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Commuting and communication: An investigation of taxi drivers’ experiences, attitudes and beliefs about passengers with communication disorders

GREEN, Sianne
MOPHOSHO, Munyane
KHOZA-SHANGASE, Katijah
2015

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Background: One of the most popular means of public transport within South Africa is mini-bus taxis.

 

Objectives: As South Africa is made up of diverse cultures, religions and beliefs, the aim of this study was to explore Johannesburg based taxi drivers’ experiences of beliefs about, and attitudes towards passengers who have a communication disability.

 

Method: Semi-structured interviews were conducted with 10 mini-bus taxi drivers.

 

Results: Interviews revealed that almost all the taxi drivers had encountered passengers with a communication disability, and had an awareness of passengers with a hearing disability as opposed to a speech disability. Furthermore mini-bus taxi drivers generally held a positive view of their passengers with a communication disability.

 

Conclusion: Study findings contribute to existing literature within the fields of speech pathology and audiology, advocacy groups and policy makers, particularly research studies on participation experiences of persons with communication disabilities related to transportation access. The results of the study should also provide a foundation for disability policy development initiatives with the aim of increasing levels of public awareness.

Perceptions of psychosocial disability amongst psychiatric service users and caregivers in South Africa

BROOKE-SUMNER, Carrie
LUND, Crick
PETERSEN, Inge
2014

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Background: In many parts of South Africa there is little support for people with psychosocial disability caused by schizophrenia, beyond provision of psychotropic medications. Appropriate community-based psychosocial rehabilitation interventions are a crucial element of mental health service development.

 

Objectives: This study aimed to use an explanatory model of illness framework to document experiences of illness, disability and recovery amongst service users with schizophrenia and their caregivers in a poorly resourced area in the North West Province. Data were used to provide recommendations for a contextually appropriate non-specialist facilitated group psychosocial rehabilitation intervention.

 

Method: Eighteen in-depth individual interviews were conducted: nine with schizophrenia service users and nine with caregivers. Interviews were conducted by two trained field researchers; both clinical psychologists fluent in the first language of participants. All interviews were recorded, translated and transcribed. Data were thematically analysed using NVivo 9.

 

Results: Participants linked the illness to witchcraft, poverty and stress. Family conflict was recognised in the course of the illness, causing stress and challenges for emotional well-being. Knowledge of diagnosis and biomedical treatment was minimal. Key factors recognised by service users as promoting recovery were the ability to work, and the support of traditional healers and religious structures.

 

Conclusion: Based on the findings of this study, a group psychosocial rehabilitation intervention emerged as a recommendation, with the incorporation of psycho-education, adherence support, coping skills, and opportunities for income generation and productive activity. The importance of also enlisting the support of religious leaders and traditional healers in supporting recovery is emphasised.

Success in the workplace: From the voice of (dis)abled to the voice of enabled

MARSAY, Gloria
2014

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The intention of this article is twofold; first to encourage a shift in seeing ‘the disabled’not as people with disabilities but rather as people with unique abilities. Secondly, toexplore ways of facilitating gainful employment for these uniquely abled people. The termdisability is examined against a backdrop of definitions including the definition postulatedby the International Classification of Functioning. In this article, the life experiences of apurposive sample of people with (dis)abilities who have been successful in the world ofwork are explored. A narrative approach gives voice to their experiences. Quotes from theparticipants’ responses are used to illustrate the common themes that emerged relating totheir experiences. These themes are resonated against a backdrop of relevant literature. Ifdisabled people are enabled to recognize and use their unique abilities, as well as developvarious self-determination skills, imagine the endless possibilities which could arise for themand society in general.

