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Parental stress and support of parents of children with spina bifida in Uganda

BANNINK, Femke
IDRO, Richard
VAN HOVE, Geert
2016

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Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda.

 

Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them.

 

Methods: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels.

 

Results: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**).

 

Conclusion: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed.

Use of consumer wireless devices by South Africans with severe communication disability

BORNMAN, Juan
BRYEN, Diane Nelson
MOOLMAN, Enid
MORRIS, John
2016

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Background: Advancements in wireless technology (e.g. cell phones and tablets) have opened new communication opportunities and environments for individuals with severe communication disabilities. The advancement of these technologies poses challenges to ensuring that these individuals enjoy equal access to this increasingly essential technology. However, a paucity of research exists.

 

Objectives: To describe the nature and frequency with which South African adults with severe communication disabilities have access to and use wireless devices, as well as the types of activities for which wireless devices are used.

 

Method: Survey research was conducted with 30 individuals who use augmentative and alternative communication (AAC) technology using the Survey of User Needs Questionnaire developed in the United States, and localized to the South African context.

 

Results: All participants, despite their limited education, unemployment and low economic status, owned and/or used mainstream wireless devices. Slightly more than half of the participants (53.3%) needed adaptations to their wireless devices. Advantages of using wireless devices were highlighted, including connecting with others (through using text messaging, social networking, making plans with others, sharing photos and videos with friends), for leisure activities (e.g. listening to music, watching videos, playing games), and for safety purposes (e.g. to navigate when lost, using the device when in trouble and needing immediate assistance).

 

Conclusion: These wireless devices offer substantial benefits and opportunities to individuals with disabilities who rely on AAC in terms of independence, social participation, education and safety/security. However, they still do not enjoy equal opportunity to access and use wireless devices relative to the non-disabled population.

Preparation of students with disabilities to graduate into professions in the South African context of higher learning: Obstacles and opportunities

NDLOVU, Sibonokuhle
WALTON, Elizabeth
2016

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Background: Persons with disabilities continue to be excluded from professions in South Africa despite legislation on non-discrimination and equity. Objectives: We sought to identify both the opportunities and obstacles that students with disabilities face in professional degrees.

 

Method: Selected texts from the South African and international literature were analysed and synthesised.

 

Results: Students with disabilities are afforded opportunities to graduate into professions through the current climate of transformation, inclusion and disability policies, various support structures and funding. These opportunities are mitigated by obstacles at both the higher education site and at the workplace. At university, they may experience difficulties in accessing the curriculum, disability units may be limited in the support they can offer, policies may not be implemented, funding is found to be inadequate and the built environment may be inaccessible. Fieldwork poses additional obstacles in terms of public transport which is not accessible to students with disabilities; a lack of higher education support extended to the field sites, and buildings not designed for access by people with disabilities. At both sites, students are impacted by negative attitudes and continued assumptions that disability results from individual deficit, rather than exclusionary practices and pressures.

 

Conclusion: It is in the uniqueness of professional preparation, with its high demands of both theory and practice that poses particular obstacles for students with disabilities. We argue for the development of self-advocacy for students with disabilities, ongoing institutional and societal transformation and further research into the experiences of students with disabilities studying for professional degrees.

Experiences of patients and service providers with out-patient rehabilitation services in a rehabilitation centre in the Western Cape Province

KUMURENZI, Anne
GOLIATH, Charlyn
MJI, Gubela
MLENZANA, Nondwe
JOSEPH, Conran
STATHUM, Sue
RHODA, Anthea
2015

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Background: Rehabilitation is important for persons with disabilities as it contributes to their sense of autonomy, self-worth and social participation, and improves their quality of life. Improving the quality of rehabilitation services requires the dialogue of patients’ perceptions with those of service providers, in order to recommend informed reform.

 

Objective: The objective was to explore the experiences of persons with physical disabilities and service providers, regarding the multi-disciplinary rehabilitation services provided at a community-based out-patient rehabilitation centre.

 

Methods: A qualitative, exploratory study design was used to collect the data. A focus group was conducted with conveniently selected persons with physical disabilities. Three in-depth interviews were conducted with purposively selected key informants. All ethical considerations were adhered to during the implementation of the study.

