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Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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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 Nepal: The Impact on Indigenous Peoples and Persons with Disabilities

GURUNG, Pratima
2021

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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. 

Global Disability Summit - Civil Society Consultations 2020

INTERNATIONAL DISABILITY ALLIANCE (IDA)
February 2021

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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

Reducing albinism related stigma in Tanzania: an exploration of the impact of radio drama and radio interview

DE GROOT, T M M
VELDMAN, M
JACQUET, W
PETERS, R M H
VANWING, T
MEURS, P
2021

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Reducing stigma is key to improving the wellbeing of people with albinism in Tanzania. This study aimed to obtain more insight into the effects of two radio interventions with regard to albinism-related stigma: a radio drama and a radio interview. Assessment of the radio interventions was based on two attitude measurement instruments (The Albinism Explanatory Model Interview Catalogue Community Stigma Scale and the Albinism Social Distance Scale), an entertainment scale, and two informal (group) interviews. In total, 111 community members participated in the assessment prior to the radio drama, and 65 after. In the case of the radio interview, 123 community members participated in the assessment prior to the radio show, and 77 after. Following the radio drama, a significant reduction was found in terms of community stigma, and a reduction in social distance was found after both interventions. The entertainment score for both interventions was high, but significantly higher for the radio drama. The respondents indicated that they had gained more understanding of albinism as a result of the interventions, and were positive about this type of education. The current study shows that a radio show in which the listener interacts with someone with albinism can contribute to a reduction in stigma, and demonstrates that different types of radio intervention can have different outcomes.

Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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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.

Breaking down barriers to travel. Championing disability inclusive and accessible travel

AYLING-SMITH, Verity
December 2020

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Inclusivity is a key element to exceptional travel experiences – enabling individuals all over the world to experience diverse countries, cultures and opportunities. Yet often, disability inclusion is not at the forefront of travel products and services.

This report will support travel providers to understand why disability inclusion matters to the industry whilst celebrating and learning from providers already striving to be more inclusive through their innovative practices

 

To gather stories and examples of best practice from within the travel industry, we developed a “Call for Case Studies” survey which was distributed to both Leonard Cheshire and Expedia Group’s networks. From these submissions, we selected examples which highlighted innovative practice and represented our key themes of the report

How can innovative partnerships make data stronger and more inclusive?

WELLS, Claudia
SABITI, Bernard
CARANZA TRESOLDI, Javier
October 2020

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Development Initiatives (DI) Director of Data Use Claudia Wells, Senior Strategic Partnerships & Engagement Manager Bernard Sabiti and Founder and Director of the GeoCensos Foundation Javier Carranza Tresoldi explore the power of partnerships to improve data. Looking at the benefits, challenges and nuances of collaboration between all kinds of actors, they share case studies of what works and practical advice to build strong partnerships. 

Inclusion Counts: Disability Data Tracker. A data collection and advocacy guideline for Organisations of Persons with Disabilities (Spotlight on work and employment)

ADAMS, Lisa
October 2020

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This guideline is intended to be a tool for Organisations of Persons with Disabilities (OPDs) and their allies on how to advocate for the rights of persons with disabilities within the global development framework known as the Sustainable Development Goals (SDGs). The guideline is intended to be used as an advocacy tool for OPDs to engage with government, development agencies and other civil society actors on the implementation of the SDGs in line with the UN Convention on the Rights of Persons with Disabilities (CRPD). The thematic focus of this guideline is work and employment. The guideline will explore how the right to work and employment of persons with disabilities can be applied to the SDGs. In particular, this guideline will look at how the rights enshrined in CRPD Article 27 (Work and employment) can be addressed within SDG 8 (Decent Work and Economic Growth). 

Lymphatic filariasis in Uganda: Knowledge, attitudes and practices

DIXON, Ruth
October 2020

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This knowledge, attitudes and practices (KAP) study aimed to assess the KAP relating to lymphatic filariasis (LF) morbidity and morbidity management (MMDP) in Uganda in order to plan large-scale interventions.

The objectives for the study were to obtain baseline data on KAP regarding LF morbidity and its management; to establish current efforts in specific districts/regions to address morbidity and its management; and to assess the anticipated acceptance of interventions and identify potential barriers. The study used mixed methods including a quantitative household survey and qualitative key informant interviews and focus group discussions with people living with chronic conditions related to LF.

Guidance for including people with disabilities in responses to the COVID-19 pandemic. Guidance for development partners

PREGEL, Andrea
LE FANU, Guy
May 2020

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Practical guidance is provided for development partners to develop disability inclusive responses to the COVID-19 pandemic during the emergency phase of the COVID19 pandemic. In the immediate- and long-term response to the pandemic, it is vital that all development partners take steps to strengthen health systems that are disability-inclusive.

