Resources search

Using a community-based participatory research (CBPR) approach to explore economic empowerment for youth with disabilities in rural Uganda

GREENWOOD, Margo
BECHANGE, Stevens
EMONG, Paul
KYOSABA, Winnie
NSSAJA, David
THE PEERS RESEARCHER TEAM
August 2023

Expand view

This paper presents findings from a community-based participatory study exploring the lived experiences and key livelihood changes post-intervention of a vocational skills training for young people with disabilities in rural Uganda. Twenty-four youth with disabilities (13 female, 11 male) who had previously taken the vocational training were trained to become peer researchers and conducted 72 in-depth interviews with a more recent cohort of youth with disabilities. 

 

Social Sciences & Humanities Open, Volume 8, Issue 1, 2023, 100647

https://doi.org/10.1016/j.ssaho.2023.100647

Experiences of lower limb prosthesis users in Kenya: a qualitative study to understand motivation to use and satisfaction with prosthetic outcomes

MATTICK, Kate
OLDFREY, Ben
DONOVAN-HALL, Maggie
MAGOMERE, Grace
GAKUNGA, Joseph
HOLLOWAY, Catherine
December 2022

Expand view

An estimated 1.5 million people undergo limb amputation each year [1]. Low- and middle-income countries (LMICs) are projected to have a rapid increase in people living with an amputation in the coming years due to prevalence of non-communicable disease, trauma and conflict. This paper explores the personal and system factors that motivate and enhance outcomes for patients accessing a prosthetic service and using a lower-limb prosthesis within a low resource setting.

This study employed a qualitative approach to explore the motivations and satisfaction of individuals with lower limb loss engaging with a prosthetic service in Mombasa, Kenya. In-depth interviews were conducted over Microsoft Teams with 10 lower limb prosthesis users and thematic analysis was applied.

 

Disability and Rehabilitation Volume 45, 2023 - Issue 26

https://doi.org/10.1080/09638288.2022.2152875

"We bear it and accept our fate” Perceptions of healthcare access from people with disabilities in Cox’s Bazar

PANELLA, Amanda
June 2022

Expand view

In November and December 2021, Ground Truth Solutions (GTS) and the International Organisation for Migration’s (IOM) Needs and Population Monitoring unit (NPM) conducted qualitative interviews with persons with mobility and vision impairments from Rohingya refugee and host community populations with the aim of better informing and supporting agencies in developing disability-inclusive programmes and engagement activities. These interviews focused on access to health services, aiming to gain insight into how people with disabilities experience engaging with healthcare services – as well as perceived barriers to access. It also looked at health information needs so that the humanitarian community will be better equipped to identify gaps in programming, deliver more equitable services, and build trust with this marginalised group. To weave tangible experiences into the narrative and bring findings to life, this research took a ‘user journey’ approach to create a set of ‘personas’ derived from key informant interviews with Rohingya and Host Community people with disabilities in Cox’s Bazar, resulting in this highly illustrative report.

The community-based actions that removed barriers to inclusive education in Kenya

ELDER, Brent C
PAYNE, Mbuh
OSWAGO, Benson
2021

Expand view

This article represents a culmination of inclusive education projects implemented in western Kenya since 2010. In this article, we discuss the 2018 iteration of this on-going community-based participatory research (CBPR)-informed project in which we utilised multiple theoretical frameworks to inform our methods in this project, including decolonising methodologies and Critical Disability Studies (CDS). We conducted qualitative interviews as a way to learn about the ways in which inclusion committees facilitated the partial removal of barriers to the development of an inclusive education system in the region over the last decade. In this article, we provide an overview of the barriers to inclusive education in the global South and sub-Saharan Africa, with a particular focus on western Kenya. We present findings that highlight the various inclusion committee actions that contributed to the partial removal of barriers which included: sensitising communities about inclusive education; promoting access to inclusive education; and implementing inclusive strategies like income generating activities (IGAs) and co-teaching. We conclude the article by suggesting potential ways forward for inclusive education in Kenya including: a multi-sector approach for family supports; providing government incentives to inclusive schools; and promoting IGAs and co-teaching practices in teacher education programs and in schools.