Accessibility for persons with mobility impairments within an informal trading site: A case study on the markets of Warwick, South Africa

NAIDOO, Pragashnie
KOCH, Helga E
ANDERSON, Jassmine
GHELA, Prashika
GOVENDER, Perusha
HOOSEN, Nausheena
KHAN, Halima
2014

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Background: There are a number of informal trading sites across cities in sub-Saharan Africa,of which the markets of Warwick is one example. Since the informal economy is an important contributor to a city’s economy as well as a source of employment, it is important for these sites to be accessible for all persons. Whilst the South African government has put structures in place to identify and remove environmental barriers in order to meet the individual needs of persons with mobility impairments and improve their quality of life, persons with mobility impairments still face barriers and restricting environments that prevent them from participating in society and its social and economic activities.

 

Objectives: This case study aimed at exploring accessibility within the markets of Warwick for persons with mobility impairments by an ergonomic assessment, augmented by voices of participants within the market.

 

Method: A qualitative, instrumental, single case study design was utilised with purposive sampling of the markets of Warwick as the study setting. Multiple sources of data were gathered, such as semi-structured interviews, direct observations of an environmental survey supported by photographs, and the authors’ review of relevant documents. Transcriptions were analysed using NVivo 10 software programme with inductive coding.

 

Results: Whilst policies have been in place since 1996 to adjust infrastructure, the markets of Warwick still remain inaccessible to persons with mobility impairments and do not meet the standardised infrastructural design.

 

Conclusion: The findings of this study may offer a significant understanding of the complexity of accessibility within an informal trading site and create an awareness of the limitations this has for persons with mobility impairments. Additionally, these findings may assist in effecting a positive change in terms of the infrastructure of the Markets and in continuous advocating for the rights of persons with all 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.

The impact of an online Facebook support group for people with multiple sclerosis on non-active users

STEADMAN, Jacqui
PRETORIUS, Chrisma
2014

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Background: Multiple sclerosis (MS) is a debilitating disease and there is little research on support networks for people with MS (PwMS). More specifically, most studies on online support groups focus on those who actively participate in the group, whereas the majority of those who utilise online support groups do so in a passive way.

 

Objectives: This study therefore aimed to explore the experiences of non-active users of an online Facebook support group for PwMS. Emphasis was placed on the facilitators and the barriers that were associated with membership to this group.

 

Method: An exploratory qualitative research design was implemented, whereby thematic analysis was utilised to examine the ten semi-structured interviews that were conducted.

 

Results: Several facilitators were acquired through the online support group; namely emotional support (constant source of support, exposure to negative aspects of the disease),informational support (group as a source of knowledge, quality of information) and social companionship (place of belonging). Some barriers were also identified; namely emotional support (emotions lost online, response to messages, exposure to negative aspects of the disease), informational support (information posted on the group, misuse of group) and social companionship (non-active status).

 

Conclusion: These findings demonstrate that the non-active members of the online support group for PwMS have valid reasons for their non-active membership status. More important,the findings suggest that the online Facebook support group provided the group members with an important support network in the form of emotional support, informational support and social companionship, despite their non-active membership status or the barriers that have been identified.

Freedom to read: A personal account of the ‘book famine’

WATERMEYE, Brian
2014

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Even in the digital age, access to literature and other information for people with print impairments remains extremely poor, especially in the developing world. Reading access holds cascading implications for education, economic empowerment, social participation and self-worth. In June 2013 member states of WIPO (the World Intellectual Property Organization)concluded a landmark treaty to reduce copyright impediments to the dissemination of literature to print impaired people. Its effectiveness is not yet clear. Meanwhile, critics hold that disability studies’ analyses have too often lacked insight into the personal and psychological ramifications of exclusion. This article provides an account of the ‘book famine’ from the perspective of a print impaired South African disability researcher, arguing that thorough investigation of the impressions of exclusion is necessary for change. The account highlights the personal, even malignant psychological reverberations of deprivations such as the ‘bookfamine’, which may carry traumatic effects which cement the status quo.

