Inclusive Research Practices Research Articles

Stewards of Memory: The Past, Present, and Future of Historic Preservation at George Washington’s Mount Vernon ed. by Carol Borchert Cadou

Reviewed by: Stewards of Memory: The Past, Present, and Future of Historic Preservation at George Washington’s Mount Vernon ed. by Carol Borchert Cadou Anna Nau Stewards of Memory: The Past, Present, and Future of Historic Preservation at George Washington’s Mount Vernon. Edited by Carol Borchert Cadou, with Luke J. Pecoraro and Thomas A. Reinhart. Charlottesville: University of Virginia Press, 2018. ISBN: 9780813941516 Hardcover: 280 pages Mount Vernon is known to most Americans as the historic home of the first president of the United States. It is also considered the birthplace of the historic preservation movement in the United States. The continuing legacy of the latter forms the central subject of Stewards of Memory. This diverse collection of eight concise, readable essays by respected scholars and preservation professionals uses Mount Vernon as a case study offering a cross-section of current theories and practices in historic site preservation and management. These include cultural landscape research, digital documentation tools, and the challenges of achieving more inclusive historic interpretation. The book grew out of a 2013 symposium celebrating the 160th anniversary of the purchase of Mount Vernon by the Mount Vernon Ladies’ Association (MVLA). As the oldest preservation organization in the United States, the MVLA’s contributions to preservation have been well established. The essays here succeed in presenting a window into the paradigms and practices of current work, as lead editor Carol Borchert Cadou, former Senior Vice-President for Historic Preservation and Collections at Mount Vernon, sets forth in the introduction. But the volume would have benefited from an organization that grouped the essays in such a way as to make those themes more apparent. This shortcoming, however, does not detract from the contribution made by each essay. Together, the essays offer enriching interdisciplinary insight into the challenges, needs, and opportunities facing America’s historic sites and house museums in the twenty-first century. This is facilitated by the contributing authors’ diverse backgrounds that include history, architectural history, historic preservation, architecture, archaeology, and collections management. In the opening essay, “New History in Old Buildings,” Carl R. Lounsbury presents an engaging examination of how historic site research and interpretation has evolved over the last fifty years. The new social history methodologies of the 1960s and 1970s fostered broader definitions of historic and architectural value that moved beyond the early twentieth-century model of commemoration and antiquarianism. Drawing on his own experiences at Colonial Williamsburg and other sites in the southeast, Lounsbury traces how scholars have incorporated advances in archaeology and materials analysis along with more inclusive research and survey practices to reach new understandings of sites like Mount Vernon. This research has in turn revised concepts of early American society. Expanded research methodologies are only one part of the preservationist’s toolbox, as George W. McDaniel demonstrates in his essay on “whole place preservation.” In “Stepping Up and Saving Places,” he examines five cases that illustrate varying degrees of success in the preservation of historic sites and their broader environments, including Mount Vernon and the Ashley River region around Drayton Hall in South Carolina, where McDaniel formerly served as director. He argues that effective preservation demands thoughtful management of change in the landscapes surrounding historic sites through proactive, widespread community support. That support requires strong partnerships and advocacy as well as an understanding of larger economic and social contexts. In his essay entitled “’We Have Done Very Little Investigation There; There Is a Great Deal Yet to Do’,” Luke J. Pecoraro examines another aspect of cultural landscape preservation in a brief summary of past and current “Archaeology of George [End Page 43] Washington’s Mount Vernon.” He presents new efforts to understand and protect the larger cultural landscape of the site—the historic core and the original eight thousand acres—as a means to tell a broader history of its multiple generations of owners, occupants, and uses. This includes a program to document forgotten slave cemeteries using GIS (geographic information system) software to analyze historic maps and visitor accounts as well as continued efforts to protect Mount Vernon’s historic viewshed along the Potomac River. Historians of the American preservation movement may find the essays by Lydia Mattice Brandt and Scott...

