A Masters Dissertation submitted to the Department of Speech Pathology and Audiology School of Human and Community Development, Faculty of Humanities University of Witwatersrand Johannesburg, in fulfillment of the requirements for the degree Master of Arts in Speech Pathology, November 2017 / Background: Traumatic Brain Injury (TBI) is a serious public health problem worldwide. It is a major cause of death among younger adults and is a leading cause of lifelong disability in persons who survive it. There are a large number of young adults living with life-long disabilities as a result of traumatic brain injury worldwide, with higher numbers existing in South Africa. Whilst previous research internationally has examined issues of community integration and difficulties experienced by persons with traumatic brain injury and their significant others or caregivers, a paucity of research of this nature exists in South Africa. This study intended to explore whether a gap in clinical practice exists with regard to aspects of intervention and support, underpinned by an ambiguous definition of community integration for survivors of traumatic brain injury and their significant others Method: The main aim of the study was to explore existing feelings of community integration and active participation in patients with traumatic brain injury who have been discharged from rehabilitation services in private practice in Johannesburg, South Africa. In this study, the sample comprised of 10 survivors of TBI and 10 significant others (SOs). The objectives were to describe and compare participants and significant others’ or caregivers experience of community integration and factors that influenced the perceptions by each (i.e. the patient and the caregiver) as well as to document barriers and facilitators to community integration and active participation within the, familial, social and work context. Lastly the study aimed to determine if the qualitative analysis of formal assessment measures (FIM and CIQ-R) match perceptions of persons with TBI with regard to Community Integration (Landrum et al., 1995). Results: Across various areas of comparison, participants who scored higher in the CIQ-Rand FIM measures, often expressed more subtle difficulties or challenges that landed up going undetected and ultimately contributed to their personal feelings of poorer community integration. Various studies, including the current study reveal that significant others have many unmet needs in terms of what they know and what they should expect with regard to handling their loved one with a TBI. Implications: This research has highlighted the fact that our South African context is lacking with regard to ongoing management of individuals surviving TBI, with reduced funding available for outpatient therapies, a lack of post discharge programmes and a general lack of education and information given to family members of TBI survivors upon discharge. As such this should be a major focus of health care providers in the future. This research revealed many subtleties that impact perceptions of community integration but go undetected by formal measures. Such subtleties could be used to direct specialised programmes, which should be made available to TBI survivors post discharge from rehabilitation services. Keywords: traumatic brain injury; community integration; rehabilitation; functional outcomes; private practice, developing countries, community resources, south Africa / XL2018

A research report submitted in partial fulfilment of the requirements for the degree of Master of Arts in Social and Psychological Research to the Department of Psychology, School of Human and Community Development, The University of the Witwatersrand, Johannesburg, South Africa, 2017 / Introduction. The provision of appropriate long term care facilities for people with acquired brain injury is a portentous issue internationally. There is a global lack of long term care facilities for people with acquired brain injury and they are often placed in facilities for the physically disabled or the elderly. It is unclear whether these facilities are suitable and what effect they may have on well-being and social isolation. Aim. This interpretive phenomenological study explored how adults with acquired brain injury experience living in such long term care facilities. Additionally, it described how such living arrangements impact on social isolation, a particularly devastating psychosocial consequence of acquired brain injury. Method. One-on-one, semi-structured interviews were conducted with seven adults who had acquired a brain injury. Each participant had been living in a long term care facility for at least one year. They were asked questions related to their general lived experience as well as specific questions to explore their experience of social isolation. Findings. Thematic content analysis of the interview data led to the following five categories of themes: overall evaluations (guarded approval, and disapproval); general lived experience (autonomy, choice, freedom, burden, boredom, and basic needs); social isolation (loneliness, companionship, and belonging); sources of isolation (living with the disabled, different disability, age differences, pets, and facility setup); and sources of well-being (positivity, and meaning). The main findings were that the general lived experience of people with ABI was mainly negative. The facilities generally met only basic needs and seldom met higher level psychological needs. Social isolation was commonly reported among residents with ABI in long term care facilities and was linked to age differences and having a brain injury in a facility geared for people with other disabilities. The findings were understood in relation to Bronfenbrenner’s ecological systems theory and Maslow’s hierarchy of needs. Conclusions. The findings of this study contribute towards filling a theoretical gap in understanding the lived experience of people with ABI in long term care facilities and how this contributes to social isolation. The findings have potential value to family members of people with acquired brain injury considering various living arrangement options. They can also be useful for long term care facilities housing people with brain injury to make changes that may result in greater well-being of their residents. / MT 2018

In recent years, the move toward a more holistic perspective in health care has led to social scientists investigating psychosocial factors in chronic illness, such as the different languages used by health professionals when talking about nonhealth. However, there has been little inquiry into caregivers' illness experiences of stroke and Alzheimer's disease (AD). This study therefore explores the illness experiences of seven caregivers whose spouses are stroke or AD patients. A hermeneutic approach was adopted and two relatively unstructured interviews were conducted with each caregiver. Using Kleinman's work on illness narratives as an interpretive framework, it was found that - except for people questioning the authenticity of AD caregivers' experiences - similarities in caregivers' experiences outweighed differences. All described the extent to which their lives had been damaged by the illness and their reparation attempts. Critique of the research is presented and the findings' implications for treatment are suggested / M.A. (Clinical Psychology)

In recent years, the move toward a more holistic perspective in health care has led to social scientists investigating psychosocial factors in chronic illness, such as the different languages used by health professionals when talking about nonhealth. However, there has been little inquiry into caregivers' illness experiences of stroke and Alzheimer's disease (AD). This study therefore explores the illness experiences of seven caregivers whose spouses are stroke or AD patients. A hermeneutic approach was adopted and two relatively unstructured interviews were conducted with each caregiver. Using Kleinman's work on illness narratives as an interpretive framework, it was found that - except for people questioning the authenticity of AD caregivers' experiences - similarities in caregivers' experiences outweighed differences. All described the extent to which their lives had been damaged by the illness and their reparation attempts. Critique of the research is presented and the findings' implications for treatment are suggested / M.A. (Clinical Psychology)