Goal setting is always a hot topic in neurorehabilitation – it has, in many ways, become much more than the sum of its parts and, as a concept, it is saturated with literature.
There is frequently new research evaluating components of goal setting or describing emerging ideas in the field, and this can be difficult to navigate, even with all the time in the world.
As clinicians, however, there is rarely ever any spare time at all. If we listen to what we are told about how important goal setting is for our service users and teams, we need to know exactly what it is, why it matters, and how we can do a good job of it.
Goal setting, simply, is concerned with figuring out what we would like to accomplish. This is apparent in so many factions of our daily lives, from thinking about our career aims to writing our day’s to-do list.
If we don’t know what we want to work towards, we might go from job to job in life with no real direction, or we might get to the end of a day and realise that we haven’t really accomplished anything.
Setting goals keep us focused on what is meaningful to us and allow us to make short-term plans towards achieving it.
This is no different in neurorehabilitation. When someone has a brain injury, they might so often feel that they just want to get “better” and for life to get “back to normal”.
What does that really mean? How do we quantify “better” and “normal” and, more importantly, what plans can we make to work towards that? Instead, it is more useful to speak with a patient about, “What specific differences to the current situation would improve your life and wellbeing?”
In this instance, a patient’s definition of “better” might really mean “I want to be able live independently again”.
This is a much clearer aim and, as such, can be set as a goal for the patient’s rehabilitation.
An interesting part of this discussion is reference to “the current situation”, referring to the extent to which someone is able to function in daily life and participate in essential and meaningful activities.
How do we quantify this? Goal setting literature suggests that this should be based in a functional assessment of which there are many different types, such as the International Classification of Functioning, Disability & Health (ICF).
They are designed to consider each aspect of individual and rate their level of impairment in those areas, using standardised assessments, patient report and observations from family members.
The results of such an assessment can then offer a comprehensive understanding of what might be the most meaningful areas of a person’s functioning to address during the goal setting process.
Once the foundations of a goal have been set, we can then start to think about how to measure progress in that goal.
Our first instinct is possibly marking a goal a either “achieved” or “not achieved” similar to crossing a task off a to-do list – it is quick and satisfying.
However not all goals, especially those in neurorehabilitation, are so black and white, and instead we need to look at the grey.
To do this, we can measure goal achievement using Goal Attainment Scaling (GAS) which centres around a set of scaling stages to record the possible outcome of a goal, following this framework:
+2 Considerably more than achieved
+1 Slightly more than achieved
0 Goal situation
1 Slightly less than achieved
2 Slightly more than achieved
Using this scale, a single goal can be rated in its success on a spectrum rather than a “yes” or “no” approach, affording patients greater chance of success but also better mapping a patient’s journey within their rehabilitation.
After setting a goal and defining its stages, you are left with an aim for the future. There is something on the horizon that everyone is heading towards: the patient, their family and their team.
Next we need to think about how we get there. This is where everyone around a patient thinks about the steps that they will individually take towards getting a patient to that goal.
For example, if a patient has a goal to be able to walk without support from a family member, their physiotherapist might set themselves an objective of working with the patient on developing the ability to use a walking frame, while an occupational therapist might set their objective as modifying the family home to install supports to aid the patient’s mobility. Everybody defines their “to-do list” for that goal.
These processes are many and complex to complete manually. This was only too apparent within our paediatric neurorehabilitation service, Clinical Neuropsychology Services Ltd.
Whilst working towards our target of improving goal setting within the service and clients’ teams, it became clear that there was so much to understand and so little time within a normal working week of client appointments, meetings and the rest to do it all by hand.
As a result, with the help of a patient software developer, Goal Manager was developed to streamline all of the important goal setting components into one process.
It facilitates the completion of a functional assessment whose results form the foundations of goals measured through GAS, before allowing interdisciplinary professionals to log on from wherever they are to update their individual objectives for each goal.
Goal Manager was originally developed to improve our service however was soon requested by our colleagues and has subsequently grown into a much larger project.
As a result, we have learned a great deal about goal setting along the way.
