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An observation study of power practices and participation in group homes for people with intellectual disability
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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.
Investigation of physical and functional impairments experienced by people with active tuberculosis infection: A feasibility pilot study
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Background: Tuberculosis (TB) remains a significant healthcare problem. Understanding physical and functional impairments that patients with active TB present with at the time of diagnosis and how these impairments change over time while they receive anti-TB therapy is important in developing appropriate rehabilitation programmes to optimise patients’ recovery.
Objectives: The aim of this study was to assess the acceptability, implementation and practicality of conducting a prospective, observational and longitudinal trial to describe physical and functional impairments of patients with active TB.
Method: A feasibility pilot study was performed. Patients with acute pulmonary TB admitted to an urban quaternary-level hospital were recruited. Physical (muscle architecture, mass and power, balance, and breathlessness) and functional (exercise capacity) outcomes were assessed in hospital, and at 6 weeks and 6 months post-discharge. Descriptive statistics were used to analyse the data.
Results: High dropout (n = 5; 41.7%) and mortality (n = 4; 33.3%) rates were observed. Limitations identified regarding study feasibility included participant recruitment rate, equipment availability and suitability of outcome measures. Participants’ mean age was 31.5 (9.1) years and the majority were human immunodeficiency virus (HIV) positive (n = 9; 75%). Non-significant changes in muscle architecture and power were observed over 6 months. Balance impairment was highlighted when vision was removed during testing. Some improvements in 6-minute walk test distance were observed between hospitalisation and 6 months.
Conclusion: Success of a longitudinal observational trial is dependent on securing adequate funding to address limitations observed related to equipment availability, staffing levels, participant recruitment from additional study sites and participant follow-up at community level. Participants’ physical and functional recovery during anti-TB therapy seems to be limited by neuromusculoskeletal factors.
African Journal of Disability, Vol 8, 2019
Persons with profound intellectual disability and their right to sex
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This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.
Towards a new directional turn? Directors with cognitive disabilities
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Drawing from my first-hand observations and embodied experiences of having collaborated with HORA over the course of several years, this paper discusses an under-investigated area within the field of disability and performance: pioneering work by directors and with learning or cognitive disabilities, an area which has not yet been addressed in the expanding field of disability and performance studies.
How nursing home residents with dementia respond to the interactive art installation ‘VENSTER’: a pilot study
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The goal of this study was (1) to determine whether and how nursing home residents with dementia respond to the interactive art installation in general and (2) to identify whether responses change when the content type and, therefore, the nature of the interaction with the artwork changes. The interactive art installation ‘VENSTER’ evokes responses in nursing home residents with dementia, illustrating the potential of interactive artworks in the nursing home environment. Frequently observed responses were naming, recognizing or asking questions about depicted content and how the installation worked, physically gesturing towards or tapping on the screen and tapping or singing along to the music. It seemed content matters a lot. When VENSTER is to be used in routine care, the choice of a type of content is critical to the intended experience/usage in practice. In this study, recognition seemed to trigger memory and (in most cases) a verbal reaction, while indistinctness led to asking for more information. When (initially) coached by a care provider, residents actively engaged physically with the screen. Responses differed between content types, which makes it important to further explore different types of content and content as an interface to provide meaningful experiences for nursing home residents.
Living with disabled children in Malawi: Challenges and rewards
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Background: Rehabilitation personnel need to be sensitive to the cultural aspects that constitute the environment of a disabled child’s family life.
Objectives: The aim of this study was to gain insight on how families experience parenting of disabled children and how the families experience the support provided by the rehabilitation system in Malawi.
Method: An anthropological field study combining interviews and observations was conducted in a rural district of Malawi in 2011. Permission was granted to follow four families, and this study presents the stories of two families, whose children have severe disabilities. We used phenomenological and narrative analyses to make sense of the stories.
Results: The findings indicate that families with disabled children invest time and emphasise care for their disabled children. They feel enriched by their experience despite challenging situations with little support from the rehabilitation services. High standards of care demonstrating positive and moral attitudes have earned these families respect in their communities. Storytelling has created an opportunity for the families to understand and interpret their challenging situation with inherent contextual meaning.