Abstract PO-096: A guide for development of a successful and inclusive lung cancer research strategy based on U.S. best practices

Abstract Disparities in clinical research are well-documented, and part of the broader health care disparities we see as a byproduct of systemic and institutional racism. COVID-19 vaccine and treatment development has greatly amplified the need for all communities to have the same opportunity to participate in research. Lack of representation of minorities in lung cancer clinical trials have been reported over the past 20 years. We have previously reported that there is a disconnect between U.S. lung cancer clinical trials placement and where patients with lung cancer reside, especially racial minorities. Both NCCN and ASCO guidelines suggest that clinical trials be considered the standard-of-care for advanced-stage non-small cell lung cancer and extensive-stage small cell lung cancer patients in first- and subsequent- line settings. In addition, participation in clinical trials has been associated with improved overall survival in lung cancer regardless of cancer stage, insurance and other prognostic factors. In order to provide better outcomes and achieve health equity for historically underserved populations, we must work together with all stakeholders to increase representation of diverse populations in lung cancer research. Our Question: What is a successful and sustainable multi-stakeholder framework that will result in inclusive lung cancer research in the US? Our methods will expand on previous work in the identification of notable practices where the focus was on successful pan-cancer inclusive clinical trial practices in 8 US cancer centers. We will include notable practices and recommendations of all stakeholders and focus on successful lung cancer inclusive research practices including behavioral research, community-based research and clinical research. We will conduct a robust environmental scan to identify strategies and standards, process and capabilities and roles. We will specifically identify tools and references to engage patients with lung cancer where applicable and interview identified experts based on practice themes representing all key stakeholder groups. Authors have identified 14 preliminary practice themes representing all key stakeholder groups to guide our framework development: Leadership & Goals; Protocol development; Operations and process; Data collection standards and reporting; Site selection, Health literacy & translation of recruitment materials including informed consent; Bilingual research staff; Community & Patient Engagement; PCP engagement; Digital capablities, Budget elements; Employee engagement and training; IRB Approval; Investigator meeting standards. Our framework is intended deliver the foundation for a theoretical underpinning of a evidenced based practical guide toward fostering collaboration amongst and between health care systems, academia, industry, health care leaders, PCPs, and patient organizations to promote successful inclusive research practices in lung cancer and will provide a roadmap for other disease areas. Citation Format: Jeanne M. Regnante, Narjust Duma, Quita Highsmith, David E. Gerber, Lorna McNeill, Upal Basu Roy, Gerren Wilson, Mary Stober Murray, Andrea A. Ferris, Fabian Sandoval, Moon S. Chen, Jr. A guide for development of a successful and inclusive lung cancer research strategy based on U.S. best practices [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PO-096.

Power Sharing, Capacity Building, and Evolving Roles in ELSI: The Center for the Ethics of Indigenous Genomic Research.

Persistent, unresolved issues stemming from a legacy of scientific exploitation and bio-colonialism have kept many tribal nations from participating in genomic research. The Center for the Ethics of Indigenous Genomic Research (CEIGR) aims to model meaningful community engagement that moves toward more inclusive and equitable research practices related to genomics. This article reflects on key successes and challenges behind CEIGR’s efforts to shape Ethical, Legal and Social Implications (ELSI) research in ways that are informed by Indigenous perspectives, to locate community partnerships at the center of genomics research, and to conduct normative and empirical research with Indigenous communities that is grounded in the concepts of reciprocity, transparency and cultural competency. The structure of CEIGR represents an important shift away from a traditional model centered on a university-based principal investigators toward a partner-centered research approach that emphasizes equity and community control by distributing power and decision-making across all CEIGR partner sites. We discuss three features of CEIGR that have contributed to this shift towards an equitable, community-driven partnership: 1) balancing local priorities with collective goals; 2) distributing power in ways that promote equitable partnerships; and 3) capacity building and co-learning across partner sites. The discussion of these three areas in this article speaks to a particular strength of our Center: the interdependence among partners and collective willingness to maintain a plasticity of leadership that creates space for all of our partners to lead, support, exchange and strengthen ELSI research.

Exploring patient and public involvement (PPI) and co-production approaches in mental health research: learning from the PARTNERS2 research programme

