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Shedding light on young brain injury survivor goals

Two specialist rehab providers have joined forces to investigate goals among young people affected by acquired brain injury. Here they report on their findings.

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The goals that children, young people and their families set in rehabilitation following an acquired brain injury (ABI) enable professionals to understand their priorities at different stages of recovery.

The Children’s Trust (TCT) and Cambridge Centre for Paediatric Neuropsychological Rehabilitation (CCPNR), have recently published studies that explore the goals set in their different settings. By reviewing these goals and their different rehabilitation contexts, the services are learning about the individual and evolving needs of children and young people with ABI.

What were the studies? The two studies exploring the children’s rehabilitation goals have been carried out in very different services. The first (Kelly et al., 2018) analysed 860 goals set at TCT in their residential, multi-disciplinary rehabilitation service for children and young people with severe ABI. These were goals from young people and their parents who were usually in the sub-acute stage of their ABI (i.e. they had been discharged from hospital recently).

The second (McCarron et al., 2019) analysed 326 goals set by children and young people at the the CCPNR, a community-based, multi-disciplinary neuropsychological rehabilitation service for children with mild to severe ABI. The service aims to meet the needs of children and young people living in the community who have complex acquired needs that cannot be met by non-specialist services. These children tend to be in the post-acute stage of their ABI (so they no longer need acute medical care).

In order to explore the priorities for children and families, both studies mapped the goals to the International Classification of Functioning and Disability (ICF) (WHO, 2017) and the related Child and Youth Version (ICF-CY) (WHO, 2007).  The goals set in these different contexts (residential rehab vs community rehab) and different stages of recovery (sub-acute vs post-acute) help to provide important insights for those working with CYP with ABI.

What were the studies?

1. Rehab goals were wide-ranging In both services. The overarching, and perhaps unsurprising, similarity between the findings of both studies is the level of variability between the goals of individual children.

Goals from both services spanned across many chapters of the ICF, demonstrating the need for services that are skilled in, and able to adapt to, the many different needs of children and young people who have had an ABI. This highlights their complex, interdisciplinary needs and demonstrates the challenge for services to be able to measure individual outcomes for a wide variety of needs, as well as to demonstrate the impact of the service.

2. In both services, the majority of the goals were set within the activity and participation (AP) domain. This helps us to understand that at every stage of their rehabilitation being able to take part in activities that they want or need to do, and participate in their daily lives and wider society, is of the upmost importance.

What were the differences?

Although the most common domain for goals in both studies was AP, the chapters where the most goals were set varied. In the residential rehabilitation setting, mobility and self care-based goals were most frequently prioritised.

In the community neuropsychological rehabilitation service, major life areas and interpersonal interactions and relationships were the most prevalent AP areas. This suggests a shift towards goals of increasing social complexity. This difference could be related to the remit and acceptance criteria of the services.

However, it could also demonstrate an emerging focus of priority for the children who have had an acquired brain injury as their social and rehabilitation context changes. In the residential rehabilitation setting, the skills that are developed in early childhood, i.e. walking, talking and using the toilet, are often the key focus of young people and their families.

As they return home, and access daily life at home, school and in the community, these early priorities may either have been resolved, or the child’s focus shifts to the increasingly complex social consequences of their ABI, such as their ability to manage in school or make friends. Furthermore, the impact of cognitive, emotional and behavioural challenges, can often be hidden in the structure provided by a sub-acute rehabilitation setting.

These difficulties can become more apparent with the increasing independence needed for participation at home, at school and in  the community. In line with this idea, there was also a growing emphasis on environmental factor (EF) goals in the community setting (20 per cent of all goals, as opposed to nine per cent of goals in the residential setting).

The majority of those accessing residential rehabilitation services will have come straight from an acute hospital, so may not be aware of the environmental barriers they will face. Furthermore, within the residential rehabilitation setting, children and their families may still be hopeful that they will make a full recovery and not need any changes within their environment.

Like the AP goals, the differences in the types of EF goals in the two settings reflects an increasingly social focus of young people in the community. In the residential setting, ‘products and technology’ was the most common type of EF goal, but ‘support and relationships’ was most important (and the second most important area overall) for children in the community.

Environmental factors impact on the ability of a young person to achieve their goals around activities and participation, so in the real-world community setting, it is unsurprising they become an increasingly important area for rehabilitation work.

Interestingly, there was a far lower percentage of goals set in the body structure and function (BS/BF) domains in the residential rehabilitation service (nine per cent), when compared to the community setting (28 per cent). In the community setting, goals in this category were predominantly related to mental functions (and most commonly emotional functions), whilst there was greater variety of the goals in the residential setting with increased emphasis on physical functions. This is likely due to the nature of the services.

