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Participation in Practice: Examples of inclusive action for a “Participation Revolution”

March 2020

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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.

Online collective identities for autism: The perspective of Brazilian parents

ANTUNES, Debora
DHOEST, Alexander
2018

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The importance of online communities for parents of people with disabilities has been discussed by many scholars in the fields of Digital and Disability Studies, showing, for instance, the importance of social support and the formation of social ties. In order to contribute to this scholarship, this paper explores how collective identity models are built and circulated by parents of autistic people in one of the biggest Brazilian online communities about the subject, ‘Sou autista… conheça o meu mundo’ (I am autistic…get to know my world). The results were obtained through a digital ethnography, based on participant observation and an exchange of information with the members of the community studied. Based on the data collected, the study concludes that the collective identity models that circulate in this community can be grouped into legitimising, resistant, and project identities, as postulated by Castells (2010). The different views reflect how parents see autism and represent the ways it is treated in Brazilian society.

 

Disability and the Global South, 2018 Vol.5, No. 1

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.

The promise and the reality: a mental health workforce perspective on technology-enhanced youth mental health service delivery

ORLOWSKI, Simone
LAWN, Sharon
MATTHEWS, Ben
et al
October 2016

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Digital technologies show promise for reversing poor engagement of youth (16–24 years) with mental health services. In particular, mobile and internet based applications with communication capabilities can augment face-to-face mental health service provision. Results of in-depth qualitative data drawn from various stakeholders involved in provision of youth mental health services in one Australian rural region are described. Data were obtained using focus groups and semi-structured interviews with regional youth mental health clinicians, youth workers and support/management staff and analysed via inductive thematic analysis. Six main themes were identified: young people in a digital age, personal connection, power and vulnerability, professional identity, individual factors and organisational legitimacy. 

 

DOI: 10.1186/s12913-016-1790-y

Inside voices : CBR workers stories

OKUNE, Joan
Ed
2006

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This book is an output from three CBR writing workshops held in Kenya, Tanzania and Malawi with the aim to facilitate the capacity of CBR workers to communicate their experiences thus increasing documentation of CBR practices in Africa. The book contains articles based on participants’ experience of CBR and is useful to anyone interested in CBR experiences in Kenya, Tanzania and Malawi

Communities of practice and networks : reviewing two perspectives on social learning

CUMMINGS, Sarah
VAN ZEE, Arin
May 2005

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This article examines the similarities between the concepts of 'community of practice' and 'networking for learning'. This article examines the common elements, and discusses the approaches, the characteristics, theoretical background and importance for development of each model. Next, similarities based on conceptions of social learning are explored. Finally, it is argued that communities of practice and networks for learning are part of the same continuum with varying degrees of formality, ranging from informal communities of practice to highly formal networks for learning. This article provides a valuable, relatively accessible introduction to the ideas of "networking" and "community of practice", discusses how they have evolved and explores how they can be useful to the development sector

Building bridges with SIPAA : lessons from an African response to HIV and AIDS

DUNN, Alison
HEALTHLINK WORLDWIDE
2005

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This document examines the key lessons from the Support to the International Partnership against AIDS in Africa (SIPAA) programme implemented between 2001 and 2005 in nine African countries. The programme's main focus was on African leadership and ownership, involvement and participation of people living with or affected by HIV and AIDS and mobilisation of national and regional partners. Lessons learned include: meaningful involvement of people living with HIV and AIDS; supporting associations according to potential rather than proven track record; networks support; support for local leaders; making connections through National AIDS Councils; building strong partnerships; sharing information and knowledge across Africa; making the most of African skills and resources

Sharing knowledge for community development and transformation : a handbook

MCHOMBU, Kingo J
August 2004

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This handbook addresses the information needs of rural communities in Africa and explores the relationship between knowledge and development, and how community information resource centres can contribute to and can spark community development. It provides guidance for establishing community information centres and for ensuring their sustainability. The second edition includes several case studies from Ethiopia, draws out lessons learned, and includes a special section on HIV and AIDS resource centres. Each chapter concludes with suggested discussion questions for community groups

Use of information to address TB/HIV in Cambodia: workshop proceedings from Banteay Meanchey, Battambang, Phnom Penh, and Sihanoukville

BONNET, Jayaseeli
PHAT, So
SEAK, Kunrath
June 2004

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Cambodia is one of the countries most severely affected by TB and HIV. Partners in Health Reformplus (PHRplus) is providing technical support to government pilot interventions, developing an information component to support HIV/TB activities. It is standardizing the information being collected across all sites and facilitating its use by implementing partners in order to increase case detection and strengthen case management of TB/HIV co-morbidity. In January - March 2004, PHRplus conducted workshops with the four sites to review information and data it had collected, to identify current pilot accomplishments and to recommend how work could be improved. This report presents the workshop findings

The 10/90 report on health research 2003-2004

GLOBAL FORUM FOR HEALTH RESEARCH
2004

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This report, the fourth since Global Forum for Health Research formed in 1998, covers progress in helping correct the 10/90 gap (that only ten per cent of health research funds are spent on 90 per cent of the world's problems) over the past two years. It focusses on health and health research as sound economic investments; priority setting in health research; progress in measuring the 10/90 gap; research capacity strengthening; information networks in health research; gender; the MDGs and health research; and networks in the priority research areas