BackgroundPatient and Public Involvement (PPI) in research is a growing field of work, incorporating experiential knowledge within research processes. Co-production is a more recent PPI approach that emphasises the importance of power-sharing to promote inclusive research practices, valuing and respecting knowledge from different sources, and relationship building. Applying co-production principles in research trials can be difficult, and there are few detailed worked examples or toolkits. This paper explores the successes and challenges encountered by one research team.MethodsOur paper is written by a team of 21 people working on PARTNERS2, led by a smaller co-ordinating group. Using a co-operative style inquiry, the authors have reflected on and written about their experiences; analysis of the resulting 15 accounts provided examples of how PPI and co-production were delivered in practice.ResultsWe reveal varied and complicated experiences as we developed our collaborative approach across the entire research programme. Four main themes emerge from reflective accounts which describe aspects of this process: (1) recognising the importance of ‘emotional work’; (2) developing safe spaces to create and share knowledge; (3) some challenges of using our personal identities in research work; and (4) acknowledging power-sharing within the research hierarchy. We also found continual relationship building, how different forms of expertise were valued, and stigma were central to shaping what work was possible together. Other important practices were transparency, particularly over decision making, and clear communication.ConclusionsOur work provides one example of the ‘messy’ nature of collaborative research in practice. The learning we surface was contextual, generated within a large-scale research programme, but applicable to other studies. We found for success there needs to be an acknowledgement of the importance of emotional work, creating safe spaces to co-produce, transparency in decision making and reflection on the difficulties of using personal identities in research work including for service user researchers. These elements are more important than existing guidelines suggest. Implementation of actions to support emotional work, will require changes within individual teams as well as institutions. Introducing reflective practice in teams may be helpful in identifying further improvements to inclusive research practice.

Ethics as Obligation: Reconciling Diverging Research Practices With Marginalized Communities

This article argues that research design is impacted by ideological frameworks, and when conducting community-based participatory research (CBPR), can create challenges and conflicts throughout the Institutional Review Board (IRB) and other institution’s approval processes. I explore the ideological frameworks that underpin conventional and CBPR methodologies to show how collaboration can influence the questions asked and answered, the roles of researchers in the project, and how research findings can better impact the community at the center of the research. I offer a snapshot of our CBPR project with women who were currently and formerly incarcerated and document the challenges we encountered given our CBPR methodology and the unique population at the center of our study. I explore the ethical challenges, complications, and delays that emerged from these conflicting ideologies and methodologies. I propose that how we engage in research and our research practices impact the questions we ask and answer, how people are represented, and ultimately the material conditions of people’s lives. I conclude with recommendations for researchers and IRBs, and even more importantly, community partners to make CBPR projects more inclusive and ethically sound and to hold researchers and IRBs accountable to more inclusive research practices that can create more effective research outcomes and greater community impact.

Using video vignettes in research and program evaluation for people with intellectual and developmental disabilities: A case study of the Leadership for Empowerment and Abuse Prevention (LEAP) project

People with intellectual and developmental disabilities (IDD) are often excluded from meaningful participation in research and program evaluation for various reasons, including protocols and measures that are inaccessible for people with varying cognitive and communication abilities. Emancipatory research models emphasize the importance of inclusive research practices. Video vignettes are a promising tool for research and program evaluation with people with IDD because they are standardized, they use visual imagery rather than relying on written or verbal communication, and they allow for distance from sensitive topics. The Leadership for Empowerment and Abuse Prevention (LEAP) project used video vignettes to evaluate a healthy relationship program for people with IDD. The authors discuss the process of piloting various protocols and measures, which then ultimately led to the use of video vignettes in the evaluation.

Contributing to Inclusive Research Policy and Practice: A Synthesis of Four Inclusive (Health) Research Projects

AbstractThe 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.

A participatory filmmaking process with children with disabilities in rural India: Working towards inclusive research

Children with disabilities often experience exclusion within their communities, and this exclusion can extend into research processes. The United Nations Convention on the Rights of the Child, however, emphasizes that children of all abilities need to be involved as decision makers in matters affecting them. This article provides an in-depth description of the process of a participatory action research project carried out with children with disabilities from a rural village in India. It argues for the utility of participatory filmmaking as a research methodology that supports inclusion of children with disabilities as co-researchers in research and action processes. The different phases of the research project, namely the preparatory, participatory research, and the action phase, are made transparent along with the details of activities carried out within each phase. The technical and pragmatic challenges faced within this participatory filmmaking process are pointed out, and strategies used to negotiate challenges and adapt this methodology to fit context-specific needs are shared. This account of the complex, yet flexible and adaptable, participatory filmmaking process is presented as means to support critical and informed uptakes of participatory filmmaking for inclusive research practices with children with disabilities.