Over a series of articles, we aim to present what we have discovered in a way that hopefully makes meaningful and effective goal setting more accessible to all.
We will be covering the details of functional assessments, GAS, SMART objectives and more, including stories from those who have seen the benefit of it.
Merryn Dowson is an assistant psychologist at Clinical Neuropsychology Services Ltd., the rehabilitation provider which pioneered the goal-setting app Goal Manager. For more information about the platform visit www.goalmanager.co.uk. This article was written with supervision from Dr Penny Trayner, paediatric clinical neuropsychologist.
Putting virtual rehab for stroke patients to the test
Researchers at the University of East Anglia have been putting virtual reality rehabilitation for stroke survivors to the test.
They have created a new gaming platform which uses low cost videogame technology to improve the lives of stroke patients suffering from complex neurological syndromes caused by their stroke.
And they have been working with stroke survivors and their carers to see how they get on with using the new technology.
It is hoped that this type of technology, which can be used in patients’ own homes, could prove particularly beneficial for rehabilitation during periods of lockdown, social distancing and shielding – caused by the Covid-19 pandemic.
There are 1.2 million stroke survivors in the UK and around 20-40 per cent of them suffer a debilitating disorder called ‘hemispatial neglect’. The condition leaves people unaware of things located on one side of their body and greatly reduces their ability to live independently.
A new study published today is the first to explore the usability of virtual reality games for helping stroke patients recover from this condition.
Lead researcher Dr Stephanie Rossit, from UEA’s School of Psychology, said: “A stroke can damage the brain, so that it no longer receives information about the space around one side of the world. If this happens, people may not be aware of anything on one side, usually the same side they also lost their movement. This is called hemispatial neglect.
“These people tend to have very poor recovery and are left with long-term disability. Patients with this condition tell us that it is terrifying. They bump into things, they’re scared to use a wheelchair, so it really is very severe and life-changing.”
“Current rehabilitation treatments involve different types of visual and physical coordination tasks and cognitive exercises – many of which are paper and pen based.
“We have pioneered new non-immersive VR technology which updates these paper and pen tasks for the digital age – using videogame technology instead.
“But we know that adherence is key to recovery – so we wanted to know more about how people who have had strokes get on with using the new technology.”
The team tested out three new games on stroke survivors, their carers and stroke clinicians (including an occupational therapist, healthcare assistant, physiotherapist and clinical psychologist) to better understand how user-friendly the technology is.
The specially designed games included a boxing game where the player spars with a virtual partner, ‘Bullseyes and Barriers’ where the player hits or avoids targets and ‘In the Kitchen’ which sees the player search for objects in a realistic kitchen layout.
They also tested a game which involves lifting rods on a table while a portable low cost motion sensor tracks the patient’s movements. These balancing exercises are targeted to improve spatial neglect.
The UEA researchers worked with industry collaborator Evolv to create the games, which aim to improve rehabilitation by including elements such as scoring and rewards to engage the patient and improve adherence to their treatment.
David Fried, CEO of Evolv, said: “Traditional rehabilitation treatment is quite monotonous and boring, so this gamification aspect is really important to help people stick with their treatment.
“Our goal is to use technology to make rehabilitation fun and engaging and we have applied this to our Spatial Neglect therapy solution. The great thing about it is that it can be used not only in clinics but also in patients’ homes, thereby giving them access to personalised rehabilitation without leaving their living room.”
The research team carried out a series of focus groups, questionnaires and interviews to check things like whether the instructions were clear and if the technology was easy enough to use. This is important because gathering feedback from end-users during the development stages is critical to enhance future use and adherence.
Helen Morse, also from UEA’s School of Psychology, said: “Overall we found that the end-users were really positive and interested in using virtual reality games to help their special neglect. The participants particularly liked the competition elements and performance feedback like cheers and clapping in the games, and we hope that this will help increase engagement with rehabilitation.
“But some of the older participants found that their lack of experience with technology could be a potential barrier to using the new gaming platform,” she added.
