What voice, what vision? Addressing metaphors in participatory research

PurposeThis paper aims to report process findings of two online inclusive research projects with people with intellectual and developmental disabilities (IDD). It includes a discussion of the potential benefits and barriers of online inclusive research and its impact on the future of inclusive research.Design/methodology/approachTwo researchers describe the transition of their inclusive research projects from in-person to online formats and highlight how they operationalized the principles of inclusive research throughout these transitions.FindingsPotential benefits of inclusive research include enabling participation of research participants with IDD when in-person methods are not safe or feasible, increasing participant control of the research environment, stimulating participants’ online skill development and reducing geographic and support barriers to participation in research. A barrier to participation in online inclusive research includes people with IDD’s lack of access to online spaces and Web-enabled devices. Additionally, people with IDD have support and communication needs that are not always accommodated by online skills training and access to the internet. To conclude, inclusive researchers need to develop skills and reflexivity specific to online research environments.Originality/valueInclusive online research with people with IDD brings unique ethical and methodological challenges that have not been well explored in the literature. Engaging people with IDD in research using online tools expands the terrain of inclusive research, opening possibilities for even greater inclusion and participation.Inclusive abstractTwo researchers could not do their research studies because of the pandemic. They did them online. The studies were with people with disabilities.Being online can make it easier for people with disabilities to be a part of a study. They can choose how to be a part of the study. They can also learn more skills.Being online can be hard for people with disabilities. Some do not have a computer or smartphone. Some do not know how to use them. Researchers may not know how to help people with disabilities to be a part of an online study.

This paper discusses the importance of research and evaluation in special education and its impact on improving outcomes for individuals with disabilities. It explores common challenges in conducting research and evaluation in special education, such as access to participants, measurement and assessment, ethical considerations, limited resources, and generalizability. The paper also highlights emerging trends and innovative approaches in special education research and evaluation, including mixed methods research, technology-enhanced assessment and intervention, implementation science, and participatory research. Additionally, it offers recommendations for future research in special education, including longitudinal studies, intersectionality and inclusivity, teacher preparation and professional development, family engagement and involvement, transition and post-school outcomes, inclusive practices and environments, technology and assistive technology, culturally responsive practices, and policy and systems-level research. By addressing these areas, special education can continue to evolve and improve, leading to more equitable and effective educational experiences for individuals with disabilities.

This paper sets out to explore the implications of participatory action research (PAR) as a method of encouraging older people from minority groups to have a ‘voice’ in defining knowledge, theory and practice about their lives. Recent policy in Britain has promoted the recognition of diversity of experience in later life () and the importance of working with older people as equal partners (). At the same time, notions of partnership and service user involvement in both research and practice development are now firmly established within health and social care practice. Despite this, the needs of older lesbians and gay men are still very much invisible within mainstream policy and practice (). PAR approaches seek to address issues of power, politics and empowerment () and therefore offers an inclusive method of working with marginalized and excluded voices. This is important in research with minority groups, as their experiences can be masked by imposing mainstream categories and assumptions (). The paper considers participatory action research as a methodology for inclusive social work research and uses a case study to explore the methodology. It reviews the ‘cycle’ of research using the six principles for working with disempowered groups identified by . The paradoxes involved in participatory research are explored, including issues of inclusiveness and exclusivity, and the possibility of ‘untold truths’ (). The challenges involved in striving for inclusive and empowering research methodologies are discussed, exploring the implications for ‘outsider’ researchers, and the challenges of working with ‘variant truths’.

ABSTRACTThis paper explores the learning that goes on when adults with learning disabilities are involved in inclusive (participatory or emancipatory) research. Applying thematic and narrative re-analysis of data from a series of focus groups involving inclusive researchers talking about their research work indicates inclusive research is a rich site for learning. The nature of the new knowledge (know-what and know-how) about the process and products of inclusive research, as well as more transferrable interpersonal learning and development of problem-solving are examined. Participants had, in their involvement in inclusive research, learned to occupy new roles; their narratives are of important and largely enjoyable learning journeys. In an effort to theoretically situate such learning, the paper discusses the fit between the learning evident in the data and concepts of lifelong learning, informal learning, and community learning.

