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Participation in Practice: Examples of inclusive action for a “Participation Revolution”
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Humanitarian organizations and donors have committed to change the way humanitarian action is carried out and create a “Participation Revolution.” In this webinar issues addressed included:
- inclusion of the people and communities affected by humanitarian crises in practice;
- how organizations are ensuring that the voices of the most vulnerable groups considering gender, age, ethnicity, language, and special needs are heard and acted upon;
- how program activities and budgets are designed to support the changes that affected people demand
In this webinar, organized on 26 March 2020 by PHAP and the Steering Committee for Humanitarian Response, we took stock of the progress to date on workstream six of the Grand Bargain and heard success stories from the field that can help agencies achieve a sustained change in how they design and deliver their programs.
A full transcript is available. Webinar registrants were asked to provide what they thought, in their context, was the most important factor enabling participation in practice and what they thought was the most important factor preventing participation in practice. Answers are provided in an Annex.
How can we promote the inclusion of people with disabilities in programme design? - Evidence brief
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In order to fully encapsulate the principles of ‘Nothing About Us without Us’ within development efforts, a strong knowledge base from programmes worldwide is needed to identify effective ways to promote the meaningful inclusion of people with disabilities in the design and delivery of programmes.
Development programmes need to move beyond passive consultations and seek meaningful engagement from people with disabilities from the early stages of programming right till the end so that the solutions and lessons learned are inclusive and representative for people with disabilities worldwide.
What are the key considerations for including people with disabilities in COVID-19 hygiene promotion programmes?
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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.
Online Parent Training: A Pilot Programme for Children with Autism and Neurodevelopmental Disabilities in Bangladesh
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Purpose: This study aimed to assess the implementation of an online parent training programme in Bangladesh, designed to enhance parental knowledge of autism and neurodevelopmental disorders and related interventions. In addition, study participants were expected to become “Master Trainers” with the intention of training other parents in their local communities.
Method: This survey study assessed parental knowledge and programme effectiveness, such as potential online learning barriers, cultural sensitivities, and general course content feedback after each unit.
Results: The programme had an 81% completion rate (with parents completing all but one unit) with an average programme knowledge score of 86%. Parents felt that the course content was moderately difficult, the length of the units was appropriate, and the units were culturally sensitive. They requested more detailed lessons, specific case studies, and adaptation of the curriculum for older children.
Conclusion: The pilot programme merits the next phase of development, which includes local adaptation and translation. However, the findings are limited by the small sample size.
Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people
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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.
Cost-effectiveness of a Community-based Rehabilitation Programme in Nepal
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Purpose: This study aimed to estimate the cost-effectiveness of a community- based rehabilitation (CBR) programme known as Inspire2Care (I2C), implemented in Nepal by Karuna Foundation Nepal. In the absence of any gold standard methodology to measure cost-effectiveness, the authors developed a new methodology to estimate the programme’s achievements and cost-effectiveness.
Methods: Financial records were reviewed to determine total expenditure during the period August 2011 - December 2013. Programme records which documented the physical, mental and social status of children and adults with a disability qualitatively before, during and after the intervention were used to determine a starting disability weight and improvement score, which was then converted into a change in disability weight. The disability weight and expected remaining lifespan of each person were used to estimate disability-adjusted life years (DALYs) averted by the intervention. The cost per DALY averted was estimated by dividing the total programme expenditure by the sum of DALYs averted over that same period.
Results: I2C cost 204,823 Euros to implement over the period August 2011- December 2013. In total, an estimated 1,065 DALYs were averted from the treatment and rehabilitation components. The cost per DALY averted was 192.34 Euros.
Conclusions and Implications: The methodology devised for the study was able to successfully estimate the cost-effectiveness of the I2C programme. Using WHO benchmarks, this programme can be considered highly cost-effective. Other organisations can assess the cost-effectiveness of their programmes by using the assessment improvement score and subsequent conversion to DALYs averted. However, while mental, physical and social gains have been captured, other benefits from I2C cannot be captured in the cost per DALY averted statistic. Further research is needed to develop methods for incorporating these harder-to- measure gains in cost-effectiveness studies with a single outcome measure like the DALY.
Learning from doing the EquitAble project: Content, context, process, and impact of a multi-country research project on vulnerable populations in Africa
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Background: The ‘EquitAble’ project carried out content analyses of policies and collected and analysed qualitative and quantitative data concerning access to health services in Sudan, Malawi, Namibia and South Africa. Our particular concern was to address the situation of people with disabilities, although not in isolation from other marginalised or vulnerable groups.
