The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations.
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Objective: To investigate and summarize the literature on the validation of International classification of functioning, disability and health (ICF) core sets from 2001 to 2019 and explore what research methods have been used when validating ICF core sets.
Methods: The current study is a scoping review using a structured literature search.
Results: In total, 66 scientific articles were included, of which 23 ICF core sets were validated. Most validation studies were conducted in Europe using a quantitative methodology and were validated from the perspective of patients. Analysis methods differed considerably between the studies, and most ICF core sets were validated only once for a single target population or from a single perspective. The comprehensive core sets were validated more often than the brief core sets, and core sets for stroke and low back pain were validated most often.
Conclusion: The results of the current study show that only 66% of the existing ICF core sets are validated. Many of the validation studies are conducted in a European context and from a single perspective. More validation studies of ICF core sets from the perspective of both patients and professionals are needed.
Purpose: To explore the preferable way of use and design of a work ability prognosis support tool for insurance physicians (IPs) and labour experts (LEs), based on a prediction model for future changes in work ability among individuals applying for a work disability benefit.
Methods: We conducted three focus groups with professionals of the Dutch Social Security Institute (17 IPs and 7 LEs). Data were audio recorded and qualitatively analysed according to the main principles of thematic analysis.
Results: Clarity and ease of use were mentioned as important features of the tool. Most professionals preferred to make their own judgement during the work disability assessment interview with the claimant and afterwards verify their evaluation with the tool. Concerning preferences on the design of the tool, dividing work disability claimants into categories based on the outcome of the prediction model was experienced as the most straightforward and clear way of presenting the results. Professionals expected that this encourages them to use the tool and act accordingly.
Conclusions: The tool should be easy to access and interpret, to increase the chance that professionals will use it. This way it can optimally help professionals making accurate prognoses of future changes in work ability.
Purpose: Sickness insurance and workers’ compensation systems decide on peoples’ eligibility for benefits, and are commonly based on medical certificates and assessments of work ability. Systems differ in the extent to which they preserve clients’ dignity and right to fair assessments. In this article, we define a new concept for studying interactions between individuals and systems: social insurance literacy, which concerns how well people understand the different procedures and regulations in social insurance systems, and how well systems communicate with clients in order to help them understand the system.
Methods: The concept was defined through a scoping literature review of related concepts, a conceptual re-analysis in relation to the social insurance field, and a following workshop.
Results: Five related concepts were reviewed for definitions and operationalizations: health literacy, financial/economic literacy, legal capability/ability, social security literacy, and insurance literacy.
Conclusions: Social insurance literacy is defined as the extent to which individuals can obtain, understand and act on information in a social insurance system, related to the comprehensibility of the information provided by the system. This definition is rooted in theories from sociology, social medicine and public health. In the next step, a measure for the concept will be developed based on this review.
Persons living with visual impairments form a major group of people with various types of impairments in African countries. Little has been reported about the means and forms of information they seek to cope with their environment, and studies in Nigeria specifically, have not explored health information-seeking behaviour of visually impaired persons. This paper documents the health information-seeking behaviour of visually impaired persons (VIPs) in Ibadan Metropolis. A standardized questionnaire was administered to 200 VIPs sampled from two health facilities in Ibadan Metropolis. Most (66%) of the VIPs were partially sighted, 43% reported health issues as their most worrying challenge, while 20% reportedly had daily unmet health information needs. VIPs accessed information about medication for ailments from friends (45%), adopted herbal medication (50.5%) and /or indulged in selfmedication (21%). They reportedly had worse health (9.5%) status, while 4.5% reportedly remained worse off emotionally. The study concludes that VIPs considered health challenges and limited access to health information as their major concerns. Care for visually impaired persons should be incorporated in the primary healthcare routine and school health curriculum. Media programmes are also required to sensitise the general public about health information needs of VIPs.
Disability and the Global South, 2018 Vol.5, No. 1
Purpose: Autism Spectrum Disorder (ASD) is a lifelong developmental disability characterised by difficulties in social interaction and social communication, and restricted and repetitive behaviour (American Psychiatric Association, 2013). Despite its prevalence the world over, there is a paucity of research in some areas such as education, particularly in sub-Saharan Africa. This paper attempts to address the gap by exploring teachers’ understanding of ASD in Nigeria.
