
Dr. Carroll and colleagues explore how the challenges of drug selection, trial design, stratification and outcome measures, type and stage of PD to be tested have been met in promising MAMS trials instituted to address other diseases including the STAMPEDE trial; Motor Neuron Disease Systematic Multi-Arm Adaptive Randomized Trial (MND SMART]; and UK MS Society’s 2018-2022 Research Strategy.
“There are many promising drugs in the pipeline that have potential to slow down the progression of PD but taking that hypothesis to the test is still a long and cumbersome process,” notes Prof. Bas Bloem, co-editor-in-chief of the Journal of Parkinson’s Disease.
“The new approach described holds great promise for facilitating this complex procedure, so that we can gather the necessary evidence for new treatments much quicker than before. Patients will certainly applaud this development as well!”
The authors stress that to maximise the potential of a MAMS platform trial running over many years and interrogating many research questions, it is crucial that there is a pipeline in place that will continuously identify and evaluate suitable drug candidates.
Furthermore, outcome measures have to be chosen that are sensitive enough to changes in disease progression over interim stages as well as the full duration of the trial.
Other studies are taking different approaches to relieve the symptoms of Parkinson’s disease. For example, biomedical engineers at Duke University have used deep brain stimulation based on light to treat motor dysfunction in an animal model of the disease.
Succeeding where earlier attempts have failed, the method promises to provide new insights into why deep brain stimulation works and ways in which it can be improved on a patient-by-patient basis.
“If you think of the area of the brain being treated in deep brain stimulation as a plate of spaghetti, with the meatballs representing nerve cell bodies and the spaghetti representing nerve cell axons, there’s a longstanding debate about whether the treatment is affecting the spaghetti, the meatballs or some combination of the two,” said Warren Grill, the Edmund T. Pratt, Jr, school distinguished professor of biomedical engineering at Duke.
“But it’s an impossible question to answer using traditional methods because electrical deep brain stimulation affects them both as well as the peppers, onions and everything else in the dish. Our new light-based method, however, is capable of targeting just a single ingredient, so we can now begin teasing out the individual effects of activating different neural elements.”
“Neurons being stimulated with optogenetics don’t generally respond very quickly, and it seemed to me that the researchers [in a previous study] were flashing their lights faster than the neurons could keep up with,” said Grill. “The data bore this out, as the neurons appeared to be responding randomly rather than in sync with the flashes. And previous research that we conducted showed that random patterns of deep brain stimulation are not effective at relieving symptoms.”
It took more than a decade for Grill to be able to test his theory, but two recent developments allowed him to follow his hunch. Researchers developed a faster form of optogenetics called Chronos that could keep up with the speeds traditionally used in deep brain stimulation.
And Chunxiu Yu, a research scientist with expertise in optogenetics, joined Grill’s laboratory. Also contributing to the work in Grill’s laboratory were Isaac Cassar, a biomedical engineering doctoral student, and Jaydeep Sambangi, a biomedical engineering undergraduate.
In the new paper, Yu embedded the Chronos optogenetics machinery into the subthalamic nucleus neurons of rats that have been given Parkinson’s disease-like conditions in one-half of their brains. This model helps researchers determine when a treatment is successful because the resulting physical movement symptoms only occur on one side of the rat’s body.
They then delivered deep brain stimulation using light flashes at the standard 130 flashes per second.
As Grill first suspected nearly 15 years ago, the technique worked, and the rats’ physical symptoms were substantially alleviated.
Perhaps the most important result is simply that the technique worked at all. Besides offering a much clearer look at neural activity by removing electrical artifacts, the ability to deliver deep brain stimulation to precise subsets of neurons should allow researchers to begin probing exactly which parts of the brain need to be stimulated and how therapies might be tailored to treat different motor control symptoms on a case-by-case basis.
As their next experiment in this line of research, Grill and his colleagues plan to recreate this same study but in the hyperdirect pathway – the spaghetti instead of the meatballs – to see what its individual contribution to relieving symptoms might be.
Elsewhere, Parkinson’s disease researchers have used gene-editing tools to introduce the disorder’s most common genetic mutation into marmoset monkey stem cells and to successfully tamp down cellular chemistry that often goes awry in Parkinson’s patients.
The researchers used a version of the gene-editing technology CRISPR to change a single nucleotide – one molecule among more than 2.8 billion pairs of them found in a common marmoset’s DNA – in the cells’ genetic code and give them a mutation called G2019S.
