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Inclusive Research: Is the Road More or Less Well Travelled?—2nd...
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Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition

A special issue of Social Sciences (ISSN 2076-0760).

Deadline for manuscript submissions: closed (1 December 2023) | Viewed by 33416

Special Issue Editor

Prof. Dr. Patricia O’Brien

E-Mail Website
Guest Editor
Sydney School of Medicine, Faculty of Medicine and Health, University of Sydney, Camperdown, NSW 2006, Australia
Interests: community participation; transition; inclusive research and education
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear Colleagues,

In 2023, Social Sciences published a Special Issue, entitled Inclusive research: is the road more or less well travelled? (O’Brien, 2023). The issue consisted of 19 articles that enabled the reader to reflect on how far inclusive research had permeated the research scene. The issue attracted inclusive researchers globally, emphasising that inclusive research had succeeded in challenging the practice of people with intellectual disabilities being “the researched” rather than “being and becoming researchers” (Garratt et al., 2022).  

Counting each of the 19 articles as a milestone along the road of inclusive research, they were both celebratory and challenging in nature. Celebrated throughout the Special Issue was that being and becoming an inclusive researcher had increased the confidence of people with the lived experience of disability in defining who they were, supported them to affirm themselves through participating  as a solo author, with a partner or as part of an inclusive research team (High and Robinson, 2021; Herer and Schwartz, 2022; Crombie Angus and Angus, 2022). Telling their own stories inspired their peers to join them. Stopping along the road to hear what made or could make for good working inclusive relationships often flipped the celebration into a challenge. To achieve diversity-sensitive work, the inclusive research voice suggested players should experience belonging, competency building, self-awareness and sharing power through the gift of much needed time and mutual engagement

(Sergeant et al. 2022). The voice for inclusive researchers with the lived experiences of intellectual disability needed to be one that exercised control, discussed selected research strategies and engaged in dialogue on ongoing issues with all project stakeholders (Zaagsma et al. 2022). 

The documenting of research strategies also played a part in the Special Issue. Emphasis was placed on the need for teaming (Bonello et al. 2022). Members needed to debrief regularly.  

(Westermann et al. 2022) and recognise that inclusive teams can work in all learning and research spaces not, just disability-specific ones (Carnemolla et al. 2022).

All data collection analysis strategies were aimed to be accessible through using a range of approaches, for example, objects, image theatre and body mapping (Rojas-Pernia et al. 2022).  The importance of building relationships between all members of the research team was stressed. The relational side of inclusive research was evidenced throughout the pandemic, indicating how conducting inclusive research could detract from social isolation (Puyalto et al. 2022).  

Within this Special Issue, the boundaries of research methodology that aligned with the principles of inclusive research (Walmsley and Johnson, 2003) were pushed. The role that persons with profound intellectual disabilities can play in research was verified (de Hass et al, 2022), as was that of developing a Community of Development (COD) versus that of a Community of Practice (COP) (Knevel et al. 2022). Further, other disciplines not known for their work in inclusive research, such as the criminal justice system (Doyle et al. 2022) and health rehabilitation (Layton et al. 2022), identified that there were people with the experience under investigation missing from their research teams. Well represented, nevertheless, were advocate researchers who left the reader with a manifesto on how to conduct inclusive research, strongly arguing the need for equal relationships with academic researchers, increased government funding, the development of career paths for inclusive researchers setting up national advocacy and research bodies and an academic community that accommodates the need for accessible language (Hopkins et al. 2022). Both the first (Garratt et al. 2022) and final articles (O’Brien et al. 2022) in the Special Issue looked forward through looking back, recognising the interplay between the past and the present in sustaining the gains made within the paradigm of inclusive research. Challenges are made to all involved in inclusive research, including that people with intellectual disabilities should become more involved in the development of proposals, accompanied by policy makers partnering with people to evaluate policy outcomes. Such partnerships could be instrumental in the commissioning of research to bridge the gaps between aspiration of quality lives and life outcomes.

Within the context of the MDPI Special Issue on inclusive research, the paradigm is now a road more well-travelled by people with intellectual disabilities, different from earlier roads where they experienced research “being done to them” rather than “the doing of it”. A second Special Issue will now build on the evidence gained, continuing to capture what are the important research questions, methodologies and outcomes relevant to the lives of people with the lived experience of disabilities. 