However, it may be reflective of CYP’s psychological adjustment to their post-ABI identity (Gracey et al., 2015; Wales et al., 2019) and the need for incorporating psychological work into rehabilitation.

What does all this mean?

1.  It is clear that children and young people who have an ABI require an individualised service that is tailored to their specific needs and goals with a strong focus on activities and participation

2.  In order to provide intervention for these wide-ranging goals, services need to be resourced to provide an integrated interdisciplinary approach

3.  Goals need to be reviewed regularly as it is likely that they will change as young people acquire skills and come to understand the impact that their ABI will have on their identity, future and everyday life

4.  The increased focus on environmental goals in the community directs clinicians, services, schools and other organisations to be able to make environments accessible for young people with ABI in the community.

Should young people be exposed to a greater extent to some of the challenges in environmental and social participation earlier in their rehabilitation? Would this help them better prepare for their transition from residential to community settings, and result in better medium and long-term outcomes for children and their families?

Or is the complex and changing nature of the needs of children with ABI best met by specialist residential and community teams maintaining different expertise while maintaining a strong dialogue at key transition points to support their evolving goals?

These questions cannot be answered without research into these areas. ABI is a lifelong condition, requiring long term studies on the evolving impact upon children and their families as they develop throughout childhood, adolescence and adulthood. What we can take from these two studies now is the importance of letting children and young people define what is important to them in rehabilitation.

This commentary was co-written by Gemma Kelly (physiotherapist), Lorna Wales (occupational therapist), Robyn McCarron (psychiatrist) and Suzanna Watson (psychologist), clinicians from The Children’s Trust and the Cambridge Centre for Paediatric Neuropsychological Rehabilitation.


Neuro Rehab Times is the magazine for all professionals involved in the care and rehabilitation of people with brain injury – alongside other neurological and spinal conditions. Get your copy, filled with exclusive print-first content, every quarter for just £24.99 per year.

 

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Taking time to look back – so the way ahead is clearer

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Reflective practice within healthcare settings is widely talked about, but not always so easy to implement in the workplace. NR Times speaks to one neurological centre about how it benefits patients and staff there.

Reflective practice and discussion in healthcare settings is a professional requirement for nurses, as laid out by the Royal College of Nursing revalidation requirements as part of their continuous professional development.

It allows professionals to take time to pause and reflect, communicate and plan, which undoubtedly leads to better outcomes for patients and staff.

But in reality, reflective practice can often be left to the bottom of the pile, underneath many of the competing responsibilities facing staff who are often pressed for time.

It could be argued that this is also why reflective practice is so important – healthcare staff are facing so many pressures that it actually makes less sense to neglect the important work of individual and team reflection.

The Royal College of Nursing defines reflective practice as: A conscious effort to think about an activity or incident that allows us to consider what was positive or challenging and if appropriate
plan how it might be enhanced, improved or done differently in the future.

Staff at Elysium St Neots Neurological Centre in Cambridgeshire started doing regular, weekly reflective practices when its new hospital director, Fiona Box, came into the role a few months ago.

The nurses and healthcare assistants from a ward are invited into the meetings and in their absence the therapy staff monitor patients and provide activities.

“We thought it would be helpful for team members to give them the opportunity to think, learn, and to hear their opinions,” says charge nurse Jemima Vincent.

“If we have an incident with a patient, we discuss it in the session” she says.

Sessions are led by the management team, with added input from psychology teams on each ward.

They will talk through any strengths, weaknesses and opportunities, and work through an analysis to learn from the incident and create an action plan.

They talk about the worst-case scenario in relation to an individual situation and discuss how staff would manage that, so they’re better prepared in the event of it happening.

While they focus on one patient at a time, issues arise during conversations that bring in their wider experiences.

In an article* published in the Nursing Times in 2019, Andrea Sutcliffe, chief executive of the Nursing and Midwifery Council said: “In these challenging times for health and social care, it’s so important that collectively we do all we can to support our health and care professionals, and their employers, in devoting time to individual, reflective, personal and honest thinking.”

Fiona has received encouraging feedback from staff, who say the meetings help the staff feel much more involved in a patient’s care and allow the team to increase their knowledge and understanding resulting in a more consistent way of working.

“Healthcare workers often don’t fully understand patients’ diagnoses or why they’re reacting in a certain way, for example,” Jemima says.

“They know a patient presents with certain behaviours and may be taking medicine to help them cope but they’re not aware why the patient is showing signs of aggression and the best response to deescalate the situation,” she says.

“It’s a learning opportunity for staff, because reflective practice means that they can understand a patient’s diagnosis and why they behave how they do,” Jemima says.

“Reflective practice answers their ‘why’ questions, and gives them a more open mind.”

