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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.

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.

Deaf people in Pacific Island countries. A design for the Pacific deaf strenthening program

JENKIN, Elena
WATERS, Philip
SEN, Krishneer
ADAM, Robert
2019

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Pacific Disability Forum (PDF) is committed to advancing the rights of people with disabilities living in Pacific Island Countries (PICs). Developing an evidence base to understand more about deaf children and adults’ experiences and priorities will better assist communities, DPOs, organisations and governments to plan inclusive communities, policy and programs.

 

The development of the design was deliberately planned to be highly collaborative and the team met with 161 people who shared their views. This provided opportunities for deaf people and DPOs to contribute to the design, along with representatives from government, non-government and regional organisations. This collaboration occurred in three countries in the Pacific, namely Solomon Islands, Samoa and Fiji. Within Fiji, the design team met with deaf and DPO representatives of other PIC’s along with regional multi-lateral organisations such as UNICEF and the Pacific Island Forum Secretariat (PIFS). Consultations also occurred remotely with supporting organisations and development workers that are focused on disability inclusion in the Pacific. The design undertook a desk review to learn what is known about deaf children and adults in the Pacific region. Participatory methods ensured the process was highly respectful of the views of deaf people. DPOs, other organisations and governments will be asked to identify to what extent deaf children, adults and their families are participating in services, programs and establishments, and to identify potential supports required to increase deaf people’s participation.  A capacity building element has been carefully built into the design. The report is divided into three parts. Part A rationalizes the design, with background information and a brief desk review to collect evidence from and about deaf children and adults in the Pacific. Part B describes the design development process and reports findings. Part C details the design for the situation analysis.  

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

Community Action Research in Disability (CARD): An inclusive research programme in Uganda

HARTLEY, Sally D
YOUSAFZAI, AK
KAAHWA, MG
FINKENFLÜGEL, H
WADE, A
BAZIRAKE, G
DRACHLER, ML
SEELEY, J
ALAVI, Y
MATAZE, W
MUCURNGUZI, E
2017

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The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.

 

The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.

 

CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.

Participatory and emancipatory approach in disability research. Possible allies for supporting active citizenship, civil rights and actions of social innovation.

TRAINA, Ivan
August 2016

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Participatory and emancipatory approaches in disability research are addressed through three research questions related to: the extent the participatory approach can encourage an active citizenship paradigm for the involvement of disabled people; the extent emancipation through research can contribute to the affirmation of a civil rights model of disability; and the extent it is possible to consider these approaches as tools that can support the design and implementation of socially innovative actions. The paper considers the academic literature and a reviews international documents, assuming a disability perspective

Considering Disability Journal. DOI: 10.17774/CDJ12015.2.2057584

"I see that it is possible": Building capacity for disability inclusion in gender-based violence programming in humanitarian settings

Women's Refugee Commission
International Rescue Committee
May 2015

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While humanitarian organizations are increasingly recognizing women and girls with disabilities in policies and guidelines, there are still significant gaps in operationalizing this. Their needs and capacities are often under-represented in gender, protection and disability forums. Furthermore, organizations of women with disabilities, which can play a critical role in bridging the development/humanitarian divide, are not meaningfully included in humanitarian coordination and decision-making.

This report documents findings and recommendations from a participatory action research project on disability inclusion in GBV programming in humanitarian settings, conducted with communities affected by crisis and conflict.

This toolkit was created with the input and participation of persons with disabilities, as well as GBV practitioners,
over the course of the project. It is intended to support GBV staff to build disability inclusion into their work, and
to strengthen the capacity of GBV practitioners to use a survivor-centered approach when providing services to
survivors with disabilities. The tools are designed to complement existing guidelines, protocols and tools for GBV
prevention and response, and should not be used in isolation from these. GBV practitioners are encouraged to
adapt the tools to their individual programs and contexts, and to integrate pieces into standard GBV tools and
resources.

Through our eyes

HANDICAP INTERNATIONAL
November 2014

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This video was made with children from Rwanda, Burundi and Kenya in 2014, in the context of a child participation activity within the “Ubuntu Care project: confronting sexual violence against children with disabilities in Rwanda, Burundi and Kenya”, implemented by the NGO Handicap International and its partners. The initiative brought disabled children together to start discussing their experiences and the cameras became an outlet for the children and members of the community to share their stories and raise awareness about important issues about confronting sexual violence against children with disabilities

Note: dialogue is in French with an option for English subtitles

Take us seriously! Engaging children with disabilities in decisions affecting their lives

LANSDOWNE, Gerison
et al
June 2013

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UNICEF’s work on disability is based on a human rights approach, with a focus on equity. It has been developed within the framework of inclusive development, and actively promotes the social model of disability. A central tenet is that legislation, policies and programmes must be informed and shaped by the children they will affect. Participation is a foundational principle of a rights-based approach. These guidelines are meant to strengthen the capacity of UNICEF and partners in creating opportunities for children with disabilities to exercise their right to be heard and taken seriously.

It is important to:

  • clearly identify obstacles impeding the participation of children with disabilities;
  • examine why participation is important for children with disabilities;
  • provide practical guidance on how and where to reach out and engage children with disabilities more effectively and systematically;
  • prioritize ways to measure the effectiveness of participatory initiatives with children with disabilities. 