In human Parkinson’s patients, the mutation causes abnormal over-activity of an enzyme, a kinase called LRRK2, involved in a cell’s metabolism. Other gene-editing studies have employed methods in which the cells produced both normal and mutated enzymes at the same time. The new study is the first to result in cells that make only enzymes with the G2019S mutation, which makes it easier to study what role this mutation plays in the disease.
“The metabolism inside our stem cells with the mutation was not as efficient as a normal cell, just as we see in Parkinson’s,” says Marina Emborg, professor of medical physics and leader of University of Wisconsin-Madison scientists , whose work is supported by the National Institutes of Health.
“Our cells had a shorter life in a dish. And when they were exposed to oxidative stress, they were less resilient to that.”
The mutated cells shared another shortcoming of Parkinson’s: lacklustre connections to other cells. Stem cells are an especially powerful research tool because they can develop into many different types of cells found throughout the body.
When the researchers spurred their mutated stem cells to differentiate into neurons, they developed fewer branches to connect and communicate with neighboring neurons.
Scientists have long known that clumps of a damaged protein called alpha-synuclein build up in the dopamine-producing brain cells of patients with Parkinson’s disease. These clumps eventually lead to cell death, causing motor symptoms and cognitive decline.
“Once these cells are gone, they’re gone. So if you are able to diagnose the disease as early as possible, it could make a huge difference,” says LJI research assistant professor Cecilia Lindestam Arlehamn, Ph.D., who served as first author of a new study co-led by scientists at the La Jolla Institute for Immunology (LJI) which adds increasing evidence that Parkinson’s disease is partly an autoimmune disease.
The research could make it possible to someday detect Parkinson’s disease before the onset of debilitating motor symptoms–and potentially intervene with therapies to slow the disease progression.
The new findings shed light on the timeline of T cell reactivity and disease progression. The researchers looked at blood samples from a large group of Parkinson’s disease patients and compared their T cells to a healthy, age-matched control group.
They found that the T cells that react to alpha-synuclein are most abundant when patients are first diagnosed with the disease.
These T cells tend to disappear as the disease progresses, and few patients still have them ten years after diagnosis.
The researchers also did an in-depth analysis of one Parkinson’s disease patient who happened to have blood samples preserved going back long before his diagnosis.
This case study showed that the patient had a strong T cell response to alpha-synuclein ten years before he was diagnosed with Parkinson’s disease. Again, these T cells faded away in the years following diagnosis.
“This tells us that detection of T cell responses could help in the diagnosis of people at risk or in early stages of disease development, when many of the symptoms have not been detected yet,” says professor Alessandro Sette who co-led the study.
“Importantly, we could dream of a scenario where early interference with T cell responses could prevent the disease from manifesting itself or progressing.”
Sulzer added: “One of the most important findings is that the flavour of the T cells changes during the course of the disease, starting with more aggressive cells, moving to less aggressive cells that may inhibit the immune response, and after about 10 years, disappearing altogether.
“It is almost as if immune responses in Parkinson’s disease are like those that occur during seasonal flu, except that the changes take place over ten years instead of a week.”
Here in the UK, neuroscientists at York University have found five different models that use types of non-motor clinical – such as sense of smell, frequently dozing off or thrashing about during dreams – as well as biological variables to more accurately predict early-stage Parkinson’s disease.
Their five-model analysis is one of the first utilising only non-motor clinical and biologic variables. Some models performed better than others but all distinguished early stage (preclinical) Parkinson’s disease from healthy, age-matched controls, with better than 80 per cent accuracy.
The models may assist in more timely administration of future treatments as they become available, according to the study published in Frontiers in Neurology today.
In the study, two separate analyses were conducted: one for the classification of early Parkinson’s disease versus controls, and the other for classification of early Parkinson’s versus SWEDD (scans without evidence of dopamine deficit).
The term SWEDD refers to the absence, rather than the presence, of an imaging abnormality in patients clinically presumed to have Parkinson’s disease.
Facilitated and more accurate prediction of early-stage, de novo Parkinson’s can allow those positively diagnosed to adopt lifestyle changes such as regular physical exercise early on that can improve mobility and balance, says Joseph DeSouza, associate professor of the Department of Psychology at York University.
Researchers used cross-sectional, baseline data from the Parkinson’s Progressive Markers Initiative (PPMI).
The PPMI data used was confined to non-motor clinical variables (e.g. sense of smell, daytime sleepiness, presence of rapid eye movement behaviour disorder, age, etc.) and biologic variables (e.g. cerebral spinal fluid alpha-synuclein, tau protein, beta-amyloid-142, etc.)
