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.
Stroke survivors’ life quality greatly improved by arts – new book
Launching on World Stroke Day on 29th October, new publication Recovering Hope is the result of a decade of working with stroke survivors in hospitals and in the months following their release.
The book presents qualitative data and evidence from healthcare professionals, artists and stroke survivors into how a tailored arts intervention can assist in recovery and improve quality of life.
The book, written by Kevin Murphy, Lucinda Jarrett and Chris Rawlence from Rosetta Life, is the first output of SHAPER, the world’s largest study into the impact of arts on mental health launched by King’s College London and UCL.
The book lays out the history of the Stroke Odysseys project and explains how Rosetta Life works with stroke communities through movement, song, poetry and performance.
Alongside their methodology, evidence and testimonial is given into the therapeutic benefits of the programme.
Findings have shown that the Stroke Odysseys project can give participants a sense of being ‘free’, and researchers identified a key theme of ‘the importance of doing something new’ and ‘discovering something new about themselves’ which was rewarding and enabled people to imagine a new life after the trauma of brain injury.
Independent qualitative research and ethnographic evaluation found an increase in focus, memory, movement, and confidence, and an overall improvement in wellbeing and quality of life from participants.
The book also outlines how Stroke Odysseys complements and challenges the clinical model of rehabilitation, enabling people to progress on a personal journey of recovery and how it innovates at the junction between art making and care giving, re-connecting these related disciplines.
The Stroke Odysseys project created by Rosetta Life is one of three interventions, all of which have been proven to improve patient health, that are being trialed among larger groups of people within NHS hospitals. SHAPER – Scaling-up Health-Arts Programmes: Implementation and Effectiveness Research – was launched by King’s College London and UCL. More information about the study can be found here.
Deborah Bull, CBE (Baroness Bull) said, “Stroke Odysseys calls for us all to work together across voluntary, community, arts, health and education sectors, and government to model a compassionate community that cares for all its members – a message that could not be more important in the challenging times in which we live. Recovering Hope is an essential handbook for everyone with an interest in this field – whether clinician, artist, researcher or patient – and it will be particularly relevant to those dedicated to transforming the lives of people experiencing the effects of a stroke.”
Alongside the book launch, Rosetta Life will be streaming their 12-minute opera I Look For The Think, rehearsed and recorded over Zoom with sixty stroke survivors, professional musicians and the Adult Community Company from Garsington Opera.
At the height of the pandemic when vulnerable members of society were shielding, a community of the UK’s most isolated and vulnerable people came together online to create the opera about love after stroke.
I Look For The Think by renowned composer Orlando Gough was based on the lived experience of participant Kim Fraser and his wife and carer, Sarah. The opera will also be shown at Royal Berkshire Hospital. A trailer can be seen here.
Rosetta Life was founded in 1997 to use arts in health innovation to change the way we perceive the elderly, frail, disabled, and those who live with life limiting illnesses. Their work with stroke communities, Stroke Odysseys, started as a song cycle developed as part of Derry, City of Culture 2013.
Since then, Rosetta Life has produced Hospital Passion Play, which was performed at the Victoria and Albert Museum in 2017, Stroke Odysseys, which premiered at The Place before touring, choreographed by Ben Duke and composed by Orlando Gough.
Orlando Gough is known for his operas, choral music, music for dance and theatre, and is a former Associate Artist at the Royal Opera House. I Look For The Think is an extension of Act 2 of Hospital Passion Play.
New neuro-rehab centre gets the go-ahead
Plans to build a new neuro-rehab centre in Southampton have finally been given the go ahead.
The new 57-bedroom neurological rehabilitation centre will be built on the old Bargain Farm site in Nursling, on the north-west side of the city.
Work on the site is due to begin in the first quarter of 2021 with the service welcoming its first residents in the summer of 2022.
The bespoke facility will include physiotherapy and medical consulting rooms together with a therapy gym fitted with rehabilitation equipment as well as lounges, dining rooms, cinema and a café bar.
The facility will also include a self-contained step-down apartment.
The service will be operated by Inspire Neurocare and will provide rehabilitation care, long-term care, respite and palliative care for people with brain and spinal injuries as well as complex neurological conditions such as Parkinson’s disease and Huntington’s disease.
