Dissertations / Theses on the topic 'People with mental disabilities Care Victoria'

Thesis (Ph. D.)--University of Oregon, 2001.
Typescript. Includes vita and abstract. Includes bibliographical references (leaves 184-193). Also available for download via the World Wide Web; free to University of Oregon users.

This phenomenological study of the meaning of home from the perspectives of people with and without an intellectual disability sought to identify, (a) any common ‘essence’ of meaning held by and, (b) the nature of any differences of perception between, the groups. Purposive samples of 18 people with an intellectual disability and 21 non-disabled people were surveyed using a semi-structured interview to ascertain their experiences of home and 'non-homes'. Inductive analysis of the data revealed a shared understanding of the meaning of home at a fundamental level. This shared meaning of home was found to comprise: the ability to exert control over an area; having a personalised space; feeling content with the living situation; a sense of familiarity with the setting; a set of behaviours and routines usually only enacted when at home; common names and uses for rooms; socialising at home with others; the importance of a positive social atmosphere in the home; and, recognition of places as non-homes because they lacked one or more of these attributes. Further analysis revealed the essence of home is its experience as the place where stress is most reduced or minimised for the individual. The study demonstrates that the concept of stress is superordinate to previously identified concepts considered fundamental to home such as privacy, control and non-homes. Major differences between the two samples were largely differences of degree with people who have an intellectual disability reporting the same fundamental attributes of home as people who do not have an intellectual disability, but in a less elaborated form. Principal among these differences of degree was the notion of control over the home and its derivative elements which encompassed the whole dwelling including its setting for people without an intellectual disability but was very restricted for people with an intellectual disability being largely confined to the person's bedroom. Socialising in or from the home was also very limited for people with an intellectual disability in comparison with that experienced by non-disabled informants with the former group conveying an impression of leading significantly socially isolated lives at home. The major implications of this study are related to the meaning of home per se, to residential service provision to people with an intellectual disability, and to future research.

Following the exposure of abuse of people with Intellectual Disabilities (ID) at Winterbourne View, the Government launched the Transforming Care programme, to support people to transition out of hospital into their own home. A literature review revealed limited research into people with IDs experiences of transitioning. The study aimed to explore how transitions through Transforming Care were experienced. Eleven people with ID were interviewed about their experiences, with ten nominating a Key Support Person to be interviewed alongside them on a second occasion. Interviews were analysed using a Social Constructionist Grounded Theory methodology. The model demonstrated that participants experienced transitioning as a highly complex process of managing change. In hospital, how participants were seen by significant others and how they saw themselves resulted in a 'restricted story'. In moving to the community, participants and those around them were able to shift ideas about who they were, allowing for a 'widening out' of their story. Participants discussed seeking a sense of safety in new relationships, managing loss, and going through uncertainty as part of the process of transitioning. The findings of this study demonstrate that transitioning is not a single event, but an ongoing process over time. Clinical implications include ensuring that people with ID feel prepared about their move and the importance of staff understanding peoples' behaviours within a wider context.

Thesis (DPsych (Health Psychology)) - Faculty of Life and Social Sciences, Swinburne University of Technology, 2007.
Submitted as a requirement for the degree of Professional Doctorate in Health Psychology, Faculty of Life and Social Sciences, Swinburne University of Technology - 2007. Typescript. Includes bibliographical references (p. 189-210).

This study examined the relationship between the principle of normalization and the concept of quality of life of intellectually challenged adults living in the community. The effect of demographic variables on the quality of life of this population was examined. The sample consisted of sixty respondents from four agencies (one from Montreal and three from Ottawa) providing services to intellectually challenged adults. Cummins' (1997) Comprehensive Quality of Life---Intellectual Disability Fifth Edition (ComQol-I5) was used.
Both objective and subjective quality of life scores were calculated. The major findings were: (1) the subjective scores were higher than the objective scores; (2) a number of subjective scores were positively correlated with the objective score for community (attending leisure/social activities, belonging to a group and/or holding a position of responsibility) and (3) higher functioning respondents (income, diagnosis, education and living arrangements) had significantly higher overall quality of life scores. Results were compared with two outside samples (Italian and Australian); all three samples showed a similar pattern of lower objective scores and higher subjective scores.

This study examined the contribution to quality of care of a goal planning technique called Goal Attainment Scaling and its impact upon the quality of life of people with severe mental handicaps and challenging behaviour. The study also seeks to establish the utility of employing Goal Attainment Scaling as a means of evaluating clinical nursing performance, This study essentially aims to bring about changes in the care practices of nurses using a comprehensive staff management procedure. The study was designed as a four phase intervention using a multiple baseline design across three wards in a hospital for people with mental handicaps. Staff on three wards (n = 41) were initially trained over three phases in the use of Goal Attainment Scaling and other procedures. Training was carried out by a combination of workshops and individual tuition which incorporated the use of individualised learning contracts for staff. The fourth phase consisted of establishing weekly meetings to set objectives for staff to achieve that were specifically related to material covered in training. If targets were achieved, staff performance was followed by letters of recognition from managers and by financial donations to ward funds. Dependent measures included frequency of challenging behaviour, quality of staff-resident interaction and engagement, ward activity, residents' adaptive behaviour, staff attitudes and goals set by staff. Results indicate that adaptive behaviour increased by small but statistically significant levels. Levels of challenging display a mixed pattern of results, as do levels of ward activity and quality of interaction, although encouraging trends may be identified. Despite some increases, residents still spend significant amounts of time unoccupied. The number of goals set increased throughout the study, particularly in phase four, data for staff attitudes were not used because of the low compliance rate and changes indicated below. Considerable problems were encountered with turnover of staff and other organisational changes outwith the researcher's control which compromised both the quality of training given to staff and, by virtue of this, the final results. Statistically significant relationships were found to exist between staff turnover and interaction. The implications of this study are discussed and recommendations made for future research.

