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Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study
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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.
Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).
Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.
Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.
Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.
COVID-19 in South Asia: State practices, responses and the experiences of persons with disability within the region
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An introduction into South Asia looking at the pandemic who people are struggling with in 2020. The DGS has aimed to first identify and acknowledge the diversity of disability experiences in the Global South and, second, make these experiences readily available and accessible to disabled people and their communities in the regions where the contributors themselves are from. In fact, in undertaking this special issue as editors, we would like to recognize the incredible persistence of our contributors to continue to work with us throughout the development of the papers, alongside acknowledging the many original contributors who were also unable to accept our invitation to participate because of the covid19 pandemic impacts upon every aspect of their lives.
Global Disability Summit - Civil Society Consultations 2020
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In December 2020, IDA coordinated with local and regional partners 4 (four) GDS consultations involving persons with disabilities in Africa, Latin America and Asia. These were the beginning of a series of more than 20 workshops that IDA is planning with partner organizations in different parts of the world, to assess progress made against national commitments adopted in 2018, discuss thematic priorities, and plan events, discussions and training for the run-up to the main GDS event in Oslo.
In total, consultations have been carried in 15 countries with more than 100 participants, reaching 5 (five) underrepresented groups: persons with intellectual & psychosocial disabilities, indigenous persons with disabilities, youth, and women
Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India
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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.
Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.
Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.
Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.
Barriers to Utilisation of Dental Services among Children with Disabilities in a Coordinated Healthcare Programme in Mangalore, South India: A Mixed Methods Study
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Purpose: Unmet oral health needs affect the quality of life of individuals, especially if they are already at a disadvantage like children with special health care needs. Strategies to mitigate these disparities in India’s diverse healthcare settings have hitherto been largely ineffective. This study was aimed to assess the utilisation and barriers to the use of dental health services among children with special health care needs, against the background of a coordinated healthcare programme implemented in Nitte (Deemed to be University), Mangalore, India.
Method: The study was conducted over a 6-month period, from September 2018 to February 2019. A mixed-methods design was concurrently employed for data collection. Utilisation of dental services was assessed quantitatively, and the barriers to dental services utilisation were assessed qualitatively through caregiver interviews, with a sequential data integration strategy.
Results: The quantitative data revealed gross underutilisation of dental resources by children (only 16% availed some form of dental treatment), and the prevalence of avoidance behaviour (63% showed reluctance and did not turn up for appointments). Restorative needs formed the highest unmet dental component among the children (67% required secondary dental care). In-depth interviews with the children’s caregivers revealed that the presence of cognitive barriers could have a direct effect on the time and quality of dental care delivered to their children.
Conclusion: Cognitive barriers among caregivers appear to have a profound impact on the underutilisation of dental services in their children with special healthcare needs. These barriers may be addressed within the integrated healthcare programme and the dental curricula through provisions for continued individual and community dental education, and motivational efforts that simultaneously target the caregivers and their children with special healthcare needs.
Implementing music therapy through telehealth: considerations for military populations
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Purpose
Telehealth provides psychotherapeutic interventions and psychoeducation for remote populations with limited access to in-person behavioural health and/or rehabilitation treatment. The United States Department of Défense and the Veterans Health Administration use telehealth to deliver primary care, medication management, and services including physical, occupational, and speech-language therapies for service members, veterans, and eligible dependents. While creative arts therapies are included in telehealth programming, the existing evidence base focuses on art therapy and dance/movement therapy, with a paucity of information on music therapy.
Methods
Discussion of didactic and applied music experiences, clinical, ethical, and technological considerations, and research pertaining to music therapy telehealth addresses this gap through presentation of three case examples. These programmes highlight music therapy telehealth with military-connected populations on a continuum of clinical and community engagement: 1) collaboration between Berklee College of Music in Boston, MA and the Acoke Rural Development Initiative in Lira, Uganda; 2) the Semper Sound Cyber Health programme in San Diego, CA; and 3) the integration of music therapy telehealth into Creative Forces®, an initiative of the National Endowment for the Arts.
Results
These examples illustrate that participants were found to positively respond to music therapy and community music engagement through telehealth, and reported decrease in pain, anxiety, and depression; they endorsed that telehealth was not a deterrent to continued music engagement, requested continued music therapy telehealth sessions, and recommended it to their peers.
Conclusions
Knowledge gaps and evolving models of creative arts therapies telehealth for military-connected populations are elucidated, with emphasis on clinical and ethical considerations.