“We have used all the feedback we gathered to fine-tune our rehabilitation therapy for spatial neglect called ‘c-SIGHT’ which involves lifting and balancing rods. With competitive funding from the Stroke Association we are now running a clinical trial in the east of England to test the feasibility of this tool in people’s own homes.
“Being able to carry out this type of rehabilitation at home is really important because it means patients can do rehabilitation without a therapist present. This is particularly critical right now because of the Covid-19 pandemic and the need for social distancing and shielding.”
Dr Rossit said: “This technology has the potential to improve both independence and quality of life of stroke survivors. We also anticipate other benefits such as improved cost-effectiveness of stroke rehabilitation for the NHS.
“This innovative therapy could also improve long-term care after stroke by providing a low-cost enjoyable therapy that can be self-administered anywhere and anytime, without the need for a therapist to be present on every occasion.”
This research was funded by the NIHR Brain Injury MedTech Co-operative (MIC) and a further trial is being funded by the Stroke Association.
‘Exploring perspectives from stroke survivors, carers and clinicians on virtual reality as a precursor to using telerehabilitation for spatial neglect post-stroke’ is published in the journal Neuropsychological Rehabilitation.
Vestibular problems after brain injury
NR Times reports from the disorientating world of one of the lesser known post-ABI challenges.
Our vestibular system, located in the inner ear, assists with balance and tells the brain what position the body is in; if it’s upright or lying down, for instance.
Usually our eyes will turn the opposite way to our head because the vestibular system helps to keep things in focus.
After a brain injury, people can develop Benign Paroxysmal Positional Vertigo (BPPV), where the tiny crystals in the inner ear that control this mechanism become dislodged. This can cause vertigo when the head suddenly moves, which can lead to disorientation and sickness.
In some cases, the trauma to the brain can damage the ear canals and disrupt feedback to the brain, affecting a person’s hearing.
“Clients can present very tired, like they have brain fog, because the brain is working extra hard to do tasks that, before the injury, they did without thought,” says Clare Bates, a vestibular audiologist at NE1 Hear.
Early intervention is key, says Bates, as well as not being dismissive of odd symptoms people might describe. This means educating as many people as possible to recognise the symptoms to look out for so patients can be streamlined for treatment.
But vestibular problems often aren’t the first thing that comes to the mind among medical staff when looking after a patient with a head injury, says Bates.
“A lot of clients I’m working with are three years down the line before vestibular injuries are looked at. There’s a lack of education. It can take such a long time for patients to get well enough to move around enough. And then, patients often think it’s all in their heads – but it’s a real condition.
“Someone in a car accident, for example, could be laid down for months without being exposed to many movements, and it’s not until later on that they realise they’re dizzy when moving their head or trying to walk.
“With the right person picking up on symptoms, though, vestibular rehab can work an absolute dream,” adds Bates.
For Lisa Robinson, allied health psychotherapist at Newcastle Upon Tyne Hospitals NHS Foundation Trust’s major trauma unit, this means educating healthcare professionals, so that, rather than thinking dizziness is just a part of having an injury, they delve deeper, asking a few more questions and doing more assessments for BPPV.
For many patients, dizziness is one part of several problems they experience daily. But it can be a barrier to the rest of their rehab.
“If we treat it, it means they can then get on with their rehab,” Robinson says.
One form of treatment is the Epley manoeuvre, which helps crystals in the inner ear get back to where they should be and involves turning the head and lying down. It can be done in less than five minutes.
“Some patients, however, are nervous about doing the manoeuvre as it causes them to feel dizzy, and it’s human nature to avoid that,” Robinson says.
“Trying to encourage patients to adopt head positions when they’re experiencing dizziness can be challenging, but for a lot of patients, their dizziness is one of most troubling symptoms.
“If we reassure people that treatment will help with dizzy symptoms, most of the time they’re quite keen.”
Where it becomes more challenging, Robinson says, is when there are other injuries, such as fractures, or being prohibited by a neck collar, which means the treatment will need to be modified.
The manoeuvre can significantly reduce dizziness, but there’s a risk they can come back out again.