Method: Using an adapted version of the Knowledge About Childhood Autism Among Health Workers (KCAHW) questionnaire (Bakare et al, 2008), a survey was conducted among 177 mainstream primary teachers from Lagos State (112 from eleven urban schools and 65 from four rural schools).
Results: The total mean score on the Adapted KCAHW questionnaire among all the participating teachers was 10.81 ± 4.13 out of a possible total of 16. The mean score for urban teachers was 11.21 ± 4.31, while the mean score for rural teachers was 10.11 ± 3.75. In total, 46% of the urban teachers and 31% of the rural teachers demonstrated a generally accurate knowledge of ASD, with 15% (23 urban teachers and 4 rural teachers) of the sample answering all questions correctly. Over 50% of urban teachers and almost 70% of rural teachers surveyed had only a low or moderate understanding of ASD.
Conclusions: This research supports previous studies that identified low professional knowledge and understanding of ASD, and a need for improved professional education and training.
Limitations: The focus was on only one state within Nigeria, and only on mainstream primary schools. Further research is necessary across the educational age range as well as different geographical areas in the country.
Aim: This study attempts a comprehensive qualitative and quantitative analysis of un-annotated bibliographic listing of books and citations compiled on specific learning disability published by researchers in India.
Method: An online and offline survey covering ISSN journals and ISBN marked books available in print or electronic media was compiled, coded, categorized, and classified by title, theme, year, journals, and names of author/s.
Results: The bibliographic search yielded 450 research articles drawn from 196 national and international journals of Indian origin and 29 book titles on the topic of learning disability and/or its equivalents covering themes related to their nature-characteristic (N: 184; 40.89%), therapy-intervention (N: 115; 25.56%), causes-correlates (N: 57; 12.67%), screening-assessment-identification (N: 52; 11.56 %), and epidemiology-prevalence (N: 42; 9.33%). A decade wise timeline analysis shows an increasing trend in the quantum of publications on learning disability by almost four times from the base years of <=1990s to the contemporary period, along with corresponding shift in the increased use of the term ‘learning disability’ in preference for other older terms (p:<0.05).
Conclusion: On the whole, there seems to be much unused information available about learning disabilities in the country, which now lies widely scattered.
Limitations & Recommendation: Although no claim is made that the bibliographic listing is all inclusive, it is recommended that the first step is to have an information gathering mechanism, creation of a dynamic repository, or archival system with retrieval systems in place for prospective researchers on a subject matter of great importance within the country.
Background: Parenting children with learning disabilities requires a high level of knowledge and access to resources, information and services. In developing countries, however, these resources and services are not always available. Parents in Namibia, a developing country, therefore face challenges addressing children’s learning and other developmental disabilities, including challenges related to preventative and supportive interventions.
Objective: This research focuses on challenges faced by parents as they parent children with learning disabilities in Opuwo, Namibia.
Method: In-depth interviews were conducted with eight parents regarding the challenges they face in parenting their children with learning disabilities. Thematic analysis enabled the researchers to identify, analyse and report on themes that emerged from the qualitative interview data.
Results: Analysis of the interviews indicated that some participants had only a vague understanding of learning disabilities, as they did not have access to essential knowledge about this phenomenon. They also lacked an awareness of the availability of programmes, services and policies meant to benefit their children with learning disabilities. Participants voiced that they, their children with learning disabilities and community members have stereotypes and prejudices regarding learning disabilities. In this study, most of the children with learning disabilities were raised by single, unemployed parents who seemed to have access to less support from external sources than married couples parenting children with learning disabilities. These single parents are usually not married and because of lack of financial support from the other parent, the majority of them indicated that they struggle to meet the financial and material needs of their children.
Conclusion: The researchers concluded that the participants in this study experience a range of challenges in parenting their children with learning disabilities. The main challenges emanate from financial instability, as well as lack of knowledge regarding services and programmes for children with learning disabilities. This lack of knowledge on the part of participants could indicate poor policy education by policy implementers at grass-roots level.
