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[WEB SITE] 10 things not to say to someone with a brain injury

10 things not to say to someone with a brain injury

 But you don’t look disabled!

Living with a brain injury presents a wide range of challenges, but one of the most difficult things for many survivors is the lack of understanding from the people around them.

Because of this, people with a brain injury often face comments from well-meaning family members, friends and strangers that only add to the frustration of living with a complex and often invisible condition.

To help address the problem, we asked our members to share their experiences of this and, judging by the responses we received, it’s clear this is an issue many people face! Here’s the top ten list of things not to say to someone living with a brain injury…

I know what you mean…I’ve got a terrible memory too!

For people who don’t have a brain injury, it can be difficult to imagine the reality of living with a memory problem. After all, we all forget things, but an injury to the brain can stop memories being stored and/or retrieved, meaning people genuinely can’t remember. Being forgetful and having memory problems as a result of brain injury are worlds apart!

Despite the best intentions, saying things like ‘I have a terrible memory too’ risks showing a lack of understanding and can come across as patronising and offensive.

But you don’t look disabled…

Brain injury is often referred to as ‘the hidden disability’ because the cognitive, emotional and behavioural effects can still be present long after any physical injuries have healed.

Don’t assume that just because someone looks fine on the outside, they’re not experiencing long-term effects. Comments such as: ‘It doesn’t look like there’s anything wrong with you’ and ‘But you’re better now, aren’t you?’ are unlikely to help!

Move on and stop dwelling on what happened.

One to avoid at all costs! The effects of a brain injury can last for weeks, months, years, or even a lifetime. Improvements may happen through the natural healing process, rehabilitation, hard work or a combination of these, but a person can’t simply decide to ‘get better’ and move on.

Encouragement and support are the best ways you can help people maximise their recovery after brain injury.

You should be back to normal by now.

Two big problems with this one!

Assessing the effects and likely outcomes of a brain injury challenges even the most experienced doctors, so receiving this advice is likely to result in an angry response. Yes, the injury may have occurred ‘a while ago’, but the recovery process is different for everyone and for some people the effects of a brain injury may last a lifetime.

At the same time, the word ‘normal’ can inadvertently cause offence. What is normal? Suggesting a person is not ‘normal’ again could lead to feelings that they are somehow inferior.

For someone living with a long-term condition, that’s not nice to hear!

You’re tired? At your age?!

A surprising number of people experience comments along these lines. Fatigue is a very real and very debilitating effect of a brain injury, but because it’s often almost completely invisible, it’s perhaps understandable that people don’t immediately pick up on the difficulties it can cause.

Living with fatigue is very different to the normal feeling of tiredness we all experience at the end of a busy day. It requires careful management and the support and understanding of friends, family and colleagues.

It’s all in your mind!

A brain injury does affect the mind, but unfortunately not in a way that means a person can just decide to get better. Damage to the brain cannot be repaired, and any recovery is a result of the brain adapting to change and finding new ways to work.

This isn’t something that can be controlled by simple conscious thought so there’s little more frustrating for a person with a brain injury than being told to ‘snap out of it’!

Chin up – there’s always someone worse off.

This common line is certainly well-meaning, with a clear intention to make the person with a brain injury feel better about their situation and encourage positive thinking.

But when dealing with everyday fatigue, memory problems, difficulty concentrating or anything else from the long list of brain injury symptoms, it doesn’t always help to know that some people are dealing with worse.

Instead of saying ‘It could’ve been worse’, a better approach might be simply to acknowledge their difficulties, offering help if it’s needed.

Are you sure you should be doing that?

An essential part of the rehabilitation process is relearning lost skills by pushing yourself to do challenging tasks. It’s often better to give things a go than simply accept defeat, so having your ability judged by someone else can be extremely frustrating. It’s great to offer help and support in case the person with a brain injury can’t manage a task, but tread carefully when judging ability.

One of the key aims of Headway is to help people regain as much independence as possible. Brain injury survivors don’t want people to do everything for them – they want help to be able to do things themselves.

I know someone who had a brain injury and they’re fine now.

