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Access to health care in an age of austerity: disabled people’s unmet needs in Greece

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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Since late 2009, Greece has been dealing with the effects of a debt crisis. The neoliberal principles embedded in the three structural adjustment programmes that the country accepted have required radical cuts in health care funding, which in turn have led to widening inequalities in health. This article focuses on access to health care for people with disabilities in Greece in the context of these structural adjustments. We investigate possible differences in unmet health care needs between people with and without disabilities, using de-identified cross-sectional data from the European Health Interview Survey. The sample included 5400 community- dwelling men and women aged 15 years and over. The results of the logistic regressions showed that people with disabilities report higher unmet health care needs, with cost, transportation, and long waiting lists being significant barriers; experience of all barriers was positively associated with low socio- economic status. These findings suggest that a section of the population who may have higher health care needs face greater barriers in accessing services. Austerity policies impact on access to health care in both direct and indirect ways, producing long-term disadvantage for disabled people. Social policies and comprehensive anti-discrimination legislation might help to address some of the barriers this population faces.

Psychological well-being of adolescents with physical disabilities in Zimbabwean inclusive community settings: An exploratory study

MPOFU, Jabulani
SEFOTHO, Maximus M.
MAREE, Jacobus G.
2017

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Background: The purpose of this study was to explore the psychological well-being of adolescents with physical disabilities living in inclusive community settings of Makonde Urban in Zimbabwe. An inclusive community is one that aims to remove exclusionary practices within the community and promote community systems that accept all people irrespective of their difference. Inclusive communities on their own are not uniquely designed for people with disabilities, but most developing countries have adopted them as a basic strategy to influence and enhance psychological well-being of people with disabilities.


Methods: A constructivist lived experience perspective underpinned this research, in which multiple case studies were used to interact with the participants on inclusion and psychological well-being of adolescents with physical disabilities. Purposive sampling was used to select 14 participants (9 males and 5 females). Data were collected through face-to-face interviews and transcribed verbatim. Four themes emerged from the thematic analysis of data sources.


Results: It was found that participants who were adolescents with physical disabilities living in inclusive community settings of Makonde Urban in Zimbabwe were having high levels of autonomy and choice, purpose in life, positive relations with others and good personal growth and self-acceptance.


Conclusion: The findings of this study should enable inclusive communities’ policy-makers and researchers to better understand the psychological well-being of adolescents with physical disabilities living in inclusive communities.

Wheelchair services and use outcomes: A cross-sectional survey in Kenya and the Philippines

BAZANT, Eva S.
HURWITZ, Elizabeth J. Himelfarb
ONGUTI, Brenda N.
WILLIAMS, Emma K.
NOON, Jamie H.
XAVIER, Cheryl A.
GARCIA, Ferdiliza D.S.
GICHANGI, Anthony
GABBOW, Mohammed
MUSAKHI, Peter
KIRBY, R. Lee
2017

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Background: The World Health Organisation recommends that services accompany wheelchair distribution. This study examined the relationship of wheelchair service provision in Kenya and the Philippines and wheelchair-use–related outcomes.


Method: We surveyed 852 adult basic manual wheelchair users. Participants who had received services and those who had not were sought in equal numbers from wheelchair-distribution entities. Outcomes assessed were daily wheelchair use, falls, unassisted outdoor use and performance of activities of daily living (ADL). Descriptive, bivariate and multivariable regression model results are presented.


Results: Conditions that led to the need for a basic wheelchair were mainly spinal cord injury, polio/post-polio, and congenital conditions. Most Kenyans reported high daily wheelchair use (60%) and ADL performance (80%), while these practices were less frequent in the Philippine sample (42% and 74%, respectively). Having the wheelchair fit assessed while the user propelled the wheelchair was associated with greater odds of high ADL performance in Kenya (odds ratio [OR] 2.8, 95% confidence interval [CI] 1.6, 5.1) and the Philippines (OR 2.8, 95% CI 1.8, 4.5). Wheelchair-related training was associated with high ADL performance in Kenya (OR 3.2, 95% CI 1.3, 8.4). In the Philippines, training was associated with greater odds of high versus no daily wheelchair use but also odds of serious versus no falls (OR 2.5, 95% CI 1.4, 4.5).