The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.
The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.
CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.
The development of an inclusive pedagogy takes on new urgency in Norwegian schools as the student body has become increasingly culturally and linguistically diverse. Traditionally, the Norwegian school has been dominated by homogenising and assimilating discourses, whereas alternative voices have been situated at the margins. In response to this tendency, we present two transcultural students’ autoethnographic stories produced in alternative spaces to the Norwegian mainstream, that is, in a transition class for newly arrived students and on Facebook. Both spaces are perceived as contact zones in the sense that they are culturally and linguistically complex. This article illustrates how the students perform cultural and linguistic resistance towards dominant homogenising discourses as the transition class and Facebook seem to offer opportunities for constructing alternative stories. Moreover, we contend that these alternative stories offer important knowledge for conventional education contexts since they represent stories of competence in contrast to the assumed limitations of these students.
This article is based on a qualitative study that set out to analyze the labels and terms attached to 28 people affected by albinism in villages in Kilolo district, Tanzania. Even though national and international attention to killings of people with albinism has attempted to improve general knowledge of albinism and reduce discrimination, most of the community members within the study had lit- tle knowledge of the (bio)medical explanations for albinism and tended to marginalize people with albinism. Framed within a wider moral discourse on ill- ness, disability and socially appropriate behavior, albinism is mostly considered to be God’s will or the consequence of past misdeeds within the family, and many of the existing labels for people with albinism express such ideas.
Purpose: This study aimed to provide insights into factors that influence the acquisition, accessibility, and utilisation of Sexual and Reproductive Health (SRH) information and services by deaf people who communicate using Ghanaian Sign Language (GSL).
Method: The study explored deaf people’s perceptions about barriers to SRH information and services in Ghana. There were 26 participants in 3 focus groups: 10 executives of Ghana National Association of the Deaf (GNAD), 7 deaf adult males and 9 deaf adult females. A key informant, who had experience in working with deaf people, was also interviewed. Review of documents and observations helped to clarify data gathered from the focus groups.
Results: Study findings indicated that when accessing SRH information and services in Ghana, deaf people encounter numerous barriers such as problems with communication, ignorance about deafness, negative attitudes, and services that are not customised to their needs.
Conclusion: If it is to succeed, any SRH programme for the deaf community must make the eradication of communication barriers a priority, since communication is fundamental to all challenges that deaf people encounter.
Purpose: By exploring the level of knowledge about HIV/AIDS and attitudes towards persons with HIV/AIDS among deaf people in Ghana, this article aims to identify and correct possible gaps in awareness.
Method: A participatory sexual and reproductive health (SRH) needs assessment was conducted, targetting deaf people who were fluent in the Ghanaian Sign Language (GSL). The study design was a two-phase, sequential, mixed methods approach. Three focus groups assisted in the development of a survey, which was then implemented for needs assessment data collection. The 179 study participants consisted of 26 focus group participants, 152 survey respondents and 1 key informant. Of the focus group participants, 7 were executives of Ghana National Association of the Deaf (GNAD), 10 were adult males, and nine were adult females. Apart from the key informant, all the participants were deaf persons.
Results: The study indicated that many respondents still had misconceptions about HIV/AIDS and had difficulty identifying preventive methods, but their attitudes towards persons with HIV/AIDS was generally positive.
Conclusion: More attention needs to be paid to the requirements of the deaf community and to designing HIV/AIDS programmes and services that are deaf-friendly and accessible.
For many people who are called disabled, having this label means to be excluded from the experience of 'an ordinary sexual life'. For those who are called intellectually disabled exclusion from experiences of any kind of positive sexual life is almost universal. This article explores how some people with intellectual disabilities have sought to open up pathways towards accessing experiences of sexual expression as a way to move forward towards being able to integrate a concept of sexuality into their lives. Two support workers are interviewed. Both are employed by a Human Services organization in Aotearoa, New Zealand, which provides long term support for people with intellectual disabilities. Their comments reveal that access to successful instances of sexual expression for people in this group are currently only available those who are articulate enough and persistent enough to keep trying until they succeed. Barriers to success are isolated and some wider issues surrounding what changes might positively affect this group are discussed.