The first edition of this Special Issue leaned on Robert Frost's poem where, in 1916, he wrote, 

         Two roads diverged in a wood, and I
         I took the one less travelled by,
         and that has made all the difference. 

As making a difference  can sometimes be short lived, the second edition will continue to explore what difference inclusive research can make. The first edition demonstrated that the road is open to those researchers who wish to travel inclusively, with the second edition opening a further opportunity to illustrate the sustainability of inclusive research. Moving now from the inspiration of Robert Frost to that of Walt Whitman, the new Issue is simply entitled, Inclusive research: An open road? Whitman’s words are extracted from  his poem, The song of the open road, where choice drives the journey.

         Afoot and light-hearted I take to the open road,

         Healthy, free, the world before me,

         The long brown path before me

             leading wherever I choose.

         Walt Whitman, 1855

Articles are welcomed across a range of topics, including, but not limited to, those listed below. Feel free to add topics of your interest that evidence the successes and challenges of  “being on the open road”.

Some suggested topics

  • Personal stories of choosing where the open road of inclusive research can lead.
  • Outcomes of teaming as inclusive researchers.
  • Challenges and unmet needs of being together on the more well-travelled road of inclusive
  • Breakthroughs in tackling challenges of conducting research inclusively.
  • Breaking down barriers to include researchers with alternative forms of communication.

Hearing the voice of inclusive researchers in bridging the gaps of: being paid

  • developing a research career
  • being appointed as a member of a research funding group
  • working in partnership with policy makers.
  • Offering training within the disability and aligned sectors on the where, what and how of inclusive research.
  • On being heard as advocate researchers
  • The changing and evolving principles and practice of inclusive research arising from being seen and heard on the open road.