 

Results: Patients and service providers had different experiences regarding accessibility to rehabilitation services, and similar experiences with patient education and intensity of rehabilitation. Although the patients experienced that the service providers had sufficient knowledge and skills to manage them, services providers expressed that they lacked certain skills.

 

Conclusions: The experiences expressed highlighted the need to improve rehabilitation services in terms of increasing the capacity of service providers and providing transport services for persons with disabilities.

Inclusive education: A transformation and human rights agenda under spotlight in South Africa

MAGUVHE, Mbulaheni
2015

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This study investigated the progress made in the implementation of inclusive education as a transformation and human rights tool since its inception in 2001. The study was conducted upon realising that most people underestimate the transformation and human rights value that inclusive education strives to maintain. The total number of participants interviewed was 84. Data was collected using semi-structured interview schedules for the teachers and community members, whereafter it was presented in thematic sections and qualitatively examined for meaning. The results showed that participants comprising teachers and community members do not know or understand the transformational and human rights value of inclusive education. The participants seemed to be equally aware of inclusive education, but they rated its success and value differently. The participants concurred that the philosophy of inclusive education was noble, but they differed regarding the extent to which it had transformed, added value or played an advocacy role in the lives of learners and the community at large over the years.

Is any wheelchair better than no wheelchair? A Zimbabwean perspective

VISAGIE, Surona
MLAMBO, Tecla
VAN DER VEEN, Judith
NHUNZVI, Clement
TIGERE, Deborah
SCHEFFLER, Elsje
2015

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Background: Within a rights-based paradigm, wheelchairs are essential in the promotion of user autonomy, dignity, freedom, inclusion and participation.

 

Objectives: This paper aimed to describe a group of Zimbabwean wheelchair users’ satisfaction with wheelchairs, wheelchair services and wheelchair function.

 

Method: A mixed method, descriptive study was done. Quantitative data was collected from 94 consecutively sampled wheelchair users, who accessed wheelchair services at 16 clinics in five Zimbabwean provinces between October 2013 and February 2014, using the Quebec User Evaluation of Satisfaction with Assistive Technology for adults and children and Functioning Every day with a Wheelchair questionnaire. Qualitative data were collected through two focus group discussions (22 participants) and two case studies with participants purposively sampled from those who participated in the quantitative phase.

 

Results: More than 60% of participants were dissatisfied with the following wheelchair features: durability (78.6%), weight (75.6%), ease of adjustment (69.1%), effectiveness (69.0%), safety (66.7%), reliability (66.7%), and meeting user needs (60.6%). Similarly, more than 66% of participants were dissatisfied with various services aspects: professional services (69.0%), follow-up (67.0%), and service delivery (68.3%). Although 60% of participants agreed that the wheelchair contributed to specific functions, more than 50% of participants indicated that the features of the wheelchair did not allow in- (53.2%) and outdoor (52.7%) mobility.

 

Conclusion: Findings indicate high levels of dissatisfaction with wheelchair features and services, as well as mobility. It is recommended that policy and minimum service standards which incorporate evidence and good practice guidelines for wheelchair services and management of wheelchair donations are developed for Zimbabwe.

Environmental factors influencing participation of stroke survivors in a Western Cape setting

CAWOOD, Judy
VISAGIE, Surona
2015

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Background: Environmental factors compound or diminish the effects of impairments; therefore they have a direct influence on participation of stroke survivors.

 

Objectives: To determine environmental barriers and facilitators to participation experienced by a group of stroke survivors in the Western Cape province of South Africa.

 

Methods: A descriptive, mixed methods study was conducted in 2011. Quantitative data was collected with the International Classification for Functioning, Disability and Health core set for stroke (environmental factors), from 53 stroke survivors, sampled through proportional, stratified, random sampling. Data is presented through graphs and tables. Qualitative data was collected from five purposively sampled participants and thematically analysed.

 

Results: Under products and technology, participants regarded assets, food, products and technology for daily living, transportation, mobility and communication, and access to buildings as barriers. The physical geography and attitudes of friends and society created further barriers. With regard to services, systems and policies - housing, communication, transport and social services created barriers. Health services, as well as support from health care service providers and family were considered facilitators.