This study analyzes effective service delivery in organizations serving the mentally retarded. Qualitative organizational analyses of three community care facilities were compared to assess effectiveness. Data were gathered by systematic observations, field notes, documents, and employee interviews. Program analysis, the funding system of service delivery, and staff attitudes best indicated effective service. I concluded that effectiveness would improve by focusing on individual consumer needs and further defining service delivery.

Recent government social policies, including those promoting community care and active citizenship, and specific volunteering policy (such as Millenium Volunteers and Project Scotland) have outlined an extended role for volunteers and voluntary organisations in the planning, design and delivery of services. In broad terms, these initiatives assume an untapped pool of volunteers ready and willing to be actively and meaningfully engaged. This research comprises two naturalistic studies which examine the assumptions underlying government policies including engagement, placement, organisation, management and retention of volunteers. Evidence was gathered by direct consultation with active volunteers (n=117) and their managers (n=72). Participants were recruited from organisations working with adults with learning disabilities, mental health problems, physical disabilities and older people across Scotland. This research found that volunteers become involved for many reasons: some young people consider their voluntary work as a ‘stepping-stone’ to employment, others, who feel themselves socially isolated for a number of reasons, report that volunteering is a useful way to gain social support. Volunteers require different levels of training, support and supervision. Tensions may inevitably arise between volunteering as a freely chosen activity by an individual and volunteering as part of contracted service provision by an increasingly professional voluntary organisation. For agencies to meet the demands of contracted service provision clearly defined procedures for selection, induction, training and supervision may be required. Given the inevitable resource implications this has for volunteer-engaging organisations is it unlikely that such an expansion in roles for volunteers would be cost-free. Organisations face a challenge to adapt effectively to the requirements of social policy while maintaining the enthusiasm and commitment of a diverse pool of volunteers.

The purpose of the study was to examine the experiences of both people with disabilities and elderly people and to identify their perceptions of quality as it relates to living in a service or being supported by a service to live in the community. The study was naturalistic in design and used a phenomenological approach and inductive analysis. It involved immersion in living services for a two year period, in-depth interviews with people living and working in services and participant observation. Fifty service users between the ages of twenty-one and ninety-six, and twenty-six service workers between the ages of twenty-six and fifty-four were informants in the study. The study comprised of three phases, the first phase involved repeated in-depth interviews with service users in two disability and two aged care living services to examine the experiences of people living in services and their perceptions of quality. As a result of the consistency with which relationships with key staff members emerged in the context of quality experiences, selected service workers who were named by service users were also interviewed. The findings in this phase indicated that relationships experienced by service users in their encounters with service workers were more significant in service users' evaluation of quality than tangible acts of physical and environmental care. Relational experiences of people living in services were variable. Some informants experienced consistent validation and socio-emotional support, whilst others experienced role distancing and negative communication experiences. Service workers who were interviewed as a result of being identified by service users in the context of quality, attached importance to the relational domain in the acts and behaviours of providing a service. They also attached personal meaning to their roles as service workers and shared the view that their role as service worker was underpinned by an ethos of communality. The second phase of the study involved accessing another five disability and five aged care services to collect further data to support or refute the findings from phase one. As a result a large data bank was established to confirm the consistency with which relational experiences in living services were linked to perceptions of quality by both service users and service providers. Acts and behaviours which were consistently present in the context of quality were also identified and the need for emotional support in the living context was further confirmed. The third phase of the study involved an in-depth analysis and identification of commonly experienced categories of relationships between service users and workers. Relationships were categorised into ethical and technical living service experiences and exemplars used to illustrate findings. Data analysis indicated that service experiences lie on a continuum, with mutually supportive relationships between service users and workers at one end, and physical and psychological abuse at the other. Experiences were variable in singular service contexts. This highlighted the individual nature of service relationships between service users and workers and the need to articulate human service as relationship. It also highlighted the inadequacies of using standard measures to evaluate quality in living services.

This research evaluates Quebec's health care policy by analyzing how the partnership metaphor is implemented in policy and practice. The partnership construction is identified in 4 interpretive communities within long-term community services to the elderly population. This analysis focuses on the placement decision for cognitively impaired clients in home care. Interpretive policy analysis is employed to examine 3 policy documents and 3 client files, while grounded theory serves to analyze 13 semi-structured interviews with 2 administrators and 3 open triads of client, caregiver, and case manager. The findings show partnership to be an egalitarian, collaborative ideal widely adopted but with little consensus on the pertinent objects and actors. Important differences emerge in how partnership is applied to the placement decision, indicating a too flexible application. Specific restrictions are recommended on the application of the partnership metaphor in order to improve community services and organizational structures in health care.