Disability, stigma & the role of innovation - Disability innovation live

AUSTIN, Vicki
CAREW, Matthew
MIRZOYANTS, Anastasia
BARBARESCHI, Giulia
August 2020

Expand view

This webinar focussed on the role of stigma in preventing disability inclusion, and what enables it to be overcome, focused on innovative and creative methods

The speakers talked about:

  • Culture, Paralympic legacy & how innovation can change mindsets
  • Stigma research incorporating the perspectives of persons with disabilities & disability inclusive research processes
  • Kenyan youth & the perception of people with disabilities
  • Assistive technology, identity & the role of innovation

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

THOMPSON, Stephen
CANNON, Mariah
WICKENDEN, Mary
2020

Expand view

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.

Preparedness of civil society in Botswana to advance disability inclusion in programmes addressing gender-based and other forms of violence against women and girls with disabilities

HANASS-HANCOCK, Jill
MTHETHWA, Nomfundo
MOLEFHE, Malebogo
KEAKABETSE, Tshiamo
2020

Expand view

Background: In low-income and middle-income countries women and girls with disabilities are more likely to experience violence than those without disabilities. Non-governmental organisations (NGOs) and disabled people’s organisations (DPOs) can help to address this. However, in countries like Botswana we know little about the preparedness of NGOs and DPOs to increase inclusion in and access to programmes addressing violence.

 

Objectives: To explore the capacity and preparedness of NGOs and DPOs to ensure that women and girls with disabilities can participate in and access programmes addressing violence.

 

Methods: A qualitative study was undertaken using interviews with 17 NGOs and DPOs in Botswana to understand the organisations’ level of and ability to deliver programmes addressing violence against women and girls.

 

Results: Both NGOs and DPOs lack elements of universal design and reasonable accommodation, and thus are inaccessible to some people with disabilities. Some programmes address violence against women but lack skills and resources to accommodate people with disabilities. In contrast, DPOs work with people with disabilities, but lack focus on violence against women with disabilities. Participants identified opportunities to fill these gaps, including adaptation of policies and structural changes, training, approaches to mainstream disability across programmes, development of disability-specific interventions and improved networking.

 

Conclusions: Botswana’s NGOs and DPOs are well positioned to address violence against women and girls with disabilities, but need to increase their accessibility, staff knowledge and skills and disability inclusion. Training, resource allocation and participation of women with disabilities in NGOs and DPOs is needed to drive this change.

 

 

African Journal of Disability, Vol 9, 2020

Human-centred design in humanitarian settings: Methodologies for inclusivity

HAMILTON, Zoe
CASSWELL, Jenny
ALONSO, Aline
July 2020

Expand view

This report documents the human-centred design process used in a project conducted in 2020 in Nairobi, Kenya. It includes research tools that can be used in other contexts, as well as the adaptations that were made to research tools to ensure they were inclusive. These tools are followed by the main lessons learned, and recommendations for others who want to implement a similar process.

The goal of this project was to better understand how people living with disabilities in humanitarian contexts use mobile technology, the barriers they face in accessing mobile services, and the opportunities that mobile might present to increase access to basic services in their daily lives. The target population for this project was urban refugees living with visual or hearing impairments in Nairobi, Kenya. 

The human-centred design tools used included: Location Mapping, User Journeys, Communication Mapping, Future Me and Daily Diaries. 

Let’s Talk about COVID-19 and disability. An interactive radio campaign on the livelihoods of people with disabilities in Uganda

LIGHT FOR THE WORLD
July 2020

Expand view

In April 2020, Light for the World teamed up with NGO TRAC FM to find out how COVID-19 has affected people with disabilities in Uganda. Through free SMS, basic mobile phone technology and radio talk shows, TRAC FM reaches out to the most remote and excluded people – including people with disabilities. It enables the most marginalised to debate about policies that concern them directly.

From 22nd of April to 19th of May 2020, they worked with TRAC FM to air four polls on Let’s Talk, a specially created radio show. Broadcast on five local stations across the country, the show asked listeners how they were faring under Uganda’s lockdown. An average of just under 13,000 people responded to each poll question, giving rise to reflections captured in this report that should have wider resonance beyond Uganda.

