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How can we measure disability in research related to the COVID-19 response?

MACTAGGART, Islay
KUPER, Hannah
August 2020

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There is growing evidence that COVID-19 is disproportionally impacting the lives of people with disabilities. This includes evidence of the increased risk of severe outcomes of contracting COVID-19 amongst people with existing health conditions, including many people with disabilities. It also includes a wide range of other potential impacts such as: reductions or disruptions in non-COVID-19 health or rehabilitation services, the effects of shielding on isolation and mental health, the implications of social distancing on people who require carer support, and the impact on poverty, participation and wellbeing due to disrupted disability-inclusive development programmes.

 

Measurement of disability in research has historically been contested and a number of different tools exist. Clear guidance is needed on how to determine which tool to use to understand the situation of people with disabilities in different settings, and plan responsive and inclusive COVID-19 programmes and policies to support their needs. Good quality, comparable data on disability is essential for tracking the impact of the COVID-19 pandemic, as well as prevention and mitigation interventions, amongst people with disabilities. Such evidence is also imperative for tracking progress towards the Sustainable Development Goals, and UNCRPD compliance.

 

This evidence brief synthesises findings from a scoping review of ICF-compatible tools to measure disability in population-based surveys with a focus on LMICs (2018), protocols and research outputs from seven population-based surveys of disability across Asia, Africa and the Pacific, secondary analyses of the South African Census, US National Health Interview Survey and three Demographic and Health Surveys, reflections from global stakeholders in disability measurement (including the UN Flagship Report on Disability), and evidence compiled for the upcoming Global Disability Research Massive Open Online Course at the London School of Hygiene & Tropical Medicine

What do we know about how to support mental health and wellbeing during the COVID-19 pandemic from past infectious disease epidemics?

QURESH, Onaiza
SCHERER, Nathaniel
July 2020

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The question and the problem:

Symptoms of mental ill-health are common during widespread outbreak of an infectious disease, with high rates of depression, anxiety and post-traumatic stress disorder (PTSD) reported during recent epidemics, such as the recent Ebola crises and SARS-CoV-1. Elevated symptoms of mental ill-health are not limited to patients only, and are seen in healthcare workers, family members and indeed more widely across the general population. Early evidence coming from the COVID-19 pandemic demonstrates high rates of mental ill-health and mental health service provision is needed. This evidence brief summarises evidence on mental health support during COVID-19 and other recent pandemics, informing policy and practice during this crisis.

How can social protection responses to COVID-19 be made disability inclusive?

BANKS, Lena Morgon
HUNT, Xanthe
June 2020

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Question & problem

The COVID-19 pandemic and strategies essential for its containment are resulting in severe strains on economies, particularly in low- and middle-income countries (LMICs). These impacts will be felt most by groups already in or at risk of poverty, including the estimated 1 billion people with disabilities globally. Interventions to address the short- and long-term economic effects of the pandemic are urgently needed. Some countries have begun implementing or announced plans for interventions addressing the economic impacts of COVID-19, such as food assistance, emergency cash transfers, unemployment assistance or expansions to existing social protection programmes. As these programmes are developed, it is important to consider the extent to which their design and delivery is inclusive of people with disabilities. Failure to adequately include people with disabilities in this process will lead to widening inequalities.

The promise of equal education not kept: Specific learning disabilities – The invisible disability

GOW, Melanie A
MOSTERT, Yvonne
DREYER, Lorna
February 2020

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Background: This research is part of a larger project on the exploration of inequalities in South African higher education. This current study focussed on the implementation of policies to eradicate inequalities in an inclusive education system.

 

Objectives: This article aimed to establish the implementation of policy by researching the lived experiences of students with specific learning disabilities (SLDs) studying in the university.

 

Method: A qualitative, systematic review was employed as the research methodology. Original peer-reviewed qualitative studies published between 1994 and 2017 were systematically reviewed. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) was used to ensure rigorous reviews. The Critical Appraisal Skills Programme (CASP) was used to guide the process of critical appraisal of the selected articles which resulted in a total of 10 articles being selected for reviewing. The target population of this research comprised undergraduate students diagnosed with SLD. Semi-structured interviews were the main data collection tools used in the studies that were reviewed. Data from the selected articles were extracted and synthesised.