 

Topics include: intersectionality; assessing gaps and needs; engaging people with disabilities and DPO's; accessible and inclusive communications; healthcare and essential services; livelihoods and social protection; education; independent living and housing; and evidence generation.

Opening the GATE: systems thinking from the global assistive technology alliance

LAYTON, Natasha
BELL, Diane
BUNING, Mary Ellen
CHEN, Shih-Ching
CONTEPOMI, Silvana
RAMOS, Vinicius Delgado
HOOGERWERF, Evert-Jan
INOUE, Takenobu
MOON, Inhyuk
SEYMOUR, Nicky
SMITH, Roger O
DE WITTE, Luc
2020

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Purpose: 

This paper describes international actions to collaborate in the assistive technology (AT) arena and provides an update of programmes supporting AT globally.

 

Methods: 

The World Health Organisation (WHO) identifies the severe global uneven distribution of resources, expertise and extensive unmet need for AT, as well the optimistic substantial capability for innovations and developments in appropriate and sustainable AT design, development and delivery. Systems thinking and market shaping are identified as means to address these challenges and leverage the ingenuity and expertise of AT stakeholders.

 

Results: 

This paper is a ‘call to action’, showcasing emerging AT networks as exemplars of a distributed, but integrated mechanism for addressing AT needs globally, and describing the Global Alliance of Assistive Technology Organisations (GAATO) as a vehicle to facilitate this global networking.

 

Conclusion:

 Partners in this Global Alliance aim to advance the field of assistive technology by promoting shared research, policy advocacy, educating people and organisations within and outside the field, teaching, training and knowledge transfer by pulling together broad-based membership organisations.

COVID-19: How to include marginalized and vulnerable people in risk communication and community engagement

UN WOMEN
TRANSLATORS WITHOUT BORDERS
March 2020

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Recommendations for inclusion of marginalised and vulnerable groups in risk communications and community engangement are made. Groups considered are: children; people with disabilities; women and girls; pregnant women; persons living with HIV; gender based violence survivors; refugees and migrants; elderly; people in existing humanitarian emergencies; people with pre-existing medical conditions; sexual and gender minorities; ethnic minorities.

Bridging the mobile disability gap in refugee settings

DOWNER, Matthew
September 2019

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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

TIGERE, Brian
MAKHUBELE, Jabulani C.
September 2019

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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

IASC TASK TEAM ON INCLUSION OF PERSONS WITH DISABILITIES IN HUMANITARIAN ACTION
July 2019

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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

Disability inclusion helpdesk; evidence digest issue 1, June 2019

SDDirect
June 2019

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The Evidence Digest aims to capture knowledge emerging from Helpdesk activities in a systematic manner and disseminate findings. This short summary will:

Share information on and learnings from the Disability Inclusion Helpdesk over the last quarter, highlighting headline messages and implications for programmers and policymakers;
Share relevant information and learning from other DID outputs;
Provide relevant information on recent evidence, policy changes and events in the field of disability inclusion, and;
Raise awareness on how to access the Helpdesk and demonstrate its offer.

Agriculture and mobile-based interventions for smallholder farmers: best practice on disability inclusion, Disability Inclusion Helpdesk Research Report No. 14

AHLENBÄCK, Veronica
LEE, Harri
COE, Sue
May 2019

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This rapid review addresses the questions: What is current best practice in addressing disability and including people with disabilities within agricultural development programming? What is current best practice in mobile agriculture programming (i.e. mobile-based interventions targeted at smallholder farmers) to include smallholder farmers with disabilities as well as empower them and address key barriers they are facing? 

Guidance on strengthening disability inclusion in Humanitarian Response Plans

PERRY, Stephen
LANGE, Kirstin
MITRA, Gopal
WOOD, Gavin
April 2019

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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

CII launches the India Business Disability Network, a unique platform for companies to enable inclusion

ILO Global Business and Disability Network
February 2019

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The Confederation of Indian Industry (CII) launched the India Business Disability Network (IBDN) at the National Conference on ‘Mainstreaming Inclusivity & Accessibility – Enabling Industry’ in Delhi on 21 January 2019.

The IBDN is a National Business and Disability Network that promotes and facilitates an inclusive, accessible and a barrier-free workplace within the corporate sector, and set up in joint partnership with the International Labour Organisation (ILO) and the Employers’ Federation of India (EFI). IBDN is a one stop solution to share learnings and best practices, create context-based solutions, facilitate partnerships, facilitate inclusion, and create & dissemination knowledge

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