Thesis (MPhil (Sociology and Social Anthropology))--University of Stellenbosch, 2009.
ENGLISH ABSTRACT: South Africa has transformed its mental health service provision from in-hospital care to community-based rehabilitation. Although the idea is sound, the process places the caregiving families under an immense pressure. The aim of this study was to explore the impact that the de-institutionalisation process has had on the families as they care for their child with intellectual disability. The study was conducted by means of qualitative, unstructured interviews with families that have had a child de-institutionalised from Alexandra Hospital in the Western Cape. All of the patients were diagnosed with a dual diagnosis of intellectual disability and mental illness. Even though the patients were in group-homes or attended a day care centre, final responsibility for the patients lay with the parents. Three main themes emerged from the interviews that describe the impact of deinstitutionalisation, viz. the characteristics of the family member with intellectual disability (aggressive, abusive and self-destructive behaviour of the patient), the effect that these characteristics had on the family (marital stress and health risks to the care giver), and community and resource factors. The study placed the family central to its environment and discussed the impact deinstitutionalisation had on its environment as a whole. It was concluded that the burden that de-institutionalisation places on the families far exceeded their ability to cope with these circumstances. This status quo could be improved if adequate resources and skills are given to families prior to de-institutional
AFRIKAANSE OPSOMMING: In Suid-Afrika is geestesgesondheidsorg van hospitaliserende na gemeenskapsgebaseerde rehabilitasie, omskep. Terwyl hierdie stap wel as lewensvatbaar mag voorkom, plaas die proses ‘n hewige las op die sorggewende gesin. Die doel van hierdie studie was om die omvang van die impak hiervan op ‘n gesin met ’n lid met intellektuele gestremdheid en psiegiatriese siekte, te bepaal – nadat so ‘n pasient uit die inrigting ontslaan is. Die ondersoek is uitgevoer by wyse van kwalitatiewe, ongestruktureerde onderhoude met gesinne wie se lede met die diagnose uitgeplaas is deur die Alexandra Hospitaal in die Wes-Kaap. Elkeen van die pasïente is gediagnoseer met ernstige intellektuele gestremdheid, asook bykomende gedragsafwykings. Ten spyte van die feit dat die betrokke pasïente deur groepshuise of dagsorg eenhede versorg word, bly hulle hul ouers se verantwoordelikheid. Drie temas het ontstaan wat die impak van ontslag uit die inrigting omskryf, te wete die karaktertrekke van die gestremde gesinslid (aggressie, misbruikende en vernielsugtige gedrag van die pasïent), die effek van hierdie karaktertrekke op die gesin (stres op die huwelik en potensiële gesondheidsrisiko wat dit vir die versorger inhou), en die gemeenskap en ondersteunende faktore. Tydens die ondersoek is die gesin sentraal geplaas ten opsigte van die omgewing. Die impak van ontslag van die gediagnoseerde pasïent uit die inrigting op die omgewing as geheel, word bespreek. Daar is tot die slotsom gekom dat die vermoë van die gesin wat die las moet dra as gevolg van die ontslag, ver oorspan word. Hierdie toedrag van sake sou egter verlig kon word indien toereikende hulpbronne en vaardighede aan sulke gesinne beskikbaar gestel word alvorens so ‘n pasïent ontslaan is.

This study investigated the effects of verbal and graphic feedback alone and in combination with praise on the data-recording behavior of 12 direct care trainers (DCTs) who recorded their reinforcer deliveries as they interacted with mentally retarded clients. An additional variable examined was the effect of time of delivering feedback on subsequent data-recording behavior. Feedback was delivered by the experimenter. Correspondence checks were conducted and a three-phase multiple condition experimental design was used. All feedback conditions produced an observable difference in DCT data-recording behavior. Time of delivery of feedback also appeared to have an effect on the amount of data recorded by DCTs.

A combined, multiple-methods action research strategy is constructed and used to assess teams of personnel working in and around group homes for mentally retarded adults and young offenders in the Canadian Province of Newfoundland and Labrador between August, 1983 and January, 1987. Grounded in the practise experiences and previous research of the author, the question "what works?" is developed both as a contextual framework for the examination of teamwork as a component of professional practise and as a contextual feature of group care. The question is used to guide categorization and organization of differences amongst 51 sample teams in order to isolate valid and reliable measures of team work functioning. Drawing from four distinct theoretical traditions comprising core knowledge of human behaviour in the social environment, multiple methodologies for differentiating within and amongst teams are combined to triangulate data around the central research question. A methodology for the collection and analysis of data which are thought to represent the "lived experiences" of sample subjects is developed and used to illuminate the phenomenological alignments of team members. Qualitative themes in the reports of on- and off-the-job satisfactions and frustrations for sample subjects are examined for teams and for occupational groupings. Separate measures of Level of Organizational Change and Prevalence of Stressful working Conditions are developed and used to examine the interplay between these variables and other preselected variables. The assessment procedures and the typology of team functioning developed by Fulcher (1983) are replicated. Specific flaws and limitations in Fulcher's methodology and design are overcome through the use of a different theoretical orientation, extensions and refinements of the methodology, changes in instrumentation and by replicating his findings with a more homogeneous sample. Four of the team styles of adaptation are empirically validated and their descriptions refined. Both linear and non-linear statistical analytic methods are used to test for correlation and association between and among preselected variables. The Heimler/Fulcher Work Orientation Schedule, which serves as the basis for Fulcher's interpretative categorization of teams, is subjected to tests of reliability and validity and found to meet predetermined expectations. Through the use of an international, comparative data base, norms for team satisfaction and ratio of frustration to satisfaction for this instrument are empirically validated. Further research using Fulcher's typology along with the Work Orientation Schedule is indicated. Field observation recordings, sample subjects' personal narratives, the social policy and corporate contexts in which the study takes place, and a mythical, yet ultimately necessary, experiment which takes place in the future are all used to illuminate and ground the findings in the action research process.

Behavior-specific praise has been shown to increase rate of desired behaviors for individuals with intellectual and developmental disabilities, though it is rarely used by caregivers in residential facilities for adults with disabilities. Prompting in the form of tactile stimulation has been demonstrated to increase rate of behavior-specific praise delivered by teachers and caregivers. The purpose of the current study was to increase the quantity and quality of behavior-specific praise statements that were delivered by caregivers to individuals at a large residential facility for adults with disabilities. A tactile prompting device (Gymboss Interval Timer and Stopwatch) was provided to the caregivers and set to vibrate for one second at intervals of five minutes, for a total of six intervals. Instructions were provided to the caregivers to deliver behavior-specific praise statements, for appropriate behaviors, to their assigned clients every time a vibration occurred. Examples of behavior-specific praise statements were provided to the caregivers before each session, but no feedback was delivered during the prompting phase. Results indicated that a tactile prompting device was effective at increasing rate of behavior-specific praise statements delivered by caregivers in as little as one session.

The purpose of this study was to compare and measure the long term effectiveness of the rehabilitative day treatment program at San Bernardino County's Department of Mental Health. This current study was completed in 2005 and is a follow up study tracking the long term effectiveness of the program.