 

Results: The dominant themes that emerged from the review were: (1) fear of stigmatisation; (2) gaps in policy implementation; (3) experiences vary across departments; and (4) self-determination and family support as success factors.

 

Conclusion: An important aspect in the transformation of higher education institution is to ensure the closing of the disjuncture between policy and implementation in support of students with SLD.

 

 

African Journal of Disability, Vol 9, 2020 

How do we improve access to healthcare for people with disabilities?

HUNT, Xanthe
August 2019

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Gaining access to healthcare is often a challenge for people with disabilities in low- and middle-income countries. Part of this has to do with a general dearth of healthcare services in low-resource settings. But part of this difficulty has to do with structural, attitudinal, economic and social barriers to participation and healthcare which affect people with disabilities more than people without disabilities. This lack of access to healthcare is a problem because, in general, people with disabilities may need to access healthcare more frequently than people without disabilities. Full and equitable access to quality healthcare is a human right, and an important imperative of the global agenda. This evidence brief summarises what we know about how to improve access to healthcare for people with disabilities in low-resource settings.

What interventions are effective to support home-based carers?

HUNT, Xanthe
August 2019

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Question & problem

Many people with disabilities require the assistance of other people in order to go about their daily lives. In high-income countries, home-based carers are professional or para-professional workers who provide assistance to people with disabilities, in their homes. They are often well-trained, and remunerated for their services. However, individuals with disabilities in many low- and middle-income countries (LMIC) predominantly live with their family, and receive home-based care from family members. There are some stresses associated with giving care to others, and these include burnout, compassion fatigue, and an array of emotional and social consequences related to the caring role. The carers, too, need care. This evidence brief summarises what we know about how to support home-based carers, taking into consideration that these people, in LMIC, are often untrained, unpaid family members of the person for whom they are caring.

How do we ensure that children with disabilities are not bullied in school?

HUNT, Xanthe
August 2019

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Question & problem

Students with disabilities are bullied more often than their typically developing peers. Students in schools for children with disabilities may be victimized more often than students with disabilities in inclusive settings. Being bullied, which can take forms which are physical, verbal, indirect (relational, emotional, or social), and/or sexual, is associated with negative academic, social, and psychological outcomes for the victim. This evidence brief summarises what we know about how to prevent bullying of children with disabilities.

What works to improve educational outcomes of children with disabilities in school?

HUNT, Xanthe
August 2019

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Question & problem

For people with disabilities, a major determinant of social and economic outcomes in adulthood, is access to, and the adequacy of, education in childhood and adolescence. Yet, children with disabilities are less likely to be enrolled in, or complete, school. Further, there are substantial gaps in the evidence regarding what works to improve educational outcomes of children with disabilities in school. Educational outcomes, here include academic achievement, pass rates, and grade completion. Many studies measure child behaviour and proxy or distal outcomes in response to various interventions, but not actually how children with disabilities do in these domains. This is particularly the case in LMIC, where there is a dearth data about the effects of educational policies and practices on child educational outcomes.

How do we ensure that social protection assistance initiatives work for people with disabilities?

HUNT, Xanthe
August 2019

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Question & problem

Social protection systems and other financial assistance, including cash transfers and integrated benefits packages, may be important ways to facilitate the inclusion of people with disabilities in services and society. There is limited information, however, with regards to their impact in low- and middle-income settings. To understand how these programs work, it is important to recognise that there are disability-targeted entitlements, but people with disabilities may also be eligible for mainstream programmes aimed at other targeted groups, such as people of a certain socio-economic status. This evidence note summarises what is known about challenges faced by both of these types of initiatives, as well as evidence-based recommendations to strengthen them.

How do we provide mental health support to children with psychosocial disabilities in school?

