Based on ten experiments, this thesis examines representational neglect in brain damaged patients and in matched controls.  The patients sometimes show a specific deficit in visual imaging:  neglected one half of their mental representations.  Although several studies addressed the issue of visuo-perceptual neglect, the representational defect is underinvestigated.  Only a few standardized tests are available for its detention and assessment, and therefore rarely it is diagnosed in clinical practise or investigated in experimental work.  In this thesis some new tests to investigate representational neglect are proposed.  Moreover, representational neglect is evaluated in different sensory modalities (visual, tactile as well as within the personal domain) to address the issue of supramodality or plurimodality of this deficit.

M.A. / As medical technology and procedures continue to improve, traumatically brain injured persons who previously would not have lived through their injuries are managing to survive. The traumatically brain-injured person must learn to cope with the profound physical, cognitive, emotional, and personality changes that are produced from brain trauma. Within the family system, the members reciprocally influence one another. Major events that occur within the family system have an immense effect on the family relationships, dynamics, roles, and expectations. A traumatic brain injury, with its sudden onset and the inherent uncertainty regarding recovery and rehabilitation, can have a devastating effect on the family as a whole, and upon its individual members. Research on the familial effects of a member’s traumatic brain injury portrays a bleak image of the family in the aftermath of TBI, and for years afterwards. Grief, anger, guilt, blame, loneliness, depression, and isolation are often reported in the literature. The literature focuses mainly on the primary caregiver, usually the spouse of the TBI person, or the parent of a TBI child. Limited research has been conducted regarding the psychological effects on the offspring of parents who sustain traumatic brain injuries. Surely, children and adolescents will feel the effects of a parent’s brain injury differently than a spouse would. However the actual experience as perceived by the offspring has been neglected in research thus far. Adolescents were the focus of the current study. Being in a time of transition between childhood and adulthood, it was thought that they would experience the effects of a parental brain injury differently than younger children or adults within the family would. The existential-phenomenological approach employed as the research methodology allowed for a rich, in depth understanding of the adolescents as beings-in-the-world interpreting their own experiences of having a traumatically brain-injured parent. Six adolescent offspring of traumatically brain-injured parents were sourced from Headway Gauteng, and interviewed for the study. The four interviews that were used for the intense phenomenological analysis were transcribed verbatim. Themes were derived from the experience of each participant, and then integrated and related to the relevant available literature and within the wider context of existential phenomenology, in order to arrive at an in-depth understanding of the adolescent experience of a parent’s traumatic brain injury. The phenomenon of parental traumatic brain injury in the lifeworlds of the adolescents was characterized by numerous themes. Adolescents experienced (to varying degrees) denial, anger, grief, guilt, and anxiety. There was a tendency towards overprotectiveness of the injured parent, resulting in the parentification of the adolescents. Loneliness and a sense that nobody could understand their feelings were particularly strong themes, perhaps exacerbated by the importance of conformity during the adolescent period. Furthermore, the adolescents experienced drastic changes in their lives following their parents’ traumatic brain injuries. Not only were family roles and dynamics affected, but also the adolescents reported extensive changes in themselves. There were sudden increases in their responsibilities alongside a sense that they were forced to mature sooner than their peers. The adolescents coped using both approach and avoidance styles of coping. Religion was a theme in the lives of all four adolescents. Despite the professed negative impact of the experience of having a traumatically brain-injured parent, the adolescents in the current study managed to find some degree of positive meaning in having to cope with such a traumatic event and its consequences. Professionals working with brain-injured clients and their families will find value in the present study. The in-depth description of the experience of adolescents with brain-injured parents will be helpful in planning support programmes and interventions following familial brain injuries. The findings of this study have also been the basis for recommendations for future empirical investigations.