La relevancia e interés por el estudio sobre la carga familiar y el impacto familiar del cuidado de personas adultas con discapacidad intelectual (DI) y discapacidad intelectual con trastorno mental asociado (DI-TM) ha aumentado durante las últimas dos décadas en España. Sin embargo, dicha temática apenas ha sido investigada en nuestro país. La presente investigación pretende contribuir al conocimiento sobre estas áreas, y tiene por finalidad analizar los principales factores sociales y psicológicos, así como las variables clínicas y diagnósticas que explican mayores niveles de carga e impacto familiar del cuidado en un contexto comunitario. La presente tesis está compuesta por cuatro estudios, los dos primeros con un enfoque metodológico cuantitativo, el tercero se basa en una revisión sistemática y el cuarto desde una perspectiva cualitativa. El primer estudio, “Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID.A comparison”, compara la carga familiar y encuentra que los mayores niveles de carga familiar se hallan en el grupo de cuidadores de personas con DI-TM, seguido del grupo de esquizofrenia, presentando menor carga familiar el grupo de DI. El segundo estudio, “Family burden related to clinical and functional variables of people with intellectual disability with and without a mental disorder”, analiza las variables sociodemográficas, factores sociales y psicológicos, diagnósticos clínicos y discapacidad funcional que explican mayor carga familiar de cuidadores y cuidadoras de personas con DI y DI-TM. Los resultados demuestran que los niveles más altos de carga familiar se relacionan con una mayor discapacidad funcional en todas las áreas evaluadas del WHO-DAS-II, un menor cociente intelectual, diagnóstico de DI-TM, y con la presencia de trastornos orgánicos, psicótico-afectivos y del comportamiento. El tercer estudio, “La carga familiar de los cuidadores/as de personas jóvenes y adultas diagnosticadas de DI-TM: una revisión sistemática”, pretende dar a conocer el estado de la cuestión actual sobre las siguientes áreas, diagnóstico de DI-TM, carga e impacto familiar, adultos. Esta revisión evidencia que la carga familiar prevalece cuando se asocia con la comorbilidad entre DI y TM, aumentando especialmente cuando se asocia con el trastorno conductual grave. Así mismo, se constata que el impacto familiar del cuidado tiene repercusiones emocionales, psicológicas, sociales y de salud en los cuidadores y cuidadoras de personas con DI-TM. Por último, el cuarto estudio, “Family impact of care and respite service: life experiences of mothers of adult children with intellectual disability and mental disorders”, explora las vivencias y experiencias de las participantes, enfatizando en darles la voz. Los testimonios manifiestan un impacto negativo ante el descubrimiento de la discapacidad de su hijo o hija, pero también aparecen sentimientos de gratitud y amor por el cuidado. Además, el servicio de respiro resulta ser un apoyo necesario para aliviar el sentimiento de sobrecarga. La evidencia empírica de estos estudios nos permite constatar que las familias en cuestión se enfrentan ante un gran reto a lo largo de todo su ciclo vital, por lo que es fundamental apoyarlas, acompañarlas y empoderarlas mediante el modelo de intervención social y familiar centrado en la familia. La presente tesis doctoral enfatiza en la utilización metodológica del trabajo social individual, familiar y grupal, para contribuir al diseño de modelos y programas socioeducativos, psicosociales y sanitarios dirigidos a estas familias. Así mismo, estas implementaciones prácticas deben ser consideradas por los responsables de las políticas sociales y sanitarias, con el fin de garantizar una intervención integral, facilitar la conciliación de la vida personal, familiar y social, y reducir la carga e impacto familiar del cuidado de estas familias.
The research areas of this thesis are family burden and family impact of care on adults with intellectual disability (ID) and intellectual disability associated to mental disorders (ID-MD). The present research aims to contribute to the knowledge of these areas, and its purpose is to analyze the main social and psychological factors, as well as clinical and diagnostic variables that explain higher levels of burden and family impact in a community context. The present thesis has four studies; the first two have a quantitative methodological approach, the third is based on a review and the fourth has a qualitative perspective. Study 1: "Family impact in intellectual disability, severe mental health disorders and mental healthdisorders in ID. Acomparison.The results demonstratethat the highest levels of family burden arein the group of caregivers of people with ID-MD, followed by the schizophrenia group, and with a lower family burden in the ID group. Study 2: "Family burden related to clinical and functional variables of people with intellectual disability and with a mental disorder". The results show that higher levels of family burden are related to a greater functional disability in all the WHO-DAS-II evaluated areas, a lower IQ, ID-MD diagnosis, and presence of organic, psychotic-affective and behavioral disorders. Study 3: " La carga familiar de los cuidadores/as de personas jóvenes y adultas diagnosticadas de DI-TM: una revisión sistemática”. This review shows that family burden prevails when associated with comorbidity between ID and MD. Likewise, the family impact of care has emotional, psychological, social and health repercussions on caregivers of people with ID-MD. Study 4:"Family impact of care and respite service: life experiences of mothers of adult children with intellectual disability and mental disorders".Testimonies declare a negative impact when first discovering its child’s disability, but also feelings of gratitude. The respite service turns out to be a necessary support to alleviate the feeling of overload. The empirical evidence from these studies allows confirming that the families in question face a great challenge throughout their lives. This thesis emphasizes the methodological use of social work, in order to contribute to the design of socio-educational programs to reduce the family impact of care of these families.

Thesis (Ph. D.)--University of Georgia, 1998.
Directed by Ronald L. Blount. eContent provider-neutral record in process. Description based on print version record. Includes bibliographical references.

