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Impact of lived experiences of people with disabilities in the built environment in South Africa

McKINNEY, Victor
AMOSUN, Seyi L.
August 2020

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Background: In spite of legislations and policies to ensure an inclusive society in South Africa for the accommodation of people with disabilities, there are reports that they still struggle to move freely within society.

 

Objectives: As part of a larger qualitative exploratory study on the preparation of undergraduate civil engineering students in a local university to contribute to the development of an inclusive society, this article seeks to understand the impact of the lived experiences of people with disabilities in their interaction with the built environment.

 

Method: Four persons with disabilities, considered to be knowledgeable about South African legislations relating to disability, were purposely selected to each share one specific experience whilst interacting with the built environment. The transcribed texts of the interviews were analysed by using the phenomenological–hermeneutic method.

 

Results: The participants exhibited strong desires to participate in society. However, the sense of loss of control and independence as they encountered challenges in the built environment changed the euphoria to disempowerment, rejection, anger and despondency. In spite of their experiences, participants expressed a commitment towards overcoming the challenges encountered in the broader interest of people with disabilities.

 

Conclusion: A deeper understanding of the impact of the experiences of people with disabilities when they participate within the built environment in South Africa revealed a broad spectrum of negative emotions, which may impact the quality of life and well-being of the participants.

 

 

African Journal of Disability, Vol 9, 2020

Capability of deaf children with a cochlear implant

RIJKE, Wouter J
VERMEULEN, Anneke M
WENDRICK, Karine
MYLANUS, Emmanuel
LANGEREIS, Margreet C
VAN DER WILT, Gert Jan
November 2019

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Introduction: The main idea underlying this paper is that impairments such as deafness are particularly relevant to the extent that they lead to deprivation of capability. Likewise, the impact of healthcare services such as cochlear implants and subsequent rehabilitation can best be inferred from the extent that they protect or restore capability of those affected.

 

Methods: To explore children’s post-implant capabilities, we tested two newly developed digital, adaptive child self-report and parent-report questionnaires in 19 deaf children (aged 8–12 years) and their parents during rehabilitation, as well as in 23 age peers with normal hearing.

 

Results: Despite the impressive speech-language results that were recorded with cochlear implants, the post-implant capabilities of the deaf children we evaluated differed from those of their hearing peers, with the cochlear implant group appearing particularly disadvantaged in areas such as accessing information, communication, social participation, and participation in school.

 

Conclusion: Deaf children with cochlear implants who are performing well on linguistic and auditory tests can still experience serious limitations in desired functioning. Our findings suggest that a capability approach may reveal aspects of what is being achieved through rehabilitation that might otherwise remain unnoticed, and that could help to further improve the well-being of our patients.

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

Raj, Lavanya J
Pitchai, Swarnakumari
2015

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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.

Developing the Content of a New Quality of Life Questionnaire for Children with Hearing Loss

RAJ, L J
SWARNAKUMARI, P
MARTINA, T
2014

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Habilitation and rehabilitation call for a paradigm shift from the traditional intervention programmes which focus on physical functioning to programmes that include aspects of physical, psychological and social wellbeing.

 

Purpose: To develop a quality of life instrument, using focus group discussions to assess the outcomes of interventions for school-going children with hearing loss.

 

Methods: Separate focus group discussions were held with children with hearing loss between 8 and 18 years of age, special educators and mothers. Focus group discussions were conducted separately for boys and girls. Each focus group had 8–10 participants. In-depth interviews were conducted with the heads of institutions and rehabilitation professionals. Fathers had to complete self-administered questionnaires. The focus group discussions were guided by topics and probes drawn from literature reviews, and were audio recorded, transcribed and analysed.

 

Results: Around 421 problem statements were classified under 7 themes: Educational implications; Social integration; Psycho-social wellbeing; Family relationships; Speech, language and communication; Leisure and recreation; and General functioning. Education and career aspirations were considered to be most important. The problem statements revealed that the primary focus of training was on improving academics. Integration and feeling comfortable with social situations were cited as limitations; as also, the preference for friendship with people of similar abilities. For the majority of children, leisure and recreation was limited to watching television. Parents and siblings were considered vital to their progress and achievements.

 

Conclusions: Multidimensional and varied perspectives of different stakeholders, especially family members, are necessary for a comprehensive analysis of the impact of hearing loss on the quality of life of school-going children.

 

Position paper on deaf education in Rwanda

RWANDA NATIONAL UNION OF THE DEAF (RNUD)
January 2013

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As part of the Rwanda National Union of the Deaf (RNUD)'s advocacy strategy to improve the quality of life for Deaf communities in Rwanda, this position paper provides detailed information and concrete solutions and ideas for the way forward

"Out of the shadows" : a qualitative study of parents’ and professionals’ attitudes and beliefs about children with communication disability in Uganda and how best to help them

MCGEOWN, Julia
September 2012

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"Communication forms the basis of human life and the complex ways with which humans can communicate and interact with each other sets us apart from all other species. However, not all humans are able to communicate effectively due to a range of communication impairments. The overall aim of this study is to generate solutions and recommendations to remove any barriers preventing these children from communicating effectively and potentially to improve their quality of life"
Dissertation submitted in part fulfilment of the requirements for a Masters degree at the Centre for International Health and Development (CIHD) at University College London (UCL) Institute of Child Health (ICH)
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