Legitimising children’s evidence: Inclusive participatory research with children with disability

Achieving human rights is at the core of development outcomes, and the achievement of positive development outcomes increasingly relies on evidence-based policy and practice. However, people with disability have been routinely excluded from research evidence and knowledge production, both due to a lack of interest in their issues (Yeo and Moore, 2003) and through an over-reliance on research design that does not address barriers to their participation as research respondents (Wilson et al. 2013). Children with disability are even more marginalised from participation in knowledge production processes and have been passively subjected to research being conducted on or about them, rather than with them (Gray and Winter 2011a). This exclusion is even more evident in developing countries of the global south though with some rare exceptions (Kembhavi and Wirz, 2009; Singal, 2010; Wickenden and Kembhavi- Tam, 2014; Don et al, 2015; Nguyen et al, 2015). This paper reports on the ‘Voices of Pacific Children with Disability’ project (hereafter referred to as the Voices project) which, drawing on the broader field of child participatory research, developed a method for children with disability to competently provide evidence about their needs, aspirations and human rights priorities. Eighty-nine children with disability living in rural and urban areas of Vanuatu and Papua New Guinea (PNG) participated, using a suite of data collection ‘tools’ designed to support children to express their life priorities and human rights’ needs. In this paper we examine a sub-set of this data related to children’s future priorities, the primary one being employment, and explore the utility of such evidence for governments, NGOs and other stakeholders, in shaping policy and service delivery in line with the rights of children with disability. Such data is important when working in an evidence informed way as often these organisations have limited data on the needs and values of the groups they serve.

An examination of the knowledge barriers in participatory design and the prospects for embedded research

Participatory design has the moral and pragmatic tenet of including those who will be most affected by a design into the design process. However, good participation is hard to achieve and results linking project success and degree of participation are inconsistent. Through three case studies examining some of the challenges that different properties of knowledge – novelty, difference, dependence – can impose on the participatory endeavour we examine some of the consequences to the participatory process of failing to bridge across knowledge boundaries – syntactic, semantic, and pragmatic. One pragmatic consequence, disrupting the user’s feeling of involvement to the project, has been suggested as a possible explanation for the inconsistent results linking participation and project success. To aid in addressing these issues a new form of participatory research, called embedded research, is proposed and examined within the framework of the case studies and knowledge framework with a call for future research into its possibilities.

An examination of the knowledge barriers in participatory design and the prospects for embedded research

Participatory design has the moral and pragmatic tenet of including those who will be most affected by a design into the design process. However, good participation is hard to achieve and results linking project success and degree of participation are inconsistent. Through three case studies examining some of the challenges that different properties of knowledge - novelty, difference, dependence - can impose on the participatory endeavour we examine some of the consequences to the participatory process of failing to bridge across knowledge boundaries - syntactic, semantic, and pragmatic. One pragmatic consequence, disrupting the user's feeling of involvement to the project, has been suggested as a possible explanation for the inconsistent results linking participation and project success. To aid in addressing these issues a new form of participatory research, called embedded research, is proposed and examined within the framework of the case studies and knowledge framework with a call for future research into its possibilities.

