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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.
Work Ability of Employees with Disabilities in Malaysia
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Purpose: Based on a sample of employees with disability, this study aimed to: (1) evaluate the construct validity of work ability index (WAI), core self-evaluation scale (CSES) and job in general index (JIG), in order to make a valid and reliable assessment of their work ability, job satisfaction and core self-evaluation; (2) assess their levels of work ability, job satisfaction, and core self-evaluation; (3) investigate the associations of work ability with job satisfaction and core self- evaluation among them; and, (4) determine which demographic characteristics significantly affect the work ability of employees with disability.
Methods: The sample consisted of 275 employees with disability. Data was collected using a self-administered survey.The analysis focussed on: (1) CFA- for evidence of the construct validity of the employed scales; (2) Descriptive analysis - for evaluating the variables of the study; (3) Pearson correlation analysis – for understanding the simple correlation between variables of the study; and, (4) One-way ANOVA- for identifying the demographic factors that influence the work ability of employees with disability.
Results: The findings indicated that 29.5% of the participants had poor levels of work ability, while 35.3% reported moderate levels of work ability. Also, 49.1% of the participants reported moderate levels of core self-evaluation, and 70.5% exhibited high job satisfaction. In this study, work ability was found to be associated with core self-evaluation and job satisfaction. Significant differences in work ability levels were found in terms of age, level of education and employment status of the respondents.
Conclusion: Work ability among employees with disabilities did not seem to be influenced merely by individual health status. Attitudinal and dispositional factors appeared to have a significant impact on their levels of work ability. Thepotential positive impact of education and employment status on employees’ levels of work ability are highlighted in this study.
Financial Access to Healthcare among Persons with Disabilities in the Kumasi Metropolis, Ghana
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Purpose: According to the World Health Organisation, 10% to 15% of the population of every developing country lives with disability. This amounts to about 2.4 - 3.6 million Ghanaians with disability. Since their contribution is important for the development of the country, this study aimed to assess the financial access to healthcare among persons with disabilities in the Kumasi Metropolis of Ghana.
Methods: A cross-sectional study, involving administration of a semi- structured questionnaire, was conducted among persons with all kinds of disabilities (physically challenged, hearing and visually impaired) in the Kumasi Metropolis. Multi-stage sampling was used to randomly select 255 persons with disabilities from 5 clusters of communities - Oforikrom, Subin, Asewase, Tafo and Asokwa. Data analysis involved descriptive and analytical statistics at 95% CI using SPSS software version 20.
Results: There were more male than female participants, nearly one-third of them had no formal education and 28.6% were unemployed. The average monthly expenditure on healthcare was GHC 21.46 (USD 6.0) which constituted 9.8% of the respondents’ income. Factors such as age, gender, disability type, education, employment, and whether or not they stayed with family members had significant bearing on the average monthly expenses on healthcare (p<0.05).Transportation cost, the travel distance to facilities, and the regular sources of payment for healthcare, had significant relationship with access to healthcare (p<0.05). Although about 63.5% of the respondents used the National Health Insurance Scheme as the regular source of payment for healthcare, 94.1% reported that sources of payment did not cover all their expenses and equipment.
Conclusion: Financial access to healthcare remains a major challenge for persons with disabilities. Measures to finance all healthcare expenses of persons with disabilities are urgently needed to improve their access to healthcare.
Prevalence of Physical Disability among Urban Community-dwelling Adults in Sri Lanka
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Purpose: Assessment of physical disability at the community level is essential for rehabilitation and supply of services. This study aimed to assess the prevalence of physical disability among adults in an urban community in Sri Lanka.
Methods: A descriptive cross-sectional study was conducted among 2460 adults (18 -59 years of age) who were selected using cluster sampling. Physical disability was measured using a Physical Impairment Examination Tool (PIET) and World Health Organisation Disability Assessment Schedule II (WHODAS II).