A qualitative study: Barriers and support for participation for children with disabilities

MARIE, Anne
HANSEN, Witchger
SIAME, Musonde
VAN DER VEEN, Judith
2014

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Background: This qualitative–exploratory study examined the barriers to participation amongst children with disabilities in Lusaka, Zambia, from the mothers’ perspective.

 

Objectives: The objectives of this study were to understand how mothers of children with physical and cognitive disabilities who engaged their children in community-based rehabilitation (CBR) services in Lusaka, Zambia, perceived and described (1) the level of support they received and the barriers they encountered in terms of their child’s meaningful social participation; (2) the use and awareness of these barriers to identify and pursue advocacy strategies; and (3) hopes for their child’s future.

 

Methods: Data were collected through semi-structured interviews with each mother in her home.Results: Findings revealed both support and barriers to the child’s social participation in relationship to their family, friends and community. Support also came from the CBR programme and mothers’ personal resourcefulness. Mothers identified their child’s school,their immediate environment and financial burdens as barriers to participation as well as their own personal insecurities and fears. Strategies to overcome barriers included internal and external actions. The mothers involved in the study hope their child’s abilities will improve with continued CBR services. Some mothers described a bleak future for their child due to alack of acceptance and access to education.

 

Conclusion: The findings of this study suggest the significant role the mother of a child with a disability plays in her child’s social participation. Recommendations include enhancing CBR programming for families, especially for mothers, and advocating on behalf of children with disabilities and their families to attract the attention of policy makers.

Learning from doing the EquitAble project: Content, context, process, and impact of a multi-country research project on vulnerable populations in Africa

MACLACHLAN, Mac
AMIN, Mutamad
MJI, Gubela
MANNAN, Hasheem
MCVEIGH, Joanne
MCAULIFFE, Eilish
AMADHILA, Elina
MUNTHALI, Alister
EIDE, Arne H
DUBE, A Kudakwashe
2014

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Background: The ‘EquitAble’ project carried out content analyses of policies and collected and analysed qualitative and quantitative data concerning access to health services in Sudan, Malawi, Namibia and South Africa. Our particular concern was to address the situation of people with disabilities, although not in isolation from other marginalised or vulnerable groups.

 

Objectives: This article reports on the content, context, process and impact of project EquitAble, funded by the European Commission Seventh Research Framework Programme, which brought together researchers from Ireland, Norway, South Africa, Namibia, Sudan and Malawi.

 

Method: After the 4-year project ended in February 2013, all members of the consortium were asked to anonymously complete a bespoke questionnaire designed by the coordinating team. The purpose of the questionnaire was to capture the views of those who collaborated on the research project in relation to issues of content, context, process and impact of the EquitAble project.

 

Results: Our results indicated some of the successes and challenges encountered by our consortium.

 

Conclusion: We identified contextual and process learning points, factors often not discussed in papers, which typically focus on the reporting of the ‘content’ of results.

Five challenges for disability-related research in sub-Saharan Africa

SWARTZ, Leslie
2014

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Disability research in contemporary sub-Saharan Africa is developing rapidly, and this is something to be celebrated. This article reviews some contemporary developments and suggests that there are five central, and interrelated, challenges for the field. These challenges – experience, expertise, enumeration, evidence, and expectations – go to the heart of thinking about disability research in sub-Saharan Africa. An optimistic but appropriately critical approach to addressing these issues is suggested.
 

Surviving spinal cord injury in low income countries

ØDERUD, Tone
2014

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Background: Mortality rates from injuries are higher for people from poorer economic backgrounds than those with higher incomes (according to the World Health Organization [WHO]), and health care professionals and organisations dealing with people with disabilities experience that individuals with spinal cord injury (SCI) in low income countries face serious challenges in their daily lives.

 

Objectives: The aims of this study were to explore life expectancy (life expectancy is the average remaining years of life of an individual) and the situation of persons living with SCI in low income settings.

