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What fails: and what's not needed, Disability Dongles

HOLLOWAY, Catherine
LANDRE, Anna
September 2023

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Presented at the Disability Innovation Summit: Inclusive Interactions conference organised by the GDI hub on 13 Sept 2023.

 

A discussion concerning disability dongles (expensive technical solutions to disability problems without sufficient design input from disabled people - examples include a stair climbing wheelchair and an exoskeleton). Setting up networks of disabled people to input requirements, contextualisation of issues (for example the lack of repair facilities for wheelchairs especially in the global south), telemedicine, and the difficulties in appropriate funding for appropriate projects are discussed.

  

Inclusive client responsiveness: Focus on people with disabilities and older people

INTERNATIONAL RESCUE COMMITTEE (IRC)
July 2021

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Humanitarian actors recognize the lack of standard practice on the inclusion of older people and people with disabilities in humanitarian response as a current and critical gap in the sector. In recent years, the humanitarian sector has begun to more intentionally address these challenges. In response, the IRC has developed this Inclusive Client Responsiveness Guidance, which aims to address gaps in the IRC’s Client Responsive Programming specifically to strengthen inclusion of people with disabilities and older people. The Guidance consists of three sections to support staff in strengthening inclusion of people with disabilities and older people using the IRC’s Client Responsiveness approach:

Key concepts for designing inclusive feedback mechanisms such as accessibility and reasonable accommodation, to ensure that barriers are addressed, and feedback mechanisms are designed to be accessible to all.

Selection and design of inclusive feedback mechanisms that foster diversity and inclusion.

Monitoring access to feedback mechanisms of people with disabilities and older people through appropriate data collection and analysis.

The guidance also includes a set of resources for practical implementation, which are referenced throughout the document

Exploring Critical Issues in the Ethical Involvement of Children with Disabilities in Evidence Generation and Use

THOMPSON, Stephen
CANNON, Mariah
WICKENDEN, Mary
2020

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This research brief details the main ethical challenges and corresponding mitigation strategies identified in the literature with regard to the ethical involvement of children with disabilities in evidence generation activities. Evidence generation activities are defined as per the UNICEF Procedure for Ethical Standards in Research, Evaluation, Data Collection and Analysis (2015), as research, evaluation, data collection and analysis. The United Nations Convention on the Rights of the Child (art. 12) states that children have the right to form and express views freely in all matters affecting them and that the views of the child must be given due weight in accordance with her/his age and maturity.

 

The United Nations Convention on the Rights of Persons with Disabilities (art. 7) states that children with disabilities must enjoy human rights and freedoms on an equal basis with other children, and that they have a right to express their views freely and should be provided with assistance where necessary to realize that right. The two conventions in general, and these two articles specifically, frame this research brief, which aims to encourage practitioners to explicitly consider ethical ways to involve children with disabilities in evidence generation.

 

The findings detailed in this summary brief are based on a rapid review of 57 relevant papers identified through an online search using a systematic approach and consultation with experts. There was a paucity of evidence focusing specifically on the ethical challenges of involving children with disabilities in evidence generation activities. The evidence that did exist in this area was found to focus disproportionately on high-income countries, with low- and middle-income countries markedly under-represented.

Research for all: making research inclusive of people with disabilities

CBM-NOSSAL PARTNERSHIP FOR DISABILITY INCLUSIVE DEVELOPMENT
RESEARCH FOR DEVELOPMENT IMPACT NETWORK
July 2020

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Developing programs to be inclusive of people with disabilities ensures that all people benefit. Acknowledging and understanding the lived experiences of people with disabilities is essential in changing the paradigm that development programs ‘do to’ or ‘do for’ a specific vulnerable and marginalised portion of the community. It addresses issues of equity and of development effectiveness.

 

This guidance provides tools and resources for practitioners, researchers and policymakers for any and all forms of research, or evaluation with human participants, to ensure best-practice. This guide is for ensuring that all people with disabilities within the population or community are not excluded (either purposefully or accidentally, through poor planning or inexperience) in doing development research or evaluation. The guide is not specifically designed for those doing research or projects solely focusing on people with disabilities.

 

This guide is divided into three sections for addressing and implementing good practice in development research.