Conclusion: Select services that were associated with some better wheelchair use outcomes and should be emphasised in service delivery. Service providers should be aware that increased mobility may lead to serious falls.
 

People with disabilities and income-related social protection measures in South Africa: Where is the gap?

HANASS-HANCOCK, Jill
MCKENZIE, Tamlyn C.
2017

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Background: People with disabilities are at increased risk of poverty, particularly in low-and middle-income countries. However, recent evidence suggests that this association is more nuanced than previously anticipated and that we need better data to understand the opportunity and out-of-pocket costs that diverse groups of people with disabilities may experience.


Objective: This paper discusses if disability is associated with opportunity cost and loss of income both on the individual and household level in South Africa, and if these costs differ depending on disability type and severity.


Methods: For this purpose, the paper analyses General Household Survey 2011 data (people between 15 and 59) using descriptive statistics disaggregated via disability type and severity. The paper also assesses if social grants counteract these costs and reduce economic vulnerability.


Results: The analysis of the data reveals that people with disabilities are affected by issues relating to multidimensional poverty such as lower educational attainment and fewer employment opportunities. In addition, households of people with disabilities (with the exception of milder visual problems) earn significantly less than households without people with disabilities, and this particularly applies to households with people with severe disabilities. This vulnerability also varies by disability type. The country’s social protection mechanisms, in terms of social grants, counteract economic vulnerability to some extent but do not consider the nuanced economic impact of diverse conditions nor the increased out-of-pocket costs related to disability.


Conclusions: This calls for more equitable social protection mechanisms that include accessible services, livelihood programmes and disability benefits.

The long-term impact of wheelchair delivery on the lives of people with disabilities in three countries of the world

SHORE, Susan
2017

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Background: Lack of access to mobility for people with disabilities, particularly in less- resourced settings, continues to be widespread. Despite challenges to wheelchair delivery, the benefits to health, employment, social integration and life satisfaction are apparent.


Objectives: Previous studies have explored the impact of receiving a wheelchair on the lives of the users through cross-sectional or short-term longitudinal analysis. The current study was undertaken to evaluate whether previously reported changes were sustained after 30 months of use, and whether results varied between two differing models of a wheelchair.


Method: One hundred and ninety-one subjects from Peru, Uganda and Vietnam received one of two models of wheelchair provided by the Free Wheelchair Mission. Using interviews to record survey results, data were collected at the time the wheelchair was received and following 12 and 30 months of use. Variables of overall health, employment, income and travel were explored through non-parametric analysis.


Results: There was a significant improvement in overall health and distance travelled after 12 months, but these changes were no longer significant by 30 months (Friedman test for overall change, p = 0.000). Employment status showed a small but significant increase at 12 and 30 months (Cochran’s Q, p = 0.000). Reported income increased slowly, becoming significantly different at 30 months (Friedman test, p = 0.033). There was no association between the model of wheelchair received and the incidence of pressure ulcers, pain or maintenance required. There was higher satisfaction with the GEN_2 wheelchair at 12 months (p = 0.004), but this difference was not apparent by 30 months. Overall wheelchair satisfaction and maintenance levels were favourable.


Conclusion: While overall health status, and distance travelled into the community fluctuated over time, receipt of one of two models of a wheelchair in less-resourced settings of the world appears to have a positive sustained impact on employment and income. Further investigations should be carried out to confirm these results and explore the factors responsible for fluctuating variables. This study affirms the importance of long-term follow-up of outcomes associated with wheelchair distribution in less-resourced environments.

Forgotten, excluded or included? Students with disabilities: A case study at the University of Mauritius

PUDARUTH, Sameerchand
GUNPUTH, Rajendra P.
SINGH, Upasana G.
2017

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Background: Students with disabilities in the tertiary education sector are more than a just a phenomenon, they are a reality. In general, little attention is devoted to their needs despite the fact that they need more care and attention.