Jemima also benefits from the meetings; it’s a way for her to get to know staff better, especially when it comes to learning opportunities.

“I’m able to understand what level of support each member of the team requires, including training needs and if they need more knowledge on a specific topic.”

In her final year as a mental health nurse student on extended clinical placement at Elysium St. Neots, Jo took part in a reflective practice session.

She had just finished her dissertation, in which she looked at how settings can increase the opportunities and variety of reflective practices within hospital settings.

The aim of Jo’s session was to reflect on the recent deterioration in a patient’s mental state and the resulting impact on their well-being to ensure staff had a consistent approach to support the patient.

The hospital’s director Fiona asked the team about the patient’s care plan, diagnoses and needs and wishes.

Where staff were unsure of the answers to questions, Jo says Fiona gave them answers and encouraged the team to share their knowledge of the patient, problem solve and come up with an agreed plan to move forward with.

Jo found the session helpful and was impressed with how the healthcare assistants were so involved in the discussions about all aspects of the patient’s care, including the more clinical elements.

Healthcare assistants told her they found the session helpful too and that it made them feel like they had a better understanding of the patient’s changing mental state, behaviours and needs.

Jo says having the opportunity to reflect on practice is a crucial skill for all healthcare workers to help them learn from their experiences and increase self-awareness, which, in turn, can improve individual professional standards, strengthen teams and enhance patient-centred care and clinical outcomes.

For referrals to Elysium St Neots Neurological Centre or other Elysium centres visit: www.elysiumhealthcare.co.uk/neurological

Reference source: https://www.nursingtimes.net/news/ professional-regulation/nmc-highlights-importance-of-nurses- reflection-on-practice-18-06-2019/

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Robots and resilience at Askham Rehab

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NR Times reports on a new rehabilitation approach taking place in Cambridgeshire.

Despite a year of relentless change and upheaval for all involved in neuro-rehab, one provider in Cambridgeshire has been able to keep its ongoing development on track.

Askham Rehab, part of the Askham Village Community, is a recently-launched specialist rehabilitation service incorporating the latest in rehab robotics and sensor assisted technology.

While the firm has invested in state-of-the-art technology to do the heavy lifting, however, its rehab services remain person-centred, as director Aliyyah-Begum Nasser explains.

“We’re a specialist rehab centre in essence, and so, although the robotic technology helps us to get the most out of our patients and staff, we are very much family-focused.

The equipment is obviously fantastic but we know from experience that a person’s mindset, and their ability to sustain whatever improvements they make, comes down to the people who are supporting them – their family members.

“We’ve been on some real journeys with many of our family members who just didn’t understand the impact of a brain injury in terms of how it can impact behaviour or what it can do for cognition.

“Once they understand that, suddenly they become a lot more compassionate, and a lot more supportive; they become part of the recovery process, rather than being a frustrated observer.”

With recognition of the family’s paramount importance to recovery, Askham Rehab does everything within its power to harness this force – including by enabling families to stay together in specially-designed apartments on site.

Aliyyah-Begum says: “The flats are fully adapted, with cantilever cupboards, height-adjustable sinks in the bathroom and full wet room with turning spaces.

“We have the patients themselves participating in rehab, specifically to their programme, but relatives are also there from the beginning, seeing the improvement and being part of our process from the outset.

“We think of the centre as more of a rehab environment; it’s not a just care home with therapy as an added extra.

“So from the minute our patients wake up to the minute they go to bed, everything is based around their recovery goals, and everyone is working together towards achieving them.”

And robotics are an important tool in pursuing these goals through patient exercise. They help therapists to achieve the repetitions and intensity needed to progress their clients, as Aliyyah-Begum explains.

“The point of the robotics is that they respond to the patient. For example, if you set the machine on a left lower limb, but it senses that there is more pressure being exerted through the right limb than the left, it will automatically respond to make sure the patient is moving the correct part of their body.”

The centre’s head of rehab and nursing, Priscilla Masvipurwa, says: “This is a real a game changer in our approach to rehabilitation.

“Robotics help to bridge the gap, increasing the frequency and repetitiveness of treatment, something that’s an essential part of the process.

“We anticipate that this will enable us to support our patients in reaching their goals in a more efficient and sustainable way.

“The centre has so far invested in four items from robotic rehabilitation firm Tyromotion, but is looking to add more over time, as the benefit to both staff and patients becomes ever more evident.

Aliyyah-Begum says: “It’s really important to the team at the centre that the robotics aren’t just seen as an add on.

“There is a lot of nervousness about robots replacing therapists, but our service is still very much therapy-led.

“What this means in practice is that, where a resident would previously have had maybe an hour of therapy time in an afternoon, now you have an hour of therapy time, and then you can carry on exercising if you want to, or carry on playing games with other residents.