Results: Prevalence of physical disability was 4.2% (95% CI= 3.5-5.1). Physical disability was higher among people in the age group of 40-59 years (6.5%, n=64) than among those in the age group of 18-39 years (2.6%, n=39) (P<0.05). Physical disability was more prevalent among females (4.4%, 95% CI= 4.2-4.6) than males (2.6%, 95% CI: 2.4-2.8), and among Tamils (7.8%, 95% CI=5.1%- 10.5%) than Sinhalese (3.3%, 95% CI=2.4%- 4.1%). It was higher among those who were divorced/widowed (58.3%, 95% CI=30.4- 86.2) than among married people (3.6%, 95% CI=2.8- 4.4). The prevalence of physical disability was 7.1% (95% CI=4.6- 9.5) among people with primary education, 4.5% (95% CI=3.4- 5.6) among those with secondary education, and 1.8% (95% CI=0.8- 2.8) among those with tertiary education. It was higher among the unemployed (7.2%, 95% CI=5.7-8.7) than the employed (1.8%, 95% CI=1.1-2.5). Age, gender, ethnicity, marital status, education levels and employment status were significantly associated with physical disability.
Conclusions: Though the prevalence of physical disability appears to be higher among Sri Lankan adults than among people in developed countries, it is less than among people in other South-East Asian countries. Associations with socio-demographic variables were consistent with other studies.
Disability, gender, and employment relationships in Africa: The case of Ghana
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The exploratory quantitative study sought to develop an understanding about the relationships among disability, gender and employment in Northern Ghana. A total of 110 individuals with disabilities (20–60 years) from various disability groups participated in the study. The results indicate that many persons with disabilities are unemployed, the majority being women. Discrimination is cited as the greatest barrier to the employment of persons with disabilities, particularly women. The majority of persons with disabilities, typically women, live in poverty; given that some are unemployed and those who are employed worked mostly in marginal, seasonal and menial jobs. Persons with disabilities also experience several challenges on the job, including negative perceptions about their capabilities, discrimination and exclusion, irrespective of the employment sector and disability type. Educational interventions such as workshops, documenting and showcasing success stories of persons with disabilities could be helpful to reduce negative perceptions about their capabilities as well as discrimination against them. Government intervention to support persons with disabilities with start-up capital and funding for formal education is also recommended as these two elements were identified respectively as barriers to self-employment and employment in the public/private sectors. Government interventions to create educational opportunities for persons with disabilities are essential given that lower educational attainment affect their employment.
The complexity of rural contexts experienced by community disability workers in three southern African countries
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An understanding of rural communities is fundamental to effective community-based rehabilitation work with persons with disabilities. By removing barriers to community participation, persons with disabilities are enabled to satisfy their fundamental human needs. However, insufficient attention has been paid to the challenges that rural community disability workers (CDWs) face in trying to realise these objectives. This qualitative interpretive study, involving in-depth interviews with 16 community disability workers in Botswana, Malawi and South Africa, revealed the complex ways in which poverty, inappropriately used power and negative attitudes of service providers and communities combine to create formidable barriers to the inclusion of persons with disabilities in families and rural communities. The paper highlights the importance of understanding and working with the concept of ‘disability’ from a social justice and development perspective. It stresses that by targeting attitudes, actions and relationships, community disability workers can bring about social change in the lives of persons with disabilities and the communities in which they live.
The prevalence of self-reported vision difficulty in economically disadvantaged regions of South Africa
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Background: Vision impairment, resulting in vision difficulties, is a leading cause of disability, and hence one of the key barriers for people to access education and employment, which may force them into poverty.
Objectives: The objective of this study was to determine the prevalence of self-reported vision difficulties as an indicator of vision impairment in economically disadvantaged regions in South Africa, and to examine the relationship between self-reported vision difficulties and socio-economic markers of poverty, namely, income, education and health service needs.
Methods: A cross-sectional study was conducted in economically disadvantaged districts to collect data from households on poverty and health, including vision difficulty. As visual acuity measurements were not conducted, the researchers used the term vision difficulty as an indicator of vision impairment. Data were collected from 27 districts (74 901 respondents). Logistic regression analysis and chi-square tests were used to determine bivariate relationships between variables and self-reported vision difficulty. Kernel density estimators were used for age, categorised by self-reported and not reported vision difficulty.