This comes down to something many people don’t understand – no two brain injuries are the same! Even two people with very similar injuries may experience totally different effects, and while it can be a motivation to hear of other people making good progress, it certainly isn’t helpful to be judged for not recovering as quickly as them.

But you were able to do that yesterday…

People who say this don’t realise the fluctuating nature of a brain injury, which is often down to fatigue. In some cases it can be because they did a task yesterday that they can’t today.

Pushing too hard after a brain injury can cause difficulties for hours or even days afterwards, and this is a time when support and understanding is needed more than ever.


via 10 things not to say to someone with a brain injury | Headway


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[WEB SITE] Smoking Tied to Worse Outcomes After a Stroke

Smoking Tied to Worse Outcomes After a Stroke


People who smoke or have recently quit have higher odds of being severely impaired after a stroke than their counterparts who never smoked, a new study suggests.

Smoking has long been linked to an increased risk of cardiovascular disease and serious events like heart attacks and strokes. But the new study sheds light on how smoking in the period before a stroke impacts how easily people will be able to navigate daily life afterward.

Compared to nonsmokers, those who were current smokers at the time of their stroke were 29% more likely to have poor functional outcomes afterward, the study found. And while former smokers overall were at no higher risk for poor outcomes than nonsmokers, that wasn’t true for former smokers who had quit within the past two years; this group was 75% more likely to function poorly after the stroke.

The findings were similar for being functionally dependent on others three months after a stroke, the study team notes in the journal Stroke.

“Smoking could be an important and modifiable factor that hinders post-stroke functional recovery,” said study co-author Tetsuro Ago of Kyushu University in Fukuoka, Japan.

“Patients, particularly those harboring stroke risks, should quit smoking as soon as possible,” Ago said by email.

While most stroke patients can recover functionality to some extent after several months, the degree of recovery can vary among individuals, Ago said. Some people can have lasting deficits in physical or mental functioning that make it harder for them to complete daily tasks like dressing, bathing and walking.

Everyone in the current study had an ischemic stroke, the most common kind, which occurs when a clot blocks an artery carrying blood to the brain.

Patients were 70 years old, on average, and roughly one in four were current smokers. Another 32% were former smokers and 43% had no history of smoking.

Among current smokers, the risk of poor functional outcomes increased with the number of cigarettes they smoked each day. Smokers who went through more than a pack a day were 27% to 48% more likely to have poor functional outcomes three months after a stroke than nonsmokers, and they were also 32% to 53% more likely to depend on others to help them get through daily routines.

One limitation of the study is that researchers relied on stroke patients to accurately recall and report any smoking history or current smoking habits. Researchers also lacked data on any secondhand smoke exposure, which might also influence outcomes.

Still, the results suggest that smoking cessation later in life may help minimize disability and disruption to daily life after a stroke, Ago said.

“Smoking cessation may be effective even in elderly patients who have smoked for a long time,” Ago said. “If smokers cannot quit, they should strictly manage other stroke risks, such as hypertension and diabetes, and should exercise and avoid obesity to minimize damage of small blood vessels in the brain.”

[Source: Reuters Health]


via Smoking Tied to Worse Outcomes After a Stroke – Rehab Managment

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[Abstract] Improving Healthcare Access: a Preliminary Design of a Low Cost Arm Rehabilitation Device


A low cost continuous passive motion (CPM) machine, the Gannon Exoskeleton for Arm Rehabilitation (GEAR), was designed. The focus of the machine is on the rehabilitation of primary functional movements of the arm. The device developed integrates two mechanisms consisting of a four-bar linkage and a sliding rod prismatic joint mechanism that can be mounted to a normal chair. When seated, the patient is connected to the device via a padded cuff strapped on the elbow. A set of springs have been used to maintain the system stability and help the lifting of the arm. A preliminary analysis via analytical methods is used to determine the initial value of the springs to be used in the mechanism given the desired gravity compensatory force. Subsequently, a multi-body simulation was performed with the software SimWise 4D by Design Simulation Technologies (DST). The simulation was used to optimize the stiffness of the springs in the mechanism to provide assistance to raising of the patient’s arm. Furthermore, the software can provide a finite element analysis of the stress induced by the springs on the mechanism and the external load of the arm. Finally, a physical prototype of the mechanism was fabricated using PVC pipes and commercial metal springs, and the reaching space was measured using motion capture. We believed that the GEAR has the potential to provide effective passive movement to individuals with no access to post-operative or post-stroke rehabilitation therapy.