High functioning clients can be taught how to do the manoeuvre themselves, but outside of the hospital, there are many other ways therapists are helping patients with vestibular injuries in their everyday lives.
“Some of my clients can feel dizzy and unsteady when they look up, like they’re going to lose their balance. Loud noises can also be really disorientating for people,” says Gail Archer, clinical innovations lead and clinical lead occupational therapist at Neural Pathways.
“It can be really isolating for people. Some clients don’t want to go out to busy areas,” she says.
“One client couldn’t go to the local shopping centre because the patterned floor made her feel uneasy, and there was lots of movement around her.
“All the noises and feedback going into her visual field made her feel unsteady, like she was going to fall. She’d grab onto shelves in supermarkets.”
Public transport can be difficult, too, for someone with vestibular injuries. Even a train going past at the train station, or having to stand and walk towards a seat on the bus, can be challenging.
“People think you’re drunk – there’s a public perception because the problem is hidden,” Archer says.
“Several clients have reported that people deal with them as if they’ve been drinking; it can feel like they’re being stared at because they can walk quite staggered with their feet apart to give them
“There can also be a lot of anxiety associated with BPPV, and they can develop a fear of going into the community, which can lead to low mood.”
Graded exposure is one treatment that can improve and manage symptoms, Archer says, which can help people manage their symptoms and cope when things do happen.
“We expose the person to symptoms that make them dizzy in the hope that they will lessen over time. Graded exposure could mean progressing from standing at the train station for 15 minutes to getting the train to a busy place and sitting in a coffee shop to have a drink,” she says.
“Avoidance makes it worse – you have to do that rehab to gradually expose to symptoms and resilience to having them.
“It can be easier for higher functioning clients who are usually mobile and able to take things on independently, but carers can also help by taking people out to exercise.”
Archer says vestibular problems require a multi- disciplinary approach.
Her clients often have involvement from neuropsychology to help with mood management, and physiotherapy to help with exercises, as well as audiology to help with assessment at the nature of a patients’ vestibular problems.
Similarly, Bates sees patients from neurology, psychotherapy and cardiology, but says each patient is different.
“No one case is identical to another. I have to think outside the box and give personalised exercises, get to know clients and build a rapport with them that you don’t get in a lot of specialities.
“I wouldn’t give unrealistic expectations, but the rule of thumb is that if you have good muscles, joints and vision, in theory there’s definite potential for improvement. It’s important to give people manageable goals.”
Whatever the level of injury, it’s important that patients receive the very best treatment, rehabilitation and care as quickly as possible. Legal advice may also be vital.
Paul Brown, Associate Solicitor within the Serious Injury Team at Burnetts Solicitors, says: “Part of
the issue following vestibular injuries is that often they are not detected straight away particularly following head and brain injury.
As confirmed, vestibular symptoms can be very intrusive and often entrenched and it is only through multi-disciplinary working that these symptoms can be fully addressed.
“The first step in a legal claim is however ensuring that a full medico-legal assessment is undertaken by a consultant in audiovestibular medicine or specialist ENT Surgeon.
This should include where possible objective tests of the vestibular system to confirm the full extent of the injuries sustained.
“The symptoms can often fall into three main categories these being vestibular, brain injury and psychological related and it is only be addressing all three areas in this group of patients that sustained recovery can be achieved.
“This will normally mean that the therapy team will need to include a neurophysiotherapist with experience of treating vestibular injuries, occupational therapist, audiologist and neuropsychologist. Although depending on the extent of the brain injury other therapists may also be required.
“If symptoms are not addressed quickly the symptoms can become entrenched with many patients presenting with avoidance behaviours which can be mistaken for malingering.
“Many of my clients have been subjected to video and social media surveillance after being instructed by defendant insurers as a result. It is in my submission human nature to try and avoid something which makes you dizzy and nauseous.
“Therefore the treatments provided are intended to increase tolerance to the dizziness and nausea symptoms and attempt to reduce their overall effect on daily living. This can be a long process and whilst many experts will suggest that symptoms can be fully resolved my experience is that this is often a life-long condition which requires long term treatment, support and care to be included within any legal claim.