Results: Prevalence of self-reported vision difficulty was 11.2% (95% CI, 8.7% – 13.7%). More women (12.7%) compared to men (9.5%) self-reported vision difficulty (p < 0.01). Self-reported vision difficulty was higher (14.2%) for respondents that do not spend any money. A statistically significant relationship was found between the highest level of education and self-reporting of vision difficulty; as completed highest level of education increased, self-reporting of vision difficulty became lower (p < 0.01). A significantly higher prevalence of self-reported vision difficulty was found in respondents who are employed (p < 0.01), 17% (95% CI: 12.8% – 21.1%).
Conclusion: The evidence from this study suggests associations between socio-economic factors and vision difficulties that have a two-fold relationship (some factors such as education, and access to eye health services are associated with vision difficulty whilst vision difficulty may trap people in their current poverty or deepen their poverty status). The results are thus indicative of the need for further research in South Africa.
Being black in a white skin: Beliefs and stereotypes around albinism at a South African university
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Background: Partly because of the legacy of apartheid, and despite being a constitutional democracy, South Africa continues to be a deeply divided society, particularly along racial lines. In this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation.
Objectives: The study endeavoured to explore the beliefs and practices regarding albinism within a South African university, and the availability of support services.
Method: The research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. Interviews were conducted with five students with albinism and 10 students without albinism.
Results: Findings confirmed the existence of myths and stereotypes regarding albinism. Students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition.
Conclusion: People with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. Results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof.
Deaf identities in a multicultural setting: The Ugandan context
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Often located far apart from each other, deaf and hearing impaired persons face a multiplicity of challenges that evolve around isolation, neglect and the deprivation of essential social services that affect their welfare and survival. Although it is evident that the number of persons born with or acquire hearing impairments in later stages of their lives is increasing in many developing countries, there is limited research on this population. The main objective of this article is to explore the identities and experiences of living as a person who is deaf in Uganda. Using data from semi-structured interviews with 42 deaf persons (aged 19–41) and three focus group discussions, the study findings show that beneath the more pragmatic identities documented in the United States and European discourses there is a matrix of ambiguous, often competing and manifold forms in Uganda that are not necessarily based on the deaf and deaf constructions. The results further show that the country’s cultural, religious and ethnic diversity is more of a restraint than an enabler to the aspirations of the deaf community. The study concludes that researchers and policy makers need to be cognisant of the unique issues underlying deaf epistemologies whilst implementing policy and programme initiatives that directly affect them. The upper case ‘D’ in the term deaf is a convention that has been used since the early 1970s to connote a ‘socially constructed visual culture’ or a linguistic, social and cultural minority group who use sign language as primary means of communication and identify with the deaf community, whereas the lower case ‘d’ in deaf refers to ‘the audio logical condition of hearing impairment’. However, in this article the lower case has been used consistently.
The Development of a New Quality of Life Questionnaire for Children with Hearing Loss - The Impact of Hearing Loss on Children (IHL-C): Field Testing and Psychometric Evaluation
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Purpose: To report the development of user-defined, multidimensional, psychometrically sound Quality of Life questionnaires – Impact of Hearing Loss on Children – IHL-C 69 and Brief IHL-C for children with hearing loss, in two languages -Tamil and English.
Methods: 421 problem statements from previous qualitative studies were reduced to a 220-item questionnaire with 7 domains (educational implications, social integration, psycho-social well-being, speech, language and communication, family relationships, leisure time activities and general functioning). After field testing, the domain of leisure time activities was dropped, resulting in a 103-item self-administered questionnaire with 6 domains. This 103-item questionnaire was translated from Tamil to English, and self-administered by children with hearing loss (11-18 years of age) in Special schools (n=100) and Integrated schools (n=100), as well as by normal controls in Integrated schools (n=200). Standard methods were used for item reduction and to evaluate psychometric properties.
Results: Psychometric item reduction produced the 69-item IHL-C69 (long version) and 48- item Brief IHL-C (brief version) questionnaires. Psychometric evaluation showed that all the domains of both the questionnaires had good acceptability, high internal consistency (alpha >0.80; intrinsic validity >0.80) and test-retest reliability (0.86).The questionnaires significantly distinguished between the children with hearing loss and the normal controls. The domains of both the questionnaires showed moderate evidence of convergent validity, and discriminant validity derived through hypotheses testing showed mixed results. The translation validity was also determined.