This inclusive research inspired study explored the experiences of people with learning disabilities working in a Norwegian sheltered employment company. The study aimed at developing knowledge on the working experiences of people with learning disabilities and the impact of their participation in the study. We employed focus groups, supplemented by informal discussions to generate data for the study. Together with the employees and employers, we established two three-member focus groups. The participants, both males and females, discussed their work experiences and the empowering consequences of participating in the research. The data indicated that the employees had desires to work fully in ordinary companies, assuming socially valued roles. The participants experienced a combination of work in ordinary and sheltered employment companies as less stressful and satisfying. The adopted inclusive research strategy empowered our research partners to reflect on their experiences and made efforts to meet their working life dreams. Points of interest Participation in work-life is a central policy for all Norwegian citizens, including people with learning disabilities. This article presents and discusses the personal experiences of people with learning disabilities whose desire it is to work and contribute their quota to the Norwegian society. The research participants indicated that many people with learning disabilities would like to be a part of ordinary working life, but face barriers to attaining their goals. A combination of sheltered and ordinary work seems to work well for research participants with learning disabilities. Participation in this inclusive research seemed to empower people with learning disabilities and enabled them to realize their dreams and aspiration regarding work-life.

Accessible summary This paper is about working with people with learning disabilities to develop a research (or ‘finding out’) study. We worked with people from Reach, a group–advocacy project, which is part of Assist in Staffordshire, to write clear and simple information sheets and consent forms to help people with learning disabilities and dementia to participate in a research study. We also worked with members of Reach to create appropriate, clear and simple interview questions to ask people with learning disabilities and dementia about their experiences Working alongside people with learning disabilities helps to ensure the work is fit for purpose. AbstractBackground: There has been an increase in inclusive research in the learning disability field; however, this has not been reflected within learning disability and dementia research, where little is known from the perspective of people with learning disabilities. This paper will define inclusive research, explore reasons for the dearth of inclusive dementia research, and identify the challenges of conducting dementia research involving people with learning disabilities.Materials and Methods: Examples of working with people with learning disabilities to develop elements of a PhD research study will be detailed and critically discussed.Results: These experiences aided the creation of accessible material about dementia for a PhD research study. Subsequently, this helped to overcome challenges of communication within the research study and helped to promote the participation of people with learning disabilities and dementia.Conclusion: Sharing these ideas about how we worked together will help others who are seeking to engage and achieve more inclusive research practices with marginalised populations.

The focus of this article is participatory research with and by people with learning disabilities. Drawing on discussions that took place across a series of seminars, we use the concepts of space and boundaries to examine the development of a shared new spatial practice through creative responses to a number of challenges. We examine the boundaries that exist between participatory and non-participatory research; the boundaries that exist between different stakeholders of participatory research; and the boundaries that exist between participatory research with people with learning disabilities and participatory research with other groups. With a particular focus on participatory data analysis and participatory research with people with high support needs, we identify a number of ways in boundaries are being crossed. We argue that the pushing of new boundaries opens up both new and messy spaces and that both are important for the development of participatory research methods.

Active involvement of people with intellectual disabilities in health research – A structured literature review