References

  1. Bonello, Isabel, Sandra Borg, Anne-Marie Callus, and Cristina Grech. 2022. Reflections on the Implementation of an Ongoing Inclusive Research Project. Social Sciences 11: 234. [Google Scholar] [CrossRef]
  2. Carnemolla, Phillippa, Jack Kelly, Catherine Donnelley, and Aine Healy. 2022. Reflections on Working Together in an Inclusive Research Team. Social Sciences 11: 182. [Google Scholar] [CrossRef]
  3. Crombie Angus, Fionn, and Jonathan Angus. 2022. Exploring My Life Path by Asking 600 People What They Love about Theirs. Social Sciences 11: 551. [Google Scholar] [CrossRef]
  4. de Haas, Catherine, Joanna Grace, Joanna Hope, and Melanie Nind. 2022. Doing Research Inclusively: Understanding What It Means to Do Research with and Alongside People with Profound Intellectual Disabilities. Social Sciences 11: 159. [Google Scholar] [CrossRef]
  5. Doyle, Caroline, Sophie Yates, and Jen Hargrave. 2022. Reflecting on the Value of Community Researchers in Criminal Justice Research Projects. Social Sciences 11: 166. [Google Scholar] [CrossRef]
  6. Garratt, Danielle, Kelley Johnson, Amanda Millear, Shaun Picken, Janice Slattery, and Jan Walmsley. 2022. Celebrating Thirty Years of Inclusive Research. Social Sciences 11: 385. [Google Scholar] [CrossRef]
  7. Herer, Alix, and Ariel E. Schwartz. 2022. How Being a Researcher Impacted My Life. Social Sciences 11: 127. [Google Scholar] [CrossRef]
  8. High, Rachel, and Sally Robinson. 2021. Graduating University as a Woman with Down Syndrome: Reflecting on My Education. Social Sciences10: 444. [Google Scholar] [CrossRef]
  9. Hopkins, Robert, Gerard Minogue, Joseph McGrath, Lisa Jayne Acheson, Pauline Concepta Skehan, Orla Marie McMahon, and Brian Hogan. 2022. “Digging Deeper” Advocate Researchers’ Views on Advocacy and Inclusive Research. Social Sciences 11: 506. [Google Scholar] [CrossRef]
  10. Knevel, Jeroen, Jean Pierre Wilken, and Alice Schippers. 2022. Experiences of Inclusive Action and Social Design Research with Social Workers and People with Intellectual Disabilities. Social Sciences 11: 121. [Google Scholar] [CrossRef]
  11. Layton, Natasha, Em Bould, Ricky Buchanan, Jonathon Bredin, and Libby Callaway. 2022. Inclusive Research in Health, Rehabilitation and Assistive Technology: Beyond the Binary of the ‘Researcher’ and the ‘Researched’. Social Sciences 11: 233. [Google Scholar] [CrossRef]
  12. O’Brien, Patricia, Edurne Garcia Iriarte, Roy Mc Conkey, Sarah Butler, and Bruce O’Brien. 2022. Inclusive Research and Intellectual Disabilities: Moving Forward on a Road Less Well-Travelled. Social Sciences 11: 483. [Google Scholar] [CrossRef]
  13. Puyaltó, Carolina, Maialen Beltran, Tània Coll, Gemma Diaz-Garolera, Marta Figueras, Judit Fullana, Cristina González, Maria Pallisera, Joan Pujolar, and Ana Rey. 2022. Relationships of People with Intellectual Disabilities in Times of Pandemic: An Inclusive Study. Social Sciences 11: 198. [Google Scholar] [CrossRef]
  14. Rameka, Lesley. 2017. Kia whakatōmuri te haere whakamua: ‘I walk backwards into the future with my eyes fixed on my past’. Contemporary Issues in Early Childhood 17: 387–98. [Google Scholar] [CrossRef]
  15. Rojas-Pernia, Susana, and Ignacio Haya-Salmón. 2022. Inclusive Research and the Use of Visual, Creative and Narrative Strategies in Spain. Social Sciences 11: 154. [Google Scholar] [CrossRef]
  16. Sergeant, Sofie, Henriëtte Sandvoort, Geert Van Hove, Petri Embregts, Kim van den Bogaard, Elsbeth Taminiau, and Alice Schippers. 2022. On the Road Together: Issues Observed in the Process of a Research Duo Working Together in a Long-Term and Intense Collaboration in an Inclusive Research Project. Social Sciences 11: 185. [Google Scholar] [CrossRef]
  17. Strnadová, Iva, Julie Loblinzk, and Joanne Danker. 2022. Sex Education for Students with an Intellectual Disability: Teachers’ Experiences and Perspectives. Social Sciences 11: 302. [Google Scholar] [CrossRef]
  18. Walmsley, Jan, and Kelley Johnson. 2003. Inclusive Research with People with Learning Disabilities: Past, Present and Futures. London: Jessica Kingsley Publishers. [Google Scholar]
  19. Westermann, Greta, Erin Louise Whittle, Susan Adrian, Suzanne Jessep, Melanie Nolan, Bruce O’Brien, Jasamit Pannu, Elizabeth Young, and Mary-Ann O’Donovan. 2022. Being an Inclusive Researcher in a National Consultation Exercise—A Case Study. Social Sciences 11: 164. [Google Scholar] [CrossRef]
  20. Whitman, Walt, Frank Brewer Bemis, Richard Maurice Bucke, Clarence Cook, Edward Gordon Craig, Eugene Field, John Stuart Groves, et al. Leaves of Grass. [Brooklyn, New York: Walt Whitman, 1855] Pdf. https://www.loc.gov/item/03023679/.
  21. Zaagsma, Miriam, Mark Koning, Christien van Andel, Karin Volkers, Alice Schippers, and Geert van Hove. 2022. A Closer Look at the Quest for an Inclusive Research Project: ‘I Had No Experience with Scientific Research, and then the Ball of Cooperation Started Rolling’. Social Sciences 11: 186. [Google Scholar] [CrossRef]

Manuscripts can be submitted until the deadline of 1 October 2023. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the Special Issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (between. 100-200 words) can be sent to the Editorial Office for announcement on this website. Enquiries can also be made directly to Prof Emerita Patricia O’Brien, Guest Editor, [email protected] Digital abstracts also are encouraged as can be found in the de Hass article referenced above.