Objectives: This paper, through a case study at the University of Mauritius, sought to answer some pertinent questions regarding students with disabilities. Does the University of Mauritius have sufficient facilities to support these students? Are students aware of existing facilities? What additional structures need to be put in place so that students with any form of disability are neither victimised, nor their education undermined? Are there any local laws about students with disabilities in higher education?


Method: To answer these questions and others, an online questionnaire was sent to 500 students and the responses were then analysed and discussed. The response rate was 24.4% which showed that students were not reticent to participate in this study.


Results: Our survey revealed that most students were not aware of existing facilities and were often neglected in terms of supporting structures and resources. ICT facilities were found to be the best support that is provided at the University of Mauritius. The right legal framework for tertiary education was also missing.


Conclusion: Ideally, students with disabilities should have access to special facilities to facilitate their learning experiences at tertiary institutions. Awareness about existing facilities must also be raised in order to offer equal opportunities to them and to enable a seamless inclusion.

Enhancing reading abilities of learners with intellectual impairments through computer technology

MOSITO, Cina P.
WARNICK, Albert M.
ESAMBE, Emmanuel E.
2017

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Background: Developments in the teaching of children with disabilities support pedagogy that emphasises learners’ strengths as opposed to their assumed deficiencies. Educators and mediators who advocate this view continually strive for tools and methodologies that enhance learner participation in academic environments. Computer technology is one of the tools recognised for its potential to enrich learning experiences of learners with an intellectual impairment.


Objectives: We sought to assess the influence of text-to-speech stories on the reading ability of intellectually challenged learners.

 

Method: A qualitative action research study that involves learners at a special school in Cape Town, South Africa. Pre- and post-test data of the reading performance of learners are analysed with a focus on how they demonstrate change.

 

Results: Although no claims can be made about the explicit influence on reading performance, computer-assisted learning has the potential in isolating reading processes that classroom-based interventions can address. In addition, computers enhance motivation and enthusiasm to learn.

 

Conclusion: A need for education based on inclusion and positive differentiation remains the key driver in any educational interventions.

The development and evaluation of content validity of the Zambia Spina Bifida Functional Measure: Preliminary studies

MWESHI, Margaret M.
AMOSUN, Seyi L.
SHILALUKEY-NGOMA, Mary P.
MUNALULA-NKANDU, Esther
KAFAAR, Zuhayr
2017

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Background: Very little is known on outcome measures for children with spina bifida (SB) in Zambia. If rehabilitation professionals managing children with SB in Zambia and other parts of sub-Saharan Africa are to instigate measuring outcomes routinely, a tool has to be made available. The main objective of this study was to develop an appropriate and culturally sensitive instrument for evaluating the impact of the interventions on children with SB in Zambia.


Methods: A mixed design method was used for the study. Domains were identified retrospectively and confirmation was done through a systematic review study. Items were generated through semi-structured interviews and focus group discussions. Qualitative data were downloaded, translated into English, transcribed verbatim and presented. These were then placed into categories of the main domains of care deductively through the process of manifest content analysis. Descriptive statistics, alpha coefficient and index of content validity were calculated using SPSS.


Results: Self-care, mobility and social function were identified as main domains, while participation and communication were sub-domains. A total of 100 statements were generated and 78 items were selected deductively. An alpha coefficient of 0.98 was computed and experts judged the items.


Conclusions: The new functional measure with an acceptable level of content validity titled Zambia Spina Bifida Functional Measure (ZSBFM) was developed. It was designed to evaluate effectiveness of interventions given to children with SB from the age of 6 months to 5 years. Psychometric properties of reliability and construct validity were tested and are reported in another study.

‘When he’s up there he’s just happy and content’: Parents’ perceptions of therapeutic horseback riding

Boyd, Lauren
le ROUX, Marieanna
2017

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Background: There is limited global and South African research on parents’ perceptions of therapeutic horseback riding (THR), as well as their perceptions of the effect of the activity on their children with disabilities.


Objective: To explore and describe parents’ perceptions and experiences of THR as an activity for their children with disabilities.


