Gubela Mji

African indigenous knowledge and research

This paper seeks to heighten awareness about the need to include indigenous knowledge in the design and implementation of research, particularly disability research, in Africa. It affirms the suitability of the Afrocentric paradigm in African research and argues the necessity for an emancipatory and participatory type of research which values and includes indigenous knowledge and peoples. In the predominantly Western-oriented academic circles and investigations, the African voice is either sidelined or suppressed because indigenous knowledge and methods are often ignored or not taken seriously. This paper posits that to be meaningful and empowering, African-based research must, of necessity, include African thought and ideas from inception through completion to the implementation of policies arising from the research. In this way the work is both empowering and meaningful for context-specific lasting impact.

An African way of networking around disability

There is a relative paucity of disability‐related research emanating from low and middle income countries. We report here on the successes and challenges of AfriNEAD (the African Network on Evidence to Action on Disability), a recently formed network that brings together researchers, activists and other role‐players in attempting to develop and support disability‐related research in Africa. We introduce the African concept of ubuntu (humanness) as an organizing principle to guide respectful engagement amongst people with widely differing skills and experiences with the overall project of collaborating in research and development to make a positive difference to disabled people’s lives.

Understanding the local context for the application of global mental health: a rural South African experience

BACKGROUND The global mental health movement has supplied ample evidence of treatment gaps for mental health care in low and middle-income countries. It is also clear that substantial progress has been made in developing an evidence base for innovative treatments which have been shown to work. It is only through rich and detailed understandings of local contexts and individual experiences that the challenges global mental health faces can be fully appreciated. METHODS In this article, we use a single, qualitative case study from one context and of one family affected by mental disorder. This is to elucidate core issues which we regard as key to further developments in the global mental health agenda. RESULTS Core issues are poor mental health literacy, transport and lack of outreach, limitations of formal health care, challenges at the interface with indigenous health care and lack of follow-up and rehabilitation. CONCLUSION We propose shifting the focus of mental health care from cure to promotion and prevention, using an interdisciplinary team of lay and trained health workers from the professional, folk and popular sectors. The challenges are complex, as this small study shows, but it is only by looking closely at local conditions that it is possible to develop interventions which are contextually appropriate and make optimal use of local resources.

Accessing community health services : challenges faced by poor people with disabilities in a rural community in South Africa

Poor people with disabilities who live in poor rural societies experience unique problems in accessing health services. Their situation is influenced by multiple factors which unfold and interplay throughout the person’s life course. The difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. The barriers are rooted in a life in poverty, upheld and maintained by poverty-reinforcing social forces of the past and the present, and reinforced by the lack of the person’s perspective of the health services. This article explores how difficulties may interact and influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. The study reveals that non-compliance is not necessarily about neglect but could as well be a matter of lived poverty. The study was based on in-depth interviews with people with disabilities and family members, and semi-structured interviews with health personnel. The data analysis is contextual and interpretive. When offering health services to people with disabilities living in resource-poor settings, services should take into consideration the person’s history, the needs, and the resources and abilities of the family group. Rethinking access to health services should transcend a narrow medical institutionalisation of health professional’s training, and include a patient’s perspective and a social vision in understanding and practice. Such rethinking requires health service models that integrate the skills of health professionals with the skills of disabled people and their family members. Such skills lie dormant at community level, and need to be recognised and utilised.