“Therefore where there is a legal claim having a legal team who are experienced in vestibular injuries is therefore very important and can often make the difference in obtaining appropriate treatment and support for the remainder of life.”
Cheatsheet: Vestibular problems after brain injury
Vestibular injuries can have a dramatic and life changing impact not only for the person injured but also for those that are close to them. The ability to maintain our balance and navigate ourselves in the outside world is vitally important. Head injury and whiplash injuries can often disrupt the internal vestibular system, resulting in many different problems with balance and dizziness. This in turn can have a detrimental impact on recovery in other areas. The specific conditions that can follow trauma include:
Benign Paroxysmal Positional Vertigo (BPPV)
BPPV is normally caused when the crystals of the inner ear are dislodged from their usual position and build up in the semi-circular canals, thus disturbing the usual movement of endolymph fluid. This makes people sensitive to specific kinds of movement, such as lying down or turning. Balance can also be affected when standing or walking. Episodes of BPPV will often make people feel like the room is spinning round. This can often be more pronounced during the early morning or when someone has been lying down for long periods.
Post-traumatic vertigo is sometimes used as an umbrella term for many of the conditions described below when they follow a head injury. Alternatively, it can refer to dizziness after head injury, in the absence of other more complex clinical feature.
This term refers to symptoms of hearing loss, dizziness and tinnitus which occur after head injury, but without signs of direct injury to the labyrinth.
Traumatic endolymphatic hydrops
This condition is caused by an abnormal build-up of endolymph fluid in the inner ear. The increased pressure in the inner ear leads to periods of intense dizziness. Some people have this condition due to a condition known as Ménières disease. However, it is sometimes caused by a head injury, in which case it will normally be referenced in the medical records as traumatic endolymphatic hydrops or post-traumatic Ménières disease. People with the condition will normally experience periods of intense dizziness (vertigo), along with sounds in the affected ear (tinnitus), fluctuating hearing loss, loss of balance and a feeling of pressure, or fullness, in the ear.
People who experience visual vertigo will normally complain of dizziness and unsteadiness which is triggered by busy environments with lots of visual stimulation. Symptoms include loss of balance, dizziness, sweating, fatigue, nausea, vomiting and disorientation. However people will react in different ways and this can often be linked to conditions like BPPV. Often people suffering from this condition will find it difficult to cope in crowded environments or being a passenger in a car or train. Some people often have great difficulty looking at computer screens for long periods, especially screens that have scrolling text. Visual vertigo is usually triggered by movement, which is sometimes referred to as motion sensitivity. One common trigger that has been reported is being in a busy supermarket especially where there are highly-stacked aisles.
For information about an upcoming webinar on post-brain injury vestibular problems see www.burnetts.co.uk.
What’s a Duchess without a G&T darling?”
Laura Nicholls, lead speech and language therapist at The Bridge Neurological Care Centre in Middlesbrough, reflects on the rehabilitative journey of her patient Angela on regaining some normality following a lengthy admission in intensive care.
Firstly there’s a couple of things you need to know about Angela before I can tell you about her journey. She isn’t usually one to let another person speak for her but I have been given full permission to share with you all the ups and downs of her rehabilitative journey.
Angela has acquired the very fitting nickname ‘The Duchess’. This comes from her previous occupation as a community matron, her fine eye for detail, her drive for perfection and her tendency towards bossiness.
In April 2019 Angela was admitted to hospital with Myasthenia Gravis that resulted in Myasthenic crisis (respiratory failure).
Myasthenia Gravis is
a rare long-term neurological condition that causes muscle weakness.
In Angela’s case she experienced severe difficulty swallowing, loss of voice (aphonia) and severe breathing problems.
This resulted in the insertion of a tracheostomy (an opening created at the front of the neck so a tube can be inserted into the windpipe/ trachea to help you breathe) with 24/7 ventilation to assist with breathing.
This emergency procedure can often cause weakness and structural damage that further complicates an individual’s recovery of function. This means that often the long-lasting impact of having difficulty speaking, eating and drinking on someone’s quality of life is not fully realised until the months after initial survival has been achieved.