Prof. Dr. Patricia O’Brien
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a double-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Social Sciences is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 1800 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

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Published Papers (15 papers)

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17 pages, 1601 KiB  
Article
Looking Back When Moving Forward: Researching Sites of Former Disability Institutions
by Jack Kelly, Leigh Creighton, Phillippa Carnemolla and Linda Steele
Soc. Sci. 2024, 13(10), 546; https://doi.org/10.3390/socsci13100546 - 15 Oct 2024
Viewed by 771
Abstract
This article discusses an inclusive research program where colleagues and co-researchers (with intellectual disability) guide and inform future research practice to ensure research is targeted to areas of significance and relevance to them. The research program is about sites of former disability institutions. [...] Read more.
This article discusses an inclusive research program where colleagues and co-researchers (with intellectual disability) guide and inform future research practice to ensure research is targeted to areas of significance and relevance to them. The research program is about sites of former disability institutions. Many people with intellectual disability in Australia were segregated and forced to live in disability institutions until deinstitutionalisation efforts became mainstream in the late 20th Century. We are a team of four people based in New South Wales, Australia. Our team includes disability advocates and researchers who have contributed to a program of research exploring connections between sites of former disability institutions and contemporary disability rights. In this article, we reflect on conversations about our research undertaken so far and where the research goes from here. We explore five pillars of action informing how research relating to disability institutions can progress: 1. Current use: research exploring erasure of experiences of institutionalisation communicated through educational resources and maps about current use of sites of former disability institutions; 2. Reparative planning processes: research developing frameworks for alternative approaches to planning and heritage processes supporting alternative uses of former sites of disability institutions; 3. Official recognition and redress: research exploring perspectives on governments formally recognising and remedying experiences of people with disability who were institutionalised; 4. Community-led repair and remembrance: research identifying practices for both celebrating advocates with disability and reckoning with and repairing familial and social bonds broken through institutionalisation; 5. Community-inclusive practices: research exploring endurance of institutional practices in disability accommodation in community settings. These five pillars are underpinned by three foundational layers: advancing disability human rights; reckoning with intersections between disability institutions and settler colonialism, other dynamics of oppression, and eugenics; and using inclusive practices. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
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11 pages, 255 KiB  
Article
Understanding Epistemic Justice through Inclusive Research about Intellectual Disability and Sexuality
by Lesley Verbeek, Mark Koning and Alice Schippers
Soc. Sci. 2024, 13(8), 408; https://doi.org/10.3390/socsci13080408 - 6 Aug 2024
Viewed by 2255
Abstract
Formal language: This paper discusses inclusive research and epistemic justice by using an example of a published study the authors conducted on intellectual disability and sexuality in supported living environments. Our study addressed taboos and pushed boundaries in content and methodology through two [...] Read more.
Formal language: This paper discusses inclusive research and epistemic justice by using an example of a published study the authors conducted on intellectual disability and sexuality in supported living environments. Our study addressed taboos and pushed boundaries in content and methodology through two ways of inclusive research: (1) the second author of this paper who has an intellectual disability was a main researcher in the study; and (2) we interviewed people with intellectual disabilities about their own experiences as well as their desired solutions to obstacles they face in their supported living environments. Their input was centralized in the final research report. This method challenged the epistemic injustice of who have historically not been ‘allowed’ to produce knowledge in research. This paper offers historical insight into epistemic injustice as well as relational approaches from critical disability studies and non-Western understandings of disability that ‘rethink’ disability and that can thus promote epistemic justice in academic theory. By addressing both practice and theory in this paper, we aim to contribute to the growing body of inclusive research and to the epistemic justice of people with intellectual disabilities. Plain language: (1) Epistemology = thinking about knowledge, producing knowledge, sharing knowledge. (2) In history, people with intellectual disabilities have often been excluded from participating in this. This is called epistemic injustice. It is caused by the discrimination of people with intellectual disabilities (ableism). (3) Performing inclusive research with people with intellectual disabilities challenges this. It contributes to epistemic justice. Researchers and interviewees with intellectual disabilities can bring knowledge from lived experience into research. (4) Knowledge from lived experience has not always been valued in traditional research. That means we also