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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.
 

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.

Attitudes of health service providers: the perspective of Persons with Disabilities in the Kumasi Metropolis of Ghana

BADU, Eric
OPOKU, Maxwell P
APPIAH, Seth C Y
2016

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Introduction: Awareness of disability issues has gained considerable interest by advocacy groups in recent years. However, it is uncertain whether attitudes and perceptions of all service providers and society have adjusted accordingly towards the health care of people with disabilities. This study sought to examine the attitudes of health providers from the perspective of people with disabilities in the Kumasi Metropolis.


Methods: A cross-sectional study using semi-structured questionnaires was conducted with people with disabilities (with physical, hearing and visual impairments,) in the Kumasi Metropolis. The study used a multi-stage sampling involving cluster and simple random sampling to select 255 respondents split amongst the following five clusters of communities; Oforikrom, Subin, Asewase, Tafo and Asokwa. Data were analysed using STATA 14 and presented in descriptive and inferential statistics.


Results: The study found that 71% of the respondents faced some form of discrimination including the use of derogatory remarks, frustration and unavailable required services on the basis of their disability, the type of services they need and the location. Women were 3.89 times more likely to face discrimination; Adjusted odds ratio (AOR) = 3.89 (95% confidence interval [CI]; 1.41, 10.76), and visually impaired was more likely to be discriminated at the facility compared with physical disability; AOR = 5.05 (95% CI; 1.44, 17.65). However, respondents with some educational qualification and those who stayed with their family members were less likely to face discrimination; AOR = 0.08 (95% CI; 0.01, 0.39).


Conclusion: The study recommends the provision of in-service training for service providers to update their knowledge on disability issues and improve access to services for people with disabilities.
 

Perceived burden of care and reported coping strategies and needs for family caregivers of people with mental disorders in Zimbabwe

MARIMBE, Bazondlile D
COWAN, Frances
KAJAWU, Lazarus
MUCHIRAHONDO, Florence
LUND, Crick
2016

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Background: Mental health service resources are inadequate in low-income countries, and families are frequently expected to provide care for their relative with a mental disorder. However, research on the consequences of care giving has been limited in low-income countries, including Zimbabwe.


Objective: The study explored the perceived impact of mental illness, reported coping strategies and reported needs of family members of persons diagnosed with bipolar affective disorder or schizophrenia attending a psychiatric hospital in Harare, Zimbabwe.


Methods: A purposive sample of 31 family members participated in in-depth interviews and focus group discussions using standardized study guides. Participants were also screened for Common Mental Disorders (CMD) using the 14-item Shona Symptom questionnaire (SSQ). Qualitative data were analyzed thematically. Statistical Package for Social Sciences (SPSS version 16) was used for quantitative data analysis.


Results: Caregivers experienced physical, psychological, emotional, social and financial burden associated with care giving. They used both emotion-focused and problem-focused coping strategies depending on the ill family members’ behaviours. Seeking spiritual assistance emerged as their most common way of coping. Twenty one (68%) of the caregivers were at risk of CMD and were referred to a psychiatrist for further management. Caregivers required support from health care professionals to help them cope better.


Conclusion: Caregivers carry a substantial and frequently unrecognized burden of caring for a family member with mental disorder. Better support is needed from health professionals and social services to help them cope better. Further research is required to quantitatively measure caregiver burden and evaluate potential interventions in Zimbabwe.
 

Early detection of communication delays with the PEDS tools in at-risk South African infants

LINDE, Jeannie van der
SWANEPOEL, De Wet
HANEKOM, Linique
LEMMER, Tasha
SCHOEMAN, Karla
GLASCOE, Frances P
VINCK Bart
2016

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Background: Prevalence of communication delays or disorders is increasing, possibly because of various environmental risk factors. Selection and implementation of effective screening tools are important to detect at-risk infants as early as possible. This study aimed to evaluate the accuracy of the Parents’ Evaluation of Developmental Status (PEDS), PEDS-Developmental Milestones and PEDS tools to detect communication delays in infants (6–12 months) in a South African primary healthcare context.

 

Method: A comparative study design evaluated the accuracy of the PEDS tools to detect communication delays, using an internationally accepted diagnostic assessment tool, the Rossetti Infant-Toddler Language Scale (RITLS). A convenience sample of 201 infants was selected at primary healthcare clinics.

 

Results: Expressive and receptive language sensitivity scores were low across all three screens(ranging between 14% and 44%). The PEDS tools had high sensitivity (71%) and specificity (73%) ratings for the receptive and expressive language and socio-emotional domain in combination.

 

Conclusion: In the sample population, the PEDS tools did not accurately detect receptive and expressive language delays; however, communication delays in general were identified. Future research determining accuracy of the PEDS, PEDS-Developmental Milestones and PEDS tools for children aged 2–5 years in detecting communication delays should be prioritised.