Promoting good policy for leadership and governance of health related rehabilitation: a realist synthesis

BackgroundGood governance may result in strengthened performance of a health system. Coherent policies are essential for good health system governance. The overall aim of this research is to provide the best available scientific evidence on principles of good policy related leadership and governance of health related rehabilitation services in less resourced settings. This research was also conducted to support development of the World Health Organization’s (WHO) Guidelines on health related rehabilitation.MethodsAn innovative study design was used, comprising two methods: a systematic search and realist synthesis of literature, and a Delphi survey of expert stakeholders to refine and triangulate findings from the realist synthesis. In accordance with Pawson and Tilley’s approach to realist synthesis, we identified context mechanism outcome pattern configurations (CMOCs) from the literature. Subsequently, these CMOCs were developed into statements for the Delphi survey, whereby 18 expert stakeholders refined these statements to achieve consensus on recommendations for policy related governance of health related rehabilitation.ResultsSeveral broad principles emerged throughout formulation of recommendations: participation of persons with disabilities in policy processes to improve programme responsiveness, efficiency, effectiveness, and sustainability, and to strengthen service-user self-determination and satisfaction; collection of disaggregated disability statistics to support political momentum, decision-making of policymakers, evaluation, accountability, and equitable allocation of resources; explicit promotion in policies of access to services for all subgroups of persons with disabilities and service-users to support equitable and accessible services; robust inter-sectoral coordination to cultivate coherent mandates across governmental departments regarding service provision; and ‘institutionalizing’ programmes by aligning them with preexisting Ministerial models of healthcare to support programme sustainability.ConclusionsAlongside national policymakers, our policy recommendations are relevant for several stakeholders, including service providers and service-users. This research aims to provide broad policy recommendations, rather than a strict formula, in acknowledgement of contextual diversity and complexity. Accordingly, our study proposes general principles regarding optimal policy related governance of health related rehabilitation in less resourced settings, which may be valuable across diverse health systems and contexts.

'You must carry your wheelchair'--barriers to accessing healthcare in a South African rural area.

Background There is international evidence that people with disabilities face barriers when accessing primary healthcare services and that there is inadequate information about effective interventions that work to improve the lives of people with disabilities, especially in low-income and middle-income countries. Poor rural residents generally experience barriers to accessing primary healthcare, and these problems are further exacerbated for people with disabilities. Objective In this study, we explore the challenges faced by people with disabilities in accessing healthcare in Madwaleni, a poor rural Xhosa community in South Africa. Design Purposive sampling was done with 26 participants, using semi-structured interviews and content analysis to identify major themes. Results This study showed a number of barriers to healthcare for people with disabilities. These included practical barriers, including geographical and staffing issues, and attitudinal barriers. Conclusions It is suggested that although there are practical barriers that need to be addressed, attitudinal barriers could potentially be addressed more easily and cost effectively.

A description of assistive technology sources, services and outcomes of use in a number of African settings.

Abstract Purpose statement: The article explores assistive technology sources, services and outcomes in South Africa, Namibia, Malawi and Sudan. Methods: A survey was done in purposively selected sites of the study countries. Cluster sampling followed by random sampling served to identify 400–500 households (HHs) with members with disabilities per country. A HH questionnaire and individual questionnaire was completed. Country level analysis was limited to descriptive statistics. Results: Walking mobility aids was most commonly bought/provided (46.3%), followed by visual aids (42.6%). The most common sources for assistive technology were government health services (37.8%), “other” (29.8%), and private health services (22.9%). Out of the participants, 59.3% received full information in how to use the device. Maintenance was mostly done by users and their families (37.3%). Devices helped a lot in 73.3% of cases and improved quality of life for 67.9% of participants, while 39.1% experienced functional difficulties despite the devices. Conclusion: Although there is variation between the study settings, the main impression is that of fragmented or absent systems of provision of assistive technology. Implications for rehabilitation Provision of assistive technology and services varied between countries, but the overall impression was of poor provision and fragmented services. The limited provision of assistive technology for personal care and handling products is of concern as many of these devices requires little training and ongoing support while they can make big functional differences. Rural respondents experienced more difficulties when using the device and received less information on use and maintenance of the device than their urban counterparts. A lack of government responsibility for assistive device services correlated with a lack of information and/or training of participants and maintenance of devices.

