Harnessing the potential of community-based participatory research approaches in bipolar disorder

BACKGROUND: Despite the rapid growth in the sophistication of research on bipolar disorder (BD), the field faces challenges in improving quality of life (QoL) and symptom outcomes, adapting treatments for marginalized communities, and disseminating research insights into real-world practice. Community-based participatory research (CBPR)-research that is conducted as a partnership between researchers and community members-has helped address similar gaps in other health conditions. This paper aims to improve awareness of the potential benefits of CBPR in BD research. METHODS: This paper is a product of the International Society for Bipolar Disorders (ISBD) Taskforce on Community Engagement which includes academic researchers, healthcare providers, people with lived experience of BD, and stakeholders from BD community agencies. Illustrative examples of CBPR in action are provided from two established centres that specialize in community engagement in BD research: the Collaborative RESearch Team to study psychosocial issues in BD (CREST.BD) in Canada, and the Spectrum Centre for Mental Health Research in the United Kingdom. RESULTS AND DISCUSSION: We describe the philosophy of CBPR and then introduce four core research areas the BD community has prioritized for research: new treatment approaches, more comprehensive outcome assessments, tackling stigma, and enhanced understanding of positive outcomes. We then describe ways in which CBPR is ideal for advancing each of these research areas and provide specific examples of ways that CBPR has already been successfully applied in these areas. We end by noting potential challenges and mitigation strategies in the application of CBPR in BD research. CONCLUSIONS: We believe that CBPR approaches have significant potential value for the BD research community. The observations and concerns of people with BD, their family members, and supports clearly represent a rich source of information. CBPR approaches provide a collaborative, equitable, empowering orientation to research that builds on the diversity of strengths amongst community stakeholders. Despite the potential merits of this approach, CBPR is as yet not widely used in the BD research field, representing a missed opportunity.

Reflecting on participatory research in environmental education : some issues for methodology

We reflect on methodological issues arising in two of our own research projects as a form of practice, as a way of engaging in a praxis of project research. The projects chosen for this purpose are themselves concerned with teacher education and curriculum development in environmental education: they include participatory “reflective practice” processes in exploring issues relating to formal education in schools and informal education in communities and are grounded in the specific contexts of developing countries.
We discuss issues in participatory research such as:
• Whose research agenda gets to be explored?
• The importance of project partnerships
• Participants’ preconceptions about the nature of research
• What is “rigor” in participatory research in environmental education?
• The Colonialist Dilemma: Avoiding the “package or perish” mentality
• The Bigger Picture: Technocratic Rationality and Participatory Research.

Participatory research in EE: some issues of epistemology and methodology

The conference theme of epistemology and methodology suggests an interest in epistemological issues in environmental education research. I have argued previously that for too long there seemed to be a blindness in environmental education research: that there was an unwarranted assumption that all research in environmental education was and should be conducted within an applied science conceptual framework that did not recognise nor problematise the epistemological assumptions of research. In this paper I intend to address the issue of epistemological coherence between the substantive subject matters of environmental education on the one hand and research, methodology on the other. The paper will draw upon two recent international environmental education projects to explore issues concerning the nature, status and role of research in environmental education. A number of features of community-based environment development projects in two different settings will be described, illustrating the complexity and contextuality of environmental issues as subject matters for environmental education. The implications for research that seeks to acknowledge and respect relationships within community contexts will be considered in relation to the following questions: Whose research agenda? The importance of project partnerships Participants' preconceptions about the nature of research. What is 'rigor' in participatory research in environmental education'?

Capturing the ephemeral : reflection-in-action as research

This paper considers two different methodological approaches to 'capturing' and analysing reflection-in-action in process drama teaching. Reflection-in-action, the 'thinking on your feet' that drama teachers constantly do, is ephemeral and difficult to record. In the first project discussed here, a teacher researcher study, examines the problem of representing the reflection-in-action, working around the central question of 'How can I as a researcher describe and document my reflection-in- action when working as a teacher in process drama?' The second project, an interview-based research project', developed some of the findings of the first study through a series of interviews with drama practitioners. This paper considers these methodological approaches in terms of the possibilities they provide, the limitations for the study of reflection-in- action in process drama and some possible applications of the approaches investigated for future drama research

Inclusion in participatory research: what were the whitefellas doing in an Aboriginal health project?