Findings presented include:

  • Concerns during the COVID-19 lockdown
  • Knowledge and awareness on coronavirus
  • Effect of the lockdown on mental health
  • Effect of the lockdown on livelihoods 

Research for all: making research inclusive of people with disabilities

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

Expand view

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.

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

Expand view

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.

Decolonizing inclusive education: A collection of practical inclusive CDS- and DisCrit-informed teaching practices implemented in the global South

ELDER, Brent C
MIGLIARINI, Valentina
2020

Expand view

In this paper, we present a collection of decolonizing inclusive practices for elementary education that we have found effective when implementing them in postcolonial countries. The choice and implementation of such practices was informed by the intersectional and interdisciplinary theoretical framework of Critical Disability Studies (CDS) and Disability Critical Race Theory in Education (DisCrit), and guided by decolonizing methodologies and community-based participatory research (CBPR). The main purpose of this paper is to show how critical theoretical frameworks can be made accessible to practitioners through strategies that can foster a critical perspective of inclusive education in postcolonial countries. By doing so, we attempt to push back against the uncritical transfer of inclusion models into Southern countries, which further puts pressure on practitioners to imitate the Northern values of access, acceptance, participation, and academic achievement (Werning et al., 2016). Finally, we hope to start an international dialogue with practitioners, families, researchers, and communities committed to inclusive education in postcolonial countries to critically analyze the application of the strategies illustrated here, and to continue decolonizing contemporary notions of inclusive education.

 

Disability & the Global South (DGS), 2020, Vol. 7 No. 1

Easy Reading Handbook

EDLER, Cordula
et al
2020

Expand view

Easy Reading is a software tool supporting cognitive accessibility of web content. We want to enable people with cognitive disabilities to better read, understand and use all webpages. Our objective is to make webpages more accessible for everyone. The handbook provides information on joint research with people with cognitive disabilities, researchers and developers. In the Easy Reading project, people with learning difficulties research and develop as peer researchers.

Impact of Covid-19 on the lives of people with disabilities. Insight and stories from Bangladesh and Kenya

i2i INNOVATION TO INCLUSION
January 2020

Expand view

In April and May 2020 the Innovation to Inclusion (i2i) programme, supported disabled persons organisations (DPOs) to complete a qualitative survey of 312 people with disabilities (including 147 women) in Bangladesh and Kenya to understand the impact of COVID-19 and measures to prevent its spread. The survey - a descriptive survey with a representative sample of people with physical, intellectual and multiple disabilities, visual and hearing impairments and mental health issues in the Nairobi, Mombasa and Kasumu areas of Kenya and in the Dhaka, Sylet and Chattogram districts of Bangladesh - has been part of wider efforts by DPOs in the two countries to test and embed data driven advocacy processes towards realising CRPD.   

 

Topics covered included: employment and job insecurity; access to general pulic information; PPE; access to support; assistive tecnology and discrimination

Amplifying the voices of women and girls with disabilities in Zimbabwe

UNESCO OFFICE HARARE
LEONARD CHESHIRE DISABILITY (ZIMBABWE)
AFRICA COMMUNITY RESEARCH AND DEVELOPMENT CENTRE
2020

Expand view

This qualitative study on the aspirations, needs and concerns of women and girls with disabilities in Zimbabwe seeks to contribute to the growing knowledge on women and girls with disabilities globally, as well as to contribute to the ongoing dialogue on advancing the implementation of the CPRD in Zimbabwe

 

The specific aims were to:

  • Assess the demographic and socioeconomic characteristics of women and girls with disabilities
  • Identify the aspirations of women and girls with disabilities from marginalized areas
  • Describe the needs and concerns of women and girls with disabilities for equitable participation in public life
  • Assess how current development interventions are responding to the needs of women and girls with disabilities, specifically SRH and GBV services delivery
  • Hear from women and girls with disabilities on practical recommendations for the advancement of disability rights and improving justice, SRH and GBV service delivery that meets their needs

 

The approach and methodology were designed with a view to gathering first-hand information and verbatim from an estimated 261 women and girls with disabilities, and from other stakeholders interviewed in marginalized areas, namely caregivers, OPDs, NGOs, traditional leaders, community cadres, and government officials. The study design was also guided by a range of participatory approaches that enabled women with diverse disability types to effectively participate in the qualitative study.