The centre will also be designed with the highest safety standards in mind, in light of the COVID-19 pandemic.
Additional features include a bespoke Covid-secure visitation suite (The Family & Friends Lounge), in-built thermal imaging technology in the entrance lobby (to ensure all visitors to the home, including staff, have their temperature taken on a daily basis) and a ventilation system which ensures air in resident and day spaces is fully changed every 15 minutes.
The centre will also have hand washing and hand sanitising stations throughout for staff, residents and visitors.
The Inspire Neurocare centre is being built by Hamberley Development, the 2019 HealthInvestor Magazine Residential Care Provider of The Year.
Daniel Kay, director at Hamberley Development, said that the neurological rehabilitation centre would be a significant addition to healthcare provision in Southampton.
He said: “The Inspire Neurocare neurological rehabilitation service will be a centre of excellence that will allow us to support local NHS services and provide much-needed complex care services for local people.
“Rehabilitation services are becoming more and more advanced and so it is vital that the appropriate environment exists to deliver these life-changing services.”
Adjacent to the neurological rehabilitation centre Hamberley Development will also build a leading-edge care home for Hamberley Care Homes that will include 80 en-suite bedrooms, spacious café bistro, private dining room, hair and nail salon, activity room and bar as well as a cinema, spacious resident lounges, dining rooms and quiet lounges.
The home will also be designed with the highest safety standards in mind, in light of the COVID-19 pandemic.
The psychiatrist fighting for domestic violence victims
Australia’s New South Wales government has promised to improve brain injury testing for domestic abuse victims after a psychiatrist drew attention to inconsistent care for vulnerable women. Psychiatrist Karen Williams urged the government to adopt a concussion protocol for family and domestic violence victims after doing her own research and being shocked at what she found.
It started when Williams noticed the disparity in how her patients were diagnosed and treated.Williams specialises in the treatment of post-traumatic stress disorders (PTSD), often with military, police, emergency personnel and other first responders.
But she also treats the general population, the vast majority of whom are women with histories of child and domestic abuse.
“I was getting two populations,” she tells NR Times. “The military patients, who are clearly identified as having PTSD, and the female population, who are mostly identified as having depression, anxiety and personality disorders, but had incredibly high rates of abuse in their histories.But Williams saw that whilst both groups had similar symptoms, and similar levels of trauma, they had very different treatment options.
“There’s a lot more funding put into supporting traumatised soldiers and first responders than there is for women who have experienced trauma within their home.
“In Australia, we don’t have much at all for women and children victims of abuse.”
This was a particular concern because of the amount of times Williams had heard about multiple head injuries and concussion among women who were victims of domestic abuse, which is similar to boxers and those player high contact sports.
“Women who’ve been unconscious several times or strangled have symptoms such as memory deficits, insomnia, migraine and mood swings, which all could be put down to PTSD and depression, but also brain injuries.”
But if Williams wanted to find out if a patient had a history of brain injuries, she would have to refer them for neuropsychiatric testing, which costs up to AUS$1000.
“This is completely unaffordable for many abuse victims so it just doesn’t happen, so we don’t investigate women who’ve had brain injuries.
“One brain injury unit told me they would consider taking on a patient if they could provide evidence that an assault happened – such as hospital records.
“This completely fails to take into account that the vast majority of domestic violence survivors will not report any assault to anyone and will not have so-called evidence.”
Then, Williams was speaking to a colleague whose son had had a head injury in a sporting field.
While they were together, a nurse rang to follow up the treatment he’d received in the emergency department.
“The nurse asked how her son’s personality and memory was, and gave a fantastic run-down of the symptoms that can happen after a concussion,” Williams says.
Williams was shocked – she’d never heard of someone ringing up women after a head injury in a domestic violence case.
She rang the local emergency department and asked about their protocol following a head injury obtained during sport.
She was given a detailed outline of the observations they take, their plan over the weeks following the patient’s injury and the advice they give the patient.
Williams called several emergency departments in other Australian states, and whilst all had a protocol for sports players following a concussion, none said they had a protocol for women who had been the victim of domestic abuse.