 

Conclusion: A lack of assets compounded barriers with regard to food, products for daily use, communication and transport. Barriers to participation were exacerbated by a lack of services, systems and implementation of policies focused on the inclusion of people with disabilities, as well as minimal access to assistive devices. Recommendations include provision of assistive devices, structural changes to houses, yards, roads and buildings, lobbying for accessible, affordable public transport, access audits of public buildings, and inclusion of non-governmental organisations and home-based care services in a seamless network of care.

 

Sharing in the life of the person with disability: A Ghanaian perspective

OWUSU-ANSAH, Frances E
2015

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This thought article was a hermeneutic inquiry into the experiences of informal caregivers of the elderly who are also physically disabled. The experiences of some Ghanaian informal caregivers were examined in three clinical cases and laced with the lived experiences of the author as an informal caregiver and clinician. Two processes were explored. The first relates to how a caregiver is changed through the experience of caregiving by examining the intrapersonal and interpersonal dynamics affecting caregiving. Secondly, the positive ‘shifts’ that occurred in therapy were explored. In the present Ghanaian society it appears that care for the elderly disabled is compounded by the rapid migration of many Ghanaians to ‘greener pastures’ in search of a brighter future, with consequent empty homesteads and fragmentation of the socio-cultural practices that hitherto buttressed informal care for the aged. In the absence of well-established professional care facilities, informal caregiving with its numerous challenges has become the norm for many. This article posited that caregiver self-care is the most important, and yet often forgotten, aspect of informal caregiving. When this is neglected, caregiver burnout is sure to occur, which results in poor physical, mental and emotional health for the caregiver. In this state caregivers may injure both themselves and the care recipients.

Initial experiences of family caregivers of survivors of a traumatic brain injury

BROODRYK, Mandi
PRETORIUS, Chrisma
2015

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Background: There seems to be a paucity of research on the initial subjective experiences of family caregivers of survivors of a traumatic brain injury (TBI).

 

Objective: To explore the challenges that family caregivers face during the initial stages of recovery of a relative who has sustained a TBI.

 

Methods: Thematic analysis was used to explore the findings from semi-structured interviews that were conducted with 12 female family caregivers of relatives who had sustained a TBI.

 

Results: Family caregivers recalled their initial experiences of the shock at hearing the news about their relative’s TBI, negative experiences in hospital and frustrating interactions with healthcare professionals as particularly challenging. 

 

Conclusion: The findings of this study emphasise caregivers’ need for support, information and psycho-education, especially from healthcare professionals, from the very beginning stages of recovery from a TBI. Practical and physical needs with regard to admission to and care in the hospital were also highlighted. This research will hopefully contribute to creating awareness amongst healthcare professionals on how they can contribute to improvement of the services provided by the healthcare system based on the experiences of the caregivers who participated in this study.

 

Caring for a child with Cerebral Palsy: The experience of Zimbabwean mothers

DAMBI, Jermaine M
JELSMA, Jennifer
MLAMBO, Tecla
2015

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Background: The needs of caregivers of children with disability may not be recognized despite evidence to suggest that they experience increased strain because of their care-giving role. This strain may be exacerbated if they live in under-resourced areas.

 

Objectives: We set out to establish the well-being of caregivers of children with Cerebral Palsy (CP) living in high-density areas of Harare, Zimbabwe. In addition, we wished to identify factors that might be predictive of caregivers’ well-being. Finally, we examined the psychometric properties of the Caregiver Strain Index (CSI) within the context of the study.

 

Method: Caregivers of 46 children with CP were assessed twice, at baseline, and after three months, for perceived burden of care and health-related quality of life (HRQoL) using CSI and EQ-5D respectively. The psychometric properties of the CSI were assessed post hoc.

 

Results: The caregivers reported considerable caregiver burden with half of the caregivers reporting CSI scores in the ‘clinical distress’ range. Many of the caregivers experienced some form of pain, depression and expressed that they were overwhelmed by the care-giving role. No variable was found to be associated with clinical distress. The CSI demonstrated good overall internal consistency (Cronbach’s Alpha = 0.8), stability over time (Z = 0.87, p = 0.381) and was significantly and negatively correlated with the EQ-5D VAS (Spearman’s rho = −0.33, p = 0.027), demonstrating concurrent validity.