via Improving Healthcare Access: a Preliminary Design of a Low Cost Arm Rehabilitation Device | Journal of Medical Devices | ASME Digital Collection

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[Abstract + References] A Novel Exoskeleton with Fractional Sliding Mode Control for Upper Limb Rehabilitation


The robotic intervention has great potential in the rehabilitation of post-stroke patients to regain their lost mobility. In this paper, firstly, we present a design of a novel, 7 degree-of-freedom (DOF) upper limb robotic exoskeleton (u-Rob) that features shoulder scapulohumeral rhythm with a wide range of motions (ROM) compared to other existing exoskeletons. An ergonomic shoulder mechanism with two passive DOF was included in the proposed exoskeleton to provide scapulohumeral motion with corresponding full ROM. Also, the joints of u-Rob have more range of motions compared to its existing counterparts. Secondly, we propose a fractional sliding mode control (FSMC) to control u-Rob. Applying the Lyapunov theory to the proposed control algorithm, we showed the stability of it. To control u-Rob, FSMC has shown effectiveness to handle unmodeled dynamics (e.g. friction, disturbance, etc.) in terms of better tracking and chatter compared to traditional SMC.


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via A Novel Exoskeleton with Fractional Sliding Mode Control for Upper Limb Rehabilitation | Robotica | Cambridge Core

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[Abstract] Development of an active and passive finger rehabilitation robot using pneumatic muscle and magnetorheological damper


An FRR is developed for active and passive training using two PMs and an MR damper.

An underactuated mechanism is proposed for independent training of all finger joints.

Modelling of kinematics, statics and dynamics of the FRR is presented.

The motion and force properties of the FRR are experimentally evaluated.


This paper presents the development of a finger rehabilitation robot (FRR) for active and passive training to fulfill the requirements of different rehabilitation stages. In the design, an antagonistic pair of pneumatic muscles (PMs) are utilized to exert a bidirectional force for passive training, and a controllable magnetorheological (MR) damper is used to provide a damping force for active training. In this paper, first, a detailed illustration of the mechanical design of the FRR, including the driving, transmission and actuating mechanisms, and the damping device, is presented. Subsequently, the kinematic analysis and simulation are described, followed by the static and dynamic analysis of the designed FRR. This paper details the static force transfer of the transmission mechanism, and the establishment of dynamic equations for the passive training system. Finally, an experimental set-up is established, and several passive and active training experiments are conducted for the performance evaluation of the FRR prototype. The results validate the feasibility and stability of the developed FRR.


via Development of an active and passive finger rehabilitation robot using pneumatic muscle and magnetorheological damper – ScienceDirect

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[Abstract] Upper Limb Movement Modelling for Adaptive and Personalised Physical Rehabilitation in Virtual Reality – Thesis


Stroke is one of the leading causes of disability with over three-quarters of patients experiencing an upper limb impairment varying in severity. Early, intense, and frequent physical rehabilitation is important for quicker recovery of the upper limbs and the prevention of further deterioration of their upper limb impairment. Rehabilitation begins almost immediately at the hospital. Once released from the hospital it is intended that patients continue their rehabilitation program at home supported by a community stroke team. However, there are two main barriers to rehabilitation continuing effectively at this stage. The first is limited contact with a physiotherapist or occupational therapist to guide and support an intensive rehabilitation programme. The second is that conventional rehabilitation is tough to maintain immediately after stroke due to fatigue, lack of concentration, depression and other effects. Stroke patients can find exercises monotonous and tiring, and a lack of motivation can result in patients failing to engage fully with their treatment. Lack of participation in prescribed rehabilitation exercises may affect recovery or cause deterioration of mobility.