Objectives: This article reports on the content, context, process and impact of project EquitAble, funded by the European Commission Seventh Research Framework Programme, which brought together researchers from Ireland, Norway, South Africa, Namibia, Sudan and Malawi.
Method: After the 4-year project ended in February 2013, all members of the consortium were asked to anonymously complete a bespoke questionnaire designed by the coordinating team. The purpose of the questionnaire was to capture the views of those who collaborated on the research project in relation to issues of content, context, process and impact of the EquitAble project.
Results: Our results indicated some of the successes and challenges encountered by our consortium.
Conclusion: We identified contextual and process learning points, factors often not discussed in papers, which typically focus on the reporting of the ‘content’ of results.
Violence Against Persons with Disabilities in Bidar District, India
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Violence and sexual violence against persons with disabilities at community level are serious issues. Though CBR programmes and DPOs are expected to prevent violence and offer support to the victims, there is very little informationabout their role in this regard.
Purpose: This research aimed to assess the level of violence and sexual violence experienced by DPO members, and the role played by CBR programmes in preventing it.
Method: The study involved a non-random consecutive sample of 146 persons with disabilities from 3 sub-districts of Bidar district in Karnataka, India. Using a structured questionnaire, interviews were conducted by a group of trained DPO members and CBR workers, many of whom had personal experience of violence. The data was entered using Epi-Info and then converted into spreadsheet Tables for analysis.
Results: 58% of the sample reported having experienced violence and 14% reported experiences of sexual violence during the previous 12 months. Girls and women reported higher levels of violence at different age groups. Male children and young adults reported having experienced more violence, including sexual violence, than older men. The research did not provide conclusive evidence that participation in the CBR and DPO activities played a protective role.
Conclusions: Violence and sexual violence against persons with disabilities are serious problems. More research on the subject, in terms of roles of CBR programmes and DPOs, is needed.
Empowerment in Community-based Rehabilitation and Disability-inclusive Development
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Purpose: This paper seeks to contribute to discussion on the understanding and measurement of empowerment of people with disabilities in developing countries. A novel, text analysis approach was used to depict the way in which empowerment is characterised in conventional measures in Western settings. This was then compared with depictions and analyses of the way in which empowerment is characterised in documents that have more relevance to developing countries.
Method: First, computer-based content and concept analysis was applied to three key empowerment measures. This was compared with analysis of responses to a recent online survey of empowerment conducted by the United NationsDepartment of Economic and Social Affairs (UN-DESA). Visual representations in the form of “word clouds” were generated to depict key concepts within each data source. Second, to provide specific detail regarding how empowerment has been described in documents which relate to developing countries, more detailed computer-assisted lexical analysis was performed on the text of responses to the UN-DESA survey, and on the text of the Empowerment component of the CBR Guidelines.
Results: Initial “word clouds” illustrated considerable discrepancy between concepts inherent in the three most relevant empowerment measures when compared with responses to the UN-DESA survey relating to empowerment in a development context. Subsequent lexical analysis depicted greater specificity and ranked the concepts associated with empowerment in key disability and development-related documents.
Conclusions: Conventional Western measures of individual empowerment may not adequately encompass the broader social, economic and community orientation of empowerment as described in documents from disability and development circles. Further research is required to substantiate these novel and speculative indications.
The influence of HIV/AIDS on community-based rehabilitation in dar es salaam, Tanzania
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Community-Based Rehabilitation (CBR) is the method of choice for delivering services for people living with disabilities in many countries. HIV/AIDS is changing the daily lives of many women by adding to their responsibilities. How realistically can such women participate actively in community development activities like CBR? This paper examines the impact of HIV/AIDS on CBR in Dar es Salaam, Tanzania. Observational sessions and individual interviews were conducted with caregivers of children with disabilities, CBR workers and managers over a three month period. Among the findings was a significant decrease in CBR activities in families affected by HIV/AIDS. This change in family priorities was due to better knowledge of acute diseases and increased stigma of HIV/AIDS in comparison to disability. Older CBR workers were more likely to incorporate elements of HIV/AIDS care with CBR, while younger CBR workers were more likely to avoid HIV/AIDS support. The ability of CBR workers to adapt their working habits to an environment with high HIV/AIDS prevalence is linked to their sense of skill competence and their knowledge/beliefs about risk of infection. Further integration of CBR work with general health development initiatives may improve this situation.
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