need to think differently about ‘knowledge’, and about ‘disability’ and its ‘value’. (5) Discrimination based on disability has a long history. For instance: during colonialism by European countries (starting in the 15th century), false ideas about ‘poor health’ and ‘low intelligence’ were already used to justify slavery. People with disabilities have often been locked away or even killed because they have been seen as ‘less valuable’. These ways of thinking still exist. They influence our understanding of ‘epistemology’ because they decide whose way of thinking and way of life is valuable or not valuable. We need to change this way of thinking. (6) Some academic fields that help are critical disability studies, indigenous studies, and feminist posthumanism. These fields challenge ableist ways of thinking. They can help us understand disability as something that is not negative or less valuable, but simply part of what makes us human. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
9 pages, 217 KiB  
Article
Our Recipe for Good Inclusive Research
by Felicity Crowther, Hannah Beinke, Rachel High, Chloe Ru and Fiona Rillotta
Soc. Sci. 2024, 13(8), 401; https://doi.org/10.3390/socsci13080401 - 30 Jul 2024
Viewed by 571
Abstract
Co-researchers with intellectual disabilities and a Ph.D. student formed an inclusive research team. The co-researchers joined the inclusive research team so they could learn more about research and have control over the research. Our team have held regular research skills meetings. The focus [...] Read more.
Co-researchers with intellectual disabilities and a Ph.D. student formed an inclusive research team. The co-researchers joined the inclusive research team so they could learn more about research and have control over the research. Our team have held regular research skills meetings. The focus of these meetings was getting to know each other and learning what each person brought to the team, as well as learning what inclusive research is and how to conduct research together. Learning these things has helped to design and undertake an inclusive research project about pets for people with intellectual disabilities. In this article, our team shares our experience of conducting inclusive research. We have learnt that each team member brings their own strengths to the team and we have connected and formed friendships. We completed an inclusive research project and found there were some challenges our team had to overcome. We conclude that people with intellectual disabilities are capable of leading research. Being part of an inclusive research team enables co-researchers to show others what they can do. Sharing what our team has found out can help others to conduct inclusive research. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
15 pages, 671 KiB  
Article
Structures of Oppression or Inclusion: What Systemic Factors Impact Inclusion in Disability and Rehabilitation Research?
by Natasha Layton, Rachelle A. Martin, John A. Bourke and Nicola M. Kayes
Soc. Sci. 2024, 13(5), 229; https://doi.org/10.3390/socsci13050229 - 23 Apr 2024
Cited by 1 | Viewed by 1368
Abstract
This manuscript considers the drivers towards inclusive research in the field of disability and rehabilitation; including some of the tools and frameworks that may support its realisation. We, a group of researchers engaged in rehabilitation research from lived experience and ‘conventional’ (non-lived experience) [...] Read more.
This manuscript considers the drivers towards inclusive research in the field of disability and rehabilitation; including some of the tools and frameworks that may support its realisation. We, a group of researchers engaged in rehabilitation research from lived experience and ‘conventional’ (non-lived experience) positions, reflect on our collective endeavours to bring about inclusion in research and specify the systemic factors constraining inclusion in research. We conclude by asking the following: how might we reimagine systems where the mechanisms of research production are in the hands of those impacted by the research, and where are intersectionalities both sought and valued? Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
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10 pages, 218 KiB  
Article
‘The Ball of Cooperation Rolls on’: Some Personal Reflections on My Experiences as a Researcher
by Mark Koning, Miriam Zaagsma, Geert Van Hove and Alice Schippers
Soc. Sci. 2024, 13(4), 213; https://doi.org/10.3390/socsci13040213 - 16 Apr 2024
Viewed by 1068
Abstract
People with disabilities are increasingly actively involved within research projects. For many of them this is a temporary role, but some work on longer-term projects and even build a career out of it. This is the case for the first author of this [...] Read more.
People with disabilities are increasingly actively involved within research projects. For many of them this is a temporary role, but some work on longer-term projects and even build a career out of it. This is the case for the first author of this paper. He has worked as a researcher for almost six years. He is involved in various projects, all highly diverse in terms of subject, design, scope and collaboration with fellow researchers. In this paper, he looks back on his experiences in recent years. Together with colleagues, he reflects on his contribution to the various projects, his own development as a researcher and the impact of the work on his personal life. He finds that the essence of the motto ‘Nothing about us, without us’ has become increasingly intertwined with his life and identity through his work. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
11 pages, 923 KiB  
Article
The Role of Trust, Respect, and Relationships in Maintaining Lived Experience and Indigenous Authority in Co-Designed Research with People Living with Disability