Are individuals with intellectual and developmental disabilities included in research? A review of the literature

The rights of people with intellectual and developmental disabilities to be included in research is increasingly being recognised. Given this, there is a need for further understanding of the extent to which inclusive research practices with self-advocates have been successful in creating meaningfully collaborative research teams. The following review examined how often descriptions of methods and practice have aligned in inclusive research with people with intellectual and developmental disabilities, using the categories of advisory, leading and controlling, and collaborative group. Did the description of the research process fit the type of inclusive approach intended? A sample of 53 studies was systematically selected. Findings indicated that 48 of the 53 studies described their research process in terms of the advisory (n = 3), leading and controlling (n = 4), or collaborative group category (n = 41) and matched their intention, while 5 of the 53 studies described a collaborative group approach but enacted an advisory group approach. While the majority of articles described their process as congruent with the intentions that they set out, improvement in inclusive research practices is still needed. The use of a collaborative approach dominated, and leadership and control by people with intellectual and developmental disabilities was rare. Future research should explore the potential for self-advocates to lead. Also, the majority of the studies tended to collaborate with individuals with mild to moderate intellectual and developmental disabilities. Future research should consider a commitment to including individuals with severe to profound intellectual and developmental disabilities.

Closing the loop to shift the default: How alternative ways of knowing can inform research and pedagogical practice

Closing the loop to shift the default: How alternative ways of knowing can inform research and pedagogical practice

Highlighting the potential of peer-led workshops in training early-career researchers for conducting research with Indigenous communities

For decades, Indigenous voices have called for more collaborative and inclusive research practices. Interest in community-collaborative research is consequently growing among university-based researchers in Canada. However, many researchers receive little formal training on how to collaboratively conduct research with Indigenous communities. This is particularly problematic for early-career researchers (ECRs) whose fieldwork often involves interacting with communities. To address this lack of training, two peer-led workshops for Canadian ECRs were organized in 2016 and 2017 with the following objectives: ( i) to cultivate awareness about Indigenous cultures, histories, and languages; ( ii) to promote sharing of Indigenous and non-Indigenous ways of knowing; and ( iii) to foster approaches and explore tools for conducting community-collaborative research. Here we present these peer-led Intercultural Indigenous Workshops and discuss workshop outcomes according to five themes: scope and interdisciplinarity, Indigenous representation, workshop environment, skillful moderation, and workshop outcomes. Although workshops cannot replace the invaluable experience gained through working directly with Indigenous communities, we show that peer-led workshops can be an effective way for ECRs to develop key skills for conducting meaningful collaborative research. Peer-led workshops are therefore an important but insufficient step toward more inclusive research paradigms in Canada.

“I was Excited by the Idea of a Project that Focuses on those Unasked Questions” Co‐Producing Disability Research with Disabled Young People

In this article, we detail the politics and practicalities of co‐produced disability research with disabled young people with life‐limiting and life‐threatening impairments. We centre an ESRC‐funded arts‐informed co‐produced research project that has brought together a Co‐Researcher Collective of disabled young people. Co‐production is an established approach; however, our co‐researchers have led us to develop inclusive research practices that engage with online social research methods in innovative ways. As we detail our experiences, we aim to encourage disability studies researchers and others to adopt virtual environments when researching with and for the lives of disabled people.

Creating Inclusive Research Practices

AbstractThis chapter will value of including diverse voices of researchers. An innovative, cost‐effective model for assessment will be described, capturing the process implemented at a university in its efforts to center social justice within assessment and evaluation research practices.

Safe and Inclusive Research Practices for Qualitative Research Involving People with Dementia: A Review of Key Issues and Strategies.

Developing strategies to ensure the safe participation of people with dementia in research is critical to support their wider inclusion in research and to advance knowledge in the areas of dementia policy and practice. This literature review synthesizes and critically appraises different approaches to promote the safe participation of people with dementia in qualitative research. Two databases were searched for articles that discuss the methodological or ethical aspects of qualitative research involving people with dementia. We did not focus on informed consent or ethical review processes as these have been reviewed elsewhere. Key issues that impact participant safety include: language, gatekeepers, the research relationship, communication, dealing with distress, knowledge dissemination, and researcher skills. By synthesizing different approaches to safety and highlighting areas of debate, we hope to advance discussion and to contribute to the development of inclusive research methods.