A study of human resource competencies required to implement community rehabilitation in less resourced settings

BackgroundIt is estimated that over one billion persons worldwide have some form of disability. However, there is lack of knowledge and prioritisation of how to serve the needs and provide opportunities for people with disabilities. The community-based rehabilitation (CBR) guidelines, with sufficient and sustained support, can assist in providing access to rehabilitation services, especially in less resourced settings with low resources for rehabilitation. In line with strengthening the implementation of the health-related CBR guidelines, this study aimed to determine what workforce characteristics at the community level enable quality rehabilitation services, with a focus primarily on less resourced settings.MethodologyThis was a two-phase review study using (1) a relevant literature review informed by realist synthesis methodology and (2) Delphi survey of the opinions of relevant stakeholders regarding the findings of the review. It focused on individuals (health professionals, lay health workers, community rehabilitation workers) providing services for persons with disabilities in less resourced settings.ResultsThirty-three articles were included in this review. Three Delphi iterations with 19 participants were completed. Taken together, these produced 33 recommendations for developing health-related rehabilitation services. Several general principles for configuring the community rehabilitation workforce emerged: community-based initiatives can allow services to reach more vulnerable populations; the need for supportive and structured supervision at the facility level; core skills likely include case management, social protection, monitoring and record keeping, counselling skills and mechanisms for referral; community ownership; training in CBR matrix and advocacy; a tiered/teamwork system of service delivery; and training should take a rights-based approach, include practical components, and involve persons with disabilities in the delivery and planning.ConclusionThis research can contribute to implementing the WHO guidelines on the interaction between the health sector and CBR, particularly in the context of the Framework for Action for Strengthening Health Systems, in which human resources is one of six components. Realist syntheses can provide policy makers with detailed and practical information regarding complex health interventions, which may be valuable when planning and implementing programmes.

Networking in Disability for Development: Introducing the African Network for Evidence-to-Action on Disability (AfriNEAD)

This chapter argues for the importance of networking to promote the human rights of persons with disability. The nature of relationships between people in a community can be seen as a key indicator of the well-being of that community. The global village can try and maintain the distant and sometimes difficult relationships between vulnerable groups through the imaginative use of networking, thus providing not just an opportunity, but an obligation to use such technologies to promote social capital, social inclusion and social participation. Networks offer a means of supporting and achieving these aspirations for persons with disabilities. We introduce the African Network for Evidence-to-Action on Disability (AfriNEAD) and argue for its timeliness.

Factors related to environmental barriers experienced by persons with and without disabilities in diverse African settings

This paper explores differences in experienced environmental barriers between individuals with and without disabilities and the impact of additional factors on experienced environmental barriers. Data was collected in 2011–2012 by means of a two-stage cluster sampling and comprised 400–500 households in different sites in South Africa, Sudan Malawi and Namibia. Data were collected through self-report survey questionnaires. In addition to descriptive statistics and simple statistical tests a structural equation model was developed and tested. The combined file comprised 9,307 participants. The Craig Hospital Inventory of Environmental Factors was used to assess the level of environmental barriers. Transportation, the natural environment and access to health care services created the biggest barriers. An exploratory factor analysis yielded support for a one component solution for environmental barriers. A scale was constructed by adding the items together and dividing by number of items, yielding a range from one to five with five representing the highest level of environmental barriers and one the lowest. An overall mean value of 1.51 was found. Persons with disabilities scored 1.66 and persons without disabilities 1.36 (F = 466.89, p < .001). Bivariate regression analyses revealed environmental barriers to be higher among rural respondents, increasing with age and severity of disability, and lower for those with a higher level of education and with better physical and mental health. Gender had an impact only among persons without disabilities, where women report more barriers than men. Structural equation model analysis showed that socioeconomic status was significantly and negatively associated with environmental barriers. Activity limitation is significantly associated with environmental barriers when controlling for a number of other individual characteristics. Reducing barriers for the general population would go some way to reduce the impact of these for persons with activity limitations, but additional and specific adaptations will be required to ensure an inclusive society.