Method: Twelve parents whose children attend THR lessons at the South African Riding for the Disabled Association in Cape Town were asked to participate in a semi-structured interview. The qualitative data obtained from the interviews were first transcribed and then analysed using thematic analysis to establish parents’ perceptions of the THR activity.


Results: The main themes that emerged included parental perceived effects of THR on children, parents’ personal experiences of the services, and parents’ perceived reasons for improvements in the children. The participating parents indicated that THR had had a positive psychological, social and physical effect both on the children participating in the riding, as well as on the parents themselves.


Conclusion: According to parents, THR plays an important role in the lives of children with various disabilities and in the lives of their parents. The results of the study address the gap in the literature regarding parents’ perceptions of THR.

Challenges faced by parents of children with learning disabilities in Opuwo, Namibia

TADERERA, Clever
HALL, Herna
2017

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Background: Parenting children with learning disabilities requires a high level of knowledge and access to resources, information and services. In developing countries, however, these resources and services are not always available. Parents in Namibia, a developing country, therefore face challenges addressing children’s learning and other developmental disabilities, including challenges related to preventative and supportive interventions.


Objective: This research focuses on challenges faced by parents as they parent children with learning disabilities in Opuwo, Namibia.


Method: In-depth interviews were conducted with eight parents regarding the challenges they face in parenting their children with learning disabilities. Thematic analysis enabled the researchers to identify, analyse and report on themes that emerged from the qualitative interview data.


Results: Analysis of the interviews indicated that some participants had only a vague understanding of learning disabilities, as they did not have access to essential knowledge about this phenomenon. They also lacked an awareness of the availability of programmes, services and policies meant to benefit their children with learning disabilities. Participants voiced that they, their children with learning disabilities and community members have stereotypes and prejudices regarding learning disabilities. In this study, most of the children with learning disabilities were raised by single, unemployed parents who seemed to have access to less support from external sources than married couples parenting children with learning disabilities. These single parents are usually not married and because of lack of financial support from the other parent, the majority of them indicated that they struggle to meet the financial and material needs of their children.


Conclusion: The researchers concluded that the participants in this study experience a range of challenges in parenting their children with learning disabilities. The main challenges emanate from financial instability, as well as lack of knowledge regarding services and programmes for children with learning disabilities. This lack of knowledge on the part of participants could indicate poor policy education by policy implementers at grass-roots level.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

Challenges faced by women with disabilities in accessing sexual and reproductive health in Zimbabwe: The case of Chitungwiza town

Tafadzwa RUGOHO,
France MAPHOSA
2017

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Background: Women with disabilities in Zimbabwe face numerous challenges in accessing sexual and reproductive health. Cultural belief still regards them as not sexually active. The government has also failed to promote policies that facilitate access to sexual and reproductive services by women with disabilities.


Objectives: The reseach objectives were to explore the challenges faced by women with disabilities in accessing sexual and reproductive health in Zimbabwe.


Method: The data were gathered using in-depth interviews with 23 purposively selected respondents. Thirteen women had physical disabilities, five were visually impaired, three were deaf and two were stammering. The respondents with physical disabilities were using wheelchairs, walking frames, prosthesis, crutches and caliper shoes. The participants’ ages ranged from 18 to 45 years. All interviews were transcribed and translated verbatim into English, and passages were extracted from the transcripts. Key themes and concepts were identified and coded to offer a rich framework for analysis, comparisons and presentation of the data.


Results: Negative perceptions of health personnel towards people with disabilities, disability-unfriendly infrastructure at health facilities and absence of trained personnel for people with disabilities (sign language) are some of the challenges involved.
Conclusion: The government, in partnership with other stakeholders, should address challenges faced by women with disabilities when accessing sexual and reproductive health services. Non-government, private hospitals and profit-making organisations should join hands with government in funding health requirements for women with disabilities.

Access to curriculum for students with disabilities at higher education institutions: How does the National University of Lesotho fare?