by Sharon Kerr, Roslyn Sackley, John Gilroy, Trevor Parmenter and Patricia O’Brien
Soc. Sci. 2024, 13(4), 192; https://doi.org/10.3390/socsci13040192 - 27 Mar 2024
Viewed by 1416
Abstract
Co-design of research can evolve organically when the questions to be asked have their roots deep1 in the soil of partnerships based on trust, respect, and a common vision for equity and inclusion. White Questions—Black Answers, a PhD thesis research project focusing on [...] Read more.
Co-design of research can evolve organically when the questions to be asked have their roots deep1 in the soil of partnerships based on trust, respect, and a common vision for equity and inclusion. White Questions—Black Answers, a PhD thesis research project focusing on the inclusion of Indigenous students with disability in the Australian Higher Education Sector, demonstrates this premise. Founded on Indigenous Standpoint Theory, the methodology of this research foregrounds the central role of Indigenous people with lived experience of disability—in the study design, its implementation, and in the validation of the results. This paper shares the conceptual framework and relationship hierarchy for the research, ensuring that the authority of those with lived experience was maintained and central to all research activities. It showcases a way forward for other fields of co-designed research, delivering both academic rigour and leadership by those with lived experience. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
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15 pages, 264 KiB  
Article
Using Inclusive Research Methods and the Housing Pathways Framework in Future Planning and Housing Research: A Pilot Study
by Irene Belperio, Fiona Rillotta, Tim Adam, Ruth Walker and Claire Hutchinson
Soc. Sci. 2024, 13(3), 170; https://doi.org/10.3390/socsci13030170 - 18 Mar 2024
Viewed by 1434
Abstract
Housing and future planning have been key areas of interest in intellectual and development disabilities research for a number of decades. However, the voices of adults with intellectual disabilities are underrepresented in this area of research. Furthermore, the use of inclusive research methods [...] Read more.
Housing and future planning have been key areas of interest in intellectual and development disabilities research for a number of decades. However, the voices of adults with intellectual disabilities are underrepresented in this area of research. Furthermore, the use of inclusive research methods remains limited in the literature. This study sought to pilot the use of inclusive research approaches to investigate the viability of these methods and to begin to build an evidence base of inclusive research in this area of work. Inclusive data analysis and co-authorship approaches were used on a small qualitative dataset from a larger study investigating future planning and transitions out of the family home by adults with intellectual disabilities and their families in Australia. Three semi-structured interviews with adults with intellectual disabilities and family members regarding their housing preferences and planning were analysed using an inclusive data analysis approach following the principles of Interpretative Phenomenological Analysis. These were then further analysed using a plain language version of the housing pathways framework. The results of the pilot study will be used to inform the inclusive research methods used for the remainder of the project dataset. Overall, the use of inclusive methods to pilot a conceptual model to better understand qualitative data was found to be feasible. Small adjustments to the process and accessibility to better support engagement with the research process are recommended. Lastly, greater investigation into co-authorship approaches and options is suggested as a fruitful avenue of inquiry for future research. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
18 pages, 283 KiB  
Article
Cooperation with Persons with Intellectual Disabilities: Reflections of Co-Researchers Associated with Conducting Inclusive Research
by Katarzyna Ćwirynkało, Monika Parchomiuk and Agnieszka Wołowicz
Soc. Sci. 2024, 13(3), 136; https://doi.org/10.3390/socsci13030136 - 29 Feb 2024
Viewed by 1358
Abstract
Traditionally, persons with intellectual disabilities in Poland have been researched on and treated as not competent enough to research with. Despite its scientific merit and practical usefulness, inclusive research involving persons with intellectual disabilities as co-researchers has only recently become a subject of [...] Read more.
Traditionally, persons with intellectual disabilities in Poland have been researched on and treated as not competent enough to research with. Despite its scientific merit and practical usefulness, inclusive research involving persons with intellectual disabilities as co-researchers has only recently become a subject of interest in this country. The added value of inclusive projects should be analysed from two standpoints, i.e., those of co-researchers with disabilities and co-researchers without disabilities. In this article, we discuss the latter perspective, focusing on Polish researchers without disabilities who have experience in conducting inclusive research with persons with intellectual disabilities. The key aspect of the analyses was to highlight the potential of persons with intellectual disabilities as co-researchers. As a result, we have determined several important aspects of inclusive research in the relational perspective involving co-researchers with intellectual disabilities and co-researchers without intellectual disabilities and the community perspective. The analyses identified four superordinate themes: building relationships in the research team; opportunities and constraints associated with the implementation of inclusive projects; institutional barriers; and the importance of the role of a co-researcher without intellectual disabilities. Implications for further research and practice are discussed. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