The 10/90 report on health research 2003-2004

GLOBAL FORUM FOR HEALTH RESEARCH
2004

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This site contains up-to-date information on progress in helping correct the 10/90 gap in health research. It includes reports from 1999, 2000, 2001/2002 and 2003/2004. The most recent, the fourth since Global Forum for Health Research formed in 1998, covers progress in helping correct the 10/90 gap (that only ten per cent of health research funds are spent on 90 per cent of the world's problems) over the past two years. It focusses on health and health research as sound economic investments; priority setting in health research; progress in measuring the 10/90 gap; research capacity strengthening; information networks in health research; gender; the MDGs and health research; and networks in the priority research areas

The cost-effectiveness of technology transfer using telemedicine

JOHNSON, K
KENNEDY, C
MURDOCH, I
2004

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This article describes the use of teleophthalmology, a form of telemedicine, as a mode of technology transfer between the United Kingdom and South Africa. Researchers found the technology transfer project to be cost-effective in reducing the burden of eye disease, and that practitioners in South Africa also learned novel procedures that could help future patients and improve cost-effectiveness

Knowledge networks : guidelines for assessment

CREECH, Heather
RAMJI, Aly
2004

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This paper focuses on research and 'knowledge' networks rather than more informal or emergent networks and communities. It explores five major elements of network performance and related indicators of success: effectiveness, structure and governance, efficiency, resources and sustainability, and life cycle. At the end, the paper offers a sample process for undertaking a network assessment

Water supply and sanitation access and use by physically disabled people : e-conference synthesis report

LEWIS, Ingrid
REED, R.
JONES, Hazel
Eds
October 2002

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The aim of this e-conference was to provide a forum for sharing information, experience and views on issues related to disabled people's access to and use of water and sanitation facilities. The report looks at barriers to accessible water and sanitation facilities; strategies to improve accessibility; and tools to support improvement in access. It is useful for CBR projects, governments, and planners

Strategic intentions : managing knowledge networks for sustainable development

CREECH, Heather
WILLARD, Terri
2001

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This book deals with the operation and management of formal knowledge networks, which the authors consider to be a valuable tool for sustainable development. Looking beyond simply using the technology of the internet, the book contends that such tools, strategically deployed, can engage decision makers and aggregate and build on the knowledge of southern-based organisations. The book addresses specifically: definitions of knowledge networks and different models of collaboration; engaging decision makers; specific management issues; challenges and lessons learned from IISD work; and planning, monitoring and evaluating knowledge networks

The use of information and communication technologies in IDRC projects : lessons learned

GRAHAM, Michael
April 1997

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This study was designed to test some of Acacia's assumptions about the role of information and communication technologies (ICTs) in development by extracting lessons from previous project experiences. The overall objective was to provide input that would help shape the design and implementation of the Acacia programme initiative by answering questions about policies, organisations and interactions, resources, barriers, innovative solutions, empowerment, community involvement, and jobs and economic activity

The Communication Initiative

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The Communication Initiative (CI) is a partnership of development organisations seeking to support advances in the effectiveness and scale of communication interventions for positive international development. The CI strategy includes provision of real-time information on communication and development experiences and thinking, facilitating horizontal linkages between people engaged in communication action, peer commentary on programmes and strategies and taking opportunities to promote strategic thinking on communication and development issues and problems. Themed sites within this website relate to: avian flu; HIV & AIDS; democracy & governance; early childhood development; health communication; ICT policies and studies; ICT for development; natural resource management; polio; and community radio and edutainment in Africa

LEAP : the learning and evaluation action program

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The Learning and Evaluation Action Program (LEAP) is an initiative to promote a coordinated and comprehensive approach to learning about the use of knowledge and ICTs in international development. It hosts an e-mail discussion list called LEAP-Impact, a community of practice open to all individuals and organisations interested in the evaluation of information services, projects and products. The website includes posted messages, documents and links to further resources on knowledge management, learning and evaluation for development

Population and health infoshare

POPULATION REFERENCE BUREAU

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Population and Health InfoShare is an electronic library of material submitted by over 100 partner organisations. It features documents in reproductive and child health, HIV/AIDS, population and related areas. The primary objectives of PH InfoShare are to increase access to important population and health information; provide a means for organisations to share and exchange information; and foster greater dissemination of research findings and lessons learned. For users, PH InfoShare affords easy access to population and health material. Users may access documents by visiting the website or by sending requests via e-mail. Additionally, users may subscribe to e-mail updates, specifying the material they want to receive by topic, region, and partner, or can email themselves documents that they have identified through searching the website. The search facility allows users to select a topic, language, region/country and partner organisation from drop-down lists

Health e communication

THE COMMUNICATION INITIATIVE

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The Communication Initiative (CI) website provides information on communication and development experiences and thinking, facilitating horizontal linkages between people engaged in communication action, peer commentary on programmes and strategies and taking opportunities to promote strategic thinking on communication and development issues and problems. The health window provides a point of entry themed on health communication. The 'evaluation' section of the health window signposts to useful examples and case studies of evaluation

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