Optimising the performance of frontline implementers engaged in the NTD programme in Nigeria: lessons for strengthening community health systems for universal health coverage

OLUWULE, A
et al
November 2019

Expand view

This research article focuses on optimising the performance of frontline implementers engaged with NTD programme delivery in Nigeria. Three broad themes are examined: technical support, social support and incentives

Qualitative data was collected through participatory stakeholder workshops. Eighteen problem-focused workshops and 20 solution-focussed workshops were held  in 12 selected local government areas (LGA) across two states in Nigeria, Ogun and Kaduna States

 

Human Resources for Health, 2019 Nov 1;17(1):79

doi: 10.1186/s12960-019-0419-8

A university’s response to people with disabilities in Worcester, Western Cape

MÜLLER, Jana V.
NED, Lieketseng
BOSHOFF, Hananja
October 2019

Expand view

Background: The call for institutions of higher education to foster interaction with communities and ensure training is responsive to the needs of communities is well documented. In 2011, Stellenbosch University collaborated with the Worcester community to identify the needs of people with disabilities within the community. How the university was engaging with these identified needs through student training still needed to be determined.

 

Objectives: This study describes the engagement process of reciprocity and responsivity in aligning needs identified by persons with disability to four undergraduate allied health student training programmes in Worcester, Western Cape.

 

Method: A single case study using the participatory action research appraisal methods explored how undergraduate student service learning was responding to 21 needs previously identified in 2011 alongside persons with disability allowing for comprehensive feedback and a collaborative and coordinated response.

 

Results: Students’ service learning activities addressed 14 of the 21 needs. Further collaborative dialogue resulted in re-grouping the needs into six themes accompanied by a planned collaborative response by both community and student learning to address all 21 needs previously identified.

 

Conclusion: Undergraduate students’ service learning in communities has the potential to meet community identified needs especially when participatory action research strategies are implemented. Reciprocity exists when university and community co-engage to construct, reflect and adjust responsive service learning. This has the potential to create a collaborative environment and process in which trust, accountability, inclusion and communication is possible between the university and the community.

 

 

African Journal of Disability, Vol 8, 2019

‘Whose agenda? Who knows best? Whose voice?’ Co-creating a technology research roadmap with autism stakeholders

PARSONS, Sarah
YUILL, Nicola
GOOD, Judith
BROSNAN, Mark
2019

Expand view

Technologies play vital roles in the learning and participation of autistic people and yet have mostly been conceptualised according to a medical model of disability. In this stakeholder review, the comments of 240 participants from a two-year seminar series focusing on autism and technology were analysed to co-construct an understanding of how research could develop more inclusively. Our socio-cultural analysis shows that stakeholders were very positive about the roles that technologies can play in many areas of life, but that these technologies need to be developed and evaluated according to the needs and preferences of autistic people and their families. We propose an inclusive common social framework for research based on the core themes of social inclusion, perspectives, and participation and agency. Such a framework requires the field to recognise that some current practices are exclusionary and that a commitment to action is needed in order to make positive changes.

Making it count: The power of youth advocates in the disability movement

WILM, Suzanne
LEONARD CHESHIRE
HANKS, Phil
May 2019

Expand view

The 2030 and Counting pilot project sought to give youth with disabilities a seat at the table on the SDGs – providing them with the tools and confidence they need to become their own agents of change. This report provides an overview of the project, together with learnings and recommendations for the future.

In its pilot year, 2030 and Counting brought together young women and men with disabilities and DPOs from Kenya, the Philippines and Zambia to report on and advocate for their rights through the framework of the SDGs

The project had three consecutive phases: Training, Story gathering (data collection) and Influencing. 

In total, 332 reports were collected between June and September 2018. The highest number of reports were submitted under the theme of Education (44%), followed by Work (33%), and Health (14%). The category of Other, which almost entirely focused on discrimination in daily life, accounted for 8%. 80% of reporters had smartphones, offering the potential to increase the use of this feature in future.
 

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

ZUURMOND, Maria
MAHMUD, Ilias
HARTLEY, Sally
2019

Expand view

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.

Pages

E-bulletin