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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.

Pre-Primary and Primary Inclusive Education for Tanzania (PPPIET) – Foundation Phase : Report on Participatory Research to Inform Design of New Inclusive Education Model in Tanzania

JUDGE, Emma
June 2020

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The Disability Inclusive Development (DID) consortium, a UK Department for International Development (DFID) funded initiative, is working together on the Pre-Primary and Primary Inclusive Education in Tanzania (PPPIET) programme whose ultimate goal is to foster quality sustainable inclusive education for all children with disabilities at scale across Tanzania in mainstream pre-primary and primary government schools. To achieve this, it aims to support collective, coordinated systems change by establishing an agreed common model of basic inclusive pre-primary and primary education in mainstream government schools, and galvanising significant progress in spreading its systematic implementation for all children with disabilities across Tanzania. 

 

This task requires the cooperation of government, civil society and Disabled People’s Organisations (DPOs) to achieve real change.  No single organisation or government department can achieve inclusive education on its own. Pooling the skills and resources and exchanging learnings to achieve quality inclusive education of children can help all involved. Working together will build collective commitment and action, not just amongst DID consortium members but also across government, donors, education actors and the private sector. 

 

Part of this process was to conduct a participatory field research to gather evidence on the current provision of support services needed for inclusive education and identify gaps that need to be filled in the future. The exercise also served to identify key challenges that need addressing to facilitate the removal of legal, policy, systemic, physical, communication and language, social, financial and attitudinal barriers. The findings from the research were intended to identify the priority components that need addressing in the design of an inclusive education design model and the drivers of accountability, i.e. the agencies/stakeholders responsible for implementing the required system changes.

 

Summary of key findings

The Government of Tanzania has continually demonstrated its support and commitment to inclusive education evidenced by the many comprehensive policies for inclusive education, including the National Inclusive Education Strategy (NSIE) 2018 – 2021.  Through these policies, it is actively working to improve the educational environment but the journey is long and requires significant system changes for the policies to be effectively implemented, which needs collaboration, cooperation, planning, and strategic resourcing across multiple ministries, NGOs, DPOs, and the private sector. 

 

To achieve inclusive education, a rights-based approach to education needs to be adopted, focusing on identifying and removing the barriers to access and quality learning for every child, including appropriate infrastructure changes in schools, changing attitudes, and providing additional support to girls and boys with disabilities through learning support assistants.  There also needs to be a fundamental shift towards child-centred pedagogy in teacher training and curriculum development to meet the needs of all learners, including having a mandatory module on inclusive education in all teacher training curricula.  Over time, this will help develop teachers’ confidence and positive attitudes towards teaching children with disabilities and achieve impact at scale.  Strengthening the capacities of all teachers, improving classroom management, increasing awareness about inclusive education for all stakeholders, and improving access to screening and early identification, health, rehabilitation services, and affordable assistive devices are all contributing factors to achieving inclusive education in Tanzania.

 

Systems change to improve learning and support for children with disabilities takes time and requires a significant investment of resources and budget allocation by government and service providers.  However, inclusive education can be cost-effective compared with the cost of segregation and special schools, particularly where ministries work together to ensure a more ‘strategic allocation of existing funds, promoting universal design and co-operation agreements among multiple ministries’.   Developing partnerships with the private sector to improve the physical infrastructure of schools and access to affordable assistive devices can also help reduce the cost of inclusion.

 

Inclusive education is a cross-cutting issue that requires the commitment and accountability of multiple stakeholders across government ministries to ensure its effective implementation.  This includes the MOEST, MOHCDGEC, MOFP, the Prime Minister’s Office (PMO) and the President's Office, Regional Administration and Local Government (PORALG). 

 

It is anticipated that to achieve successful implementation and scaling up of the model design for inclusive education, there will need to be a systematic and phased approach to implementing the recommendations in this report over the short, medium and long term.  It is acknowledged that this process will take considerable time to implement and can only be successfully achieved over a period of years with the support and increased understanding of all stakeholders.  There is no quick-fix solution to inclusive education.  It requires changing long-established systems and adjusting services, including health and education, training, and attitudes.  There is also no financial short cut. 

 

However, while some recommendations require significant investment, others can be achieved in the current context without significant monetary investment.  For example, changing the curriculum for all teacher training to ensure inclusive education is included as a standard module will help transform the approach of teachers and the inclusion of children with disabilities in learning.  Raising awareness of inclusive education for all stakeholders, including policy-makers and implementers will also help increase understanding of the long-term system changes required and reduce stigma and discrimination.  Inclusive education can only be achieved in an inclusive society and it needs collective effort from the government, parents, community, and all stakeholders for effective implementation.