Five different model types were “trained” models that could prove useful in helping to differentiate early stage Parkinson’s pathology.
Looking on the bright side
Game changing neuro-rehab opportunities are emerging as a result of the coronavirus crisis, argues health and social care investment expert Boda Gallon.
The Impact of the Covid-19 pandemic has been multi layered. Yes, we’re faced with a fragmented health and social care system, continued uncertainty, and a gloomy economic outlook. There are, however, positive opportunities for investment and service redesign within NR and the wider specialist healthcare marketplace.
Increased investment interest for this most resilient of sectors, combined with a clearly identified need for positive change, should drive the creativity needed to embrace opportunities and deliver the much needed integration, improved productivity and efficiency of services across health and social care.
This positive outlook, however, still comes with a need to understand changes in our behaviour, to embrace change, to break down cultural barriers and focus on opportunity planning.
All of which is much easier said than done. A key lesson that has been brought home to us during the Covid-19 pandemic is that heroes are people. Ordinary, but extraordinary, people.
Once we get past fighting fires and lockdown fever most experts agree that things will never be the same. The key reason for this can be found in our primal brain and how we act and continue to live under a state of fear.
The neuroscientific term for this is “a somatic marker,” as coined by Antonio Damasio. I believe that Covid-19 is a negative somatic marker that we’ve
all had installed in our brains over the past several months and is likely to have a powerful, lasting impact on how we behave, but also a positive impact on the aspects of the cultural changes required for the health and social care marketplace to develop.
Change needs to go deeper, and Covid-19, as our generation’s negative somatic marker, is probably the best reason to change we will ever witness.
Covid-19 could also finally be the catalyst for the political will required to drive the full integration and parity between health and social care. It is no real surprise to find the recent disclosure of Camilla Cavendish’s plans that social care could be brought under the control of the NHS to honour Boris Johnson’s pledge to “fix the crisis in social care”.
This will also present opportunities and require new ways of working for people, but this will ultimately drive better and more seamless service experiences for all our patients, clients, residents, customers and consumers.
We are going to find ourselves in an entirely new online environment, with an entire generation of consumers and service commissioners expecting to interact via screens and having the aspiration and confidence of services being delivered in a ‘Covid-19 free’ environment.
This new virtual hybrid world will need to be delivered with empathy to help everyone overcome the negative Covid-19 somatic marker and still meet the basic human needs for relationships, touch and social interaction.
The perceived threat of Covid-19 does not mean that new services cannot be launched or repositioned. The opportunity is to develop more flexible services able to meet all the new behavioural, political, and environmental drivers of the ‘Covid-19 game changer’.
Providers and their people need to respond to this opportunity and reposition from fighting fires and coping around how things have always been, to repositioning ahead of the curve and innovating services towards what will be a new normal.
To date the adoption of digital technology to help improve productivity and efficiency across the system has often faced multiple cultural barriers, with people often sabotaging initiatives as they either feel their role, profession or revenue streams are threatened.
Covid-19 has forced everyone to look at the current barriers in a virtual way and employ different ways of working. Hopefully, this perceived threat now presents a clear opportunity for providers and professionals to deliver complimentary and long-term hybrid solutions for their clients and staff teams that embrace the best of digital and face to face interventions, training and support.
The delivery of community rehab has always faced productivity and efficiency challenges relating to logistics and the supply of and access to suitably skilled professionals, especially in more rural and harder to reach communities.
The proposed long-term somatic marker of Covid-19 now requires services and providers to be nimble to create longer term holistic solutions of their own, coordinating the much- fragmented array of technology options.
There is a need to embrace AR/VR/AI/IOT and to learn from and adopt best practice solutions from the UK and abroad to ensure much-needed efficiency, productivity and value are provided at the same time.
The positive outcome of this burgeoning digital transformation, like Covid-19, is also multi layered.
Offering a renewed focus on flexible working, employee support, management and an array of ‘wellbeing’ opportunities for staff recruitment and retention.
This digital transformation is most keenly required to help support and shape the future of various healthcare settings.
Existing commissioning and strategic planning intentions were already focused on provision away from hospitals and more institutional environments towards community settings with more holistic and social models of care.
The impact of Covid-19 will now hopefully see this process accelerated.
Although the wider roll-out of Covid-19 testing and potential vaccines is critical, providers need to review how the design and operation of care homes can be focused on delivering a ‘Covid-19 free’ moniker.
