Ulla Konnerup

Engaging People with Aphasia in Design of Rehabilitation Through Participatory Design: A Way to Learn what They Really Want

Research literature on participatory design in relation to people with communicative and cognitive disabilities often focuses on the challenges of communication among the participants. This paper presents a case study involving people suffering from communication disabilities after a brain injury (aphasia) early in a design process of an avatar-mediated virtual learning environment for rehabilitation. The example demonstrates how providing time and space and supporting the communication with well-suited tools and artefact opens for firth-hand domain knowledge of living with aphasia. The results demonstrate that participatory design methods might result in much more than just being a step in the design process. In this specific case, it turns out to be a tool to engage, involve, and empower people with communication disabilities to interact and communicate. The paper argues, that participatory design is a way for designers to gain insights into what people with aphasia really want and, consequently, might also be a key to redesign rehabilitation for people with communication disabilities.

Inclusive Digital Technologies for People with Communication Disabilities

Suffering from communication disabilities limits a person’s ability to participate in communicative and social interactions, public democratic debates and learning activities. The possibility of trying out ideas and opinions is weakened and it might have an impact on the ability to tell one’s life story and to process inner thoughts. Consequently, it may affect the sufferer’s self-understanding and lead to psychological problems. If it is not possible to find alternatives and compensation strategies for telling your story, presenting who you are, and participating in meaningful dialogues, it is likely that your intellectual level will gradually decrease. Advances in information and communication technologies (ICT), such as smartphones, tablets, and Internet connectivity, have contributed to the integration of many aspects of communication and learning strategies. Thus, new methods to enhance inclusion and empowering people with communication difficulties are offered. However, more knowledge about how learners with special challenges benefit from ICT in their communication and learning and what kind of technology that qualify rehabilitation is needed. Based on research with people suffering from aphasia after a brain injury this chapter will demonstrate how digital technologies can support sufferer’s in acquiring some new ways to re-engage people in communicative relations and learning activities.

Renegotiation of Identity after a Brain Injury Using Immersive Virtual Environments

