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Organisations of Persons with Disabilities (OPDs) are critical to promoting and protecting the rights of people with disabilities. However, little is known about the extent to which people with disabilities are aware and members of OPDs. This study uses data from nine population-based surveys in low- and middle-income countries to explore OPD awareness and membership. Across settings, about a third of people with disabilities were aware of OPDs and fewer than 15% were members. Awareness and membership were lower amongst older adults, women, people with difficulties communicating, remembering and with self-care, people with less education, in poverty and in rural areas. Underrepresentation of certain groups may indicate a need to seek out the voices of people less likely to be associated with OPDs. Further, low total membership may be a cause for concern in settings where OPDs are relied upon to deliver essential services in the absence of state structures. Points of interest: Organisations of Persons with Disabilities can serve many roles, including advocacy, policymaking and service provision. The increasing involvement of Organisations of Persons with Disabilities in direct provision of essential services, particularly in low- and middle-income countries, is often a result of poor availability and quality of inclusive public services. This study explores awareness and membership of people with disabilities across nine low- and middle-income countries using population-based surveys. About a third of people with disabilities were aware of Organisations of Persons with Disabilities across settings, ranging from 12% in Lesotho to 73% in the Maldives. Fewer than 15% of people with disabilities were members across settings, ranging from 3.5% in Zambia to 14% in Vietnam (Cam Le district). Awareness and membership were generally lower amongst older adults, women, people with difficulties communicating, remembering and with self-care, people with less education, in poverty and in rural areas. Given the increased role of Organisations of Persons with Disabilities in direct service delivery, low total membership may indicate that many people with disabilities – particularly the most marginalised or experiencing the greatest need – are not being reached. Additional efforts may also be needed to seek out the voices of groups underrepresented in Organisations of Persons with Disabilities, particularly for advocacy and policymaking. [ABSTRACT FROM AUTHOR]

This special issue presents selected articles that were presented at the sixth African Network for Evidence-to-Action in Disability (AfriNEAD) virtual conference in December 2020. Footnotes 1 How to cite this article: Ohajunwa, C., Kahonde, C., Eide, A.H. & Ned, L., 2022, 'Disability unplugged: What really matters to people with disabilities?. [Extracted from the article]

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. [ABSTRACT FROM AUTHOR]

Background: It 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.Methodology: This 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.Results: Thirty-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.Conclusion: This 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. [ABSTRACT FROM AUTHOR]

Purpose:It is estimated that only 5–15% of people in low and middle income countries (LMICs) who need assistive technologies (AT) have access to them. This scoping review was conducted to provide a comprehensive picture of the current evidence base on AT within LMICs and other resource limited environments. Method:The scoping review involved locating evidence, extracting data, and summarizing characteristics of all included research publications. Results:Of the 252 publications included, over 80% focused on types of AT that address mobility (45.2%) and vision (35.5%) needs, with AT types of spectacles and prosthetics comprising over 50% of all publications. Evidence on AT that addresses hearing, communication, and cognition is the most underrepresented within the existing evidence base. The vast majority of study designs are observational (63%). Conclusions:Evidence on AT in resource-limited environments is limited in quantity and quality, and not evenly distributed across types of AT. To advance this field, we recommend using appropriate evidence review approaches that allow for heterogeneous study designs, and developing a common language by creating a typology of AT research focus areas. Funders and researchers must commit much greater resources to the AT field to ameliorate the paucity of evidence available.Implications for RehabilitationAn increase in the quality and quantity of research is required in resource limited environments, where 80% of the global population of people with disabilities reside. Improved and increased evidence is needed to identify and understand needs, inform policy and practice, and assess progress made in increasing access to and availability of appropriate AT.Over 80% of the existing research publications on assistive technologies in resource limited environments address mobility and vision. More research is needed on AT that address hearing, communication and cognition.The use of a common language would facilitate the advancement of the global AT research field. Specifically there is a need for researchers to use a common definition of AT (i.e., ISO 9999) and typology of AT research focus areas. [ABSTRACT FROM PUBLISHER]