 

Method: Literature studies and qualitative methods were used. Qualitative data was collected through semi-structured interviews with 23 informants from four study sites in Zimbabwe representing persons with SCI, their relatives and rehabilitation professionals.

 

Results: There are few publications available about life expectancy and the daily life of persons with SCI in low income countries. Those few publications identified and the study findings confirm that individuals with SCI are experiencing a high occurrence of pressure sores and urinary tract infections leading to unnecessary suffering, often causing premature death. Pain and depression are frequently reported and stigma and negative attitudes are experienced in society. Lack of appropriate wheelchairs and services, limited knowledge about SCI amongst health care staff, limited access to health care and rehabilitation services, loss of employment and lack of financial resources worsen the daily challenges.

 

Conclusion: The study indicates that life expectancy for individuals with SCI in low income settings is shorter than for the average population and also with respect to individuals with SCI in high income countries. Poverty worsened the situation for individuals with SCI, creating barriers that increase the risk of contracting harmful pressure sores and infections leading to premature death. Further explorations on mortality and how individuals with SCI and their families in low income settings are coping in their daily life are required to provide comprehensive evidences.

Development process in Africa: Poverty, politics and indigenous knowledge

EIDE, Arne H
KHUPE, Watson
MANNAN, Hasheem
2014

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Background: Persons with disability run the danger of not profiting from the development process due to exclusion from basic services and opportunities. Still, the knowledge base on exclusion mechanisms is relatively weak and there is a danger that important aspects are not addressed as they are hidden behind established understandings that are not critically scrutinised.

 

Objectives: The main purpose of this article was to highlight critical thoughts on prevailing knowledge of the relationship between disability and poverty, the policy base for addressing the rights of persons with disability, and culture as a key component in continued discrimination.

 

Method: This article aimed at integrating three papers on the above topics presented at the 2011 African Network for Evidence-to-Action on Disability (AfriNEAD) Symposium. The researchers have therefore thoroughly examined and questioned the relationship between disability and poverty, the influence of policy on action, and the role of culture in reproducing injustice.

 

Results: The article firstly claims that there are limitations in current data collection practice with regards to analysing the relationship between poverty and disability. Secondly, ambitions regarding inclusion of persons with disability in policy processes as well as in implementation of policies are not necessarily implemented in an optimal way. Thirdly, negative aspects of culture in discrimination and bad treatment of disabled need to be highlighted to balance the discussion on disability and culture.

 

Conclusion: A critical view of prevailing understandings of disability and development is key to producing the knowledge necessary to eradicate poverty amongst persons with disability and other vulnerable groups. Not only do we need research that is actually designed to reveal the mechanisms behind the disability–poverty relationship, we need research that is less tied up with broad political agreements that is not necessarily reflecting the realities at ground level.

With or without us? An audit of disability research in the southern African region

MCKENZIE, Judith
MJI, Gubela
GCAZA, Siphokazi
2014

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Background: Disability research in the global South has not received significant critical consideration as to how it can be used to challenge the oppression and marginalisation of people with disabilities in low-income and middle-income countries. The Southern Africa Federation of the Disabled (SAFOD) embarked on a programme to use research to influence policy and practice relating to people with disabilities in Southern Africa, and commissioned an audit on research expertise in the region. In this article, a research audit is reported on and situated in a framework of mancipatory research.

 

Objectives: This article sets out to describe a preliminary audit of disability research in the southern African region and to draw conclusions about the current state of disability research in the region and make recommendations.

 

Method: The research method entailed working with disability researchers in the ten SAFOD member countries and utilising African disability networks hosted on electronic media. Disability researchers working in the region completed 87 questionnaires, which were reviewed through a thematic analysis.

 

Results: The discussion of results provides a consideration of definitions of disability; the understanding of disability rights, research topics and methodologies; the participation of people with disabilities in research; and the challenges and opportunities for using research to inform disability activism.