“For example, one of our machines, the Myro, enables patients to play games like bat and ball, or perform virtual tasks like sweeping leaves.

“However, because it is all sensor-assisted, if it senses that the patient needs to work a certain hand, it will alter what it is asking them to do accordingly, while they won’t even necessarily feel they’re having therapy – it’s all part of the game, and part of their socialising with other residents.”

Askham Rehab forms part of the Askham Village Community, on the edge of Doddington village, in Cambridgeshire.

It provides specialist care for people of all ages, offering day visits, respite care and continuing long-term support, both on-site or at home.

The site consists of five homes, three of which are specialist neurological facilities. In total, the neuro-rehab team can look after up to 52 patients at any one time, with 120 staff made up of rehab professionals and specialists.

The team comprises carers nurses, physiotherapists, occupational therapists, speech and language therapists and psychologists.

Aliyyah- Begum believes that the introduction of the robotic rehab services, combined with the patient-led therapy the group has been offering for 30 years, can only enhance the centre’s outcomes.

She adds: “We know that there is an increasing number of care homes that offer specialist therapy, but the difference with Askham Rehab is that we have embedded it into the whole culture of our setting – and the outcomes really speak for themselves.

“We often discharge people earlier than planned, and that’s a testament to the fact that the patients are really working hard with the team throughout their stay with us to achieve their goals – and that is the key.”

For more information about Askham Rehab, visit www.askhamrehab.com

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Astrocytes identified as master ‘conductors’ of the brain

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In the orchestra of the brain, the firing of each neuron is controlled by two notes – excitatory and inhibitory – that come from two distinct forms of a cellular structure called synapses.

Synapses are essentially the connections between neurons, transmitting information from one cell to the other. The synaptic harmonies come together to create the most exquisite music–at least most of the time.

When the music becomes discordant and a person is diagnosed with a brain disease, scientists typically look to the synapses between neurons to determine what went wrong. But a new study from Duke University neuroscientists suggests that it would be more useful to look at the white-gloved conductor of the orchestra – the astrocyte.

Astrocytes are star-shaped cells that form the glue-like framework of the brain. They are one kind of cell called glia, which is Greek for “glue.” Previously found to be involved in controlling excitatory synapses, a team of Duke scientists also found that astrocytes are involved in regulating inhibitory synapses by binding to neurons through an adhesion molecule called NrCAM. The astrocytes reach out thin, fine tentacles to the inhibitory synapse, and when they touch, the adhesion is formed by NrCAM. Their findings were published in Nature on November 11.

“We really discovered that the astrocytes are the conductors that orchestrate the notes that make up the music of the brain,” said Scott Soderling, PhD, chair of the Department of Cell Biology in the School of Medicine and senior author on the paper.

Excitatory synapses — the brain’s accelerator — and inhibitory synapses — the brain’s brakes — were previously thought to be the most important instruments in the brain. Too much excitation can lead to epilepsy, too much inhibition can lead to schizophrenia, and an imbalance either way can lead to autism.

However, this study shows that astrocytes are running the show in overall brain function, and could be important targets for brain therapies, said co-senior author Cagla Eroglu, PhD, associate professor of cell biology and neurobiology in the School of Medicine. Eroglu is a world expert in astrocytes and her lab discovered how astrocytes send their tentacles and connect to synapses in 2017.

“A lot of the time, studies that investigate molecular aspects of brain development and disease study gene function or molecular function in neurons, or they only consider neurons to be the primary cells that are affected,” said Eroglu. “However, here we were able to show that by simply changing the interaction between astrocytes and neurons — specifically by manipulating the astrocytes — we were able to dramatically alter the wiring of the neurons as well.”

Soderling and Eroglu collaborate often scientifically, and they hashed out the plan for the project over coffee and pastries. The plan was to apply a proteomic method developed in Soderling’s lab that was further developed by his postdoctoral associate Tetsuya Takano, who is the paper’s lead author.

Takano designed a new method that allowed scientists to use a virus to insert an enzyme into the brain of a mouse that labeled the proteins connecting astrocytes and neurons. Once tagged with this label, the scientists could pluck the tagged proteins from the brain tissue and use Duke’s mass spectrometry facility to identify the adhesion molecule NrCAM.

Then, Takano teamed up with Katie Baldwin, a postdoctoral associate in Eroglu’s lab, to run assays to determine how the adhesion molecule NrCAM plays a role in the connection between astrocyte and inhibitory synapses. Together the labs discovered NrCAM was a missing link that controlled how astrocytes influence inhibitory synapses, demonstrating they influence all of the ‘notes’ of the brain.

“We were very lucky that we had really cooperative team members,” said Eroglu. “They worked very hard and they were open to crazy ideas. I would call this a crazy idea.”

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