 

Section One sets out the fundamental principles and ethical considerations of disability-inclusive development (DID) research. This includes an overview of the rights-based approach to disability, and its guidance in shaping development.
Section Two discusses the ethical considerations for designing inclusive research questions and methods, including when working with children with disabilities. This involves enabling and obtaining informed consent.
Section Three details the key steps and processes for ethically involving people with disabilities throughout the four main phases of the research process: planning, design, implementation, and dissemination.

Validation of the International Classification of Functioning, Disability and Health (ICF) core set for Diabetes Mellitus from nurses’ perspective using the Delphi method

WILDEBOER, Anita T
STALLINGA, Hillegonda A
ROODBOL, Petrie F
May 2020

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Purpose: To explore content validity of the ICF core set for Diabetes Mellitus from nurses’ perspective.

 

Materials and methods: A two-round Delphi study was conducted with nurses specialized in diabetes care, who were recruited by purposive sampling. Level of agreement on relevance of ICF categories was calculated using Item-level Content Validity Index.

 

Results: Twenty-seven nurses judged 147 second-level ICF categories on relevance for people with Diabetes Mellitus. Agreement was reached on 65 (44.2%) categories, of which 46 were from the ICF core set for Diabetes Mellitus, 17 were from previous validation studies, and two were additional categories that were mentioned as relevant. Forty-six out of the 65categories were derived from the component body functions and structures. No agreement was reached on 82 (55.8%) categories, of which 33 were derived from the component environmental factors.

 

Conclusions: Content validity of the ICF core set for Diabetes Mellitus was partially supported by specialized nurses. Agreement was predominantly reached on biomedical categories. Content validity of categories derived from environmental factors received little support.

 

Relevance: The nursing profession should be aware of a gap between the current biomedical focus and the desired biopsychosocial approach; the latter of which is recommended in chronic care.

Disability inclusion helpdesk; evidence digest issue 2, December 2019

SDDirect
November 2019

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Produced by the Disability Inclusion Helpdesk. A summary of the latest evidence on disability inclusion in international development from programmes and researchers around the world are highlighted:

·         Access to health: the missing billion

·         Sexuality and disability for children and youth in China

·         Analysing INGO practice 

·         Disability and technology

·         Disability and inequality in Liberia 

·         Pregnancy, childbirth and motherhood in Nepal 

·         Violence against women and girls with disability in Nepal

 

Brief overviews are provided of policy and news from the UK, various UN organisations, Asia Pacific Social Protection Week and South Africa.

 

Brief updates of DFID's (UK Departments for International Development) funded programmes are given including: Disability Inclusive Development (DID) Programme; Inclusion Works; The Disability Catalyst Programme; Programme for Evidence to Inform Disability Action (PENDA), Innovating Pathways for Employment Inclusion (IPEI)

Report on accessibility audit in Kathmandu, Nepal

December 2018

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In Nepal, the Accessible Physical Infrastructure and Communication Services directive for People with Disability 2013, is a key legal measure taken by the government for promoting accessibility. To supplement the government’s initiation in achieving the goal of making inclusive society for all, National Federation of the Disabled – Nepal (NFDN), in partnership with CBM, carried out accessibility audit of 150 public infrastructures as a model initiative. This included government buildings, public parks and open spaces, roads and streets, corporate sectors, commercial sectors and other infrastructures within Kathmandu valley and identified the remedial actions needed to make these sectors accessible for all including Persons with disabilities. To achieve this, a set of comprehensive audit tools and checklists were developed. The Kathmandu district, Lalitpur District and Bhaktapur District were assessed.

Challenges and priorities for global mental health in the Sustainable Development Goals (SDG) era

ACADEMY OF MEDICAL SCIENCES
June 2018

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Published in 2011, the Grand Challenges in Global Mental Health initiative provided a framework to guide the research needed to improve treatment and prevention of mental health disorders and expand access to mental health services. At the Academy’s workshop on global mental health participants reflected on progress since 2011, focusing on specific life-course stages, and identified priorities for research in treatment and prevention, as well as enduring challenges and emerging opportunities

The role of indigenous and external knowledge in development interventions with disabled people in Burkina Faso: the implications of engaging with lived experiences

