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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.

Inclusion of vulnerable groups in health policies: Regional policies on health priorities in Africa

SCHNEIDER, Margie
EIDE, Arne Henning
AMIN, Mutamad
MACLACHLAN, Malcom
MANNAN, Hasheem
2013

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Background: If access to equitable health care is to be achieved for all, policy documents must mention and address in some detail different needs of groups vulnerable to not accessing such health care. If these needs are not addressed in the policy documents, there is little chance that they will be addressed at the stage of implementation.

 

Objectives: This paper reports on an analysis of 11 African Union (AU) policy documents to ascertain the frequency and the extent of mention of 13 core concepts in relation to 12 vulnerable groups, with a specific focus on people with disabilities.

 

Method: The paper applied the EquiFrame analytical framework to the 11 AU policy documents. The 11 documents were analysed in terms of how many times a core concept was mentioned and the extent of information on how the core concept should be addressed at the implementation level. Each core concept mention was further analysed in terms of the vulnerable group in referred to.

 

Results: The analysis of regional AU policies highlighted the broad nature of the reference made to vulnerable groups, with a lack of detailed specifications of different needs of different groups. This is confirmed in the highest vulnerable group mention being for ‘universal’. The reading of the documents suggests that vulnerable groups are homogeneous in their needs, which is not the case. There is a lack of recognition of different needs of different vulnerable groups in accessing health care.

 

Conclusion: The need for more information and knowledge on the needs of all vulnerable groups is evident. The current lack of mention and of any detail on how to address needs of vulnerable groups will significantly impair the access to equitable health care for all.

Perceived control, academic performance and well-being of Ghanaian college students with disability

OWUSU-ANSAH, Frances E
AGYEI-BAFFOUR, Peter
EDUSEI, Anthony
2012

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Background: Empirical evidence abounds showing the impact of perceived control on subjective well-being in several spheres of functioning, including academic performance. At tertiary institutions, such as the Kwame Nkrumah University of Science and Technology, Ghana, little is known about the needs of students with disabilities, as very few persons with disabilities attend institutions of higher learning.

 

Objectives: This study examined the relationship between perceptions of control and the academic and subjective well-being of students with disabilities.

 

Method: A total of 69 students with disabilities participated in this cross-sectional descriptive study. Using trusted control and subjective well-being scales, data were subject to descriptive analyses.

 

Results: Consistent with previous works, perceived control increased with increased subjective well-being, moderated by gender. In addition, forms of secondary control appeared to aid primary control in the tenacious pursuit of goals. However, neither perceived control nor self-esteem was predictive of academic performance.

 

Conclusion: Limitations of sample size notwithstanding, the findings of the study can be considered provocative. Implications for clinical utility in facilitating context-specific interventions for this marginalised group are discussed. Replication with a larger sample size in other tertiary institutions is suggested for future work.

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