Health research in indigenous communities, like many interactions between such communities and white-dominated institutions, has a chequered history leading to a three-fold decrement: suspicion and resistance to research that is seen as coming from outside of the community; a shortage of research generators and leaders within the community; and cumulative gaps in the research evidence base, both in terms of coverage of topics and in terms of meeting the priorities of the community.

Additionally, these decrements have been mistakenly located as problems being caused from within the community, rather than recognising that these are outcomes of wider contextual, historical and institutional factors and failings. Good research, as culturally appropriate, inclusive of community voices and meeting the needs and priorities of the community, is necessary in an increasingly evidence-based-practice culture within policy and health settings. Culturally safe research with and for indigenous communities has the potential to be empowering, and to bring community voices, views and experiences into the influential realm of'evidence.

This process of developing safe, appropriate and inclusive research is not straightforward: the decrements are recursive, with a shortage of connections between the community, its priorities and research. However, as the Healing Stories project that we discuss here has shown, it is possible to develop culturally safe participatory research by working with Elders from within the community and with leaders from within white institutions, in a spirit of reconciliation. The methods and findings of Healing Stories have been reported elsewhere, with an emphasis on the voices from the community; this chapter explores some of the 'behind the scenes' processes, from the perspective of the white researchers working from within white- dominated institutions.

After briefly describing the Healing Stories project, this chapter reflects on three parts of the participatory research process: getting started, leading together, and working together. The first of these considers laying the foundations for participatory research, working with Elders and leaders, and planning for inclusion, examining participatory research as a recognisable research design, with potential for rigour, cultural safety and inclusion. The second explores developing participatory methods, working with communities, and opportunities and choices for inclusion. The third examines the process of being participatory, working together and engaging in inclusion across the long-term commitment to the project.

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.

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.

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.

Consumers as partners in inclusive assistive technology research

While there is a general favorable predisposition to the involvement of consumers in rehabilitation and assistive technology research, it remains the case that few research studies are conducted using a participatory approach (participatory action research, inclusive research, emancipatory research). Advantages as well as barriers to the conduct of participatory research are discussed with an emphasis on two research frameworks that have particular relevance to assistive technology and have the potential to make participatory research more viable.

Inclusion and accountability: communications research with consumers with disabilities

Over the past two decades there has been an increasing focus on doing research with and for consumers rather than on consumers. Research that is collaborative and inclusive has been called for by people with disabilities. People with disabilities are a group of telecommunications consumers who are disadvantaged because of social barriers and access issues with equipment, services and information. In this paper, the benefits and challenges of collaborative (e.g. participatory, participatory action, emancipatory) research with these consumers and the processes that can facilitate inclusive and accountable research outcomes are addressed. Throughout the paper, four questions will be explored: Who determines which research issues are explored and the methods that are used? What is the level of consumer involvement in the research process? How can academics and government ensure that consumer-focused research is inclusive and participatory? How, and to whom, should research results be made available?

In the first part of the paper, the perspectives on consumer research by people with disabilities are presented. Respect for and appreciation of consumers' views underpins the philosophical stance needed by researchers and funding bodies before serious engagement in empowering, person-centred research can be successful.

In the second part of the paper, there is a focus on defining the features of collaborative research approaches. Participatory research, participatory action research, and emancipatory research are variations that incorporate differing levels of consumer involvement. Each of these, however, embrace shifts in philosophy and methods away from more traditional 'scientific' research. Such changes result in a greater sense of inclusion and project ownership by consumers.

The third part of the paper addresses some of the issues associated with collaborative research for consumers with disabilities, for academic researchers, and for government funding bodies. Differing understandings of the social nature of disablement influence attitudes toward consumer involvement and are demonstrated in the choice of research questions, project aims, and the methodologies used. Differing agendas are reflected in reactions to the traditional project requirements and processes of government, the preferred research methodologies of researchers, and the perceived accountability of researchers or government for the dissemination and sharing of research results. The challenges to successful engagement with consumers in collaborative research have been identified in the literature and a number of strategies recommended (Barnes, 2003; Clear, 1999; Mercer, 2002; Oliver, 1992, 1997; Zarb, 1997). Application of inclusive strategies by researchers and funding bodies is essential for positive change and inclusive, empowering outcomes.

The paper concludes with a case study of a DCITA-funded research project. The project is evaluated using participatory/emancipatory research criteria modified from Zarb (1992) and addresses consumer, researcher, and funding body participation. The four questions used in the discussion of the paper are applied to this particular project. In addition, the benefits and learnings from the project will be compared with the outcomes desired by consumers who espouse collaborative research approaches.