Current research demands that we rethink the roles of people with intellectual disabilities (IDs) in the research that affects them. The paradigm of inclusive research responds to this need. Although the specialized literature is progressively adopting a more inclusive research approach, the study of roles and relationships within inclusive research and reflections on the process of doing participatory research has received little attention. From a qualitative approach and a participatory action research framework this study aims to: (1) report the experience of involving adults with IDs in inclusive research, and their improvements in terms of developed competencies; (2) identify their perceived roles as researchers, and (3) describe their perceived barriers and facilitators during the research process. This study describes the experiences of 11 adults with IDs who participated in a project aimed at evaluating the cognitive accessibility of public spaces and services in a Chilean city for 14 months. Different roles emerged, ranging from apprentices to experts by experience, and were adopted to different extent by co‐researchers as the process evolved. Co‐researchers developed conceptual, procedural, and attitudinal skills. They also identified contextual and personal barriers as well as facilitators consisting of natural, professional, and community supports, as well as assisted technology while performing their role as co‐researchers. Inclusive research is a challenging, evolving process and it requires ongoing support and feedback to monitor the process and the outcomes to guarantee that all the participants perform different roles involved while meeting the goals of the research.

The number of studies on inclusive research involving people with learning disabilities is increasing. These studies address multiple factors that need better understanding, including the education and training of people with learning disabilities and factors that affect different aspects of the research process. This 18-month long study is part of the collaborative research conducted in Spain and carried out by a research team, which consists of both academics and non-academics with learning disabilities. The results demonstrate that inclusive research should be a dialogical practice that addresses significant and relevant issues concerning people with learning disabilities serving as researchers. The results also show that inclusive research is a formative practice that offers opportunities for debate, compromise, and the analysis of these topics. Points of interest The education and training of people with learning disabilities are relevant topics in inclusive research. The study demonstrates the value of inclusive research based on collaborative relationships This study indicates that inclusive research should be a communicative process, open to the possibility of learning with and from other people. Research studies should address topics relevant to people with learning disabilities, including social inclusion. Inclusive research is an ongoing learning process that offers opportunities for debate and compromise.

BackgroundThis study explores the training involved when people with learning disabilities take their place in the community as researchers. This was a theme in a recent UK seminar series where a network of researchers explored pushing the boundaries of participatory research.MethodAcademics, researchers with learning disabilities, supporters and other inclusive researchers considered important themes arising from presentations about developments in participatory research. The paper emerges from critical reflection on these rich discussions.ResultsA seminar series is a form of research training and capacity building, albeit a dynamic, interactive and collegial one. More formal training in research skills for people with learning disabilities is being developed but raises questions regarding the best contribution people with learning disabilities can make to the research process.ConclusionThere are various models of training for inclusive research, but these need to be reciprocal if they are not to undermine the inclusive goal.

The active involvement of people with intellectual disabilities (ID) in research is expected to lead to relevant research outcomes, increased quality of life, improved healthcare, reduction of health inequities, and empowerment of people with ID. Despite the developments in inclusive health research, a lack of transparency remains with regard to how the partnership between researchers with and without ID is shaped and structural study of inclusive health research is needed. This study aims to gain insight into the experiences of inclusive research teams in practice regarding (1) reasons, (2) attributes, and (3) outcomes of inclusive health research. A structural study of four inclusive research teams was conducted in Ireland, Northern Ireland, and the Netherlands using case study methodology. Data were triangulated through documents and individual and group interviews. Data were analyzed and synthesized using domain and taxonomic analysis. Reasons for conducting inclusive research ranged from personal to practical. Having an inclusive ethos was found to be crucial in conducting inclusive research meaningfully in practice. Based on data analysis, attributes of inclusive research consist of three interrelated themes, one focusing on methodological aspects and two focusing on active involvement and partnerships. Outcomes of inclusive research across cases were found within three categories relating to research practice, inclusion itself, and interpersonal outcomes. Empowerment was found to be important. Although empowerment is not new to inclusive research, its positive effect on research quality appears to be new and needs further research. This study's results and the literature indicate that developing inclusive research policy and practice requires a realistic perspective, with a balance between maximum collaboration and using researchers' strengths. The results of this study are transferrable to inclusive research using similar methods with other groups. When the aim is to share learning in groups, a shared language is needed.