This thesis examines the hypothesis that upper limb stroke rehabilitation can be made more accessible and enjoyable through the use of modern commercial virtual reality (VR) hardware, with personalised models of user hand motion adapted to user capability over time, and VR games with tasks that utilise natural hand gestures as input controls to execute personalised physical rehabilitation exercises. To support the investigation of this hypothesis a novel adaptive, gamebased, virtual reality (VR) rehabilitation system has been designed and developed for self-managed rehabilitation. Hands are tracked using a Leap Motion Controller, with hand movements and gestures used as in input controller for VR tasks. A user-centred design methodology was adopted, and the final version of the system was evolved through several versions and iterative testing and feedback through trials with able-bodied testers, stroke survivor volunteers, and practising clinicians.

A key finding of the research was that an adapted form of Fitts’s law, that models difficulty of reaching and touching objects in 3D interaction spaces, could be used to profile movement capability for able-bodied people and stroke patients vii in upper arm VR stroke rehabilitation. It was also found that even when Fitts’s law was less effective, that the statistics of the regression quality were still informative in profiling users. Fitts law regression statistics along with information on task performance (such as percentage of hits) could be used to adapt task difficulty or advising rest. Further, it was found that multiple regression could provide better movement capability profiles with a modified form of Fitts law to account for varying degrees of difficulty due to the angles of motion in 3D space. In addition, a novel approach was developed which profiled sectors of the 3D VR interaction space separately, rather than treat movement through the whole space as being equally difficult. This approach accounts for some stroke patients having more difficulty moving in some directions than others, e.g. up and left. Results demonstrate that this has potential but may need to be investigated further with stroke patients and with larger numbers of people.

The VR system that utilised the movement capability model was evolved over time with a user-centred design methodology, with input from able-bodied people, stroke patients, and clinicians. A final longitudinal study investigated the suitability of three bespoke games, the usability of the system over a longer time, and the effectiveness of the movement profiler and adaptive system. Throughout this experiment, the system provided informative user movement profile variations that could identify unique movement behaviour traits in individuals. Results showed that user performance varied over time and the adaptive system proved effective in changing the difficulty of the tasks for individuals over multiple sessions. The VR rehabilitation games incorporated enhanced gameplay and feedback, and users expressed enjoyment with the interactive experience. Throughout all of the experiments, users enjoyed wearing a VR headset, preferring it over a standard PC monitor. Most users subjectively felt that they were more effective in completing tasks within VR, and results from experiments provided empirical evidence to support this view. Results within this thesis support the proposal that an appropriately designed, adaptive gamebased VR system can provide an accessible, personalised and enjoyable rehabilitation system that can motivate more regular rehabilitation participation and promote improved motor function.

via Upper Limb Movement Modelling for Adaptive and Personalised Physical Rehabilitation in Virtual Reality — Ulster University

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[ARTICLE] Relationship Between Motor Capacity of the Contralesional and Ipsilesional Hand Depends on the Side of Stroke in Chronic Stroke Survivors With Mild-to-Moderate Impairment – Full Text

There is growing evidence that after a stroke, sensorimotor deficits in the ipsilesional hand are related to the degree of impairment in the contralesional upper extremity. Here, we asked if the relationship between the motor capacities of the two hands differs based on the side of stroke. Forty-two pre-morbidly right-handed chronic stroke survivors (left hemisphere damage, LHD = 21) with mild-to-moderate paresis performed distal items of the Wolf Motor Function Test (dWMFT). We found that compared to RHD, the relationship between contralesional arm impairment (Upper Extremity Fugl-Meyer, UEFM) and ipsilesional hand motor capacity was stronger (R2LHD=RLHD2= 0.42; R2RHDRRHD2 < 0.01; z = 2.12; p = 0.03) and the slope was steeper (t = −2.03; p = 0.04) in LHD. Similarly, the relationship between contralesional dWMFT and ipsilesional hand motor capacity was stronger (R2LHD=RLHD2= 0.65; R2RHDRRHD2 = 0.09; z = 2.45; p = 0.01) and the slope was steeper (t = 2.03; p = 0.04) in LHD compared to RHD. Multiple regression analysis confirmed the presence of an interaction between contralesional UEFM and side of stroke (β3 = 0.66 ± 0.30; p = 0.024) and between contralesional dWMFT and side of stroke (β3 = −0.51 ± 0.34; p = 0.05). Our findings suggest that the relationship between contra- and ipsi-lesional motor capacity depends on the side of stroke in chronic stroke survivors with mild-to-moderate impairment. When contralesional impairment is more severe, the ipsilesional hand is proportionally slower in those with LHD compared to those with RHD.