13 pages, 249 KiB  
Article
Examining People’s Experiences of Working in Collaborative Relationships While Conducting Inclusive Research Involving Persons with Intellectual Disabilities
by Kim van den Bogaard, Noud Frielink, Alice Schippers and Petri Embregts
Soc. Sci. 2024, 13(2), 110; https://doi.org/10.3390/socsci13020110 - 9 Feb 2024
Viewed by 1627
Abstract
This study examined the experiences of working in collaborative relationships while conducting inclusive research involving persons with intellectual disabilities. More specifically, the study explored work relationships, social relationships, and factors that influence collaboration within inclusive research teams. Interviews were conducted with nine researchers [...] Read more.
This study examined the experiences of working in collaborative relationships while conducting inclusive research involving persons with intellectual disabilities. More specifically, the study explored work relationships, social relationships, and factors that influence collaboration within inclusive research teams. Interviews were conducted with nine researchers with intellectual disabilities, eight academic researchers, and nine principal investigators who were all involved in six inclusive research projects together. The analysis of the interviews produced four themes: (1) the diverse nature of the involvement of researchers with intellectual disabilities; (2) the significance of involving researchers with intellectual disabilities within academic research; (3) shaping equity in research projects; and (4) stereotyping hindering collaborations with researchers with intellectual disabilities. These findings have implications for research and practice, both in terms of promoting inclusive research and facilitating the meaningful participation of persons with intellectual disabilities within various aspects of society, including education, employment, healthcare, and social activities. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
17 pages, 589 KiB  
Article
Peer Support Provided by People with Intellectual and Developmental Disabilities: A Rapid Scoping Review to Develop a Toolkit for Inclusive Research
by Beth Pfeiffer, Taye Hallock, Luke Tomczuk and Jessica Kramer
Soc. Sci. 2024, 13(1), 47; https://doi.org/10.3390/socsci13010047 - 11 Jan 2024
Viewed by 2171
Abstract
Inclusive research teams actively engage people with intellectual and developmental disabilities at all stages of research development, implementation, and dissemination. There is a dearth of research that specifically addresses the use of peer support in research engagement, yet research using peer support may [...] Read more.
Inclusive research teams actively engage people with intellectual and developmental disabilities at all stages of research development, implementation, and dissemination. There is a dearth of research that specifically addresses the use of peer support in research engagement, yet research using peer support may provide a useful framework for engagement in inclusive research teams. A rapid scoping review was completed following the reporting guidelines for PRISMA-SCR. The scoping review identified five peer support roles (communication, sharing experiences, helping peers to learn, peer development, and creating a welcoming environment) and two types of support and accommodation for peer supporters (individual and environmental). The findings of the rapid scoping review aided in developing key sections of a Peer Support Toolkit to help people with intellectual and developmental disabilities engage in research to create more inclusive research teams and research that is informed directly by the needs of people with lived experience. The scoping review and toolkit were completed by an inclusive team. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
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12 pages, 1088 KiB  
Article
Expanding Possibilities for Inclusive Research: Learning from People with Profound Intellectual and Multiple Disabilities and Decolonising Research
by Joanna Grace, Melanie Nind, Catherine de Haas and Joanna Hope
Soc. Sci. 2024, 13(1), 37; https://doi.org/10.3390/socsci13010037 - 7 Jan 2024
Cited by 2 | Viewed by 8512
Abstract
This paper pursues the argument that finding a way for people with profound intellectual and multiple disabilities to belong in inclusive research requires starting from a deep knowledge of the people in question. This paper illustrates this idea in action showing what can [...] Read more.
This paper pursues the argument that finding a way for people with profound intellectual and multiple disabilities to belong in inclusive research requires starting from a deep knowledge of the people in question. This paper illustrates this idea in action showing what can be possible from building research around ‘being with’ people with profound intellectual disabilities, creating intersubjective knowledge together. It follows the journey of fostering a relational research space that a young person with profound intellectual and multiple disabilities can occupy, their assenting to share the space and ensuing exploring together in embodied ways. Small stories show where this particular open road of inclusive research can lead. The analysis interacts with provocations from decolonising research that demand respect for wider ways of knowing, doing research and being human. The paper invites reflection on the ways in which research needs to be deconstructed to be inclusive for all. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
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Review

