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.
No higher risk of pregnancy complications in women with MS – study
Women with multiple sclerosis (MS) may not be at a higher risk of pregnancy complications like gestational diabetes, emergency caesarean section or stillbirth than women who do not have the disease, new research has found.
However, the study did find that babies born to mothers with MS had a higher chance of being delivered by elective caesarean section (c-section) or induced delivery, and of being small for their age when compared to babies of women who did not have the disease.
“Women with multiple sclerosis may be understandably concerned about the risks of pregnancy,” says study author Professor Melinda Magyari, of the University of Copenhagen.
“While previous research has shown there is no higher risk of birth defects for babies born to women with MS, there are still a lot of unknowns around pregnancy and MS.
“We wanted to find out if women with MS are at risk for a variety of pregnancy complications.
“We found overall their pregnancies were just as healthy as those of the mothers without MS.”
The study involved 2,930 pregnant women with MS who were compared to 56,958 pregnant women without MS. All women gave birth between 1997 and 2016.
Researchers found no difference in risk of several pregnancy complications between women with MS and women without it.
No differences were found in risk of pre-eclampsia, gestational diabetes, placenta complications, emergency c-section, instrumental delivery, stillbirth, pre-term birth, congenital malformations or low Apgar score. Apgar score is a test of a newborn’s health, including measures like heart rate, reflexes and muscle tone immediately after birth.
Researchers did find that 401 of the 2,930 women with MS, or 14 per cent, had an elective c-section, compared to 4,402 of the 56, 958 women without MS, or eight per cent, who had an elective c-section.
After adjusting for other factors that could increase the likelihood of having an elective c-section, such as prior c-section and mother’s age, women with MS were 89 per cent more likely to have an elective c-section.
Researchers also found women with MS were 15 per cent more likely to have an induced delivery than women without the disease.
Also, women with MS were found to be 29 per cent more likely to have babies that were born small for their gestational age compared to women without MS.
Overall, 3.4 per cent of women with MS had babies small for their gestational age, compared to 2.8 per cent of women without MS.
“We think the reason more women with MS have babies by elective c-section or induced delivery may have to do with MS-related symptoms such as muscle weakness, spasticity or fatigue that might affect the birth,” Professor Magyari says.
“Any of these could make a mother more tired and lead to delivery complications that could prompt the clinician and woman to take extra precautions.”
Researchers also found that mothers with MS were 13 per cent less likely to give birth to babies with signs of being deprived of oxygen, or asphyxia.
Professor Magyari said the higher prevalence of elective c-sections among women with MS most likely explains the corresponding lower odds of asphyxia.
A limitation of the study is the lack of data on the mothers’ smoking, which could cause babies to be born small for their gestational age.
Community neurorehab gym continues to expand
A community therapy centre which enables neuro patients access to the physio-led exercise which can support their recovery continues to expand in response to demand for its services.
West Berkshire Therapy Centre was opened in 2014 to bridge the gap in existing community resources, and initially opened for 20 hours a week with ten items of equipment.
Since that time, the Thatcham centre has expanded into premises twice the size of its initial home, and now has 17 items of equipment which clients can access 35 hours each week.
While the centre has been forced to close during lockdown periods, the investment in its offering has continued, with a further £17,500 being spent to upgrade equipment.
In addition to its regular clientele of around 260 people, around 200 more will be referred to the centre from the Berkshire Long COVID Integrated Service, led by Dr Deepak Ravindran, who has worked closely with the centre for several years.
As well as the anecdotal evidence from clients who attest the positive effect West Berkshire Therapy Centre has, the centre’s work has been proven to improve client mobility by an average of ten per cent, psychological outlook by 15 per cent and weight loss by three per cent.
All clients are assessed by the centre’s physio before being prescribed an individual exercise programme. The centre prides itself on its client-centred approach and some of the equipment in the gym has been designed and built specifically in response to what clients said were important to them.
West Berkshire Therapy Centre was created by the West Berkshire Neurological Alliance, a group of 23 local neuro charities, which recognised the need for greater specialist provision for people living with neurological conditions in the area.
John Holt was instrumental to the creation of both the Alliance and the Centre. Having supported his wife in living with MS for over 40 years, he took the lead on ensuring greater provision and support was there for those who needed it.
“I’m not from a medical background, I’m a food technologist, and while I was chair of a trade association during my career, I was used to working with competitors and business enemies, that was just what happened for the greater good of us all,” he says.
“So I was rather shocked when I got involved with the local voluntary sector and found that wasn’t the case. I was very proactive in all of our charities working together as I know the importance of working as one alliance.