It is now well-known that unilateral stroke not only results in weakness of the opposite half of the body, i.e., contralateral to the lesion or contralesional limb, but also significant motor deficits in the same half of the body, i.e., ipsilateral to the lesion or ipsilesional limb (14). Previous work suggests that deficits in the ipsilesional arm and hand varies with the severity of contralesional deficits, especially in the sub-acute and chronic phase after stroke (58). More interestingly, the unilateral motor deficits observed for contralesional and ipsilesional limbs seem to be hemisphere-specific and thus depend on side of stroke lesion (915). For predominantly right-handed cohorts, contralesional deficits appear to be more severe in those with right hemisphere damage (RHD), in whom the contralesional limb is non-dominant. For example, using clinical motor assessments of grip strength and hand dexterity, Harris and Eng (11) showed that contralesional motor impairments were less severe in chronic stroke survivors who suffered damage in the dominant (i.e., left) hemisphere (LHD) compared to those who suffered damage in the non-dominant (right) hemisphere (1115).

In contrast, considering ipsilesional motor deficits, the evidence is mixed concerning hemisphere-specific effects. For instance, some studies reported that individuals with LHD exhibited more severe ipsilesional arm and hand deficits compared to those with RHD (41517) while others have reported no difference in ipsilesional hand motor capacity between LHD and RHD (2). In acute stroke survivors, Nowak et al. demonstrated that deficits in grip force of the ipsilesional hand were significantly associated with clinical measures of function of the contralesional hand only in LHD (12). Contrary to this, de Paiva Silva et al. (14) found that compared to controls and LHD, the ipsilesional hand in chronic stroke survivors was significantly slower and less smooth in RHD especially when contralesional impairment was relatively more severe (UEFM < 34).

Taken together, there is converging evidence regarding the relationship between motor deficits of the contralesional and ipsilesional upper extremity, such that ipsilesional deficits are worse when contralesional impairment is greater (Figure 1A); however, it is uncertain whether the relationship between the two limbs depends on which hemisphere is damaged. In particular, motor deficits of the two limbs are most prominent for tasks that require dexterous motor control (e.g., grip force, tapping, tracking). For predominantly right-handed cohorts (as is the case in most studies), contralesional deficits appear to be more severe in those with RHD, in whom the contralesional limb is non-dominant; whereas ipsilesional deficits are more severe in those with LHD. An exception to this observation for those with RHD seems to be in the case when contralesional impairment is most severe (i.e., UEFM < 34) (14). Thus, one might predict that as contralesional impairment worsens, individuals with LHD would have proportionally worse ipsilesional deficits, but individuals with RHD (especially if say UEFM > 34) would not; see Figures 1B,C for two alternative hypotheses. To our knowledge, this prediction has not before been explicitly tested.

Figure 1. Hypothesized effects represented in schematic figure. (A) The null hypothesis, wherein the relationship between contralesional (CL) impairment and ipsilesional (IL) motor capacity is not modified by the side of stroke lesion, i.e., β1 ≠ 0 but β3 = 0. (B) Alternative hypothesis 1, wherein ipsilesional deficits are related to contralesional impairment but only in LHD (blue) and not in RHD (red). (C) Alternate hypothesis 2, wherein ipsilesional deficits are related to contralesional impairment but only in LHD and in RHD with severe impairment (represented in the shaded dark-gray area). For both alternate hypotheses, β1 and β3 ≠ 0.


via Frontiers | Relationship Between Motor Capacity of the Contralesional and Ipsilesional Hand Depends on the Side of Stroke in Chronic Stroke Survivors With Mild-to-Moderate Impairment | Neurology

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[Abstract] Pushing the limits of recovery in chronic stroke survivors: User perceptions of the Queen Square Upper Limb Neurorehabilitation Programme – Full Text PDF


Introduction: The Queen Square Upper Limb (QSUL) Neurorehabilitation Programme is a clinical service within the National Health Service in the United Kingdom that provides 90 hours of therapy over three weeks to stroke survivors with persistent upper limb impairment. This study aimed to explore the perceptions of participants of this programme, including clinicians, stroke survivors and carers.