 

Conclusion: The conclusion highlights critical issues for future research in the region, and considers how a disability researcher database can be used as a tool for disability organisations to prioritise research that serves a disability rights agenda.

 

Increasing access into higher education: Insights from the 2011 African Network on Evidence-to-Action on Disability Symposium – Education Commission

LYNER-CLEOPHAS, Marcia
SWART, Estelle
CHATAIKA, Tsitsi
BELL, Diane
2014

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This article provides some insights into the challenges regarding inclusion in higher education of students with disabilities. It does this by elucidating aspects of the proceedings of the Education Commission at the African Network on Evidence-to-Action on Disability (AfriNEAD) Symposium, which took place in Zimbabwe in November 2011. The presentations specifically focused on the education of people with disabilities from early childhood through to higher education. This article, however, is informed by presentations focusing on increasing access to higher education. The article is focused on the implementation of evidence in practice, research and policies stemming from rigorous debate and scientific foundations, whilst taking into account the dynamic realities of the higher education context. Themes such as the systemic approach needed for inclusion to be successful, increasing access and the dynamic role of students with disabilities are highlighted.

Disability and masculinity in South African autosomatography

LIPENGA, Ken J
2014

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This article examines the representation of disability by disabled black South African men as portrayed in two texts from the autosomatography genre, which encompasses first-person narratives of illness and disability. Drawing on extracts from Musa E. Zulu’s The language of me and William Zulu’s Spring will come, the article argues that physical disability affects heteronormative concepts of masculinity by altering the body, which is the primary referent for the construction and performance of hegemonic masculinity. In ableist contexts, the male disabled body may be accorded labels of asexuality. This article therefore reveals how male characters with disabilities reconstruct the male self by both reintegrating themselves within the dominant grid of masculinity and reformulating some of the tenets of hegemonic masculinity.

Policy implementation in wheelchair service delivery in a rural South African setting

VISAGIE, Surona
SCHEFFLER, Elsje
SCHNEIDER, Marguerite
2013

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Background: Wheelchairs allow users to realise basic human rights and improved quality of life. South African and international documents guide rehabilitation service delivery and thus the provision of wheelchairs. Evidence indicates that rehabilitation policy implementation gaps exist in rural South Africa.

 

Objectives: The aim of this article was to explore the extent to which wheelchair service delivery in a rural, remote area of South Africa was aligned with the South African National Guidelines on Provision of Assistive Devices, The United Nations Convention on the Rights of Persons with Disabilities and The World Health Organization Guidelines on Provision of Wheelchairs in Less-Resourced Settings.

 

Method: Qualitative methods were used. Data were collected through semi-structured interviews with 22 participants who were identified through purposive sampling. Content analysis of data was preformed around the construct of wheelchair service delivery.

 

Results: Study findings identified gaps between the guiding documents and wheelchair service delivery. Areas where gaps were identified included service aspects such as referral, assessment, prescription, user and provider training, follow up, maintenance and repair as well as management aspects such as staff support, budget and monitoring. Positive findings related to individual assessments, enthusiastic and caring staff and the provision of wheelchairs at no cost.

 

Conclusion: The gaps in policy implementation can have a negative impact on users and the service provider. Inappropriate or no wheelchairs limit user function, participation and quality of life. In addition, an inappropriate wheelchair will have a shorter lifespan, requiring frequent repairs and replacements with cost implications for the service provider.

Sexual and reproductive health needs assessment with deaf people in Ghana: Methodological challenges and ethical concerns

MPRAH, Wisdom K
2013

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Background: Deafness is a complex and multifaceted phenomenon. The different ways of perceiving and understanding deafness have practical implications for research with deaf people. Whilst the deaf community is not homogenous, it is generally distinct from the hearing population. Consequently, the appropriateness of applying research methods and informed concern processes designed for the hearing population in research with deaf people has been questioned.

 

Objectives: This article reflected on some methodological challenges and ethical concerns arising from conducting a sexual and reproductive health needs assessment with deaf people in Ghana. The aim was to provide some perspectives on some of the challenges associated with doing research with deaf people.