 

Conclusion: Caregivers must be monitored routinely for their level of distress and there is an urgent need to provide them with support. The CSI is likely to be a valid measure of distress in this population.

Cognitive rehabilitation groups: A thematic analysis of feasibility and perceived benefits for clients with moderate to severe traumatic brain injury living in the Western Cape

WILSON, Abigail
WILLS, Peta
PRETORIUS, Chrisma
SWARTZ, Leslie
2015

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Background: Traumatic brain injury (TBI) has a significant impact on the burden of care within the South African setting, impacting on the individual, the family, and the community as a whole. Often the consequences of TBI are permanent, resulting in numerous financial and emotional stressors.

 

Objective: This research focusses on the experience of outpatient cognitive rehabilitation groups for individuals who have suffered moderate to severe brain injuries within the South African setting.

 

Method: Participants with moderate to severe brain injury were required to attend five cognitive rehabilitation groups and engage in a semistructured interview. Qualitative data were examined via thematic analysis, to determine participants’ subjective experiences of group participation.

 

Results: There is a need within the South African setting for cognitive rehabilitation and support groups for individuals who have experienced a TBI. The benefits were notable for both the individuals attending and their support systems. In spite of the benefits there were notable limitations to attendance, including financial restrictions and transport limitations.

 

Conclusion: According to participants and their families, there is a scarcity of resources within the Western Cape for clients who have sustained a TBI. Despite limitations in capacity to attend there appears to be a need for structured outpatient cognitive rehabilitation programmes integrating the complex cognitive and emotional challenges faced by individuals with TBI and their families.

Perspectives in musculoskeletal injury management by traditional bone setters in Ashanti, Ghana

EDUSEI, Anthony K
OWUSU-ANSAH, Frances E
DOGBE, Joslin A
MORGAN, Julia
SARPONG, Kofi
2015

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Background: The popularity of the services of traditional bone setters (TBS) in Ghana as an alternative health care requires exploration and documentation of the perspectives of providers and users. 

 

Objective: To explore and document the perspectives of providers and users of the services of TBS in the management of musculoskeletal injuries in the Ashanti region, Ghana.

 

Methods: From the social constructivist and qualitative approach, in-depth interviews were used to explore the perspectives of eight TBS and 16 users of their services, selected purposively through snowballing. Thematic content analysis (TCA) was employed.

 

Results: High recovery rate, warm reception, prompt attention, and the relatively lower charges, are reported to motivate the patronage of the services of TBS for the management of fractures in the legs, arms, ribs, joint bones dislocations, waist and spinal cord problems. The TBS combined traditional and orthodox procedures, using plant and animal-based materials, beliefs, spirituality (God-given) and physical therapy in the management of musculoskeletal injuries. No adverse experience was reported by either the providers or users of the traditional management methods.

 

Conclusion: With plant and animal-based materials, TBS are observed to combine traditional and orthodox procedures to confidently manage musculoskeletal injuries to the satisfaction of their highly motivated patrons. Although over 60% of the TBS attribute the healing power behind their practice to God, the rest do not discount the role of spiritual therapy. Further studies expanded to include the perspectives of non-users of the services of the TBS will authenticate the findings of this study.

Enabling disability inclusive practices within the University of Cape Town curriculum: A case study

OHAJUNWA, Chioma
MCKENZIE, Judith
LORENZO, Theresa
2015

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Background: Disability inclusion in the curricula of higher education institutions contributes to socially responsive graduates with a capacity to address the cross-cutting issue of disability in development. This article discusses a study conducted at the University of Cape Town (UCT), South Africa, to explore disability inclusion.

 

Methodology: An instrumental case study approach was adopted and a thematic analysis of data was done.

 

Findings: Academic staff found a variety of ways to include disability, such as discussions in class, practice and service learning, but mainly as part of disciplinary requirements. Including disability as an issue of social justice stems mostly from the personal interest of staff, and is done in an ad hoc manner.