MOSIA, Paseka A.
PHASHA, Nareadi
2017

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Background: Creating access to curricula at institutions of higher education for students with disabilities requires a concerted effort from management and other key stakeholders to identify students’ needs and create opportunities for success.
Objectives: This paper presents the findings of a study which examined students with disabilities’ access to curricula at a higher education institution in Lesotho.


Method: Data for this qualitative study were collected using three methods: in-depth interviews, focus group discussions and document analysis. Eleven students with various types of impairments and 15 academic and non-academic staff members currently working in close proximity to students with disabilities participated in this study.


Results: The findings reveal inconsistencies between the institution’s admission policy of non-discrimination according to disability status and its practices. These inconsistencies are discussed under the following themes: (1) access at admission level, (2) management of disability data, (3) support by the special education unit, (4) teaching strategies, (5) support by lecturers, (6) availability of assistive technology, (7) special concessions and (8) students’ coping mechanisms.


Conclusion: We recommend that a clear policy concerning the support of students with disabilities be developed with the following aims: guide decisions on how disability data should be used, define roles that different university departments must play in facilitating access to curricula for all students, influence suitable development of teaching and learning resources, stimulate research on success and completion rates of students with disabilities and mandate restructuring of programmes that are currently inaccessible to students with disabilities. Key stakeholders, including students with disabilities, disabled persons’ organisations, disability rights activists, and staff should be involved in such policy design.

Exploring structural violence in the context of disability and poverty in Zimbabwe

MUDEREDZI, Jennifer T.
EIDE, Arne H.
BRAATHEN, Stine H.
STRAY-PEDERSEN, Babill
2017

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Background: While it is widely assumed that disability, poverty and health are closely linked, research falls short of fully understanding the link. One approach to analysing the links between disability and poverty is through the concept of structural violence, referring to social structures that contribute to the impoverishment of individuals or communities. These structures can be political, ecological, legal and economic, among others.


Objective: To explore structural violence and how it affects families of children with cerebral palsy among the Tonga ethnic group living in poor rural communities of Binga in Zimbabwe.


Method: This is a longitudinal, qualitative and ethnographic study. Data were collected over a period of eight years from 2005 to 2013. Data collection techniques were in-depth interviews, participant observation and focus group discussions. Purposive sampling was used to recruit 53 informants.


Results: Structural violence was noted through four themes: internal displacement and development, food and politics, water and sanitation, and social services. Poverty was noted in the form of unemployment, lack of education, healthcare, food and shelter. The concept of structural violence inflicted social suffering on the informants. Politics played a major role in activities such as food withdrawal, lack of water, development and allocation of local resources to ‘the people of the city’, leaving the informants struggling with care.

 

Conclusion: Political and economic forces have structured risks and created a situation of extreme human suffering. The capabilities approach brings out the challenges associated with cerebral palsy in the context of development challenges.

Exploration of the academic lives of students with disabilities at South African universities: Lecturers’ perspectives

MUTANGA, Oliver
WALKER, Melanie
2017

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Background: A decade has passed since South Africa signed and ratified the Convention on the Rights of Persons with Disabilities, a human rights treaty that protects the rights and dignity of people with disabilities. However, not much have changed for students with disabilities.


Objectives: The aim of this study was to explore lecturers’ experiences with, and perspectives on, disability as well as with students with disabilities. It was hoped that this would contribute to the ongoing policy debates about diversity, inclusion and support for students with disabilities at universities.


Methods: In an effort to understand the lives of students with disabilities better, a study which included students with disabilities, lecturers and disability supporting staff was conducted at two South African universities – University of the Free State and University of Venda. The paper takes a snapshot view of four lecturers and their perceptions of the lives of students with disabilities at their respective universities.


Results and Conclusion: Although most disability literature report students with disabilities blaming lecturers for their failure to advance their needs, this paper highlights that the education system needs to be supportive to lecturers for the inclusive agenda to be realised. An argument is made for a more comprehensive approach towards a national disability policy in higher education involving many stakeholders. Without a broader understanding of disability, it will be difficult to engage with the complex ways in which inequalities emerge and are sustained.