Background: While it is widely assumed that disability, poverty and health are closely linked, research falls short of fully understanding the link. One approach to analysing the links between disability and poverty is through the concept of structural violence, referring to social structures that contribute to the impoverishment of individuals or communities. These structures can be political, ecological, legal and economic, among others. Objective: To explore structural violence and how it affects families of children with cerebral palsy among the Tonga ethnic group living in poor rural communities of Binga in Zimbabwe. Method: This is a longitudinal, qualitative and ethnographic study. Data were collected over a period of eight years from 2005 to 2013. Data collection techniques were in-depth interviews, participant observation and focus group discussions. Purposive sampling was used to recruit 53 informants. Results: Structural violence was noted through four themes: internal displacement and development, food and politics, water and sanitation, and social services. Poverty was noted in the form of unemployment, lack of education, healthcare, food and shelter. The concept of structural violence inflicted social suffering on the informants. Politics played a major role in activities such as food withdrawal, lack of water, development and allocation of local resources to 'the people of the city', leaving the informants struggling with care. Conclusion: Political and economic forces have structured risks and created a situation of extreme human suffering. The capabilities approach brings out the challenges associated with cerebral palsy in the context of development challenges. [ABSTRACT FROM AUTHOR]

Background: Good 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.Methods: An 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.Results: Several 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.Conclusions: Alongside 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. [ABSTRACT FROM AUTHOR]

Background: Persons with disability run the danger of not profiting from the development process due to exclusion from basic services and opportunities. Still, the knowledge base on exclusion mechanisms is relatively weak and there is a danger that important aspects are not addressed as they are hidden behind established understandings that are not critically scrutinised. Objectives: The main purpose of this article was to highlight critical thoughts on prevailing knowledge of the relationship between disability and poverty, the policy base for addressing the rights of persons with disability, and culture as a key component in continued discrimination. Method: This article aimed at integrating three papers on the above topics presented at the 2011 African Network for Evidence-to-Action on Disability (AfriNEAD) Symposium. The researchers have therefore thoroughly examined and questioned the relationship between disability and poverty, the influence of policy on action, and the role of culture in reproducing injustice. Results: The article firstly claims that there are limitations in current data collection practice with regards to analysing the relationship between poverty and disability. Secondly, ambitions regarding inclusion of persons with disability in policy processes as well as in implementation of policies are not necessarily implemented in an optimal way. Thirdly, negative aspects of culture in discrimination and bad treatment of disabled need to be highlighted to balance the discussion on disability and culture. Conclusion: A critical view of prevailing understandings of disability and development is key to producing the knowledge necessary to eradicate poverty amongst persons with disability and other vulnerable groups. Not only do we need research that is actually designed to reveal the mechanisms behind the disability-poverty relationship, we need research that is less tied up with broad political agreements that is not necessarily reflecting the realities at ground level. [ABSTRACT FROM AUTHOR]

Background: Whilst broadly agreed in the literature that disability and poverty are closely interlinked, the empirical basis for this knowledge is relatively weak. Objectives: To describe and discuss the current state of knowledge and to suggest the need for further generation of knowledge on disability and poverty. Method: Two recent attempts at statistically analysing the situation for disabled people and a series of qualitative studies on disability and poverty are applied in a discussion on the state of current knowledge. Results: Firstly, the surveys confirm substantial gaps in access to services, and a systematic pattern of lower levels of living amongst individuals with disability as compared to nondisabled. Existing surveys are however not originally set up to study the disability - poverty relationship and thus have some important limitations. Secondly, the qualitative studies have shown the relevance of cultural, political and structural phenomena in relation to poverty and disability, but also the complexity and the contextual character of these forces that may sometimes provide or create opportunities either at the individual or the collective level. Whilst not establishing evidence as such, the qualitative studies contribute to illustrating some of the mechanisms that bring individuals with disability into poverty and keep them there. Conclusions: A longitudinal design including both quantitative and qualitative methods and based on the current conceptual understanding of both disability and poverty is suggested to pursue further knowledge generation on the relationship between disability and poverty. [ABSTRACT FROM AUTHOR]