Access and humanitarian protection: Lessons from restricted operational contexts and their application to the COVID-19 operational environment
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On 22 April, the Norwegian Refugee Council (NRC), PHAP, and the Global Protection Cluster (GPC) organized the first of a series of webinars on access and humanitarian protection. The event provided an overview of the key terms, concepts, interlinkages, and dilemmas of protection and access in armed conflict, disaster, and health emergencies. What are the main protection concerns particular to hard-to-reach areas? What challenges do protection actors face in terms of access? Are maintaining access and protection priorities at cross purposes or can they help reinforce each other? This introduction was followed by a discussion with protection experts, exploring the ways in which existing lessons from protection programming in hard-to-reach areas can be applied to protection operations in the context of the COVID-19 outbreak.
The webinar recording and it's transcript are available
Understanding the mobile disability gap Insights on mobile phone access and usage by persons with disabilities in Kenya and Bangladesh
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This research aims to bridge the knowledge gap and to understand the potential of mobile phones as assistive technologies (ATs) for persons with disabilities in Kenya and Bangladesh. This report presents, for the first time, an evaluation of the gap and barriers to mobile phone ownership experienced by persons with disabilities, as well as the usage patterns of four main mobile-enabled services (voice, SMS, mobile internet and mobile money) and the role of mobile phones to enable access to basic services, such as education, healthcare, transportation, employment and financial services. Finally, the report explores the characteristics of access and usability of mobile products and services along the customer journey.
Bridging the mobile disability gap in refugee settings
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This case study highlights refugees with disabilities’ access to mobile services and the benefits and challenges associated with using these services in three different humanitarian contexts. The analysis is based on a representative survey of refugees in three contexts: Bidi Bidi refugee settlement (Uganda), Kiziba refugee camp (Rwanda) and with urban refugees in Jordan. It also includes qualitative data drawn from two focus groups conducted with refugees with disabilities in Bidi Bidi and Kiziba. The survey used the Washington Group Questions (WGQs) to assess prevalence of disability amongst the refugee population
The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province
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Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.
Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.
Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.
Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.
Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.
African Journal of Disability, Vol 8, 2019
Guidelines. Inclusion of persons with disabilities in humanitarian action
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The guidelines set out essential actions that humanitarian actors must take in order to effectively identify and respond to the needs and rights of persons with disabilities who are most at risk of being left behind in humanitarian settings. The recommended actions in each chapter place persons with disabilities at the centre of humanitarian action, both as actors and as members of affected populations. They are specific to persons with disabilities and to the context of humanitarian action and build on existing and more general standards and guidelines. These are the first humanitarian guidelines to be developed with and by persons with disabilities and their representative organizations in association with traditional humanitarian stakeholders. Based on the outcomes of a comprehensive global and regional multi-stakeholder consultation process, they are designed to promote the implementation of quality humanitarian programmes in all contexts and across all regions, and to establish and increase both the inclusion of persons with disabilities and their meaningful participation in all decisions that concern them.
Chapters include:
- What to do - key approaches to programming
- Data and information management
- Partnerships and empowerment of organisation of people with disabilities
- Cross cutting considerations
- Accountability to affected people and protection from sexual exploitation and abuse
- Humanitarian response options
- Stakeholder roles and responsibilities
- What sectors need to do
- Camp coordination and camp management
- Education
- Food security and nutrition
- Livelihoods
- Health
- Protection
- Shelter and settlements
- Water, sanitation and hygiene
Supporting the enactment of inclusive pedagogy in a primary school
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While inclusion has generally been accepted as orthodoxy, a knowledge – practice gap remains which indicates a need to focus on inclusive pedagogy. This paper explores how teachers in the Republic of Ireland primary school were supported to develop inclusive pedagogy to meet the needs of learners with special educational needs (SEN). It is underpinned by a conceptual framework which combines an inclusive pedagogical approach and key principles of effective professional development (PD) arising from the literature, which informed the development of a professional learning community (PLC) for inclusive practice in a primary school. The impact of the PD on teachers’ professional practice was explored using an evidence-based evaluation framework. Analysis of interview and observation data evidenced that engagement with inclusive pedagogy in a PLC, underpinned by critical dialogue and public sharing of work, positively impacted teacher attitudes, beliefs, efficacy and inclusive practice. This research offers a model of support for enacting inclusive pedagogy.
Undergraduate physiotherapy students’ basic wheelchair provision knowledge: a pilot study in two universities in Colombia
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Purpose:
Access to an appropriate wheelchair is a human right. Only between 5–15% of people who need a wheelchair have access to one. One of the key barriers to access is the lack of appropriately trained rehabilitation professionals. The objective of this study was to evaluate basic manual wheelchair provision knowledge in final-year physiotherapy undergraduate students in two programs in Colombia.
Materials and methods:
Students took the International Society of Wheelchair Professionals Wheelchair Service Provision – Basic Test which was administered online and in Spanish. The minimum score to pass the test is 70%; it assesses seven domains: Assessment; Prescription; Products; Fitting; User training; Follow-up, maintenance, and repairs; and Process.