 

Conclusion: Disability should be valued, and integrated into the curriculum in a structured manner as a perspective on diversity with which to interrogate our beliefs about ourselves and society. Theorising on disability is needed, as well as the unique perspectives that emerge across interdisciplinary boundaries, especially within the African context.

Disability, gender, and employment relationships in Africa: The case of Ghana

NAAMI, Augustina
2015

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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

BOOYENS, Margaret
VAN PLETZEN, Ermien
LORENZO, Theresa
2015

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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

NAIDOO, Kovin S
JAGGERNATH, Jyoti
RAMSON, Prasidh
CHINANAYI, Farai
ZHUWAU, Tom
ØVERLAND, Lene
2015

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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.

Exploring the impact of wheelchair design on user function in a rural South African setting

VISAGIE, Surona
DUFFIELD, Svenje
UNGER, Mariaan
2015

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Background: Wheelchairs provide mobility that can enhance function and community integration. Function in a wheelchair is influenced by wheelchair design.

 

Objectives: To explore the impact of wheelchair design on user function and the variables that guided wheelchair prescription in the study setting.

 

Method: A mixed-method, descriptive design using convenience sampling was implemented. Quantitative data were collected from 30 wheelchair users using the functioning every day with a Wheelchair Scale and a Wheelchair Specification Checklist. Qualitative data were collected from ten therapists who prescribed wheelchairs to these users, through interviews. The Kruskal-Wallis test was used to identify relationships, and content analysis was undertaken to identify emerging themes in qualitative data.

 

Results: Wheelchairs with urban designs were issued to 25 (83%) participants. Wheelchair size, fit, support and functional features created challenges concerning transport, operating the wheelchair, performing personal tasks, and indoor and outdoor mobility. Users using wheelchairs designed for use in semi-rural environments achieved significantly better scores regarding the appropriateness of the prescribed wheelchair than those using wheelchairs designed for urban use (p = <0.01). Therapists prescribed the basic, four-wheel folding frame design most often because of a lack of funding, lack of assessment, lack of skills and user choice.

 

Conclusion: Issuing urban type wheelchairs to users living in rural settings might have a negative effect on users’ functional outcomes. Comprehensive assessments, further training and research, on long term cost and quality of life implications, regarding provision of a suitable wheelchair versus a cheaper less suitable option is recommended.

Research Protocol: Development, implementation and evaluation of a cognitive behavioural therapy-based intervention programme for the management of anxiety symptoms in South African children with visual impairments

VISAGIE, Lisa
LOXTON, Helene
SILVERMAN, Wendy K
2015

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Background: Childhood anxiety presents a serious mental health problem, and it is one of the most common forms of psychological distress reported by youth worldwide. The prevalence of anxiety symptoms amongst South African youth is reported to be significantly higher than in other parts of the world. These high prevalence rates become even more significant when viewed in terms of children with visual impairments, as it is suggested that children with physical disabilities may be more prone, than their non-disabled peers, for the development of psychological difficulties. 

 

Objectives: The main aim of this study is to develop, implement and evaluate a specifically tailored anxiety intervention programme for use with South African children with visual impairments.

 

Method: A specifically tailored cognitive-behavioural therapy-based anxiety intervention, for 9–13 year old South African children with visual impairments, will be evaluated in two special schools. The study will employ a randomised wait-list control group design with pre- postand follow-up intervention measures, with two groups each receiving a 10 session anxiety intervention programme. The main outcome measure relates to the participants’ symptoms of anxiety as indicated on the Revised Child Anxiety and Depression Scale.

 

Conclusion: If the anxiety intervention programme is found to be effective in reducing symptoms of anxiety, this universal intervention will lay down the foundation upon which future contextually sensitive (South African) anxiety intervention programmes can be built.

 

Being black in a white skin: Beliefs and stereotypes around albinism at a South African university

PHATOLI, Relebohile
BILA, Nontembeko
ROSS, Eleanor
2015

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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

MUGEERE, Anthony B
ATEKYEREZA, Peter
KIRUMIRA, Edward K
HOJER, Staffan
2015

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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.

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