Participatory action research for civic engagement

The future of civic engagement is characterised by both technological innovation as well as new technological user practices that are fuelled by trends towards mobile, personal devices; broadband connectivity; open data; urban interfaces; and, cloud computing. These technology trends are progressing at a rapid pace, and have led global technology vendors to package and sell the ‘Smart City’ as a centralized service delivery platform predicted to optimize and enhance cities’ key performance indicators – and generate a profitable market. The top-down deployment of these large and proprietary technology platforms have helped sectors such as energy, transport, and healthcare to increase efficiencies. However, an increasing number of scholars and commentators warn of another ‘IT bubble’ emerging. Along with some city leaders, they argue that the top-down approach does not fit the governance dynamics and values of a liberal democracy when applied across sectors. A thorough understanding is required, of the socio-cultural nuances of how people work, live, play across different environments, and how they employ social media and mobile devices to interact with, engage in, and constitute public realms. Although the term ‘slacktivism’ is sometimes used to denote a watered down version of civic engagement and activism that is reduced to clicking a ‘Like’ button and signing online petitions, we believe that we are far from witnessing another Biedermeier period that saw people focus on the domestic and the non-political. There is plenty of evidence to the contrary, such as post-election violence in Kenya in 2008, the Occupy movements in New York, Hong Kong and elsewhere, the Arab Spring, Stuttgart 21, Fukushima, the Taksim Gezi Park in Istanbul, and the Vinegar Movement in Brazil in 2013. These examples of civic action shape the dynamics of governments, and in turn, call for new processes to be incorporated into governance structures. Participatory research into these new processes across the triad of people, place and technology is a significant and timely investment to foster productive, sustainable, and livable human habitats. With this chapter, we want to reframe the current debates in academia and priorities in industry and government to allow citizens and civic actors to take their rightful centerpiece place in civic movements. This calls for new participatory approaches for co-inquiry and co-design. It is an evolving process with an explicit agenda to facilitate change, and we propose participatory action research (PAR) as an indispensable component in the journey to develop new governance infrastructures and practices for civic engagement. This chapter proposes participatory action research as a useful and fitting research paradigm to guide methodological considerations surrounding the study, design, development, and evaluation of civic technologies. We do not limit our definition of civic technologies to tools specifically designed to simply enhance government and governance, such as renewing your car registration online or casting your vote electronically on election day. Rather, we are interested in civic media and technologies that foster citizen engagement in the widest sense, and particularly the participatory design of such civic technologies that strive to involve citizens in political debate and action as well as question conventional approaches to political issues (DiSalvo, 2012; Dourish, 2010; Foth et al., 2013). Following an outline of some underlying principles and assumptions behind participatory action research, especially as it applies to cities, we will critically review case studies to illustrate the application of this approach with a view to engender robust, inclusive, and dynamic societies built on the principles of engaged liberal democracy. The rationale for this approach is an alternative to smart cities in a ‘perpetual tomorrow,’ (cf. e.g. Dourish & Bell, 2011), based on many weak and strong signals of civic actions revolving around technology seen today. It seeks to emphasize and direct attention to active citizenry over passive consumerism, human actors over human factors, culture over infrastructure, and prosperity over efficiency. First, we will have a look at some fundamental issues arising from applying simplistic smart city visions to the kind of a problem a city is (cf. Jacobs, 1961). We focus on the touch points between “the city” and its civic body, the citizens. In order to provide for meaningful civic engagement, the city must provide appropriate interfaces.

Getting it right: participatory information research with people with disabilities

Over the past two decades there has been a growing understanding of consumer requirements and advances in the design and development of accessible technology. However, research over the past decade confirms that significant barriers still exist for people with disabilities. These individuals constitute a diverse group of consumers who experience physical, cognitive, literacy, financial and attitudinal barriers to the use of technology or information. They regard themselves as experts on their access issues yet have been provided with few opportunities to participate in technology research that seeks to explore issues and provide consumer-focused solutions.

In this paper, the benefits of collaborative research and the use of participatory methods in a funded research project on accessible telecommunications information are described. The target consumer group for the project was people with significant communication difficulties, a group who are particularly disadvantaged due to speech, literacy and physical access issues with technology and information. The strategies used to facilitate participation are discussed and criteria from Zarb (1992) and Barnes (2003) are used to evaluate the participatory aspect of the project.

Are the potential benefits of a community-based participatory approach to public health research worth the potential cost?

Much of public health research is conducted in a community setting or is designed to target particular population groups. Community-based participatory research (CBPR) is gaining recognition as good practice in studies of this type(Flicker et al 2007). Its merit is based on the inclusion of the community as active participants at all stages of the research process (Goodman 2006). The focus on justice and equity in this approach is seen to contribute to a range of additional potential research benefits including increased relevance and sustainability of interventions arising from the research ( Blumenthal 2004; Wallestein 2006) However, it is widely acknowledged that adoption of a consciously CBPR approach requires additional expertise. time and resources from researchers and from communities (Tanjasiri et al 2002; Massaro & Claiborne 2001; Israel et al 1998). Adoption of CBPR is also limited by existing infrastructures which are supportive of more· traditional models of research. Changes to professional development programs, funding guidelines and criteria. grant review processes and ethics requirements are needed to support increased application of this approach (Israel et al 2001). As all research resources are limited, the potential additional benefits offered by CBPR over and above a more traditional research approach need to be weighed against the potential additional costs involved. Changes to research infrastructure are unlikely to occur until the costs and
benefits of a consciously CBPR approach as compared to a more traditional research approach can be demonstrated.

