An observation study of power practices and participation in group homes for people with intellectual disability
2019
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Persons with profound intellectual disability and their right to sex
VEHMAS, Simo
2019
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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.
Living with disabled children in Malawi: Challenges and rewards
BARLINDHAUG, Grete
UMAR, Eric
WAZAKILI, Margaret
EMAUS, Nina
2016
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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.
Health-related quality of life of patients six months poststroke living in the Western Cape, South Africa
RHODA, Anthea, J
2014
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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.
Journey through the Trials and Triumphs of Disability
LAAS, Helen L
2012
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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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