Children with Cerebral Palsy in Bangladesh: Their Contribution to the Development of a Rehabilitation Training Programme

ZUURMOND, Maria
MAHMUD, Ilias
HARTLEY, Sally
2019

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Purpose: Although cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, support and rehabilitation for this group is limited and intervention development is slow. An initiative to address these unmet needs was the development of a parent training programme for the rehabilitation of children with cerebral palsy. The aim of this study was to explore what was important in the everyday lives of children with cerebral palsy in rural Bangladesh and take their views into account in order to inform the parent/caregiver training programme.

 

Methods: Qualitative data was collected from12 children with cerebral palsy, between 5 - 14 years of age. The children were purposively selected from among those who attended the parent training programme. A participatory method called the ‘Feeling Dice’ was used to elicit children’s feelings about their everyday lives. The approach was easy to use, acceptable in the local context, the children enjoyed the activity, and it generated rich information.

 

Results: ‘Inclusion in play’ and ‘being able to attend school’ made the children happy and were their two main priorities, yet were not key issues for parents. The children were frustrated by their dependence on others for day-to-day activities such as feeding, bathing, and transport to school. Children also played an important part in encouraging their parents to attend the training course.

 

Conclusion: This study showed that valuable information can be gathered from children with cerebral palsy by using a simple and adaptable participatory research tool. Children’s views and priorities sometimes differed from those of their parents and carers, and could be useful for developing more relevant and valid interventions. Children need to be recognised as important ‘agents of change’ within their own rehabilitation. This methodology is in harmony with the UNCRPD recommendations, and supports inclusive and rights-based intervention development.

From the day they are born: a qualitative study exploring violence against children with disabilities in West Africa

NJELESANI, Bridget
et al
January 2018

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The qualitative study presented in this article describes the violence experienced by children with disabilities in Guinea, Niger, Sierra Leone, and Togo from the perspectives of children, community members, and disability stakeholders. The study contributes to the literature on violence against children with disabilities, which in West Africa is largely nonexistent. 

A qualitative study design guided data generation with a total of 419 children, community members, and disability stakeholders. Participants were selected using purposive sampling. Stakeholders shared their observations of or experiences of violence against children with disabilities in their community in interviews and focus groups


BMC Public Health 18:153 2018

https://doi.org/10.1186/s12889-018-5057-x

Growing Together. Child participation through the project journey. Management of a children’s club by the children themselves

HANDICAP INTERNATIONAL
December 2017

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An overview is presented of a project in Bangladesh, Pakistan and Thailand to:

  • To support communities in raising socially and emotionally healthy kids in refugee/IDPs camps and in host communities.
  • To create opportunities for children with disabilities and other vulnerable children (0-12 years old) including children at risk of developmental delays/psychological distress in displacement contexts, to learn and develop safely while having fun.
  • Using “play” as key driver to learn and develop safely children’s potential while having fun.

The project was implemented using:

  • Existing HI tools (Personalized Social Support, Adapted Physical Activity, etc.)
  • Tools piloted in IKEA project (Blue Box, low-cost toy making, inclusive playgrounds, Ideas box)
  • Environmental Footprint Assessment across 3 project sites

Monitoring & evaluation was carried out using techniques including

  • Scopeo (Sc-ore O-f Pe-rceived O-utcomes) Kids
  • Participatory M&E approaches (digital story telling, child-child video interview etc) 

Presented at the People at the centre Seminar, Dec 2017 

 

Working within the tensions of disability and education in post-colonial Kenya: Toward a praxis of critical disability studies

ELDER, Brent C
FOLEY, Alan
2015

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This paper explores emerging and evolving critical approaches to inclusive education development work in the postcolonial, global South context of Kenya. Taking an ontoformative (Connell, 2011) perspective of disability, we view disability as a dynamic process inherently tied to social contexts and their fluid effects on disabled bodies. Thus, not all impairments are a natural form of human diversity, and many are imposed on bodies in underdeveloped countries through oppressive imported Western practices. In this paper we present our work not as models of ‘what to do’ or ‘what not to do’ in development work. Rather we offer a reflection on the evolution of our understanding and approach to this work from being merely ‘progressive’ (while further exporting Northern theory), toward a more critical and self-reflexive approach. We hope this is a starting point in a dialogical process of mutual knowledge production between the global North and South that leads to better ways of conceptualizing and supporting people with disabilities in the global South.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 3