This is an exploratory paper that summarises the arguments put forward to date in relation to CBPR. A research case study and an evaluation framework are then used for a conceptual analysis of differences in the potential costs and benefits of the two approaches. Firstly, the paper describes the differences between traditional and consciously CBPR approaches. The reported benefits of CBPR are then outlined, followed by a discussion of the potential costs. Finally, the potential costs are compared to the potential benefits of using a CBPR approach, using a case study of existing research.

Coproduction in practice : participatory action research to develop a model of community aged care

Coproduction has become synonymous with innovative approaches to public service delivery in European Union countries as well as in Australia. Coproduction has the potential to bring together individuals, communities, and organisations in a process to collaboratively develop new models and services which improve public services. Yet, Australian policy makers and practitioners who would like to deploy coproduction within the context of older adult social care can only draw on a handful of papers and reports that could guide implementation. This paper fills this gap by reporting on the implementation of a multi-stakeholder coproduction approach to the development of a consumer directed care model for older people with complex health issues. The paper describes and critically highlights methodological challenges encountered during the 12 month-long participatory action research phase of a larger project involving older people with complex care needs, their carers, and government and non-government stakeholders. The paper outlines key considerations regarding (1) the involvement of older people with complex needs, (2) collaboration with industry partners, (3) engagement of government representatives, and (4) reflects on implementing participatory research projects within a context of outsourcing and interlinked supply chains. While not all challenges encountered could be resolved, the coproduction approach was successful in bringing together a wide range of stakeholders with competing agendas in an iterative process geared to resolve a plethora of concerns raised by older people, carers and services providers. This paper provides an example for others seeking to use coproduction and participatory methods to provide person-centred care services for older people.

Participatory Methods for Climate Change and Mental Health Research: Photovoice in Nepal

Background: The relationship between mental health and climate change are poorly understood. Participatory methods represent ethical, feasible, and culturally-appropriate approaches to engage community members for mental health promotion in the context of climate change. Aim: Photovoice, a community-based participatory research methodology uses images as a tool to deconstruct problems by posing meaningful questions in a community to find actionable solutions. This community-enhancing technique was used to elicit experiences of climate change among women in rural Nepal and the association of climate change with mental health. Subjects and methods: Mixed-methods, including in-depth interviews and self-report questionnaires, were used to evaluate the experience of 10 women participating in photovoice. Quantitative tools included Nepali versions of Beck Depression Inventory (BDI) and Beck Anxiety Inventory (BAI) and a resilience scale. Results: In qualitative interviews after photovoice, women reported climate change adaptation and behavior change strategies including environmental knowledge-sharing, group mobilization, and increased hygiene practices. Women also reported beneficial effects for mental health. The mean BDI score prior to photovoice was 23.20 (SD=9.00) and two weeks after completion of photovoice, the mean BDI score was 7.40 (SD=7.93), paired t-test = 8.02, p<.001, n=10. Conclusion: Photovoice, as a participatory method, has potential to inform resources, adaptive strategies and potential interventions to for climate change and mental health.

Book review : Kellett, M (2010) Rethinking children and research : attitudes in contemporary society

Rethinking Children and Research characterizes Mary Kellett’s vision as campaigner and sociologist actively working for and with children for many years. The book itself is not only visionary; it is informative, thought provoking and pragmatic. From a contemporary standpoint, the manuscript presents a detailed synopsis of the shifts in thinking about research with children and provides an appraisal of the theoretical movements that have driven a participatory research agenda. A strong theoretical approach of the combined lenses of sociologies of childhood and rights discourse is introduced early in the book. From the outset, the reader receives loud and clear, the key message of the book: that children in research should and can be included as competent members who lead research in the study of their everyday lives. The argument for a more mutual research approach is shaped throughout the book using research examples and practical suggestions on how this might be achieved. Overall, the reader is left feeling compelled to adopt such an approach.