 

Method: The study was a two phase, sequential, mixed methods design, consisting of three focus groups to assist in the development of a survey and then the implementation of the survey for needs assessment data collection. The number of participants in the study was 179, consisting of 26 focus group participants: 7 executives of the Ghana National Association of the Deaf (GNAD), 10 male adults, and 9 female adults. There were 152 survey respondents (students, women and men) and one key informant. All participants, except the key informant, were deaf people.

 

Results: The application of traditional research methods to studies involving deaf participants presents numerous methodological and ethical dilemmas associated mainly with deaf people’s unique cultural and linguistic characteristics.

 

Conclusion: Research methods should not be taken as universal guidelines for conducting research in all settings because of differences in settings.

 

Seeking care for epilepsy and its impacts on households in a rural district in southern Malawi

MUNTHALI, Alister
BRAATHEN, Stine H
GRUT, Lisbet
KAMALERI, Yusman
INGSTAD, Benedicte
2013

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Background: Epilepsy is a disability as defined in the 2012 Disability Act of the Government of Malawi.

 

Objectives: This article explores the health-seeking behaviour of people with epilepsy in a rural town in southern Malawi and how having a person with epilepsy impacts on the households’ productivity.

 

Method: A snowball approach was used to identify persons with various forms of disabilities. The article is based on a bigger study carried out in Malawi which explored how persons with disabilities seek health care. In this bigger study, a total of 63 interviews were done with persons with disabilities or their guardians. Eight of the 63 interviews were with persons with epilepsy and this article is based on these interviews.

 

Results: The study found that persons with epilepsy seek both traditional and modern medicines to treat the condition. Informants mentioned that barriers to accessing western treatment include lack of medicines, congestion at health facilities, lack of knowledge about epilepsy, misdiagnosis by health workers and the belief that epilepsy caused by witchcraft cannot be treated by western medicine. The study also highlights the wider impacts of epilepsy on the household such as the failure of children to attend school, children dropping out of school, stigma and discrimination and households being driven deeper into poverty as a result of seeking care for members with epilepsy.

 

Conclusion: The existing barriers to accessing treatment for epilepsy can be addressed by using a combination of public education, simple treatments and regular reviews. Ensuring constant availability of drugs for the treatment of epilepsy is key to effective treatment of the condition. This would contribute to closing the treatment gap for epilepsy as advocated by the Global Campaign against Epilepsy.
 

Knowledge and use of contraceptive methods amongst deaf people in Ghana

MPRAH, Wisdom K
2013

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Background: Persons with disabilities in general face serious barriers to sexual and reproductive health (SRH) information and services due to institutional and attitudinal barriers. However, because deaf people have unique communication and linguistic needs, which are often misunderstood or ignored, they face greater barriers than other persons with disabilities. Whilst available data indicated that there is a wide gap between knowledge and usage of contraceptive amongst Ghanaians, little is known about the level of contraceptive knowledge and usage amongst deaf people.

 

Objectives: The objective of the study was to investigate the level of knowledge and use of contraceptive methods amongst deaf people in Ghana with the aim of understanding their contraceptive behaviour and to improve access.

 

Method: The study was a participatory SRH needs assessment utilising a two-phase, sequential, mixed methods design. The study included 179 participants, consisting of focus groups with seven executives of Ghana National Association of the Deaf (GNAD), 10 male deaf adults, and 9 deaf female adults. A total of 152 deaf people, made up of students, women, and men participated in a survey, whilst one hearing person served as a key informant.

 

Results: The findings of the study indicated that of the 13 methods shown in the survey, only three were known to about 70% of the adults and 60% of the students. Level of knowledge of the remaining nine methods was low.

 

Conclusion: Clear and effective policies are needed to guide the provision of SRH information and services for deaf people in Ghana.

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