Graduates’ perceptions of prosthetic and orthotic education and clinical practice in Tanzania and Malawi

MAGNUSSON, Lina
SHANGALI, Harold G
AHLSTRÖM, Gerd
2016

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Background: Maintaining and improving the quality of prosthetics and orthotics education at the Tanzania Training Centre for Orthopaedic Technologists is essential for the provision of appropriate prosthetics and orthotics services in African countries.

 

Objectives: To describe how Tanzanian and Malawian graduates’ of the Diploma in Orthopaedic Technology perceive their education and how it could be improved or supplemented to facilitate clinical practice of graduates.

 

Methods: Nineteen graduates from the diploma course in orthopaedic technology were interviewed and phenomenographic analysis was applied to the data.

 

Results: Seven descriptive categories emerged, namely varied awareness of the profession before starting education, well-equipped teaching facilities, aspects lacking in the learning context, need for changes in the curriculum, enabling people to walk is motivating, obstacles in working conditions and the need for continuous professional development. All participants perceived possible improvements to the content and learning environment.

 

Conclusions: Prosthetic and orthotic education can be better provided by modifying the content of the diploma programme by dedicating more time to the clinical management of different patient groups and applied biomechanics as well as reducing the programme content focusing on technical aspects of prosthetic and orthotic practice. Graduates were not prepared for the rural working conditions and the graduates desired continued training.

Impact of structured wheelchair services on satisfaction and function of wheelchair users in Zimbabwe

VISAGIE, Surona
MLAMBO, Tecla
VAN DER VEEN, Judith
NHUNZV, Clement
TIGERE, Deborah
SCHEFFLER, Elsje
2016

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Background: Providing wheelchairs without comprehensive support services might be detrimental to user satisfaction and function.

 

Objectives: This paper compares wheelchair user satisfaction and function before and after implementation of comprehensive wheelchair services, based on the World Health Organization guidelines on wheelchair service provision in less resourced settings, in Zimbabwe.

 

Method: A pre- and post-test study with a qualitative component was done. Quantitative data were collected with the Quebec User Evaluation of Satisfaction with Assistive Technology for adults and children and the ‘Functioning Every day with a Wheelchair Questionnaire’. Data were collected from 55 consecutively sampled wheelchair users, who received a new wheelchair in the study period. Qualitative data were collected through two audio recorded focus groups and two case studies and are presented through narrative examples.

 

Results: The proportion of adult users who were satisfied significantly increased for all wheelchair and service delivery aspects (p = 0.001 - 0.008), except follow-up (p = 0.128). The same was true for children’s post-test ratings on all variables assessed (p = 0.001 - 0.04), except training in the use of the device (p = 0.052). The biggest improvement in satisfaction figures were for comfort needs (44.3%), indoor mobility (43.2%), outdoor mobility (37.2%), safe and efficient, independent operation (33.5%) and transport (31.4%). The qualitative data illustrated user satisfaction with wheelchair features and services.

 

Conclusion: The wheelchair service programme resulted in significant positive changes in user satisfaction with the wheelchair, wheelchair services and function. It is recommended that the Zimbabwean government and partner organisations continue to support and develop wheelchair services along these guidelines.

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.

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.

 

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.

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.

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.

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.

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.

 

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.

 

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.

Disabling sexualities: Exploring the impact of the intersection of HIV, disability and gender on the sexualities of women in Zambia

WICKENDEN, Anna
NIXON, Stephanie
YOSHIDA, Karen K
2013

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Background: Women with a disability are often characterised as a homogenous social group consigned to a cultural stereotype with assumptions of dependence, asexuality and gender neutrality. Furthermore, there is a void of research about the experience of people with disabilities following diagnosis with HIV. Little is known about how HIV diagnosis intersects with disability and gender and how it shapes the experiences of intimacy and gender roles of those negotiating this intersection.

 

Objective: The objective of this study was to explore how HIV, disability and gender shape the perspectives of HIV-positive women with disabilities regarding intimacy and gender roles.

 

Methods: Twelve women in Lusaka, Zambia were recruited for in-depth semi-structured interviews to explore their experiences of having a disability and living with HIV. Interviews were conducted in English, Bemba, Nyanja and Zambian sign language. Descriptive and thematic analyses were conducted, followed by in-depth gender analyses of data relating to intimacy and gender roles.

 

Results: Data analysis led to the identification of two main themes: the impact of HIV diagnosis on intimate relationships amongst the participants; and the disruption and renegotiation of gender roles. These findings demonstrate the loss of intimacy (often decided by the participants) and changes in women’s gender roles (infrequently decided by them).

 

Conclusions: The narrow approaches to sexuality and HIV that reinforce misconceptions and stereotypes need to change. In their place should be inclusive and disability and sex-positive approaches that are informed by the diverse realities of women’s lives. Further research is needed to develop stronger evidence of the impact of HIV and disability on gender roles and sexuality.

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