The Malawi key informant child disability project

TATARYN, Myroslava
et al
August 2014

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“The aim of this study was to use the KIM to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. The Key Informant Method (KIM) is a novel method for generating these data. KIM focuses on training community volunteers to identify local children who may have disabilities, who are then screened by medical professionals and referred on for appropriate health and rehabilitation interventions. Consequently, the method offers an alternative to population-based surveys of disability in children, which can be costly and time consuming”

The Malawi key informant child disability project : summary report

TATARYN, Myroslava
et al
August 2014

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This report provides a summary of research project conducted by the International Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine and the University of Malawi. The study used the Key Informant Method (KIM) to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. This report presents summary of the study’s background information, aims and objectives, key findings, conclusions and recommendations

Fostering and managing change in Algerian nurseries

DIDIER SEVET, Claudie
November 2011

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"This report describes lessons learned from Handicap International’s programme in Algeria which aimed to enhance full participation of people with disabilities and the situation of children deprived of family care"
SD/LL 05

Child protection psychosocial training manual

MEUWLY, Michelle
HEINIGER, Jean-pierre
O’CONNELL, Ruth
Eds
2008

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This manual "has been developed for use in the field in order to train animators who work with children and other child protection programme staff...The modules in this manual have been grouped according to the following 3 categories: 1. Facilitating a training, 2. Basic concepts for intervention, 3. Animator’s competencies. Each module is laid out under the following headings: What is it? Why is it useful? How can I use it?"

A strange illness : issues and research by children affected by HIV/AIDS in central China

SAVE THE CHILDREN CHINA
June 2005

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Report about the concerns raised by orphans and children affected by HIV/AIDS in an area of central China with a severe HIV/AIDS epidemic. The project was undertaken as a preliminary study for a longer programme of child-focused work in the area to provide care, support and reatmenr within the framework of child protection and child participation. It outlines how children define vulnerability and future work that will be developed on the basis of the research

Young children's participation : rhetoric or growing reality?

November 2004

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This special issue of Early Childhood Matters explores the topic of participation of young children. Some key articles present the analytical framework, exploring the relationship between child development and child participation. It is suggested that participation is not only a right but also an essential component of the development process, enabling children to learn to make informed decisions. Practical examples and field experiences from Mexico, Zimbabwe, The Netherlands, South Africa and Scotland are also included

Disability and HIV & AIDS : a participatory rapid assessment of the vulnerability, impact, and coping mechanisms of parents of disabled children on HIV & AIDS

NGANZI, Patrick
MATONHODZE, George
2004

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This study assesses the vulnerability, impact and coping mechanisms of parents of disabled children on HIV/AIDS and suggests strategies for developing an HIV and AIDS programme. Using participatory methodologies of inquiry, the study found that the parents of disabled children are at a higher risk of infection to sexually transmitted infections (STI) and/or HIV and that the risk increases as the parents try to cope with having a disabled child. Therefore, a disabled child in a family acts as one of the pre-disposing factors to the parents' infection and when an infection happens in a home, the quality of care for the very disabled child is compromised causing a vicious cycle of disability and HIV/AIDS at the household level.The study recommends that target-specific interventions should be designed and implemented for the parents of disabled children to address issues of HIV/AIDS and disability, empowerment and gender issues as well as sexual reproductive health

Creating space for children's participation : planning with street children in Yangon, Myanmar

DORNING, Karl
O'SHAUGHNESSY, Tim
2001

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This paper is about a two-week empowerment evaluation that took place in April 2001 with World Vision's Street Children and Working Children Program (SWC), which is based in Yangon, Myanmar. The process allowed the children to be the primary evaluators. They spent time interviewing various stakeholders in the programme and analysed the information gathered. The evaluation described in this report was an experience that had a great impact on all involved. It brought about a fundamental shift in the way project staff viewed the children and, equally importantly, in the way the children viewed themselves

Listening to children

SMALE, Jim
Ed
January 2000

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This edition focuses on participation by children of 0-7 years in the conceptualisation, implementation and evaluation of early childhood development programmes. Articles show how adults are taking the crucial steps in developing that participation: establishing environments and practices that enable young children to express themselves confidently and fully, and to develop some experiences in participation

Manual : psycho-social support of orphans

MADÖRIN, Kurt
1999

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This manual is a tool for trainers to train concerned community members to assist distressed children, and to facilitate their interventions on the level of awareness, knowledge, skills and behaviour in relation to orphans. Its stated objective is to enhance the capacity of adults to listen and talk to orphans and children of terminally ill parents, and to understand their situation and their needs. In this way the community improves its capacity to cope with some of the consequences of AIDS. In the manual there are 16 modules that rely on participatory methods, each with detailed instructions for the facilitator and a handout for participants. The manual was produced by the Humuliza (Community Based Mental Health for Orphans) project team

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