It is the role of a speech and language therapist to provide assessment, treatment and support for individuals who have difficulties with communication, or with eating drinking and swallowing.
Angela’s swallow and voice were severely affected second to muscle weakness and poor breath support. This resulted in poor airway protection when she was eating and drinking meaning food and fluids entered the trachea and lungs rather than the oesophagus leading to the stomach. This can cause serious health concerns as it can result in airway obstruction (choking), chest infections, pneumonia and death.
I worked closely with Angela to identify what was most important to her and what would make a difference to her quality of life and wellbeing. Angela identified that she would love to be able to have a gin and tonic and FaceTime her family and friends without them having difficulty hearing her.
This was a huge target for a lady who was nil by mouth with an unsafe swallow having all her nutrition and hydration needs met via a tube into her stomach (percutaneous tube) and who had a very weak voice; Angela’s friends and family would often ring her but could only have a one-sided conversation as Angela’s voice was too weak to be heard over the phone.
From thorough assessment, I created an intensive swallow and voice rehabilitation programme when Angela was discharged to us in August 2019 which utilised specific muscle building/strengthening exercises to target the areas of breakdown in her voice and swallow.
This programme focused on improving oral control and coordination, improving laryngeal elevation and hyoid excursion (good range of movement is required to swallow safely), improve airway protection, increase strength of cough and strengthen her vocal cords to increase strength of voice. Angela completed this programme multiple times per day.
Her exercises were recorded onto her iPad for her to work through daily and support her in the completion of these.
Angela’s recovery and ability to wean from ventilation was lengthy and unpredictable at times. She suffered a number of setbacks and respiratory complications during her recovery that impacted her ability to complete therapy. However she remained determined and focused on what she wanted to achieve.
By December 2019, she made significant progress. Through her dedication and perseverance with her rehabilitation programme she achieved her goals. After months of being unable to eat and drink Angela’s swallow was now safe – she was able to eat and drink without difficulty or fear of choking.
Angela’s voice was also a lot stronger, she went from being inaudible on the telephone to being intelligible 100 per cent of the time and being understood in all communication environments with no incidents of communication breakdown with familiar or unfamiliar listeners.
Angela continued with her rehabilitation programme and in February 2020 she attended her local flower club meeting where she addressed all 70 attendees, delivering a 10 minute speech without difficulty.
This was a major achievement given that she was struggling to make herself heard to one individual in a quiet room six months prior.
It was a moment of great pride when she introduced me to the audience saying: “This is Laura, my speech therapist, without whom I would not be able to speak to you all today and without whom I would not be able to enjoy this gorgeous spread you have put on for us all.”
In March 2020 the tube into Angela’s stomach was removed as she no longer needed it to meet her nutrition and hydration needs – she could do this by eating and drinking herself.
The therapy outcome measures graphs clearly show the positive outcomes she has been able to achieve through therapy, but the true outcome is written all over her face – smiling ear to ear.
Through therapy Angela did not just regain the ability to speak and swallow, she gained confidence in recovering functions that she thought she had lost forever and a new appreciation for the things in life that people often take for granted.
Angela has been a complete joy to work with and one of the greatest honours of my career has been to work alongside her.
Now enjoy your G&T Duchess – you deserve it.
Laura Nicholls is a speech and language therapist at The Bridge Neurological Care Centre in Middlesbrough, which provides specialist inpatient neurological rehabilitation and complex care for people with neurological illnesses, acquired brain and spinal cord injuries. For more info visit www.elysiumhealthcare.co.uk.
- Opinion10 months ago
Biting back against a common threat
- News12 months ago
The next gen-air-ation of sensory spaces
- Interviews4 weeks ago
The neuropsychologist teaching tai chi
- Opinion1 year ago
How to find the perfect powerchair
- News2 months ago
‘Excluded’, ‘stigmatised’ and ‘feeling inadequate’
- More headlines10 months ago
2020: The year of the exoskeleton?
- Insight2 years ago
A ticking timebomb in stroke care
- More headlines2 months ago
From brain injury to Bafta