Conclusion: This study shows that families with disabled children draw on cultural and structural strengths that rehabilitation professionals should be aware of in their support to mothers and other caregivers of children with disabilities.
Labeling albinism: language and discourse surrounding people with albinism in Tanzania
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This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas.
Health-related quality of life of patients six months poststroke living in the Western Cape, South Africa
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Background: The majority of individuals report a decline in health-related quality of life following a stroke. Quality of life and factors predicting quality of life could differ in individuals from lower income countries. The aim of this study was therefore to determine the quality of life and factors influencing quality of life of community-dwelling stroke patients living in low-income, peri-urban areas in the Western Cape, South Africa.
Method: An observational, longitudinal study was used to collect data from a conveniently selected sample of first-ever stroke patients. The Rivermead Motor Assessment Scale and the Barthel Index were used to determine functional outcome and the EQ-5D was used to collect information relating to quality of life at two months and six months poststroke. Descriptive and inferential statistics were used to analyse the data.
Results: The total sample of 100 participants consisted of 50% men and 50% women with a mean age of 61 and a standard deviation of 10.55 years. Six-month quality of life datawas analysed for 73 of the 100 participants. Of the 27 who were lost to follow-up, nine participants died, four withdrew from the study after baseline data was collected and eleven could not be followed up as they had either moved or no follow-up telephone numbers were available. A further three participants were excluded from the analysis of the EQ-5D as they were aphasic. Of these, approximately 35% had problems with mobility and self-care, whilst 42% had severe problems with everyday activities and 37.8% expressed having anxiety and depression. Quality of life at two months (p = 0.010) and urinary incontinence (p = 0.002) were significant predictors of quality of life at six months.
Conclusion: Health-related quality of life was decreased in the South African stroke sample. Functional ability and urinary incontinence were the factors affecting quality of life in the sample. These factors should be considered in the rehabilitation of stroke patients in these settings.
Recognising the agency of people with dementia
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People with dementia have been assumed to possess weak or even no agency, so this paper provides a novel contribution to academic debate by examining their actual potential for agency. The author draws on findings from a qualitative study of everyday decision-making by people with dementia that aimed to iden- tify the role of social factors (such as gender) in influencing their involvement in decisions. Whilst decision-making constitutes a form of deliberative agency, the research also identified when agency was alternatively habituated, embodied or emotional. The Economic and Social Research Council-funded research was undertaken in the North of England. Existing theoretical perspectives on agency are critiqued, particularly in relation to rationality, language and individualised agency. The study highlighted that people with dementia who lack deliberative capacity can nonetheless demonstrate creative capacity for agency. A more expansive concept of agency is needed in social science theory that is informed by the experiences of cognitively disabled people.
Journey through the Trials and Triumphs of Disability
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One Woman’s journey through the Trials and Triumphs of Disability, Disabled Peoples International 8th World Assembly 2011 Durban, South Africa, October 10–13, 2011. When embarking on my career as a teacher at a special school in South Africa, I never thought that a motor vehicle accident would place me in the position where my learners with disabilities suddenly saw me as an ally. Little did I realise the chasm that exists between able-bodied people and people with disabilities, or the remarkable role I would find myself in whilst actively addressing disability and Inclusive Education issues. My experiences with disability in South Africa drew encouraging attention from delegates at the Disabled People’s International 8th World Assembly when I shared my story. The resounding positive response affirmed that my experiences are not unique to nationality, gender, race or age, and are typical of the time and country in which I live, where people with disabilities are considered to have little potential, and woman with disabilities are further marginalised. In the infancy of our democracy, we are still in the early days of attending to equity amongst all South Africans. This story comprises both a narrative and a graphic presentation which run parallel, although not always telling an identical story; they complement one another and should be experienced simultaneously. Ultimately, it relates the success that can be achieved by pro-active people with disabilities as members of the South African society within their own spheres of knowledge and skill to change attitudes and practices of people without disabilities in education and local communities.
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