Communication rehabilitation in sub-Saharan Africa: A workforce profile of speech and language therapists

WYLIE, Karen
MCALLISTER, Lindy
DAVIDSON, Bronwyn
MARSHALL, Julie
2016

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Background: There is an urgent global need to strengthen rehabilitation services for people with disabilities. In sub-Saharan Africa, rehabilitation services for people with communication disabilities continue to be underdeveloped. A first step in strengthening services for people with a communication disabilities is to understand the composition and conditions of the current workforce.


Objectives: This research describes a sample of the speech and language therapists (SLTs) working in SSA (excluding South Africa). This study explores the characteristics of this workforce, including their demographics, education, experience and geographical stability.


Method: A mixed-methods survey was used to collect data from SLTs within Anglophone countries of SSA. Completed surveys were received from 33 respondents working in 44 jobs across nine countries. Analysis included descriptive and non-parametric inferential statistics. This study reports on a subset of descriptive and quantitative data from the wider survey.


Results: A background profile of SLTs across the region is presented. Results indicated that the workforce of SLTs comprised a mix of local and international SLTs, with university-level education. Local SLTs were educated both within and outside of Africa, with more recent graduates trained in Africa. These data reflected the local emergence of speech and language therapy training in SSA.


Conclusion: This sample comprised a mix of African and international SLTs, with indications of growing localisation of the workforce. Workforce localisation offers potential advantages of linguistic diversity and stability. Challenges including workforce support and developing culturally and contextually relevant SLT practices are discussed.
 

Students with hearing impairment at a South African university: Self-identity and disclosure

BELL, Diane
CARL, Arend
SWART, Estelle
2016

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Background: A growing number of students with hearing loss are being granted access to higher education in South Africa due to the adoption of inclusive educational policies. However, available statistics indicate that participation by students with hearing impairments in higher education remains low and research suggests that support provisioning for those who do gain access is inadequate.


Objectives:  This article aims to illustrate that the assumed self-identity of students with hearing impairment influences their choice to disclose their disability. The choice not to disclose their hearing loss prevents them from accessing the necessary reasonable accommodations and this in turn may affect their eventual educational success.


Method: Reported here is a qualitative descriptive case study at a South African university. Purposive sampling methods were employed. Data were gathered from in-depth interviews with seven students with hearing impairment ranging from moderate to profound, using spoken language. Constructivist grounded theory was used as an approach to the process of generating and transforming the data, as well as the construction of theory.


Findings: All the student participants identified as having a hearing rather than a D/deaf identity cultural paradigm and viewed themselves as ‘normal’. Linked to this was their unwillingness to disclose their hearing impairment and thus access support.


Conclusion: It is crucially important for academic, support and administrative staff to be aware of both the assumed ‘hearing’ identity and therefore subsequent non-disclosure practices of students with a hearing impairment using the oral method of communication. Universities need to put measures in place to encourage students to voluntarily disclose their hearing impairment in order to provide more targeted teaching and learning support. This could lead to improved educational outcomes for students.

The validation of an educational database for children with profound intellectual disabilities

SPANGENBERG, Karlien
CORTEN, Lieselotte
VAN RENSBURG, Winnie
KILIAN, Elizma
MCKENZIE, Judith
VORSTER, Hein
JELSMA, Jennifer
2016

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Background: The Western Cape Forum for Intellectual Disability took the South African Government to court in 2010 on its failure to implement the right to education for Children with Severe and Profound Intellectual Disability. Subsequently, multidisciplinary teams were appointed by the Western Cape Education Department to deliver services to the Special Care Centres (SCCs). Initially, minimal information was available on this population.


Objectives: The purpose is to document the process of developing and validating a database for the collection of routine data.


Method: A descriptive analytical study design was used. A sample of convenience was drawn from individuals under the age of 18 years, enrolled in SCCs in the Western Cape. The team who entered and analysed the data reached consensus regarding the utility and feasibility of each item.