What should come after the millennium development goals? : voices from the South

POLLARD, Amy
et al
2010

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Focusing upon what should come after the millennium development goals, this paper "seeks to broaden the conversation, and ensure that the voices of those directly involved in fighting poverty in the South are heard. (The) research describes the perspectives of 104 representatives from civil society organisations, in 36 developing countries from across the world. Data was collected using a questionnaire, qualitative interviews and a workshop"

Inclusive local development : how to implement a disability approach at local level

PLANTIER-ROYON, Eric
November 2009

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This policy paper outlines Handicap International's mandate and values in the field of the inclusive local development. It presents the organisation's actions, choices and commitments in the area of local inclusive development, and provides the six main components of projects. Future possibilities and potential limitations are also highlighted. This policy paper is useful to people who have an interest in disability rights and inclusive local development initiatives

A new weave of power, people & politics : the action guide for advocacy and citizen participation

VENEKLASEN, Lisa
MILLER, Valerie
March 2007

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This comprehensive action guide provides an approach for building people’s participation and collective power that goes beyond influencing policy and politics to transforming public decision-making. It offers easily adaptable 'modules' for NGOs trainers, activists, grass-roots organisations, who wish to develop ideas around advocacy. One of the strengths is that it focuses on peoples participation and explores ideas relating to power and politics in citizen-centred advocacy. It emphasises power and constituency-building discussed through the lens of gender/race/class and is based upon the concrete experiences of social change worldwide
It also offers facilitators tips, sample exercises and easily adaptable handouts, along with core information to support anyone through the learning process. Based on long-term experience of a range of practitioners, the guide provides well-tested methods for promoting citizen participation and practical ways of realising a rights-based approach.
The contents, chapters 1, 3, 5, 10 and 13 can be accessed electronically

What children and youth think Malawi : a statistical presentation of opinions and perceptions of children and youth in Malawi, 2006

AFRICAN CHILD POLICY FORUM
UNITED NATIONS CHILDREN'S FUND EASTERN AND SOUTHERN AFRICA REGIONAL OFFICE (UNICEF-ESARO)
2006

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This report is part of the pilot to a continent-wide poll of the views and perceptions of African children and youth . The results of the poll are intended to influence strategies, policies and policy makers. The poll identifies some of the issues that children and youth consider as shaping their lives, the problems that they see as priorities for their rights and welfare, and areas where practical actions and programmes could improve, as well as to understand their perceptions of their role in decision-making by government and by civil society. It is also intended to offer a framework for similar polls in the future

What African children and youth think and feel : an opinion poll of children and youth in eastern and southern Africa

AFRICAN CHILD POLICY FORUM
UNITED NATIONS CHILDREN'S FUND EASTERN AND SOUTHERN AFRICA REGIONAL OFFICE (UNICEF-ESARO)
2006

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This is a summary of the findings of polls carried out in 8 countries in eastern and southern Africa on the opinions of children and youth as to their well-being, emotions and environment; their relationships with family and friends; their relationship with their communities, their countries and their leaders; and about their perceptions of the issues concerning them. The polls involved over 4,000 young people aged between 9 and 17

Ben ni walen : let’s agree and take action|Mobilizing for human rights using participatory theatre

SGANGA, Cristina
VISSER, Teun
2006

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"This Guide is a basic introduction to using participatory methods for exploring human rights issues with people in rural communities to encourage human rights organisations to adopt a long-term approach to raising human rights awareness Section I presents the background to the writing of the Guide and its context. It explains the approach proposed to mobilise rural communities, and it introduces the different components of participatory research and participatory theatre methodology. Section II contains information on the range of participatory theatre methods, and provides illustrative examples of how to use them to explore human rights issues with rural communities. Background information on the specific human rights issues used as examples is also included. The guide contains basic guidelines and suggestions rather than giving step-by-step directions on how to develop programmes, and users are encouraged to adapt the methods and adjust any part of the Guide to suit their own circumstances. This guide is useful for Human right organisations, theatre directors and group, and community development organisations"

Double burden : a situation analysis of HIV/AIDS and young people with disabilities in Rwanda and Uganda

YOUSAFZAI, Aisha
EDWARDS, Karen
2004

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This analysis was carried out by Save the Children UK after reports from the field suggested that disabled people were not accessing HIV prevention information or services, despite being at higher risk of infection. It outlines ways in which disabled people are not fully included in safer-sex communications: for instance blind people hear talk about condoms, but have never held one; the necessity to have a sign-language interpreter for deaf people compromises their right to confidentiality; young girls with disabilities are more likely to be raped and are less able to negotiate safe sex. It recommends the greater integration of disabled people into health and HIV communications and further research to develop disabled-friendly means of communication

Participation in sexual and reproductive well-being and rights

GORDON, Gill
CORNWALL, Andrea
2004

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This article looks at lessons learned and current practices around participatory work in the context of reproductive and sexual rights. It focuses, in particular, on participatory HIV prevention and care in a time of crisis; sexuality, poverty and development; participation, sexuality and gender; and on participatory planning agenda. The article warns about the risk of using participatory strategies to reinforce power structures and the status quo, but also highlights the benefits and the difference these approaches can make when used sensitively

Toolkits : a practical guide to monitoring, evaluation and impact assessment

GOSLING, Louisa
EDWARDS, Mike
2003

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This field-tested toolkit has been designed to measure the extent to which programmes make a difference. The 2003 edition of Toolkits has been extended with contributions from SCF and beyond. It describes participatory methodologies, such as mapping and focus groups. It is divided into three sections: underlying principles, practical questions and tools. This new edition brings these up to date and discusses the implications of adopting a human rights approach to development and the increased emphasis on partnership. There are new chapters on impact assessment, monitoring and evaluating advocacy, as well as two new tools - one for improving planning, evaluation, and impact assessment and one for stakeholder analysis

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