Enlightened providers need to ensure that cross infection mitigation and the flow of people, process and supplies are given an increased priority. The ability to offer digital triage and re-establish a more effective working relationship with GPs and primary care is essential to plan both avoidable admissions to and discharges from hospital and to provide the level of clinical support that has so often been missing during this pandemic.
Repositioning care homes from what has been perceived as the riskiest place for people to be towards being the safest environment possible has to be a clear goal; as well as a PR opportunity.
A focus on delivering flexible and safe space within residential services is essential to provide for increased independence, community and family integration and improved social inclusion.
New building designs in development need to respond to this now, and existing services will need to take a more strategic review of their estate for the medium and longer terms.
New models of care already seeking to deliver coordinated pathways from hospital to home, need the potential integration of health and social care to truly flourish and develop, but the vision must not stop there.
The extended integration and creative use of housing options is essential along with digital transformation to maximise potential clinical and financial outcomes and deliver the best quality of life for people. There is a lot to be learned from each other.
Previously fragmented sectors need to look vertically up and down patient pathways and supply chains, flex their services, upskill and share staff, embrace elements of isolated good practice and design into their own facilities and services.
Embrace the somatic change
To maximise value together, disruptive innovation driven by Covid-19 needs to be embraced. The independent sector can fully support NHS strategy by complimenting the NHS and building on the many successful collaborative partnerships developed during this pandemic.
Significant public goodwill and the potential political momentum to finally drive health and social care integration can now be leveraged to force past the multiple barriers to change.
Opportunity exists for game changers willing to take advantage of keen investor interest for a market that has proven to be the most resilient in the face of a global pandemic.
This inward investment into our sector can only be a further benefit forcing much needed change, new competition and opportunity to drive service innovation.
Ultimately and most importantly this will deliver better impacts and outcomes for service users, their families, and our colleagues.
We cannot afford to stand still and need to respond to the wider behavioural impacts of Covid-19 to reposition services, partnerships and networks to ensure new models of care and rehabilitation are (re)designed and delivered in more flexible and digital enabled environments.
This will ensure that proactive providers can truly respond to the future needs of customers, service commissioners and an emerging new normal to deliver even stronger, sustainable business models.
Proactive and future proofed business models are what any Investor from owner operators, to specialist private equity and bank funders will be looking to support and develop.
Hopefully, this article will help stimulate some debate and more ideas so we can share best practice and experience together.
How brother’s suicide was the catalyst for groundbreaking TBI work
People who’ve had a traumatic brain injury (TBI) are three to four times more likely to have suicidality, which includes serious thoughts about taking one’s own life, suicide plans and suicide attempts.
Alyson Norman, lecturer in clinical and health psychology at the University of Plymouth, decided to interview 19 people with TBI from a brain injury rehab unit in New South Wales, Australia, to better understand this.
In her subsequent research paper ‘Living with suicidality following TBI’, published in the journal Brain Injury, she outlined some common themes. Participants experienced a loss of sense of self and chronic, but transient, suicidality, regardless of the person receiving long-term support.
But she also found that they engaged with protective factors, such as social support and spirituality. Implementing these as coping strategies during long-term rehab, she urges, may reduce the levels of suicidal distress.
Norman has noticed a few high profile international studies in the last few years highlighting that the rates of suicidality among people with TBI is particularly high, and that we’re lacking understanding of what that’s like for people on the ground and what protective factors might help them come out other side of their suicidality.
“We need to know the protective factors, how we can people through this. Although the findings are bleak, there are also positives – having spirituality and a sense of independence is important in getting people through the other side of suicidal thoughts.”
It took Norman nine months to go through 20 transcripts to look for themes.
“One of the saddest conclusions from the paper was one of the things that was protecting people from fulfilling their suicidal thoughts was that they often didn’t feel physically capable,” Norman says.
“They were concerned they wouldn’t be able to because of their physical disability. But as sad as that was, it wasn’t a huge surprise to me.”
That’s because Norman’s own brother, Tom, took his life six years ago aged 43.
“He said this to me several times,” she says.
Norman has just written a book about her brother, ‘Life and suicide following brain injury’.
She says she was never interested in writing about her brother’s story simply for the sake of telling it, but when she became involved in research looking at communities, she became aware that his wasn’t an isolated story.
“He shared his story with a lot of people with brain injuries; my brother could provide a useful case study of what can go horribly wrong,” Norman says.
In 1993, when he was just 22, Tom was left with severe brain damage after a car accident. In her book, Norman writes about his childhood leading up to the accident.