QURESH, Onaiza
August 2019

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Question & problem

It is estimated that approximately 10-20% of children, adolescents and young people (under the age of 18) worldwide have a disabling mental health condition. Approximately two-thirds of the global youth population goes to school for a significant proportion of the day. The idea of delivering mental health support in the setting has gained prominence as a way to increase the coverage and accessibility of mental health support for children. While there is a wealth of evidence around school mental health approaches in HIC, there is limited information with regards to their impact in low- and middle-income settings. This evidence brief explores what has worked for the delivery of school mental health initiatives in diverse settings, as well as evidence-based recommendations to strengthen them.

What are the key considerations for including people with disabilities in COVID-19 hygiene promotion programmes?

WILBUR, Jane
HUNT, Xanthe
August 2019

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Question & problem

People with disabilities may be more likely to acquire COVID-19, and if infected may be more likely to experience serious symptoms, or die. Aside from those consequences of the pandemic related to morbidity and mortality, people with disabilities are often reliant on carers to aid with common daily tasks, and so social distancing measures may be unfeasible. Furthermore, safe water, sanitation and hygiene (WASH) services and facilities may be inaccessible to people with disabilities, and, in many settings, efforts to deliver services in a socially-distanced world have resulted in the roll out of digital or remote healthcare approaches which are sometimes not accessible or inclusive. One of the key interventions in response to the COVID-19 pandemic has been international attention, and improved funding, programming and media messaging in support of WASH. People with disabilities – who are most at risk of negative consequences of COVID-19 – most need access to such interventions. Yet, WASH access is considered to be one of the biggest challenges of daily life for many people with disabilities.

Disability Inclusion Helpdesk Report No: 15 : Mental health and psychosocial support (MHPSS) in Syria: concepts, reality and effectiveness of interventions

LEE, Harri
ZIVERI, Davide
PFEFFER, Lauriane
July 2019

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Summaries on the findings from the following queries:

Define mental health and psychosocial support (MHPSS) and intended outcomes of these interventions (at the global level).

What is the evidence on the nature of the problem and the scale of need for MHPSS services in Syria?

What is the evidence on effectiveness of MHPSS interventions in Syria?

Physical Disability, Rights and Stigma in Ghana: A Review of Literature

GRISCHOW, Jeff
MFOAFO-M’CARTHY, Magnus
VERMEYDEN, Anne
CAMMAERT, Jessica
2019

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Purpose: This is a survey of peer-reviewed articles focussed on the causes and consequences of stigma towards persons with physical disability in Ghana.

 

Method: After a systematic search of the online databases EBSCOhost, ProQuest, PubMEd and Web of Science for peer-reviewed articles on disability in Ghana, 26 articles were chosen for critical review.  The three main selection criteria were: the articles had to be peer-reviewed, they had to be based on interviews with Ghanaians in the field, and they had to discuss stigma and human rights.  For analysis, the content of the articles was grouped under two sections: major themes (human rights, causes of stigma, consequences of stigma) and policy recommendations (economics, medical services/healthcare, affirmative action, attitudes and awareness-raising, inclusion of cultural beliefs).

 

Results:   This review found that most of the studies attribute stigma to negative attitudes towards Ghanaians with disability, and many highlight beliefs among Ghanaians that disability is caused by spiritual and supernatural forces. The consequences, according to most authors, are social, economic and political exclusion. Policy recommendations include improving government policy, increasing funding for disability programmes, changing public attitudes, and paying attention to Ghanaian culture and tradition in designing disability interventions. While these are valid points, the authors of this paper are of the opinion that the literature also suffers from lack of a deep understanding of the historical and socio-cultural roots of supernatural beliefs in Ghana.

 

Conclusion: The 26 studies discussed in this review show that since 2006 very good work has been produced on disability in Ghana, especially by Ghanaian disability scholars.

 

It is hypothesised, however, that a full understanding of disability and stigma in Ghana must be based on deeper research into the roots of the beliefs that drive stigma.  Future work therefore should focus on deepening the analysis of cultural beliefs towards disability in Ghana, in order to understand fully the roots of culturally-based disability stigma. More research into the economic causes and consequences of disability is also recommended, without which a full analysis of cultural stigma will not be possible.