“There wasn’t one place that said they had a particular protocol.
“If they knew the woman had had a head injury they’d give them the basic head injury protocol, but nothing specific that took into account the very individual needs that a woman with a head injury in a domestic situation might have,” she says.
Williams says research indicates health care professionals correctly identify family violence victims about one per cent of the time.
“In sporting players’ protocol, there’s a recognition that says that your patient may not know what they’ve experienced in the past was a head injury, so the advice is to be really explicit. They’re given a list of questions to break it down with that player to make sure they understand what could be a head injury.
“There is opportunity for scanning, and neuropsychological testing if there is evidence of persistent symptoms.”
Williams says doctors should be going through the history of women, too, to see if they’ve lost consciousness in the past.
“There are a variety of mechanisms in which a woman experiences brain injuries in a domestic situation, many more than sporting probably, and the more head injuries a woman has, the greater her chance of long-term problems,” Williams says.
This includes a higher risk dementia, PTSD, migraines, learning problems and memory problems.
“But women aren’t told this, so many don’t know that they’re at risk of these things.”
Williams says there is a ’hidden epidemic’ of women in the community with brain injuries no one knows about, who could have been diagnosed with mental health issues instead.
In 2018, Brain Injury Australia released its findings after looking at the prevalence of brain injury in victims of domestic violence.
It found that 40 per cent of victims who attended hospitals in Victoria, Australia, for domestic violence had a brain injury and the majority were women.
But there’s no specific treatment for these women, Williams says, and many won’t even know they have a brain injury.
“Abused women are a very neglected population, and when you think about the money being spent on sports, and sports players, there’s no reason we can’t look after woman as well,” Williams says.
But despite these findings, Williams says it didn’t lead to any change.
“When I found all this out, I was angry and upset,” Williams says.
She arranged to meet New South Wales’s Labour MP Anna Watson in August, and when Williams told her what she’d found, she says Watson was ‘mortified’.
“She immediately got on the phone with the office of the minister for the prevention of domestic violence, and requested a meeting as soon as possible.
In the Zoom meeting a month later, Williams went over what she had found with Mark Speakman, Attorney General and Minister for the Prevention of Domestic Violence, and outlined the obstacles facing women.
But he made no promises, and Williams said she felt he didn’t understand the urgency or gravity of the situation.
Watson then went to the media, and the story was reported on. Within a week, the government produced a statement promising to investigate the issue.
“We’ll all be watching and holding them accountable,” Williams says.
“I will be trying to follow up, I won’t let it go.”
Williams is disheartened that it took media coverage to get the government to respond, but says she’s learnt a valuable lesson.
“Part of the reason I’ve spoken to the media and been vocal about it, is my experience is that when we do things quietly and ask for things politely, the government says there’s no money, despite being one of the wealthiest countries in the world. But when the voting population starts getting angry and asking what’s going on, that’s when we see an answer.
“It’s been a sad realisation for me to recognise that people don’t respond to do the right thing, they respond to winning the vote, so I will keep being as loud as possible in the media.”
Leaving brain injuries undiagnosed has significant consequences, Williams says.
“You’ve got women feeling like they’re a bit crazy, women wondering, ‘Why don’t I remember things, why have I got headaches all the time, why can’t I sleep?’
“It makes women feel worse, like something is wrong with them rather than identifying the underlying cause that we’re completely missing.
“If women are unable to work due to the physical and psychological side effects of a recurrent head injury, they need to be able to apply for NDIS funding (National Disability Insurance Agency). f they don’t know they have a brain injury they will be left to flounder – which is what is happening now.
“The vast majority of doctors don’t know about this. The medical system failing these women.”
There will be a lot to work out as support becomes available, Williams says, as some women could fear that having brain injury diagnosis could interfere with them getting custody of their children.
But, ultimately, change will benefit these women.
“All women deserve to know the truth about what’s happening to them,” she says.
“In some cases, their brain injury will be the final straw. They might think an act of violence isn’t a big deal, but if a doctor says, ‘Look how many times this has happened to you, you could end up long term brain damage’, that might be the final push that makes her take steps to leave. There’s no excuses to justify why these conversations aren’t had.”
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