In this article I set out to trace the influence of two major sets of ideas: normalisation/srv, and the social model of disability on inclusive research in learning disability. The argument is that normalisation set the agenda for learning disability research for two or more decades. Inclusive researchers continue to apply normalisation thinking to work with people with learning difficulties, particularly in assuming the role of advocate - offering people the opportunity to take on valued social roles and assuming responsibility for promoting positive images. Latterly, a number of researchers have tried to rise to the challenges posed by emancipatory research, particularly in attempting to find ways to put people with learning difficulties in control. This illustrates the influence of thinking emanating from disability studies. However, the paper shows that whilst some ideas from emancipatory research have been applied in learning disability, there are debates in the disability literature that have not been addressed in learning disability research to date. The result is that inclusive research in learning disability is in danger of being marginalised, both in the context of disability studies and in the context of the broad sweep of learning disability research.

Accessible Summary We talked to 14 people about what it is like to do inclusive research in the Republic of Ireland. People said that more time is needed to do inclusive research well. They also told us about how hard it can be for all members of the research team to be equally involved in all research stages. Learning to speak up for themselves was something people with learning disabilities said they liked about being an inclusive researcher. Inclusive research teams need to write more about how they work on projects together, to give others ideas about how to do good research that matters to people with learning disabilities. AbstractBackgroundThe United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, ) sets the expectation that people with disabilities be involved in research that affects their lives. Inclusive research moves people with intellectual disabilities away from being research subjects, towards power‐balanced research collaborations that can create individual and societal change.MethodThis study employed a qualitative methodology guided by critical disability theory. Participants included seven adults with intellectual disability, two supporters and five academics who all had experience of inclusive research. Semistructured individual interviews (n = 9) and one focus group (n = 5) were carried out to explore experiences of engaging in inclusive research in the Republic of Ireland.ResultsThematic analysis using Atlas.ti software yielded three themes: “Continuum of inclusive research,” “Value of inclusive research” and “Power relations within inclusive research.” Definitions of inclusive research occurred along a continuum from participatory to emancipatory. Advocating for policy change and personal growth motivated participants to become inclusive researchers. The power dynamics negotiated by teams functioning within academic environments were highlighted, yet despite this, inclusive research teams are creating a space where people with intellectual disabilities are becoming confident researchers and peer mentors.ConclusionsThis study illuminated experiences of engaging in inclusive research in an Irish context. Retaining a responsive, local approach to inclusive research is advised. Being part of inclusive research teams was both personally rewarding and financially complex. Inclusive research is at a critical moment in Ireland, poised to effect positive change in policy and service provision. Critically reviewing and documenting how inclusive research teams negotiate these complex dynamics is warranted.

PurposeThe purpose of this paper is: to add to current understandings of how people with learning disability make informed choices in relation to participation in research; and to highlight both the competencies of people with learning disability in relation to participation in research and the impact of their involvement on the quality of that research.Design/methodology/approachA participatory/collaborative approach, designed to engage participants in both developing processes for data generation and participating in the analysis of that data, was employed.FindingsThe complexities of research and the implications of participation were poorly understood. Collaborative, recursive approaches are important for developing understanding. Participation in the research approach by people with learning disabilities enabled the generation of new understandings.Research limitations/implicationsThe small sample size means the collaborative, recursive approach, whilst researched in depth, has not been widely generalised. Whilst there have been some difficulties in taking this forward at the study site, a second phase with another 6 men with learning disability has been carried out. Four of the men from the original study acted as co‐facilitators. Although it was not formally evaluated it was considered to be a helpful way of raising issues in relation to participation in research.Practical implicationsThere needs to be more careful consideration of the broader issues behind informed consent. A recursive approach to developing informed choice (rather than a single engagement) needs to be embedded in practice. Peer to peer collaboration should be recognised as an approach to developing informed choice about participation.Originality/valueThis paper will be of value to people researching with people with learning disability. It demonstrates that, given appropriate opportunities, people with learning disability can understand some of the more complex concepts in relation to participation in research and so should be involved. It offers clear insights about how this may be achieved and raises the importance of including people with learning disability as active research participants in matters that affect their own lives.