M.Ed. / This study focuses on the role of the medico-legal team, and the educational psychologist in particular, towards the family whose child has survived Traumatic Brain Injury through an involvement in a motor vehicle accident. In South Africa there is a high incidence of motor vehicle accidents. This incidence, adversely affects families, emotionally, socially and economically. Research has shown that the incidence of Traumatic Brain injury (TBI) is higher in South Africa than the worldwide average as compared to other developing countries. This prevalence is confirmed by the Road Accident Fund, a government entity that is responsible for compensating victims of negligent road users that approximately 10 000 people die and 150 000 sustain injuries in South African roads every year. The study was conducted as an attempt to answer the research question: What is the experience of a family whose child has sustained a Traumatic Brain Injury? The envisaged outcomes of the research would then assist the researcher to offer recommendations for educational psychologists working with children who had survived TBI and their families, aimed addressing the needs of such families. The research paradigm emanates from a systemic view. It is a qualitative case study, drawn from a particular selected family, as a unit of study. Data was collected through unstructured interviews, and interviews were audio-taped and transcribed. Other sources of data were collected from hospital records, psychological records and letters from the school to be used as supporting evidence. The findings of the study suggest that families are subject to shock of the trauma, that they experience loss, they grieve for a lost one and have to cope with daily frustration, when their child survives a Traumatic Brain Injury. Recommendations have been drawn to provide a sound framework for educational psychologists who work with families whose children has experienced TBI. / Mrs. J.V. Fourie

Ämnet är musikterapi med hjärnskadade personer, skrivet inom ramen för Magisterprogrammet i musikpedagogik med inriktning musikterapi vid Kungl. Musikhögskolan i Stockholm, 2012. Syftet med uppsatsen är att bidra till ökad kunskap om hur det är att tolka och förstå hjärnskadade personers sätt att kommunicera i en musikterapisituation, då dessa har nedsatt kommunikationsförmåga, afasi, svårt med empati, ett utslätat känsloliv, stel mimik och liknande. Uppsatsen har en kvalitativ forskningsansats med hermeneutiska inslag och metoden är semistrukturerade intervjuer. Undersökningsgruppen utgörs av tre professionellt utövande musikterapeuter som alla tre har erfarenhet av musikterapeutiskt arbete med personer som drabbats av grava, förvärvade, hjärnskador. Forskningsfrågan är: På vilka sätt uppfattar tre musikterapeuter hjärnskadade patienters upplevelser av musikterapi? / Music Therapy with brain-damaged patients is the topic of this paper, written as a part of the master program in music education profile music therapy, at the Royal College of Music in Stockholm, Sweden, 2012. The objective is to focus on how music therapists understand and interpret the music experiences of brain damaged patients, as the patients may show reduced communication skills, aphasia, empathic difficulties, flattened emotions and/or rigid facial expression. The essay has a qualitative research approach including hermeneutic elements. The material consists of interviews with a research group of three professionally active music therapists who have worked with patients suffering severe acquired brain damage. The method used is semistructured interviews and the material has been interpreted hermeneutically. The research question is: How do three music therapists perceive the experiences of brain damaged patients in music therapy?

Les expériences de soin vécues par les infirmières de soins intensifs auprès des patients cérébrolésés et de leurs proches alors que l’arrêt de traitement devient une option confrontent les infirmières à des défis qui surgissent particulièrement lors de l’instauration de la relation de soin, infirmière-patient, et lors de la mise en action de leur rôle d’avocate. Parmi les théories en sciences infirmières, celle du Human Caring de Watson (1979/1985/2008/2012) positionne la relation avec le patient, une relation transpersonnelle, comme un idéal moral. Dès lors, lorsqu’elles sont confrontées à des défis pour développer cette relation, les infirmières remettent en question tant leur pratique, que la conception qu’elles ont de la nature du soin, centre d’intérêt de leur discipline. Toutefois, à ce jour, très peu d’études ont eu pour objet de recherche la compréhension de cette expérience de soin vécue par des infirmières auprès de patients cérébrolésés et de leurs proches alors que l’arrêt de traitement devient une option. Cela, même si les défis, et les questionnements qu’ils suscitent chez les infirmières peuvent avoir d’importantes répercussions pour les personnes soignées dans un environnement de soins intensifs. Instruite par le constructivisme projectif, la pensée complexe de Morin et la philosophie de la compréhension de Ricœur, notre étude a eu pour but précisément de chercher à décrire et comprendre l’expérience de soin vécue par des infirmières de soins intensifs auprès de patients cérébrolésés et leurs proches lorsque l’arrêt de traitement devient une option. Cette recherche a été réalisée à partir d’un devis descriptif interprétatif, tirant ses origines de la discipline infirmière, en s’inspirant du Narrative Inquiry, méthode qui a pour visée d’étudier l’expérience (Chase, 2005; Clandinin & Connelly, 2000). Onze infirmières provenant des régions de Montréal et de Québec ont participé. La chercheuse a rencontré chaque participante à trois reprises pour effectuer le recueil des données à partir desquelles les récits de recherche ont été