Young and Well CRC: Engaging young people as research partners

This paper presents the outcomes of an international collaboration between researchers and young people in Australia and the United States, using participatory design to engage young people as research partners in the collaborative development of a conceptual framework for the Online WellBeing Center (OWBC), a repository of evidence-based mental health tools focused on mental health promotion and the prevention of mental illness developed as part of Young and Well Cooperative Research Centre. Eighteen participants (nine in Australia and nine in USA) were involved as key partners through a series of participatory design workshops to develop the framework for the OWBC. Key objectives of the collaboration included an increased understanding of: how to recruit young people to be part of an international project team collaborating remotely; how to use new technologies to manage communication and maintain engagement; how to apply principles of participatory research to create a youth informed research project; how to develop an international stakeholder partnership to ensure relevancy in value systems, cultural orientation and project outcomes. Recommendations included guidelines for how others can establish international collaborations that integrate young people as active project participants.

Using Participatory Design (PD) as youth engagement strategy to inform design and development of evidence-based wellbeing e-tools

The paper presents a participatory design research framework as a primary method for structuring youth engagement, participation and contribution to the design, development and usability evaluation of three evidencebased e-tools for wellbeing, which include smart phone mobile apps as well as e-health websites. The three projects are part of a series of six e-tools part of Safe and Supportive program under Young and Well CRC. The participatory design method, developed by Zelenko (2012) for application in design of online health promoting technologies, was further piloted in partnership with Inspire USA for specific application within the CRC, deploying a combination of creative design workshops and speculative design activities in developing e-tool prototypes with young people. This paper presents the resulting participatory research framework as it was implemented across the e-tool projects to facilitate active youth participation in co-designing the e-tools and ensuring the final designs are relevant to young people and deliver health messages in engaging ways. The principles of Participatory Design (PD) that inform the new framework include a high degree of participant agency in creative decisionmaking and a commitment to the process of co-designing, with young people working alongside designers and developers. The paper will showcase how the PD framework was applied across three projects to increase young people’s contribution to final design outcome.

The lowland dry zone of Sri Lanka: site for study of aquaculture development within farmer-managed irrigation systems and methodology for participatory situation appraisal

The aims of this paper are twofold. Firstly to characterise rural poverty and to give a broad overview of the agro-ecological, climatic and socio-economic conditions in Sri Lanka which shape poverty. Secondly to present the methodology employed to screen suitable field research areas and the techniques subsequently used to carry out Rapid Rural Appraisal in two upper-watersheds villages. Also presented are details of a concurrent stakeholder analysis that aimed to investigate the capacity of secondary stakeholders to promote sustainable aquatic resource development and to invite their participation in the formulation of a participatory research agenda.[PDF contains 58 pages]

SEDAWOG, 2000. Fisheries co-management options at Kiumba Beach: a participatory pilot study

This report represents the key output of a training workshop hosted by Lake Victoria Fisheries Research Project (LVFRP) for researchers from each of the riparian countries fisheries research institutes. The workshop aimed to train the researchers in participatory research techniques which they could use to undertake a study of community-based institutions and organizations which could potentially be involved in fisheries co-management. A central focus of the workshop was a study to identify the community-based organizations and institutions, which operated at Kiumba beach, and this study is reported here. Separate reports, which include operated at Kiumba beach and this study is reported here. Separate reports, which include details of the training process and the participatory methods used, are available (Sarch 1995, 2000). The report centers on the information generated from the participatory pilot study conducted by the workshop participants and the community at Kiumba Beach over the course of a week in March 2000. Ranges of participatory research techniques were used and the discussion and diagrams, which resulted from them, form the basis of this report. The workshop participants undertook a preliminary analysis of these findings and this has been synthesized at the end of this report. (PDF contains 55 pages)

Demonstrating the merits of the peer research process: A Northern Ireland case study

This article discusses the benefits and challenges of involving peer researchers in social research projects. A research project on pupil participation in policy making on school bullying in Northern Ireland’s schools was commissioned by the Office of the Northern Ireland Commissioner for Children and Young People and undertaken by the National Children’s Bureau in conjunction with researchers from Queen’s University Belfast in fourteen schools across Northern Ireland, utilizing a mixed methods approach. We trained and employed nine 15–18-year-old peer researchers to support them in this project. After the project’s completion, we conducted interviews with six of the peer researchers to investigate how they experienced their involvement in the research. We discuss the findings from these interviews and contextualize in a review
of literature on research involving children and young people.