Individualised needs based approaches are increasingly being utilised to fund disability support services. Frequently, standardised assessments such as adaptive behaviour scales and, more recently, measures of support needs are used for determining level of need. The aim of this thesis is to understand the relationship between adaptive behaviours and support needs and to investigate factors that impact functional capacity and need for supports for individuals with an intellectual disability. Although a conceptually attractive approach to assessment, concern exists regarding the adequacy of the theoretical framework for guiding the development of support needs instruments. Though possessing theoretical similarities, adaptive behaviour and support needs scales are considered to measure different, albeit related constructs, prompting investigation into the nature of the relationship and the structure of the support needs construct. Accordingly, in Study 1 the Supports Intensity Scale (SIS), the Adaptive Behaviour Scale–Residential and Community (ABS-RC:2), and the Inventory for Client and Agency Planning (ICAP) were used to examine this relationship (N = 80). Dimensionality of the SIS (Section 1) was examined in reference to the three areas of conceptual, social, and practical skills, considered as comprising the adaptive behaviour construct. Factor analysis offered support for measurement of a common underlying construct. When considered in terms of the three adaptive behaviour skill areas, the support needs construct related predominantly to conceptual skills. Unlike adaptive behaviour scales, little is reported about the properties of support needs measures or factors that impact on an individual’s need for supports. Study 2 examined factors likely to influence adaptive behaviours and need for supports; in particular, the presence of coexisting disabilities. Using a measure of adaptive behaviour (i.e., ICAP) and two support needs scales (i.e., SIS and the Service Need Assessment Profile, SNAP), the extent to which adaptive and challenging behaviours and support needs (including medical) were impacted by the number and severity of disabilities was examined (N = 83). Results showed adaptive behaviours and support needs (including medical) were meaningfully related to the number and severity of disabilities present, whereas this was not so for challenging behaviours. Profiles for challenging behaviour measures did not support a linear association with number and severity of additional disabilities, raising the possibility that the profiles were influenced more by the nature of the additional disabilities present. Study 3 investigated the impact of the nature of the additional disabilities present on adaptive and challenging behaviours, support and medical needs using the same instruments utilised in Study 2. Each scale discriminated skills and needs associated with the presence of additional physical and speech disabilities. The support needs subscales of SNAP and SIS were more sensitive to the needs of individuals with coexisting neurological and sensory disabilities. SNAP was the only instrument to identify unique needs associated with the presence of a psychiatric disability but SIS was the only instrument to discriminate needs associated with the presence of a vision disability. Underlying this finding may be the importance of the person-environment interaction intrinsic to contemporary models of disability and support approach to assessment.
Thesis (Ph.D.) -- University of Adelaide, School of Psychology, 2009