“People who were living with neurological conditions were often having to fend for themselves when it came to community rehab, and that’s why we wanted to create the West Berkshire Therapy Centre.”
Having been established on the back of £145,000 in fundraising, five years later the demand for its services was such it had to expand into larger premises and invest in more equipment.
The centre – which is funded by voluntary contributions for sessions and through fundraising – now has eight part-time staff and a core of volunteers to support clients with whatever rehabilitation issues they have.
While most clients have neurological conditions – including stroke, Parkinson’s, MS and Post-Polio Syndrome – the centre has broadened its reach to include large numbers of people with arthritis, heart and lung conditions, sight impairments as well as amputees.
“We’re completely pan-disability and will support anyone who needs us. Our clients talk to us and we listen and adapt,” says John.
“I think many clients come to us because we are a safe place for them and they’re among people who understand the challenges they face.
“It is very important that we talk about things openly. For example, we talk about how hard it is when you can’t get to the bathroom in time and you wet yourself.
“When you face issues like that, it can be the start of a spiral downhill, you might then stop going to work or stop leaving the house, but we share these kinds of things.
“By having this interaction, it becomes a place people aren’t afraid to open up.”
With the centre having been closed for much of the past year, John and the team are ready to welcome back regular and new clients, including the many who are recovering from Long COVID.
“Many of our clients won’t have exercised for several months, but we hear very often that people have waited 20 years for a centre like this, so a few months hasn’t been long in comparison,” says John.
“But we are very much looking forward to re-opening and supporting our clients in regaining any progress and fitness they may have lost. Hopefully we are on the right track now after three lockdowns and clients can come back to us regularly.
“Long COVID is a new condition for us, as it has only come into being in the past few months, but we are ready to support people with their symptoms and in them using exercise as part of their recovery.”
Brain tech company secures funding to increase support post COVID-19
An online brain assessment platform has secured funding to enable its work in telehealth to continue to support people as the world emerges from the COVID-19 pandemic.
Cambridge Brain Sciences (CBS) is planning to expand its operation through a funding round from Canadian Shield Capital, a Toronto-based private equity investment firm, closely aligned to Hatch, a global engineering consultancy.
The investment will allow Candian-based CBS to further its work in digital health, especially around mental health, and respond to the need for accurate and reliable quantified measures of brain function and brain health – hailed as being essential to so many people who have suffered psychologically from the effects of COVID-19.
The funds will allow CBS to grow its sales and customer support teams rapidly, which will enable it to roll out its flagship product, CBS Health, further.
It will also enable it to expand on CBS Health features to help continue to refine and develop its cognitive care platform for healthcare professionals treating the growing mental health, brain injury and ageing patient populations.
The COVID-19 global pandemic has seen many healthcare practitioners to adopt platforms such as CBS Health to manage patients remotely.
As a result of lockdowns and ‘stay at home’ guidance, there has been exponential growth in patients seeking treatment for mental health conditions brought on, or exacerbated by, the pandemic, as well as individuals recovering from COVID-19 suffering with longer term neurological symptoms.
CBS Health has also grown as a result, and offers a web-based platform or integration which allows healthcare professionals to administer the CBS tasks standalone or alongside other established and validated complementary assessments (such as the PHQ-9, a standard scale for assessing the severity of depressive symptoms).
Assessments can be combined into a single session and administered in person or remotely via email—an option from which clinicians have benefitted greatly throughout the COVID-19 global pandemic.
The investment also contemplates further collaboration between CBS and Hatch, building upon an earlier successful pilot for a dedicated CBS platform to address corporate workplace mental health and safety at large scale industrial operations, construction sites and infrastructure projects.
“CBS is excited to be closing this round of financing which builds upon a long-term relationship with Canadian Shield and an earlier successful pilot with Hatch,” says Marc Lipton, president and CEO of Cambridge Brain Sciences.
“The funding will allow us to further accelerate the growth of our core CBS Health product especially amongst mental health practitioners, as well as to strategically explore, with Hatch, large corporate applications for workplace mental health and safety.”
“CBS brings many years of academic discipline and rigorous digital measurement of cognitive health, with applications in mental health, brain injury recovery, healthy ageing, and soon workplace safety,” says Andrew W. Dunn, managing partner at Canadian Shield Capital.
“The growing awareness of, and attention to, mental health conditions and CBS’ engaging and efficient approach gives it enormous runway.”
James Marzocca, global managing director for project delivery at Hatch, adds: “We see great potential to apply CBS testing as a non-invasive diagnostic to assess fitness for duty for individuals reporting to worksites where mental alertness is essential for their own safety and the safety of others.”
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