Results and conclusions:
One-hundred sixteen students took the test and no one passed the test. The highest median domain scores were in Assessment and Process while the lowest were in Fitting and Products. The limitations of this study include that this sample does not represent all physiotherapy programmes or students in Colombia, there may be potential errors in the Spanish translation of the outcome measure, and students encountered Internet connectivity issues during the test that may have impacted their scores. Immediate interventions are required to improve teaching and students’ learning outcomes related to basic manual wheelchair provision in these two programs. This study may serve as a foundation for future regional or national studies that assess the situation of wheelchair provision training in rehabilitation programs that will inform improvement actions. This manuscript is also available in Spanish as Supplemental Material.
Guidance on strengthening disability inclusion in Humanitarian Response Plans
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This guidance provides support to seven UN entities on how to strengthen inclusion of disability in Humanitarian Response Plans (HRPs) as part of the UK Department for International Development (DFID) Humanitarian Investment Program. The aim of this work is to make humanitarian programming more responsive to the needs of people with disabilities affected by crisis. Humanitarian Response Plans are the product of a strategic planning process that is informed by humanitarian needs assessment activities. Therefore, this guidance focuses primarily on the steps in the humanitarian program cycle (HPC) leading to the HRP, including the process of developing the Humanitarian Needs Overview (HNO). This guidance has been aligned to the 2019 revision of this process
Disability inclusive approaches to humanitarian programming: Summary of available evidence on barriers and what works
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This rapid review identifies multiple factors that limit or exclude people with impairments from accessing humanitarian services and programming – including individual, attitudinal, environmental and institutional barriers
Pedagogical Relational Teachership (PeRT) – a multi-relational perspective
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This article presents a theoretical relational perspective of education, Pedagogical Relational Teachership (PeRT), which supports the development of new knowledge about teachers’ relational proficiencies to create opportunities for students to participate in their education and to emerge as unique individuals and speak with their own voices. Within the field of inclusive education, it is a relational approach where teaching is to be understood relationally. The fundamental bases in this inclusive perspective on education are the Convention on the Rights of the Child and the Salamanca Statement. The concept of relational teachership is elaborated on to emphasise the importance of teachers’ relational proficiencies in the classroom. The article also clarifies how PeRT includes a multi-dimensional model to illuminate relational processes and relationships on different levels within the educational system. PeRT is a relational approach for scholars and practitioners, which can be seen as a new beginning and an invitation to a relational pathway that explores participation, accessibility and equity.
Communication Matters!
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The research Communication Matters! shows which obstacles persons with disabilities face in accessing public information and services. The research took place in three districts in the province of Pursat. 1171 persons with disabilities in 229 villages are reached.
Due to the research, many persons with disabilities were able to share their stories for the first time. Many persons were also found for the first time, because the team made an effort to visit everyone in the village.
Uniting to combat neglected tropical diseases 2018 Action Framework Report
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From 2013 to 2017, the Uniting to Combat Neglected Tropical Diseases (“Uniting”) partnership has produced an annual scorecard and report to celebrate progress and highlight the principal challenges. The Uniting partnership reviewed the scorecard approach in 2017. The initial scoring process was associated with several challenges in terms of inconsistent indicators across diseases and the number of subjective judgements required to arrive at a final score. The scorecard review resulted in a transition from a scoring approach to a collaborative assessment of progress, gaps and priorities, and identification of areas for collective action. Two new tools replaced the scorecard: the Action Framework and the Impact Dashboard. The Action Framework is a standardized gap analysis tool. It uses qualitative input from stakeholders across the NTD community and fosters dialogue and collective action among a broad set of stakeholders. The Impact Dashboards display quantitative data sourced from WHO and pharmaceutical companies, with standardized indicators across the PC and IDM diseases, to provide a high-level view of impact and gaps at the global level.
Exploring the experiences of students with visual impairments at the University of Botswana
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Purpose: This paper sought to document the responsiveness of the University of Botswana towards the academic needs of students with visual impairments. The study examined the academic experiences of students with visual impairments enrolled at the University and explored their information-seeking needs. The study was informed by the theory of social justice.
Method: This was a qualitative study. Data was collected from students with visual impairments and academic staff from different faculties at the University of Botswana, through document analysis, interviews and observation techniques.
Results: The findings revealed that students with visual impairments experience extra challenges compared to students without disabilities. This is mainly because they do not get full support to enable them to excel academically. Furthermore, lecturers use teaching methodologies that do not accommodate these students, and learning materials are not adapted to formats suitable for them. Access to information is another major concern that hinders the participation of students with visual impairments in tertiary institutions.
Conclusion: The study recommends that lecturers need to be trained on suitable methods to teach students with visual impairments and how best to deliver academic content to them.
Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)
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