Results: Data were collected on 134 children. The omission of certain items from the database was identified. Some information was not reliable or readily available. Of the instruments identified to assess function, the classification systems were found to be reliable and useful, as were the performance scales. The WeeFIM, on the other hand, was lengthy and expensive, and was therefore discarded.
Discussion and conclusions: A list of items to be included was identified. Apart from an individual profile, it can be useful for service planning and monitoring, if incorporated into the central information system used to monitor the performance of all children. Without such inclusion, this most vulnerable population, despite court ruling, will not have their right to education adequately addressed.

Childhood disability population-based surveillance: Assessment of the Ages and Stages Questionnaire Third Edition and Washington Group on Disability Statistics/UNICEF module on child functioning in a rural setting in South Africa

VISSER, Marieta
NEL, Mariette
BRONKHORST, Caretha
BROWN, Lara
EZENDAM, Zaskia
MACKENZIE, Kira
VAN DER MERWE, Deidré
VENTER, Marné
2016

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Background: Epidemiological information on childhood disability provides the basis for a country to plan, implement and manage the provision of health, educational and social services for these vulnerable children. There is, however, currently no population-based surveillance instrument that is compatible with the International Classification of Functioning, Disability and Health (ICF), internationally comparable, methodologically sound and comprehensively researched, to identify children under 5 years of age who are living with disability in South Africa and internationally. We conducted a descriptive pilot study to investigate the sensitivity and specificity of translated versions of the Ages and Stages Questionnaire Third Edition (ASQ-III) and the Washington Group on Disability Statistics/UNICEF module on child functioning (WG/UNICEF module) as parent-reported measures. The aim of our study was to identify early childhood disabilities in children aged 24–48 months in a rural area of South Africa, to determine the appropriateness of these instruments for population-based surveillance in similar contexts internationally.

 

Methods: This study was conducted in the Xhariep District of the Free State Province in central South Africa, with 50 carers whose children were registered on the South African Social Security Agency (SASSA) database as recipients of a grant for one of the following: Care Dependency, Child Support or Foster Care. The researchers, assisted by community healthcare workers and SASSA staff members, conducted structured interviews using forward–backward translated versions of the ASQ-III and the WG/UNICEF module.


Results: Both measurement instruments had a clinically meaningful sensitivity of 60.0%, high specificity of 95.6% for the ASQ-III and 84.4% for the WG/UNICEF module, and the two instruments agreed moderately (Kappa = 0.6).

 

Conclusion: Since the WG/UNICEF module is quicker to administer, easier to understand and based on the ICF, it can be considered as an appropriate parent-reported measure for large-scale, population-based as well as smaller, community-specific contexts. It is, however, recommended that future research and development continues with the WG/UNICEF module to enhance its conceptual equivalence for larger-scale, population-based studies in South Africa and internationally.

Childhood disability in Turkana, Kenya: Understanding how carers cope in a complex humanitarian setting

ZUURMOND, Maria
NYAPERA, Velma
MWENDA, Victoria
KISIA, James
RONO, Hilary
PALMER, Jennifer
2016

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Background: Although the consequences of disability are magnified in humanitarian contexts, research into the difficulties of caring for children with a disability in such settings has received limited attention.


Methods: Based on in-depth interviews with 31 families, key informants and focus group discussions in Turkana, Kenya, this article explores the lives of families caring for children with a range of impairments (hearing, vision, physical and intellectual) in a complex humanitarian context characterised by drought, flooding, armed conflict, poverty and historical marginalisation.


Results: The challenging environmental and social conditions of Turkana magnified not only the impact of impairment on children, but also the burden of caregiving. The remoteness of Turkana, along with the paucity and fragmentation of health, rehabilitation and social services, posed major challenges and created opportunity costs for families. Disability-related stigma isolated mothers of children with disabilities, especially, increasing their burden of care and further limiting their access to services and humanitarian programmes. In a context where social systems are already stressed, the combination of these factors compounded the vulnerabilities faced by children with disabilities and their families.


Conclusion: The needs of children with disabilities and their carers in Turkana are not being met by either community social support systems or humanitarian aid programmes. There is an urgent need to mainstream disability into Turkana services and programmes.

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