The main research question in this article is how access to information about HIV/AIDS and level of HIV/AIDS prevention related knowledge are distributed among disabled people, and whether level of knowledge predicts access to HIV/AIDS related services. A survey was carried out among a sample of 285 disabled people from three provinces in South Africa. Analyses of the data revealed that gender and level of education, together with geographical differences, are key predictors for access to information and knowledge about HIV/AIDS among disabled people. For male respondents number of information sources predicts access to voluntary counselling and testing services and HIV testing, while knowledge about prevention predicts access to Voluntary Counselling and Testing centres. Significant gender differences with regards to information, knowledge and access to services highlight the need for gender specific prevention strategies among disabled people. [ABSTRACT FROM AUTHOR]

Background: There is a general lack of knowledge regarding disability and especially factors that are associated with disability in low-income countries. We aimed to study the overall and gender-specific prevalence of disability, and the association between exposure to traumatic events and disability in a post-conflict setting.Methods: We conducted a cross-sectional community based study of four Greater Bahr el Ghazal States, South Sudan (n = 1200). The Harvard Trauma Questionnaire (HTQ) was applied to investigate exposure to trauma events. Disability was measured using the Washington Group Short Measurement Set on Disability, which is an activity-based scale derived from the WHO's International Classification of Disability, Functioning and Health.Results: The estimated prevalence of disability (with severe difficulty) was 3.6% and 13.4% for disability with moderate difficulties. No gender differences were found in disability prevalence. Almost all participants reported exposure to at least one war-related traumatic event. The result of a hierarchical regression analysis showed that, for both men and women, exposure to traumatic events, older age and living in a polygamous marriage increased the likelihood of having a disability.Conclusions: The finding of association between traumatic experience and disability underlines the precariousness of the human rights situation for individuals with disability in low-income countries. It also has possible implications for the construction of disability services and for the provision of health services to individuals exposed to traumatic events. [ABSTRACT FROM AUTHOR]

Abstract: The recent AIDS and Disability Partners Forum at the UN General Assembly High Level Meetings on AIDS in New York in June 2011 and the International AIDS Conference in Washington, DC in July 2012 underscores the growing attention to the impact of HIV and AIDS on persons with disabilities. However, research on AIDS and disability, particularly a solid evidence base upon which to build policy and programming remains thin, scattered and difficult to access. In this review paper, we summarise what is currently known about the intersection between HIV and AIDS and disability, paying particular attention to the small but emerging body of epidemiology data on the prevalence of HIV for people with disabilities, as well as the increasing understanding of HIV risk factors for people with disabilities. We find that the number of papers in the peer-reviewed literature remains distressingly small. Over the past 20 years an average of 5 articles on some aspect of disability and HIV and AIDS were published annually in the peer-reviewed literature from 1990 to 2000, increasing slightly to an average of 6 per year from 2000 to 2010. Given the vast amount of research around HIV and AIDS and the thousands of articles on the subject published in the peer-reviewed literature annually, the continuing lack of attention to HIV and AIDS among this at risk population, now estimated to make up 15% of the world''s population, is striking. However, the statistics, while too limited at this point to make definitive conclusions, increasingly suggest at least an equal HIV prevalence rate for people with disabilities as for their non-disabled peers. [Copyright &y& Elsevier]

The primary aim of this study was to determine which health care barriers were most important for people with disabilities in Malawi. To accomplish this, we devised a sequential mixed-methods research design that integrated locational survey data and qualitative data from field studies. Our secondary aim was to evaluate this research design not only as a design-solution to our particular research objective, but as a tool with more general applicability within social sciences. Malawi has one of the most underserved health service populations in the world with chronic resource shortages and long travel distances where people with disabilities are at a particular disadvantage. Nevertheless, our results show that even in a resource scarce society such as Malawi it is the interpersonal relationships between patients and health service providers that has the largest impact on the perception of access among patients. Our results also suggest that the sequential mixed-methods design is effective in guiding researchers towards models with strong specifications. • Provider-patient relationship important in the perception of access to healthcare. • Distance of secondary importance in perception of access. • Screening of field-study sites effective in quantitative model specification. [ABSTRACT FROM AUTHOR]