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Collaboration in Inclusive Research: Competencies Considered Important for People With and Without Intellectual Disabilities

EMBREGTS, Petri J C M
TAMINIAU, Elsbeth F
HEERKENS, Luciënne
SCHIPPERS, Alice P
VAN HOVE, Geert
2018

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With inclusive research being an emerging field of interest, there is growing recognition that establishing collaborative relationships between researchers with and without ID entails specific demands. However, since studies on collaboration in inclusive research merely provide individual reports on experiences and challenges in one particular research project, building a shared knowledge base of concrete competencies considered important for those involved merits attention. This study contributes to a shared knowledge base in asking people with and without ID with (experiential) knowledge of inclusive research for competencies they consider important in collaborating in inclusive research in general, that is, without reference to a specific research project they participated in. Researchers with and without ID, coaches, policy makers, and teachers involved in the education of people with ID participated in this study. Data were collected from a focus group, individual interviews, and expert meetings. Qualitative analysis was carried out

immediately after each moment of data collection, providing the use of increasing insights in each consecutive phase of data collection. Participants describe that establishing collaborative relationships between researchers with and without ID in inclusive research requires the commitment of both parties. They mentioned concrete competencies they consider important for people with and without ID to collaborate in inclusive research in the categories: building a mutual relationship, communicating, achieving a collaboration in which everyone involved can contribute, being aware of skills and developmental needs, and being aware of impact. Clearly, describing competencies for people with and without ID is not intended to exclude anyone who does not possess these competencies from collaboration in inclusive research. However to avoid “tokenism,” this study might contribute to effective participation of people with ID in inclusive research in providing concrete competencies considered important in collaboration.

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.

Exploring Knowledge and Attitudes towards HIV/AIDS among Deaf People in Ghana

MPRAH, W K
2013

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Purpose: By exploring the level of knowledge about HIV/AIDS and attitudes towards persons with HIV/AIDS among deaf people in Ghana, this article aims to identify and correct possible gaps in awareness.

 

Method: A participatory sexual and reproductive health (SRH) needs assessment was conducted, targetting deaf people who were fluent in the Ghanaian Sign Language (GSL). The study design was a two-phase, sequential, mixed methods approach. Three focus groups assisted in the development of a survey, which was then implemented for needs assessment data collection. The 179 study participants consisted of 26 focus group participants, 152 survey respondents and 1 key informant. Of the focus group participants, 7 were executives of Ghana National Association of the Deaf (GNAD), 10 were adult males, and nine were adult females. Apart from the key informant, all the participants were deaf persons.

 

Results: The study indicated that many respondents still had misconceptions about HIV/AIDS and had difficulty identifying preventive methods, but their attitudes towards persons with HIV/AIDS was generally positive.

 

Conclusion: More attention needs to be paid to the requirements of the deaf community and to designing HIV/AIDS programmes and services that are deaf-friendly and accessible.

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

Vision 2020 : the right to sight. Developing an action plan to prevent blindness at national, provincial and district levels

VISION 2020
LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE (LSHTM)
2003

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VISION 2020 is a joint initiative by the WHO and the International Agency for the Prevention of Blindness, which intends to eliminate avoidable blindness (eg caused by cataract, refractive errors, trachoma, vitamin deficiencies, diabetic retinopathy and glaucoma) by the year 2020. The strategy of VISION 2020 is built upon the foundation of community participation. VISION 2020 has the following objectives: implementation of disease control interventions; development of human resources and development of infrastructure. This CD-ROM serves as a toolkit for countries and organisations that want to enforce a VISION 2020 action plan to combat blindness at the national, provincial and/or district level. Relevant background information for planning exercises are provided in the form of reports from expert committees, scientific articles, manuals, guidelines, software packages, websites, and contact addresses. [Abstract courtesy of CAB International]

Developing materials on HIV/AIDS/STIs for low-literate audiences

FAMILY HEALTH INTERNATIONAL (FHI)
PROGRAM FOR APPROPRIATE TECHNOLOGY AND HEALTH (PATH)
December 2002

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This manual provides a comprehensive methodology for developing materials for a low-literate audience in the context of a behaviour change communication program. It demonstrates the process of learning about target populations using qualitative research methodologies, developing effective messages with thir input, and crafting visual messages to support the overall HIV and AIDS program. Involving the target population and stakeholders in the development process is key to ensuring high-quality effective print materials. Finally, the guide outlines the process for rigorous pretesting to ensure that the information and issues are understood by the population groups that programs are trying to reach and influence. It can be adapted and used to develop audio-visual materials or materials for other target groups

Locally generated printed materials in agriculture : an experience from Uganda and Ghana

CARTER, Isabel
1999

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This report examines the usefulness of locally generated information material to (near-) subsistence level farmers in Uganda and Ghana. It questions the assumption that non-literate farmers do not benefit from information material and shows the variety of vectors and strategies that communities use to disseminate new knowledge. It examines the conventional theoretical and practical bases for the provision of information and contrasts these with practice at community level. The starting point for the report is a survey of Footsteps readership by Tearfund. Footsteps is a widely disseminated newsletter on community development, aimed at near-subsistence level farmers. It seeks to provide farmers with printed agricultural information in their own language and appropriate for their situation

Communications and development : a practical guide

BURKE, Adam
1999

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DFID guide to development communications in three sections: background (channels of communication, rights, participation, implications to poor people and civil society); guide to implementing development communications (including forming a strategy, planning, using mass media, building capacity); guide to different media (drama/performance, mass media, ICT)

Enabling education network (EENET)

EENET

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This extensive website focusing on inclusive education is regularly updated, primarily with publications written by people working and living in the South. The website’s resources database covers a wide range of themes including: action research and image-based methodologies, early childhood, emergencies, deafness, gender, parents, policy, teacher education, among others. The website also contains EENET’s newsletters, plus event and job vacancy announcements.
The website is also available from EENET as a CD-ROM

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