Conclusion: The IHL-C 69 and Brief IHL-C are reliable and valid user-defined, multidimensional questionnaires, available for the first time in both Tamil and English languagesin Tamil Nadu, India. Designed to analyse the impact of hearing loss and to determine the quality of life of children with hearing loss, the questionnaires could be used to prioritise the goals for rehabilitation intervention for these children.
Young people with intellectual disability—The role of self-advocacy in a transformed Swedish welfare system
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A growing number of young people in Sweden with intellectual disability have organized themselves during the last 15 years in self-advocacy groups for socializing, empowerment, and expressing opposition to the norms and attitudes in a society that labels them as disabled. At the same time, the Swedish welfare system has transformed dramatically with processes of far-reaching individualization, closure of the major institutions, decentralization of responsibility from the state to local governments, and an emerging welfare market where service users are turned into customers. The aim of this article is to analyse and discuss the significance of self-advocacy in the new welfare context. Data were collected over a period of more than 10 years using repeated interviews with members of two self-advocacy groups and participation observations. Findings suggest that participation in self-advocacy groups opens up members for increasing health and well-being through new roles and identities, and it strengthens their control over everyday life. Support is still needed, however, but in new ways; otherwise, the restrictions of the institutions will simply be reconstructed in the new welfare system.
Inclusive Education at the crossroads in Ashanti and BrongAhafo regions in Ghana: Target not achievable by 2015
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Purpose: Inclusive education, widely acknowledged as an alternative method of making education accessible to children with special needs, has been piloted for 10 years in selected districts of Ghana. This article aims to discuss the feasibility of implementing it throughout the country, by assessing the inclusive education programme piloted in Ghana’s Ashanti and BrongAhafo regions.
Method: One round of in-depth interviews was conducted with 31 participants, to collect data on the issue under study. Participants were officials of Special Education at the national Head Office, District Special Education Coordinators, Resource Teachers, Headmasters and Classroom Teachers of inclusive education.
Results: The study findings indicated that the pilot programme did not live up to expectations when faced with challenges such as inaccessible environments, lack of resources, lack of funds, lack of qualified teachers, poor teaching methods and negative attitudes of teachers towards children with disabilities.
Conclusion: It is very unrealistic to commence inclusive education programmes unless practical measures are put in place, such as adequate funding from the government and provision of sufficient resources for inclusive schools.
Disability Inclusion in Primary Health Care in Nepal: An Explorative Study of Perceived Barriers to Access Governmental Health Services
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Purpose: Persons with disabilities face additional barriers in accessing primary healthcare services, especially in developing countries. Consequently the prevalence of secondary health conditions is higher among this population. This study aims to explore the perceived barriers to access primary healthcare services by persons with disabilities in the Western region of Nepal.
Methods: 10 primary healthcare providers and 11 persons with disabilities (physically or visually impaired) were selected by non-governmental organisations from the hilly and lower areas. Based on the International Classification of Functioning and the health accessibility model of Institute of Medicine, semi-structured interviews were conducted and analysed using analytical induction.
Results: In general, healthcare providers and persons with disabilities reported similar barriers. Transportation and the attitude of family members and the community were the main environmental barriers. Even with assistive devices, people still depend on their families. Financial barriers were lack of funds for health expenses, problems in generating an income by persons with disabilities themselves, and the low socio-economic status of their families. Personal barriers, which affect help-seeking behaviour in a major way, were most often mentioned in relation to financial and socio-environmental barriers. Low self-esteem of the person with disability determines the family’s attitude and the motivation to seek out healthcare. Lastly, poor public awareness about the needs of persons with disabilities was reported.
Conclusions: Besides the known physical environmental barriers, this study found several environmental, financial and personal barriers that also affect access to primary healthcare. In particular, the attitudes of families and poor financial conditions seem to be interrelated and greatly influence help-seeking behaviour.
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