BEZZINA, Lara
2018

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This paper explores the significance of engaging with the lived experiences of disabled people in countries like Burkina Faso in order to implement long-lasting and beneficial development. It looks at the way disability was conceived of in pre-colonial times and how knowledge imported from the colonisers conflicted with, and continues to influence today, indigenous knowledge in Burkina Faso. Although Burkina Faso obtained its independence from European colonisers over fifty years ago, disability as a terrain for intervention continues to be colonised by international non-governmental organisations (INGOs) that frame their approaches in western models, which are not necessarily applicable in countries like Burkina Faso. In a context where the predominant view of disability is that of disabled people being an economic burden, many disabled people in Burkina Faso feel the need to prove themselves as economically independent; and yet development agencies often do not engage with disabled people’s voices when designing and implementing development programmes. This paper argues that there is a need to engage with disabled people’s lived experiences and knowledges through processes such as participatory video which create spaces where marginalised people’s voices can be heard and listened to by the development agencies that influence disabled people’s lives.

 

Disability and the Global South, 2018, Vol.5, No. 2

Social relationships, mental health and wellbeing in physical disability: a systematic review

TOUGH, Hannah
SIEGRIST, Johannes
FEKETE, Christine
May 2017

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The aim of this study is to systematically review quantitative studies exploring associations of social relationships with mental health and wellbeing in persons with physical disabilities. The objective is to summarise a complex and heterogeneous body of empirical research on the association of different social relationship constructs with mental health and wellbeing in physical disability and to highlight conceptual and methodological deficiencies in the field of research. The literature search included original articles published in English between January 1, 1995 and May 31, 2016. Data was extracted on study and participants’ characteristics, independent and dependent variables, used measures and effects sizes of associations between social relationships and mental health or wellbeing. A narrative review was performed to synthesise findings along the constructs social support, social networks, negative social interactions, family functioning and relationship quality.  Of the 63 included studies, 47 were cross-sectional and 16 longitudinal.

BMC Public Health (2017) 17:414 

DOI 10.1186/s12889-017-4308-6

Disability & the Global South (DGS), 2017, Vol. 4 No. 1 - Special issue: Disability in the Sustainable Development Goals: Critical Reflections

2017

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Articles include:

  • Editorial: Disability and the SDGs: is the battle over?
  • Entering the SDG era: What do Fijians prioritise as indicators of disability-inclusive education?
  • SDGs, Inclusive Health and the path to Universal Health Coverage
  • No One Left Behind: A review of social protection and disability at the World Bank
  • The capacity of community-based participatory research in relation to disability and the SDGs
  • Measuring Disability and Inclusion in relation to the 2030 Agenda on Sustainable Development

Disability, CBR and inclusive development (DCID)

2016

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"Disability, CBR and Inclusive Development aim to enhance knowledge in the field of disability, addressing the needs of practitioners in the field (particularly those from developing countries), policy makers, disabled persons’ organizations and the scientific community. The journal encourages publication of information that is evidence-based, to improve current knowledge and programmes implementation, and will be openly and freely accessible to all readers" ”Published four times a year, previously published two times per year
Free

OPERA framework

July 2016

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"A guiding lens for CESR's national enforcement work, the OPERA framework allows an assessment that triangulates outcomes, policies and resources to provide a much fuller picture of what a state is doing to promote the realization of specific rights. Importantly, it traces economic and social deprivations and disparities back to the actions or omissions of the state, to make the case that they constitute an injustice and a violation of human rights."

Interventions for children affected by armed conflict: a systematic review of mental health and psychosocial support in low- and middle-income countries

JORDANS, Mark. J. D.
PIGOTT, Hugo
TOL, Wietse A
January 2016

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Over one billion children under the age of 18 live in countries affected by armed conflict. This systematic review replicates an earlier study, aiming to provide a comprehensive update of the most current developments in interventions for children affected by armed conflict. For the period 2009– 2015, a total of 1538 records were collected. Twenty-four studies met the inclusion criteria, and the included interventions involve data from 4858 children. Two types of analysis were conducted. First, for an account of intervention descriptions, thematic analysis was used to summarise themes, with a specific focus on cultural adaptations. Second, all evaluation studies reporting quantitative data were categorised into level of evidence (1 = randomized controlled trials, all types; 2 = quasi-experimental design and controlled studies; 3 = non-controlled design; 4 = case studies) 