“He had a series of mild traumatic brain injuries (TBI) in childhood, so he was already potentially exposed to some neurological difficulties, and was at high risk of having a more severe TBI,” Norman says.
Norman’s book describes her brother’s time in hospital in inpatient rehab and then in the community. After his injury, Tom suffered with mental health issues and long-term difficulties with substance misuse.
“There was a lack of community support, and poor interactions of social care, which culminated in his suicide in 2004.
“His story is also interwoven with how little we know in terms of how common these problems are, and reflections from my own private practice as a therapist working with people with family members with TBI.”
From the perspective of individuals and their family members, Norman says it’s important to help communicate to them that they’re not alone, and that other people are going through the same experiences.
“And that there are organisations, however few and far between, there to support people, raising awareness people with TBI have when accessing community services.
“It’s also about educating health professionals in community settings and social care settings to identify that they sometimes aren’t able, or don’t have the knowledge, to pick up on the difficulties people with TBI have, which can lead to them falling through the net, as was the case with my brother, with the hope that people will stop falling through those gaps,” Norman says.
Norman says funding is a problem, as well as a lack of knowledge. But the lack of knowledge, she says, is associated with a lack of training, which can be traced back to poor funding. And the infrastructure of adult social care, she says, needs to change.
“In adult social care, it’s become very difficult for people with long term care needs, as social workers are moved from case to case, rather than working on one case for a long time. That disconnect means there’s a constant turnover of staff, from whom it’s difficult to get to know clients and understand their specific needs.”
Because of the lack of support and services for people with TBI, families end of carrying a huge amount of the burden, she says.
Now that Norman has done qualitative, in-depth research, she knows she needs to get quantitative data to ‘show the significant numbers of people experiencing these problems’.
Why cultural competency should be woven into rehab training
Natalie Mackenzie and Eky Popat of brain injury rehabilitation service BIS Services on managing the cultural challenges in community rehabilitation.
Back in 2011 one of our team asked why there was a significant lack of consideration towards cultural differences within brain injury rehabilitation.
It was not the first time we’d heard this question, but it further sowed the seed for a topic that is persistent and pertinent within our working practices at BIS Services, and a matter for discussion and change that must continue throughout the field.
Most certainly, recent years have seen an increase in consideration and discussion regarding cultural competency and its importance in rehabilitation, which is reassuring, although the se are still challenges that we must continually consider.
Not just from the perspective of clients and their families but in our own recruitment, supervision and training practices.
For the purposes of this discussion, we must define our understanding and terminology of ‘culture’ so that we can best adapt our approaches.
For us, it is the ‘way of life’ of groups of people. Different groups may have different cultures. A culture is passed on to the next generation by learning, and is seen in people’s writing, religion, music, clothes, cooking, and in what they do.
Within the Merriam-Webster.com Dictionary it is defined as: “The outlook, attitudes, values, morals, goals and customs shared by a society. It is the integrated pattern of human knowledge, belief, and behaviour that depends upon the capacity for learning and transmitting knowledge to succeeding generations.”
Our own definition is key to understanding how we engage, motivate and most of all, persevere within cultural norms. What is most important to consider however, is that culture is ever evolving, and so must we be.
So, what are these challenges which we face in community rehabilitation? They are many and they are far reaching; from the initial matching of a rehabilitation assistant, to family integration, goal setting and attainment, functional transfer and psychological interventions, as well as long term engagement.
Our initial meetings with clients and their families must consider cultural differences from the outset, whether this be ethnicity, gender, age, education or any other classification under the umbrella. If the cultural needs and initial engagement of a client are not considered or appropriate, the impact may be long lasting.
We must ask what the different viewpoints are on brain injury within ones culture, and find a pathway of rehabilitation accordingly.
What does brain injury actually mean to others? What is the role of family? How is external assistance perceived? Practically, how do we manage not just language differences, but actual terminology. In many cultures there is no direct translation for brain injury or cognition, let alone a clear understanding of roles within rehabilitation.
Born in Nigeria and moving to the UK at the age of 18, and later sustaining a severe TBI, a client we have supported for many years provided us with some powerful views of brain injury in his culture.
This injury was sustained in 2001 and he still feels unable to visit his native country for fear of stigma. When asked to explain to us how his family and culture would perceive his injury he told us that TBI is viewed as a mentalillness,thereforethe person is “mad, dangerous, harmful, or contagious”. Families associate disability with shame, “as Gods will” or a punishment.