Training Needs of Community-based Rehabilitation Workers for the Effective Implementation of CBR Programmes

VUUREN, Julia Mary Jansen-van
ALDERSEY, Heather Michelle
2019

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Purpose: This review investigates the training needs of Community-Based Rehabilitation (CBR) workers that would enable them to effectively facilitate CBR programmes. Emphasis was placed on identifying: (a) the skills that CBR workers require (b) the training currently available for them, and (c) the gaps in current training.

 

Method: A scoping review was conducted using on-line database searches (Medline, Embase, Cinahl, PsycInfo, Global Health) for English articles from 2006 onwards. A combination of keywords related to CBR, personnel, and training were applied. Hand searches of reference lists and the DCID journal were also conducted. Grey literature related to training, from the World Health Organisation (WHO), CBR Regional Networks and organisations affiliated with CBR were included as secondary data. Thirty-three articles and thirty-five sources from the grey literature were included. Data was organised under the three objectives outlined above – i.e., required skills, available training and training gaps.

 

Results: CBR workers represent a diverse group requiring a broad range of skills. A new cadre of mid-level workers is also necessary to effectively implement the CBR guidelines. There is currently no standardised training for CBR workers and training varies widely, depending on context. CBR workers require further training in various clinical, social, management, communication, and cultural competence skills across the spectrum of the CBR Matrix, and specifically in empowering persons with disabilities and facilitating community development. They also need to develop critical reasoning, creativity, and compassion.

 

Conclusion: A standardised approach to training CBR workers would be beneficial to ensure basic standards and quality services, to allow meaningful comparison and evaluation across contexts, to recognise the role of mid-level CBR workers, and to strengthen the workforce. Further research is required to determine minimal competencies, define the roles of various CBR workers, and evaluate the effectiveness of training.

Impact of parenting a child with cerebral palsy on the quality of life of parents: A systematic review of literature

RAMANANDI, Vivek H
PARMAR, Trupti Rudra
PANCHAL, Juhi Kalpesh
PRABHAKAR, M M
et al
2019

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Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child’s functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors.

 

Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.

 

Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents’ competence and resources so that they are better able to cope with the demands of parenting their children.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

No One Left Behind: A review of social protection and disability at the World Bank

KARR, Valerie L
VAN EDEMA, Ashley
SIMS, Jacob
BRUSEGAARD, Callie
2017

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The 2030 Agenda for Sustainable Development cites poverty eradication as both the ‘greatest global challenge’ and an ‘indispensable requirement’ for sustainable development (UN, 2015). Unfortunately, the path between discourse and practice is rarely clear. This is especially true for the estimated one billion people with disabilities around the globe who face barriers and challenges to inclusion in mainstream development efforts; and for whom disability-specific projects and interventions are far and few between. This paper responds to the lack of available data focused on tracking the inclusion of persons with disabilities in mainstream poverty reduction efforts. It reports on work by a multidisciplinary research team in developing and piloting a methodology measuring disability inclusive investments in the World Bank’s active portfolio. The paper focuses specifically on the World Bank’s social protection portfolio, aligned with SDG 1 (End Poverty), and outlines a methodology for analysing project-level documentation, using key word searches, and codes aligned with the Sustainable Development Goals to determine the inclusion of persons with disabilities. Findings indicate that only a small percentage, 5%, of the World Bank’s active social protection portfolio explicitly include persons with disabilities as target beneficiaries. It goes on to argue that this dearth in disability inclusive development efforts exposes a vital need to systematically include the needs of this population in the planning for, provision of, and assessment of development assistance efforts. The paper concludes with a set of recommendations for ensuring future projects are inclusive from program development and implementation through to assessment of outcomes.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

Disability and social protection programmes in low- and middle-income countries: a systematic review

BANKS, Lena Morgon
MEAKLE, Rachel
MACTAGGART, Islay
et al
2016

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“This paper systematically reviews the evidence on whether persons with disabilities in low- and middle-income countries are adequately included in social protection programmes, and assesses the financial and non-financial impacts of participation. Overall, we found that access to social protection appears to fall far below need. Benefits from participation are mostly limited to maintaining minimum living standards and do not appear to fulfil the potential of long-term individual and societal social and economic development. However, the most notable finding of this review is that there is a dearth of high-quality, robust evidence in this area, indicating a need for further research.”

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