The clinical needs of patients with epilepsy are often unmet for the following reasons: (1) the clinical diagnosis of epilepsy in a hospital setting is challenging and there is a lack of longitudinal data from the time-point of initial triage to help clinicians go through the diagnostic process; (2) epilepsy patients who develop refractory illness may encounter problems of localization and lateralization of their seizure foci and (3) the technology required in the delineation of epileptogenic zones and functional cortices may not be accurate enough to support the clinicians in their diagnoses.
The current thesis begins with the exploration of the epidemiology of suspected seizure patients in a hospital setting where patients with first seizure, epilepsy and non-epileptic events may present at the same point-of-care entry. We designed a longitudinal, prospective study examining patients presenting with “seizure-specific“ and “non-specific“ labels. Among 531 patients with “seizure-specific“ labels, 27(5%) had non-epileptic events and among 1170 patients with “non-specific“ labels, 58(5%) had a first seizure or epilepsy. In particular, first seizure patients were prone to misdiagnosis as up to 22% of these patients had an initial “non-specific“ label. Components of evaluation contributing to revision of diagnosis included retrieval of witness accounts, epileptiform discharges on electroencephalogram(EEG), short-term monitoring of patients with acute symptomatic seizures and panel discussion of cases. These may represent the first step towards a multimodal investigation of patients with epilepsy.
In the second part of the current thesis, we examined the prognosis of first acute symptomatic seizures (ASS), an important component of the seizure diagnosis under the hospital setting. We challenged the traditional school of thought that “ASS are not necessarily considered epilepsy as their potential to generate unprovoked seizure is low“. By following 105 patients with ASS, we found that first ASS was associated with status epilepticus (29.5%), multiple-onset (>1 seizure within 24h on day of presentation, 35.2%) and multiple aetiologies (22.9%) with a mortality of 30% at 2 years by the Kaplan-Meier method. By using seizure recurrences in the setting of a persisting or re-emerging acute symptomatic cause, we were able to demonstrate a risk of recurrence following an ASS of 32% at 2 years with epileptiform EEG being an independent predictor2. This information sheds light onto the fact that even ASS can be “refractory insofar as the acute symptomatic cause takes a long time to treat, is prone to re-emergence, or is irreversible. This may be seen as the second step towards a multimodal investigation of patients with epilepsy.
In the next part of the current thesis, focus was placed on the refractory epilepsy patients. A formal treatise on a specific modality of investigation, namely video electroencephalogram (VEEG) was presented. The clinical appearance of patients at the time of seizure was known as semiology, and this was systematically explored in a cohort of patients undergoing VEEG. By carefully examining the localizing value (which cerebral lobe) and the lateralizing value (which side) of the semiology, we discovered a new set of semiology which might point towards an epileptic focus in the medial aspect of the frontal lobe. The gold standard for seizure localization was used in this study in the assembly of the cohort. Only patients with an Engel Class I outcome, seizure localization by analysis of resection margins and/or intracranial implantation were selected. The first part of study involved 152 patients who underwent frontal lobe surgery and the second part involved 253 patients with non-frontal lobe surgery. All habitual seizures were analyzed by VEEG using a semiology checklist of 47 items during the early (electrographic onset to 10s) and late phase (rest of episode). Localization semiology was analyzed by Chi-square test with Bonferroni correction and cluster analysis when occurrence exceeded 10% in at least 1 region. Ictal body turning along the horizontal body axis was a statistically significant localizing semiology for the mesial frontal region (57%) from the first part of study. In the second part, we found that ictal body turning along the horizontal axis and semiology with physiological movement together gave a positive predictive value of 85.7%. This modality of investigation may serve as clinicians’ hypothesis towards the localization of epileptic foci.
Electroencephalography (EEG) forms an essential part of the multi-modal investigation of epilepsy. Modern-day EEGs are performed with surface electrodes attached to the scalp to capture the electrographic information at the time of seizure but this can be hindered by muscle artifacts which decrease the localizing power of the EEG. We began with the exploration of the “hypersynchronous states of intracranial EEG in which no muscle artifact would be present. A total of 100 focal onset seizure episodes were analyzed from 60 patients undergoing intracranial implantation4. A multivariate method was used computing the eigenvalue spectrum of the zero-lag correlation matrix of a short sliding window. We showed that there were clearly observable and statistically significant changes of the correlation structure of focal onset seizures. These changes indicated that the zero-lag correlation of multi-channel EEG either remained approximately unchanged, or especially in the case of secondary generalization, decreased during the first half of seizures. The correlation then gradually increased again before the seizures terminated. This development was qualitatively independent of the anatomical location of the seizure onset zone and it appeared to be a generic property of focal onset seizures. We concluded that the de-correlation of EEG activity was due to the different propagation times of locally synchronous ictal discharges from the seizure onset zone to other brain areas and the increase of correlation during the second half of the seizures may be causally related to seizure termination.
In the next part of our multimodal investigations, focus was made on how to use applied mathematics in procuring an accurate EEG interpretation from surface EEG. A mathematical model known as discrete wavelet transform (DWT) is a powerful tool which may help denoise the ictal EEG. It can be coupled with an absolute slope method as described in the last part of the thesis which enhances the determination of ictal foci. Twelve patients achieving Engel Class I/IIa outcome following temporal lobe surgery at 1 year were selected for EEG analysis5. The EEG signals were denoised with DWT, followed by computing the normalized absolute slopes and spatial interpolation of scalp topography associated to detection of local maxima. For localization, the region with the highest normalized absolute slopes at the time when epileptiform activities were registered (>2.5 times standard deviation) was designated as the region of onset. For lateralization, the cerebral hemisphere with the first emergence of normalized absolute slopes >2.5 times the standard deviation was considered the side of onset. As comparison, all the EEG episodes were reviewed by two neurologists blinded to clinical information to determine the localization and lateralization of seizure onset by visual analysis. The wavelet and absolute slope method improved the diagnostic accuracy for localization from 64% (16/25) to 84% (21/25). Similarly, the wavelet and absolute slope method improved the diagnostic accuracy for lateralization from 48% (12/25) to 92% (23/25). The comparison between the wavelet/absolute slope method and the visual analysis showed statistical significance for lateralization (p=0.0026, McNemar test). It was conceivable that coupling DWT with the absolute slope method helps clinicians achieve a better EEG diagnostic accuracy.
To conclude, findings of the present thesis open up an area of neuroscience to researchers and biomedical engineers in relation to multi-modal investigations of epilepsy patients, which may play an essential role in fostering our understanding of the epileptic brain, through which more accurate and precise treatment may be delivered to patients with epilepsy.
Leung, Ho Wan Howan.
Thesis (M.D.)--Chinese University of Hong Kong, 2012.
Includes bibliographical references (leaves 172-185).
Chapter Chapter 1 --- Understanding first seizures and epilepsy
Introduction- epilepsy, past and present --- p.(Page 17)
The burden of epilepsy --- p.(Page 19)
From first seizures --- p.(Page 19)
Scrutiny of clinical first seizure studies --- p.(Page 21)
Symptomatology of first seizures --- p.(Page 22)
Prognosis of first seizures --- p.(Page 23)
The question of managing first seizures --- p.(Page 29)
From first seizure onto refractory seizures --- p.(Page 30)
From drugs to surgery --- p.(Page 32)
Chapter Chapter 2 --- A treatise on epilepsy from the local perspective of Hong Kong
Local epidemiological data --- p.(Page 34)
Use of antiepileptic agents in Hong Kong --- p.(Page 36)
Epilepsy surgery in Hong Kong --- p.(Page 37)
Chapter Chapter 3 --- What are multi-modal investigations?
Semiology as a modality of investigation --- p.(Page 41)
Electroencephalography as a modality of investigation --- p.(Page 44)
Neuroimaging as a modality of investigation --- p.(Page 53)
Additional modalities of neuroimaging --- p.(Page 56)
Methods of ascertaining the functional areas of the cerebral cortex --- p.(Page 63)
The scientific future of multi-modal investigations in Hong Kong --- p.(Page 66)
Chapter Chapter 4 --- The triage of patients before multi-modal investigations can be applied
Method --- p.(Page 70)
Setting and patients --- p.(Page 70)
Results --- p.(Page 73)
Exploring how diagnoses were revised --- p.(Page 75)
Completeness of patient inclusion --- p.(Page 77)
Thematic considerations of current study --- p.(Page 77)
Chapter Chapter 5 --- Consideration of a special category in the process of triage
Patient cohort --- p.(Page 81)
Definitions --- p.(Page 82)
Statistical analysis --- p.(Page 87)
Results --- p.(Page 88)
Demographics and clinical profile --- p.(Page 86)
Mortality --- p.(Page 92)
Seizure recurrence using acute symptomatic seizure as outcome --- p.(Page 93)
Seizure recurrence using unprovoked seizure as outcome --- p.(Page 96)
Risk factors for recurrence --- p.(Page 96)
Progressive symptomatic seizures as a separate category --- p.(Page 97)
Thematic considerations of current study --- p.(Page 97)
Chapter Chapter 6 --- Analyzing semiology with video monitoring as multi-modal investigation
Study part I --- p.(Page 103)
Study part II --- p.(Page 107)
Results --- p.(Page 108)
Semiology in the early phase of seizures --- p.(Page 108)
Semiology in the late phase of seizures --- p.(Page 109)
Cluster analysis of mesial frontal lobe epilepsy syndrome --- p.(Page 110)
Clinical utility of ictal body turning along the horizontal axis --- p.(Page 111)
Thematic considerations of current study --- p.(Page 111)
Chapter Chapter 7 --- Applying mathematical models in the analysis of electroencephalogram
Methods --- p.(Page 118)
Results --- p.(Page 126)
Discussion --- p.(Page 132)
An unanswered question in epileptology --- p.(Page 135)
Chapter Chapter 8 --- Wavelet theories in the analysis of electroencephalogram
Methods --- p.(Page 141)
Results --- p.(Page 150)
Localization --- p.(Page 151)
Lateralization --- p.(Page 154)
Discussion --- p.(Page 156)
Study by Battiston et al --- p.(Page 157)
Study by Ursino et al --- p.(Page 158)
Study by Senhadji et al --- p.(Page 158)
Thematic considerations including limitations --- p.(Page 162)
Chapter Chapter 9 --- Strengths and limitations of current thesis
General --- p.(Page 163)
Specific --- p.(Page 164)
Chapter Chapter 10 --- Conclusions and future research directions --- p.(Page 166)