Current Psychiatry Reports, vol 18 (9), doi:10.1007/s11920-015-0648-z

Using participatory and creative methods to facilitate emancipatory research with people facing multiple disadvantage: a role for health and care professionals

KRAMER-ROY, Debbie
2015

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Participatory and creative research methods are a powerful tool for enabling active engagement in the research process of marginalised people. It can be par- ticularly hard for people living with multiple disadvantage, such as disabled peo- ple from ethnic minority backgrounds, to access research projects that are relevant to their lived experience. This article argues that creative and participa- tory methods facilitate the co-researchers’ engagement in the research process, which thus becomes more empowering. Exploring the congruence of these meth- ods with their professional ethos, health and care professionals can use their skills to develop them further. Both theory and practice examples are presented.

Community based rehabilitation for people with disabilities in low and middle income countries : a systematic review

IEMMI, Valentina
et al
September 2015

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This Campbell Collaboration systematic review assesses the effectiveness and cost-effectiveness of community-based rehabilitation (CBR) for people with physical and mental disabilities in low- and middle-income countries, and/or their family, their carers, and their community. This review identified 15 studies that assessed the impact of community-based rehabilitation on the lives of people with disabilities and their carers in low- and middle-income countries. The studies included in the review used different types of community-based rehabilitation interventions and targeted different types of physical (stroke, arthritis, chronic obstructive pulmonary disease) and mental disabilities (schizophrenia, dementia, intellectual impairment). The authors conclude that the evidence on the effectiveness of CBR for people with disabilities in low- and middle-income countries suggests that CBR may be effective in improving the clinical outcomes and enhancing functioning and quality of life of the person with disabilities and his/her carer and recommend future studies will need to adopt better study designs, will need to focus on broader clients group, and to include economic evaluations

Campbell Systematic Reviews 2015:15

Studies and research at Handicap International : promoting ethical data management

BRUS, Aude
September 2015

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This guide explains the importance of ethical data collection and management. Using Handicap International’s decades experience implementing projects and programmes globally, the report highlights the impact of data collection and the importance of implementing ethical approaches in a variety of situations where data is being collected. It aims to raise the awareness of Handicap International’s operational and technical staff and their partners to the ethical questions to be considered when managing data (preparation, collection, processing, analysis and sharing of information). It reaffirms the ethical principles underpinning the organisation’s actions and concludes with eight ethical recommendations that are applicable to studies and/or research in our intervention settings

Evidence-based decision-making for funding allocations

DE GEOFFREY, Veronique
LEON, Valerie
BUERET,Alan
September 2015

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This is a study analyses a number of donors to explore how evidence-based information impacts decision making. The study aims to: (i) describe the current practices of a selection of donors in making decisions about resource allocation; (ii) identify the key factors that determine whether or not evidence is used; (iii) identify areas for further discussion among Good Humanitarian Donorship donors that could help strengthen evidence-based decision making. After analysing these three things, the study makes 11 recommendations for further discussion amongst donors 

Developing human rights based indicators to support country monitoring of rehabilitation services and programmes for people with disabilities : a study protocol

SKEMPES, Dimitrios
BICKENBACH, Jerome
September 2015

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This paper seeks to develop a study protocol that can assess and improve the provision of rehabilitation services for people with disabilities across the world. The research targets a knowledge gap that exists whereby there are no indicators to reliable identify the performance of rehabilitation systems and monitoring technologies. The paper provides a detailed analysis of the issue before outlining and justifying a choice of methods for data collection and analysis, and the likely impact and use of the study results

BMC International Health and Human Rights, 15:25

Understanding the interaction of competence standards and reasonable adjustments

HEWLETT, Katherine
NIGHTINGALE, Christine
STEVENS, Tony
July 2015

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“Higher education institutions (HEIs) have responsibility for developing non-discriminatory competence standards, and designing a study programme to address these competence standards. HEIs also have the responsibility to ensure that assessment methods address the competence standards. Adjustments to ways that competence standards are assessed may be required so that disabled students are not put at a disadvantage in demonstrating their achievement. This guidance aims to support HEIs meet these institutional and legal responsibilities, and promote disability equality” by providing information and examples on key areas. The guidance will be of use to all staff involved in developing and assessing competence standards

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