Where is the epistemic community? On democratisation of science and social accounts of objectivity

This article focuses on epistemic challenges related to the democratisation of scientific knowledge production, and to the limitations of current social accounts of objectivity. A process of ’democratisation’ can be observed in many scientific and academic fields today. Collaboration with extra-academic agents and the use of extra-academic expertise and knowledge has become common, and researchers are interested in promoting socially inclusive research practices. As this development is particularly prevalent in policy-relevant research, it is important that the new, more democratic forms of research be objective. In social accounts of objectivity only epistemic communities are taken to be able to produce objective knowledge, or the entity whose objectivity is to be assessed is precisely such a community. As I argue, these accounts do not allow for situations where it is not easy to identify the relevant epistemic community. Democratisation of scientific knowledge production can lead to such situations. As an example, I discuss attempts to link indigenous oral traditions to floods and tsunamis that happened hundreds or even thousands of years ago.

Transnational conversations in the context of disability rights: building the potential for global activism

This article explores possibilities and challenges in facilitating a global dialogue about inclusion and exclusion for girls with disabilities. Drawing from a critical perspective on transnational activism, we argue that this conversation can tackle an understanding of inclusion and exclusion of girls with disabilities at different levels. We suggest that this approach could engage more deeply with the challenges of inclusive research and activism, as well as in connecting knowledge across global North and South. In so doing, this work can contribute to a more inclusive and sustainable research practice related to disability, inclusion and social justice in global contexts.

Working alongside older people with a learning disability: informing and shaping research design

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.

Conceptualizing effectiveness in disability research

Policies promoting evidence-based practice in education typically endorse evaluations of the effectiveness of teaching strategies through specific experimental research designs and methods. A number of researchers have critiqued this approach to evaluation as narrow and called for greater methodological sophistication. This paper discusses the value and complexity of working within and against the experimental research model in disability research by simultaneously engaging in inclusive research practices. A study is presented to support the discussion using case examples of researching on/for/with young people diagnosed with an autism spectrum disorder. The study incorporated a single-case research design to investigate the impact of an educational practice. The investigation was co-constructed and co-evaluated by students, parents and teachers to consider multiple pathways and perspectives on the intervention's impact on students' progress towards their goals. Deleuzian thinking was employed as a framework for producing different forms of knowledge and to help negotiate the tension existing between the processes of experimental and inclusive research. The study is both complicit with and a critique of traditional research approaches, by working partially within the experimental and inclusive models and reflecting on the benefits and limitations of each.

Developing Culturally Responsive Approaches With Southeast Asian American Families Experiencing Developmental Disabilities

Southeast Asian American families are underrepresented among recipients of special education and social services for people with developmental disabilities. Our aims were to use a community-based participatory research approach to examine Hmong and Mien families' perceptions of developmental disabilities and understand barriers to and facilitators of service provision among families experiencing developmental disabilities. We describe here a case study of a successful attempt to engage marginalized and underserved communities to understand their needs to improve access and services for persons with developmental disabilities. We conducted 2 focus groups with 11 key informants and 1 focus group with 10 family members of persons with developmental disabilities, as well as in-depth interviews with 3 shamans. Using a thematic analysis approach, we coded notes and transcripts to assess community members' understanding of developmental disabilities, experiences negotiating educational and health care systems, and barriers to high-quality care. A predominant theme was the perception that reliance on governmental support services is not appropriate. Common barriers identified included lack of accurate information, language difficulties, lack of trust, and limited outreach. These perceptions and barriers, combined with limited access to services, interfere with community acceptance and use of available support services. Despite these barriers, participants indicated that with education, outreach, and culturally responsive support, families would likely accept services. Community-based participatory methods are effective for eliciting root causes of health inequities in marginalized communities. Outreach to community-based organizations and an inclusive research practice identified social and cultural reasons for low service uptake and provided a pathway for the community to improve services for persons with developmental disabilities.

Constructing the Conditions of and Environments for Interdisciplinary Research on Perception and Action

This paper suggests ways in which art processes may contribute to the interdisciplinary study of perception and action and the relationships between body, person, and environment. Artists-turned-architects Arakawa and Gins serve as the most advanced example of an interdisciplinary research project in terms of coordinating material processes with contemporary findings, methods, and orientations from across the arts, humanities, and hard and soft sciences. In the first section of the paper, I discuss Arakawa and Gins's Reversible Destiny Lofts at Mitaka as an example of their procedural approach to long-term sustainable experimental environments. In the second section, the tactics through which Arakawa and Gins have repositioned art for the nonart purposes and common research goals are posited. Finally, I briefly outline the disciplinary positions and research values needed in order to move toward a more inclusive and interdisciplinary research practice.