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

This document is submitted in partial fullfilment for the degree: Master of Architecture [Professional] at the University of the Witwatersrand, Johannesburg, South Africa, in the year 2015.
People with intellectual disabilities are considered to be marginalised in our society. They continue to face prejudices, stigmas and are discriminated against resulting in social exclusion. This thesis develops a framework and methodology for pursuing inclusive environments and viable productivity within the workplace for persons with intellectual disabilities. The lack of opportunities within the workplace for individuals with intellectual disabilities intensi es their exclusion from society. The road to achieving inclusivity within the workplace has become a challenging one to navigate, as previous strategies which were developed to enable equality are far removed from what was intended. More often than ever before, employers are challenged from both a legal and political perspective for failing to diversify the workplace. Equality advocates as well as those who attempt to diversify their companies face obstacles within the workplace, namely inadequate resources or uncertainty about their appropriate role or approach in dealing with minorities. The building will serve as a learning hub, used by both persons with intellectual disabilities and people who are commonly referred to as able bodied. It will function as a level between education (if any) and the period before entering the workplace. The learning hub will afford persons with intellectual disabilities the opportunity to explore their capabilities in environments similar to that of a workplace and gain knowledge and experience prior to entering the workplace. The program envisaged in this thesis will demonstrate that this intervention is mutually bene cial to a company and the individual with an intellectual disability. In the first instance, the employer acquires knowledge and skills to act as a catalyst in enabling the transition of a person with an intellectual disability into the workplace to augment inclusivity. Secondly, the person with an intellectual disability through the program will be clothed with knowledge and expertise enabling meaningful participation amongst able-bodied employees. The transformation within workplaces as a result of the knowledge gained through this centre should create an enabling environment that incorporates the individual’s needs or one that best satis es their needs. The support by the employer is vital in the outcome and success of integrating people with disabilities into the social framework. The building is developed around a range of interactive programs between those with intellectual disabilities and people acting as the supervisors from workplaces. The supervisors, through training will be best placed to oversee progression and be empathetic toward staff with intellectual disabilities. This will enable them to transfer their knowledge and expertise of dealing with and accommodating employees with intellectual disabilities to their respective workplaces. A mock work environment will form the basis of the experiential training ground and in conjunction with job sampling will establish where a user will be best suited within the work environment. Public facilities encourage members of the public to become active participants within the space providing exposure and understanding towards those with intellectual disabilities. The centre is expected to be both accessible and lasting and will mediate experiential training and aligning it to workplace practices. The centre will be a vital space to enhance inclusion and for producing sustainable change for this marginalised group of persons. The building is located within an educational precinct on Melle Street, Braamfontein. The site which is in close proximity to the Central Business District allows for the centre to feed into businesses and vice versa. The location also allows for easy access to people from all over Johannesburg utilising various transport methods. The site being amid universities and schools ensures integration and optimum use, for educational facilities to link into this program. It also allows for social cohesion through exposure between the users of the building and other students in the surrounding area.
EM2017

M.Cur. (Psychiatric Nursing)
Caring for intellectually disabled people can be demanding for student nurses who are still novices in the profession. To ensure optimal nursing care is received, student nurses must have both an understanding of and a positive attitude towards intellectually disabled people. Nursing intellectually disabled people is a challenge that can have an impact on a person‟s body, mind and spirit therefore, student nurses need to have the ability to deal with stressful situations and environments. Student nurses need to be prepared to care for patients with long-term challenges, such as intellectual disabilities. These patients require a caring relationship that facilitates an enhanced awareness of life and health experiences. The caring relationship also facilitates health and healing processes as it involves the authentic and genuine needs of patients. This research aimed to explore and describe lived experiences of student nurses caring for intellectually disabled people in a public psychiatric institution, and to formulate guidelines for the facilitation of mental health of these student nurses. A qualitative, exploratory, descriptive and contextual design was used. Data were collected through individual in-depth interviews, focusing on the question “How was it for you to be working at this institution?” Thematic analysis was used to analyse the collected data and a consensus discussion was held with the independent coder. Ten participants were interviewed and five, who were not comfortable with interviews, wrote naïve sketches. Trustworthiness was assured by adhering to Lincoln and Guba‟s principles, that is, credibility, transferability, dependability, and confirmability. Four ethical principles were demonstrated throughout the research namely, principles of respect for autonomy, non-maleficence, beneficence, and justice. Three themes emerged from the data. Firstly, student nurses experience a profound unsettling impact on their wholistic being when caring for intellectually disabled people. iv Secondly, they develop a sense of compassion and a new way of looking at life, and lastly they require certain educational, emotional and spiritual needs to be met. Guidelines were formulated to facilitate the mental health of student nurses caring for intellectually disabled people in a public psychiatric institution.

The purpose of this study was to investigate the possibility of implementing community based care for moderately mentally retarded persons in a specific centre in the Port Elizabeth area. The objectives of the study were to identify • the needs of the moderately mentally retarded children. • the physical, psychosocial and vocational rehabilitation means of meeting these needs. • how involved the communities, parents and government were in the care of moderately mentally retarded children. A quantitative, exploratmy and descriptive design was used. A sample of 50 moderately mentally retarded children was utilised. Data were collected by means of questionnaires and semi-structured interviews. The major research findings indicate that community care for MMRPs could only be feasible with sufficient resources, expertise and community involvement. All these aspects appeared to be lacking in the centre where this research was conducted raising questions as to benefits which the mentally retarded children and their parents and the community could derive from these services. However recommendations were made on identified shortcomings, problems and needs.
Health Science
M.A.(Nursing Science)