Design: Descriptive qualitative.

Setting: Clinical outpatient neurorehabilitation service.

Participants: Clinicians (physiotherapists, occupational therapists, rehabilitation assistants) involved in the delivery of the QSUL Programme, as well as stroke survivors and carers who had participated in the programme were purposively sampled. Each focus group followed a series of semi-structured, open questions that were tailored to the clinical or stroke group. One independent researcher facilitated all focus groups, which were audio-recorded, transcribed verbatim and analysed by four researchers using a thematic approach to identify main themes.

Results: Four focus groups were completed: three including stroke survivors (n = 16) and carers (n = 2), and one including clinicians (n = 11). The main stroke survivor themes related to psychosocial aspects of the programme (″ you feel valued as an individual ″), as well as the behavioural training provided (″ gruelling, yet rewarding& [Prime]). The main clinician themes also included psychosocial aspects of the programme (″ patient driven ethos − no barriers, no rules ″), and knowledge, skills and resources of clinicians (″ it is more than intensity, it is complex ″).

Conclusions: As an intervention, the QSUL Programme is both comprehensive and complex. The impact of participation in the programme spans psychosocial and behavioural domains from the perspectives of both the stroke survivor and clinician.

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via Pushing the limits of recovery in chronic stroke survivors: User perceptions of the Queen Square Upper Limb Neurorehabilitation Programme. | medRxiv

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[WEB SITE] Keep an Eye on Your Loved Ones at Home with ROSIE

By  | Jan 15, 2020

Keep an Eye on Your Loved Ones at Home with ROSIE


Forma SafeHome LLC announces the launch of its senior home monitoring service that aims to facilitate more prolonged in-home independence for aging-in-place seniors or the disabled.

The fall detection and health monitoring customization bundle features advanced technologies integrated into ROSIE SafeHome, an all-in-one, patent-pending app designed to provide alerts, notifications, and messages that show the user if there is any unusual activity.

The app, available for download on iTunes and Google Play, is accessible on smartphones and tablets to allow family members 24/7 access into the safety of their loved ones through the coordination of these technologies, according to the Sunrise, Fla-based company:

  • Non-intrusive fall and motion detectors
  • Kitchen and stove monitoring
  • Outdoor doorbell camera systems
  • Coming soon: medication protocol monitors and more smart home technology

“Our Rosie Home Fall detector, Rosie Home Stove/Oven monitor, and Rosie Home Doorbell Cam will give peace of mind knowing your independent family members are in a safe environment,” says Scott Daub, President, Forma SafeHome LLC, in a media release.

Rich Cohen, Forma SafeHome Advisory Board Member adds, “Through the blend of innovative and non-intrusive technology, the patent-pending app gives you real-time information about falls, safety, and life patterns via your iPhone or Android device. It is affordable and gives you peace of mind about your independent-living family members in ways never previously available.”

[Source(s): Forma SafeHome, PRWeb]


via Keep an Eye on Your Loved Ones at Home with ROSIE – Rehab Managment

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[Abstract + References] Game Design Principles Influencing Stroke Survivor Engagement for VR-Based Upper Limb Rehabilitation: A User Experience Case Study – Proceedings


Engagement with one’s rehabilitation is crucial for stroke survivors. Serious games utilising desktop Virtual Reality could be used in rehabilitation to increase stroke survivors’ engagement. This paper discusses the results of a user experience case study that was conducted with six stroke survivors to determine which game design principles are or would be important for engaging them with a desktop VR serious games designed for the upper limb rehabilitation. The results of our study showed the game design principles that warrant further investigation are awareness, feedback, interactivity, flow and challenge; and also important to a great extent are attention, involvement, motivation, effort, clear instructions, usability, interest, psychological absorption, purpose and a first-person view.


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via Game Design Principles Influencing Stroke Survivor Engagement for VR-Based Upper Limb Rehabilitation | Proceedings of the 31st Australian Conference on Human-Computer-Interaction

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