co-construits, et le premier niveau d’analyse a été réalisé. Cette analyse qui demeurait descriptive s’est poursuivie par questionnement analytique (Paillé & Mucchielli, 2012) de conception complexe en dialogue avec les 11 récits de recherche. Les connaissances construites en deux étapes, une phase descriptive et une phase interprétative sur cette expérience de soin ont constitué les fondements de notre réflexion pour activer la conception de nouvelles connaissances disciplinaires sur l’ontologie du soin. Nous avons interprété que le soin, que nous qualifions d’humanéthique, peut être conçu dans le construit d’un système complexe ouvert, comportant : une finalité, la vie bonne avec et pour un patient heureux; une écologie dans laquelle il s’organise, où l’environnement social est prépondérant; une évolution temporelle se déployant dans un espace-temps; une reliance indicible, la dimension relationnelle essentielle au soin; mais aussi une part d’incertitude. Une modélisation du soin humanéthique, un système perçu complexe, est présentée à travers un récit s’inspirant de la pratique infirmière. Dans cette étude, le récit s’est révélé être un outil pertinent, car la narrativité a non seulement contribué à questionner et réfléchir la pratique lors du recueil des données, et de l’analyse; mais elle a aussi permis de réaliser une représentation dynamique et pragmatique des résultats empiriques et théoriques. Ainsi, notre projet à travers l’approfondissement d’expériences vécues en pratique par des infirmières a conduit à l’avancement d’un nouvel éclairage théorique sur le soin. De plus, à travers un récit, nous avons proposé des leviers qui puissent être actionnables en pratique par les infirmières, quel que soit le contexte dans lequel le soin se déroule. Des pistes de réflexion et des implications en ont résulté pour les secteurs de la pratique clinique, de la formation, de la gestion et de la recherche en sciences infirmières. Dès lors, cette étude orientée vers la pratique a non seulement la faculté de pouvoir soutenir la pratique infirmière, mais aussi d’être à l’origine de nouveaux questionnements sur la nature du soin, permettant ainsi de poursuivre son développement. / The care experiences of critical care nurses with brain-damaged patients and their loved ones as withdrawing treatment becomes an option confront nurses with challenges that arise particularly when establishing the nurse-patient care relationship and when putting their advocacy role into action. Among the nursing theories, Watson's Human Caring (1979/1985/2008/2012) positions the relationship with the patient, a transpersonal relationship, as a moral ideal. Therefore, when faced with challenges in developing this relationship, nurses question both their practice and their understanding of the nature of care, which is the focus of their discipline. However, to date, very few studies have focused on understanding nurses' experience of caring for brain-damaged patients and their loved ones as withdrawing treatment becomes a care option. This is despite the fact that the challenges, and the questions they raise for nurses, can have important implications for those being cared for in a critical care environment. Based on projective constructivism, Morin's complex thinking and Ricoeur's philosophy of understanding, the purpose of our study was precisely to seek to describe and understand the care experience of critical care nurses with brain-damaged patients and their families when withdrawing treatment becomes an option. This research was carried out from an interpretative descriptive specification, drawing its origins from the nursing discipline, inspired by the Narrative Inquiry, a method that aims to study the experience (Chase, 2005; Clandinin & Connelly, 2000). Eleven nurses from the regions of Montreal and Quebec City participated. The researcher met with each participant three times to carry out the data collection from which the research narratives were co-constructed, and the first level of analysis was carried out. This analysis, which remained descriptive, continued through analytical questioning (Paillé & Mucchielli, 2012) of complex design in dialogue with the 11 research narratives. The knowledge built up in two stages, a descriptive phase and an interpretative phase on this experience of care constituted the foundations of our reflection to activate the conception of new disciplinary knowledge on the ontology of care. We have interpreted that the care, which we call “humanethical”, can be designed in the construction of a complex open system, with: a purpose, a good life with and for a happy patient; an ecology in which it is organized, where the social environment is preponderant; a temporal evolution unfolding in space-time; an unspeakable relatedness , the relational dimension essential to care; but also an element of uncertainty. Modelling the “humanethical” care, a complex system, is presented through a narrative inspired by nursing practice. In this study, storytelling proved to be a relevant tool, as narrativity not only helped to question and reflect on practice during data collection and analysis, but also provided a dynamic and pragmatic representation of empirical and theoretical findings. Thus, our project through the deepening of experiences lived in practice by nurses has led to the advancement of a new theoretical perspective on care. In addition, through a narrative, we have proposed levers that can be operated in practice by nurses, regardless of the context in which the care takes place. This led to a number of reflections and implications for clinical practice, education, management and research in nursing. Therefore, this practice-oriented study not only has the potential to support nursing practice, but also to raise new questions about the nature of care, thus enabling its further development.