MA (Sociology)
Department of African Studies
The aim of the study was to investigate the challenges faced by families living with mentally ill relatives in Thulamela municipality in the Vhembe district, Limpopo province. The objectives of the study were to investigate the impact that caring for a mentally ill person had on the family members; to explore the strategies adopted by families to enable them to cope better with the challenges they faced when caring for their mentally ill relatives; and to understand the support services that were provided to families by health care professionals to enable them to cope with such challenges. A Nonprobability sampling, in particular its subtype convenience samplings was used to select five families who participated in the study. A semi-structured interview schedule was used to collect data from the main care givers and a focus group discussion took place to gather more in-depth information from at least three members of each family. Those selected to participate in the study were all family members who were involved in the care giving responsibility. All participants were caring for mentally ill relatives diagnosed with schizophrenia, substance induced psychosis or bipolar affective. The care recipient had to be admitted at Hayani psychiatry hospital. Data extracted from the participants was analysed thematically following the six stages of thematic data analysis.The research findings obtained from family caregivers from Thulamela municipality found in the Vhembe district within the Limpopo province, highlighted that taking care of a family members with mental illness comes with a number of challenges. The impact was experienced by all members of the family irrespective of the age, social or financial status. The impact was experienced emotionally, physically, socially and financially. All participants also reported to be experiencing burnout. They prefer their loved ones to remain living in mental institution as it gives them a chance to live normal lives.
NRF

High prevalence of mental illness in South African and limited Mental Health Care (MHC) resources call for ways to supplement the overburdened system to meet the rehabilitative and supportive needs of service users as stipulated in the MHC Act no. 17 of 2002. Various psychological, social, and financial difficulties plaguing MHC users require holistic treatment intervention to help them cope with their conditions. This study explored the meaning of a Tshwane District community-based support group for MHC out-patients to help illuminate the value the group had for the members. A Social Constructionist epistemology informed the qualitative research approach. Data were collected by conducting semi-structured interviews and employing a collage-making method. The main themes illuminated by thematic analysis suggest that the group provided the members with a sense of belonging, mental and physical mobilisation and stimulation, a source of support, multiple learning experiences, and contributed to personal transformation and growth.
Psychology
M.A. (Social Science (Research Consultation))

The system of care for persons suffering from mental retardation is in a state of upheaval. Considering the mentally handicapped as holistic beings, this study explored and assessed the needs of those residing in the community of District 22 (sub-district 222), KwaZulu-Natal, thus facilitating the planning of care and care facilities for these individuals to enable them to function optimally in the community. To accomplish this purpose, specific objectives were formulated. A quantitative, exploratory and descriptive study based on Maslow's hierarchy of needs theory was carried out, using 167 respondents. The study revealed that despite being mentally retarded, they were still regarded as valuable members of the community, their needs did not differ from the needs of others in the rest of the world and that mental retardation is still rated low in the prioritization of health problems, hence the lack of resources and support needed for the rehabilitation of such persons.
Health Studies
M.A. (Health Studies)

Indiana University-Purdue University Indianapolis (IUPUI)
Little is known regarding the psychosocial outcomes of adult siblings of adults with autism. Accordingly, the current study sought to: (1) illuminate factors that predict health-related quality of life, caregiver burden, and reported benefits in adult siblings of adults with autism, using a stress and coping framework and (2) compare outcomes of siblings of adults with autism (n = 31) to siblings of adults with Down syndrome (DS) (n = 54). For the within subject hypotheses, analyses were repeated within the DS group and an overall Disability group (n = 97). The Disability group consisted of participants in the Autism and Down syndrome groups plus twelve individuals in a mixed group of adult siblings of adults with DS who presented with co-morbid symptoms of autism. Variables were organized using The Adult Sibling Caregiver Conceptual Model (ASCCM) into three categories: antecedents (e.g., sibling relationship quality, problem behaviors of the disabled sibling), mediators (e.g., coping strategies, cognitive appraisal types), and psychosocial outcome variables (i.e., mental and physical health-related quality of life, caregiver burden, and reported benefits). For the within subject primary hypotheses, I posited a series of relationships between the antecedents and outcomes based on prior literature on demographic and individual difference predictors (e.g., siblings of adults with autism with fewer problem behaviors would have increased health-related quality of life [HRQOL], decreased caregiver burden, and increased reported benefits) and on stress and coping factors related to the burden of providing care for an individual with autism (e.g., greater use of avoidant coping strategies would be related to lower HRQOL, increased caregiver burden, and decreased reports of benefits). Exploratory hypotheses also were examined (e.g., being married would be associated with increased HRQOL, decreased burden, and increased reported benefits). The within-subject results indicated support for eight of the ten primary hypotheses and five of the six exploratory hypotheses when examined within at least one of the study groups: Autism, DS, or Disability. Overall, sibling caregivers, regardless of their sibling’s disability, reported more favorable psychosocial outcomes when demands were lower (e.g., less severe levels of problem behaviors, fewer autism symptoms exhibited by their disabled sibling, decreased additional pile-up stress), when resources were available to cope with stress (e.g., social support, respite care), and when healthy responses to stress were reported (e.g., use of emotion focused vs. avoidant coping strategies, use of challenge vs. threat appraisal types). Of note, reported benefits, which have rarely been examined in the autism literature, were strongly related to the quality of a sibling relationship across all study groups, and with the helpfulness of received services and perceived social support within the Autism group. The between subject hypotheses also were largely supported. As expected, compared to siblings of those with Down syndrome, siblings of those with autism demonstrated greater levels of caregiver burden and lower mental HRQOL. Moreover, there was a rank ordering in levels of caregiver burden across disability groups; siblings of adults with DS reported the lowest burden, siblings of adults with DS with symptoms of autism reported significantly higher levels of burden, and siblings of those with autism reported the most burden. The results imply that autism, either alone or co-morbid with another diagnosis, presents an increased risk of stress and caregiver burden, not only in parent caregivers, but also in sibling caregivers. Interestingly, there was also evidence for higher levels of stress related growth within the Autism group compared to the DS group. Future research will be needed to generalize the results of this study to broader samples of adult siblings while taking a life course perspective to assess changes in non-disabled siblings’ outcomes over time.