When individuals perceive injury in this fatalistic way, it can be difficult to engage them in rehabilitation. How can we have more power than divine intervention? That is a mountain to climb, but it can be done. What that means is we have to look at ways of bridging their cultural belief systems and incorporating different ways that families might want to access help.
They may want to access rehab, but at the same time, they may also want to engage in the use of prayer and their natural healers, and that’s something we should be respecting and incorporating as part of the
Stigma and exclusion can keep people from seeking help, for fear of exposing disability or bringing shame on the family. We have encountered this a number of times, only being sought out when the families are no longer able to cope and are at breaking point.
When those cultural roles have been altered to such an extent that there seems to be no way
out or no pathway of rehabilitation to follow.
One hopes that change can be made from the outset of rehabilitation, so we do not get to this point. Another consideration must also be on the cultural needs of our staff, and we have spent many a supervision where staff are conflicted regarding clientculturesversustheirown.
This takes many forms, from the most practical matters of diet, when we ask rehabilitation assistants to model, motivate and encourage shared meals for instance.
I recall fondly being introduced to a client’s family visiting from Kuwait and their insistence that I eat with them; declining was not an option, it would have been perceived as insulting and potentially impacted my therapeutic relationship with the client.
What a wonderful meal was had, sat crossed legged on the ground, full of dishes I would never have even attempted anywhere else alongside a whole generation, and what a natural insight into a culture very different from my own.
I learnt so much during that encounter that was incorporated into my programme with that client. I have had many RAs tell me of their clients instance that intestines or some delicacy are tried during meal preparation tasks, and their commitment to their clients to not offend despite their own views or cultural beliefs.
There has always been a strong theme around the challenges faced when working with individuals from varying socio economic backgrounds or with differing educational experiences; again this is where matching of RA to clients is key.
Shared experiences are important, and we often focus on finding a ‘hook’ to aid engagement whilst keeping those therapeutic boundaries.
When delivering brain injury education programs, we are constantly required to adjust
the content to suit the cultural backgrounds of our clients, to maximise positive outcomes and to encourage engagement; and so we should. We all know that in brain injury rehabilitation there is never a one size fits all approach.
It is important to be mindful and recognise cultural stereotypes when matching staff. For example, certain cultures have gender stereotypes and when matching with the right staff we should endeavour to ensure these and other stereotypes are not reinforced.
We must support our staff and ensure their own cultural needs are met alongside the clients, whether that be ensuring traditional festival practices are met, prayer times and fasting are considered, and factored into rota scheduling.
The same applies to clients; therapy appointments should not be made during these times and such matters respected and protected.
Supporting clients in their home is very intrusive and we must respect the clients cultural wishes and support the clients with their cultural customs, traditions and beliefs, and ensure that this is incorporated into rehabilitation.
Considerations need to be made regarding the impact of fasting or other traditions on fatigue and cognition and task planning and goal management plans adjusted accordingly.
Perhaps the biggest challenge we all face is recognising and acknowledging our own values and cultures, and not projecting these onto clients.
Why should we insist on certain goals or tasks if they are not in keeping with an individuals pre-morbid practices, beliefs or experiences? We should not.
Just because we may not perceive certain behaviours as safe, appropriate or functional, we must not assume it is the case for another individual and their family.
We must have more self-knowledge as providers in order to recognise our own specific prejudices, to manage them appropriately and avoid potential negative impact on client care.
We should all be curious, rather than judgmental; and actively listen. Really listen.
We cannot possibly cover all the challenges and issues we face here but we would encourage further reading and consideration of research. Saltapidas & Ponsford (2007) suggested that many rehabilitation models are not generally adapted to adequately meet the needs of patients from culturally and linguistically diverse backgrounds.
Niemeier et al (2007) justify the importance of cultural sensitivity in everyday provider interactions with minority clients and their families.
Their primary aim was to raise rehabilitation providers awareness of the unique difficulties faced by ethnically and racially diverse persons with TBI and secondly to offer practical recommendations for rehabilitation professionals who desire to improve the health outcomes of individuals from a minority living with a TBI.
Considering all the issues surrounding effective rehabilitation within different cultures, it seems
like the natural next step would be to educate those who are currently training and those who work in the field, and interact with patients daily, to be more sensitive and aware of those cultural differences.
We must all increase our cultural competency, through education, awareness, and collaborative family working, however we define culture.
Natalie Mackenzie is managing director at BIS Services. Eky Popat is operations director. The company provides cognitive rehabilitation and support services in the community for people living with a brain injury or neurological illness.
See more at www.thebiss.co.uk.
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