Background: Acquired brain injury (ABI) is often a lifelong disability that entails a marked change in a person’s life. It involves biopsychosocial levels and return to work (RTW) is one of the mai ...Accepted Abstracts from the International Brain Injury Association’s Eleventh World Congress on Brain InjuryObjective: To investigate whether: 1) traumatic brain injury (TBI) reduces striatal dopamine transporter (DAT) levels; 2) TBI causes structural changes to the substantia nigra and/or nigrostriatal tract; 3) DAT levels following TBI correlate with substantia nigra or nigrostriatal tract damage; 4) DAT levels relate to behavioural measures of apathy and/or speed of processing. Background: Persistent cognitive problems following TBI are common. The heterogeneous nature of TBI means that the basis of cognitive dysfunction is likely to be multi-factorial. Animal and human studies have shown dopaminergic disruption following TBI. However, the cause of this disruption is unclear and may relate to damage to the dopaminergic nuclei or their ascending projections. Design/Methods: 32 moderate/severe TBI patients with persistent cognitive problems and 15 healthy controls had an ioflupane ( 123 I) SPECT scan (DaTscan), MRI and full neuropsychological assessment. DAT levels in the striatum were measured. MRI was used to calculate substantia nigra volumes and nigrostriatal tract diffusion metrics. Results: Quantitative assessment showed reduced DAT levels in TBI patients. Patients had substantia nigra atrophy, as well as increased mean diffusivity in the nigrostriatal tract. There was a significant relationship between (1) DAT levels and substantia nigra volumes in patients and (2) mean diffusivity in the nigrostriatal tract and anterior striatal DAT levels. DAT levels showed a significant relationship with apathy measures but not speed of processing. Conclusions: A proportion of TBI patients with persistent cognitive problems have reduced striatal DAT levels implying a disruption to their dopaminergic system. DAT levels are correlated with structural changes in the substantia nigra and nigrostriatal tract. This supports a causal relationship between damage to these regions by TBI and functional dopaminergic dysfunction. Reduced DAT levels also relate to apathy. Dopaminergic therapies may therefore benefit those patients with evidence of disruption to their dopaminergic systems. Study Supported by: Guarantors of Brain NIHR Disclosure: Dr. Jenkins has nothing to disclose. Dr. De Simoni has nothing to disclose. Dr. Bourke has nothing to disclose. Dr. Cole has nothing to disclose. Dr. Sharp has nothing to disclose.Objectives: The majority of patients with traumatic brain injury (TBI) sustain a mild TBI, of which the prognosis isgenerally favourable. However, patients with moderate-to-severe TBI can experience long-lasting cognitive, emotional and behavioural deficits that interfere with functioning in daily life and the resumption of work. Current literature suggests that executive functioning and coping style are important factors affecting outcome. Moreover, it is suggested that intact executive functioning is a pre-requisite for the use of adaptive coping; as executive processes such as foresight, planning and initiation seem essential for the employment of active coping strategies. So far, the exact association between executive functioning and coping remains unclear, as literature has pro-vided us with mixed results. The aim of the present study is 2-fold. First, we aim to assess the association between executive functioning and coping among patients with TBI at different levels of severity. Second, we aim to investigate to what extent injury severity influences the association between executive ability and coping as a moderating factor.Methods: We included 109 TBI patients from two prospective follow-up studies, of which 53 patients were classified as mild TBI, 19 patients as moderate and 37 patients as severe. Additionally, 33 healthy controls were included. Executive functioning and coping style were assessed by neuropsycho-logical examination in the post-acute and chronic phase after TBI. Results: Greater self-reported executive dysfunction was related to greater use of passive coping styles in all separate levels of severity and in the mixed TBI group (β= 0.591,p<0.001). Additionally, a lower amount of self-reported executive dysfunction was related to higher levels of active coping in the mixed TBI group (β=–0.457,p< 0.001) and the mild and severe TBI groups. Additionally, better performance on an executive test for response inhibition was related to greater use of active coping in the total TBI group (β=–0.178,p=0.047). No evidence for a moderating effect of injury severity on the association between executive functioning and coping was found. Conclusions: Self-reported executive functioning was a significant predictor of coping style at all levels of injury severity inpatients with TBI. Individuals who reported greater executive problems were predisposed to rely on a maladaptive passive coping style. Furthermore, these results suggest that less self-reported executive dysfunction was related to a higher use of an active coping style.Libra Rehabilitation & Audiology Dept. of Neurorehabilitation PO Box 1355, 5602 BJ Eindhoven E info@libranet.nl I www.libranet.nl Correspondence to Ingrid Brands, MD, PhD i.brands@libranet.nl Introduction  Self-efficacy refers to the belief in one’s ability to achieve goals. In patients with acquired brain injury (ABI) higher levels of general self-efficacy and self-efficacy for managing brain injury-specific symptoms have shown to be associated with better quality of life (QoL).1  Being highly self-efficacious in managing one’s health issues is assumed to be a key factor in successful chronic disease selfmanagement.2  Neuropsychological rehabilitation programmes focus on teaching patients to compensate for and manage their cognitive deficits and the social and emotional consequences of ABI. Yet, do these programmes lead to higher levels of self-efficacy in managing brain injury-specific symptoms? Results  QoL and brain injury-specific self-efficacy increased significantly after neuropsychological rehabilitation. Table 2  Both general and brain injury-specific self-efficacy were positively associated with QoL after neuropsychological rehabilitation. Table 3  A lower initial level of cognitive functioning predicted worse QoL after neuropsychological rehabilitation (β = −.63, p = .05).  Cognitive functioning was not significantly associated with initial brain injury-specific self-efficacy (r = .13, p = .60). Objective We examined:  the influence of neuropsychological rehabilitation on general and brain injury-specific self-efficacy and on QoL,  whether initial levels of general and brain injury-specific selfefficacy and cognitive functioning would predict QoL after neuropsychological rehabilitation,  whether cognitive functioning was associated with initial selfefficacy for managing brain injury-related symptoms.Objectives: Disability research as an academic field was established in the 1960s and 1970s in the Nordic countries and in the Anglo-Saxon world. Disability research was studied within the medical model, e.g. in medical and rehabilitation studies, while disability studies became a part of the social model, e.g. in social and psychological studies. It has been a lack of theoretical perspective in disability research and according to that a discussion of theoretical approaches in disability studies that has been raised during recent years. The aim of the study is to describe and illustrate conceptually how vertical and horizontal knowledge integration appear in disability research, exemplified within a case from a person with acquired brain injury.Methods: The study adopted a qualitative approach to answer the research aim, undertaking a literature review to accompany an analysis of the concepts, vertical and horizontal. The concepts were thereafter analysed within theories from disability research and exemplified with a case from brain injury rehabilitation.Results: Tentatively the conceptions, vertical and horizontal, are described and, in addition, a bio-psycho-social perspective is mentioned andtwo theoretical approaches within disability research are described: human functioning sciences and interdisciplinary research. Vertical knowledge integration can be seen as a stratification between differentlevels on a biological, psychological and social level. Horizontal knowledge integration can be understood across varying disabilities. The study indicates that vertical and horizontal knowledge integration in disability research are useful for a broader and deeper understanding of disability and functional impairment where, over the last few years, different theoretical perspectives have become increasingly common. Furthermore, the study shows that acquired brain injury, in a scientific context, has been studied within different levels of society. For example:●On a biological level, e.g. within biochemical bloodanalysis;●On a psychological level, e.g. within neuropsychologicaldiagnostics; and●On a social level, e.g. as a changeover process duringrecovery.Conclusions: The study indicates that a variety of scientific contributions are needful in our understanding of the phenomenon of living withacquired brain injuryin the contemporary society.