Jump to: Research, Other

30 pages, 16020 KiB  
Review
Self-Advocacy in Inclusive Research
by Courtney Krueger, Lieke van Heumen and Claire van den Helder
Soc. Sci. 2024, 13(3), 134; https://doi.org/10.3390/socsci13030134 - 28 Feb 2024
Viewed by 2715
Abstract
The literature on inclusive research has established its relationship with self-advocacy for people with intellectual disabilities. Self-advocacy has been described as both a requirement and a result of inclusive research. Additionally, the process of becoming an inclusive researcher can be seen as self-advocacy [...] Read more.
The literature on inclusive research has established its relationship with self-advocacy for people with intellectual disabilities. Self-advocacy has been described as both a requirement and a result of inclusive research. Additionally, the process of becoming an inclusive researcher can be seen as self-advocacy for people with intellectual disabilities. As inclusive research continues to become more prominent, and more people with intellectual disabilities become inclusive researchers, we need to continue to consider this fundamental relationship and how self-advocacy and inclusive research can inform and support each other. In this paper, we first discuss the history of self-advocacy and inclusive research and what inclusive researchers have shared about the relationship between self-advocacy and inclusive research. We then present the experiences of an inclusive researcher with intellectual disability with self-advocacy and how the process of becoming an inclusive researcher impacted those experiences. We conclude the paper with reflections on how future inclusive research should consider the role of self-advocacy. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
16 pages, 301 KiB  
Review
“Will I Be Celebrated at the End of This Training?” Inclusive Research in Kenya
by Rachael W. Wanjagua, Lieke van Heumen and Sarah Parker Harris
Soc. Sci. 2024, 13(2), 95; https://doi.org/10.3390/socsci13020095 - 2 Feb 2024
Viewed by 1609
Abstract
The development and practice of inclusive research with people with intellectual disabilities is complex, revealing challenges and lessons that inform innovative and novel methodological approaches. In Africa, inclusive research still lags for various reasons. First, due to societal misconceptions that portray people with [...] Read more.
The development and practice of inclusive research with people with intellectual disabilities is complex, revealing challenges and lessons that inform innovative and novel methodological approaches. In Africa, inclusive research still lags for various reasons. First, due to societal misconceptions that portray people with intellectual disabilities as unable to self-advocate or as lacking agency and self-determination; second, due to a lack of trained researchers and ethics committees on inclusive research practices. This paper critically reflects on and discusses the strategies and methods used to conduct an inclusive research study in Kenya. The focus was on the methodological approach of including people with intellectual disabilities as researchers in Kenya. Two people with intellectual disabilities were trained as research assistants. This paper describes the experiences with Institutional Review Boards, the processes and experiences while training this research assistants using a UK-developed curriculum, and fieldwork experiences while piloting interview guides, conducting interviews, and conducting focus groups with this research assistants. This study findings indicate the need to culturally adapt co-researcher training, the importance of working with support personnel who empower researchers with intellectual disabilities, and the need for greater advocacy to change negative attitudes towards people with intellectual disabilities that hinder their participation in research. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)

Other

Jump to: Research, Review

13 pages, 265 KiB  
Essay
Disability Theatre as Critical Participatory Action Research: Lessons for Inclusive Research
by Rachelle D. Hole and Leyton Schnellert
Soc. Sci. 2024, 13(2), 116; https://doi.org/10.3390/socsci13020116 - 13 Feb 2024
Viewed by 1790
Abstract
Informed by critical disability studies and disability justice, this article describes the reflections of two university researchers co-researching with self-advocates (individuals with intellectual disability), theatre artists, researchers, and a community living society to create social justice disability theatre as critical participatory research (CPAR), [...] Read more.
Informed by critical disability studies and disability justice, this article describes the reflections of two university researchers co-researching with self-advocates (individuals with intellectual disability), theatre artists, researchers, and a community living society to create social justice disability theatre as critical participatory research (CPAR), demonstrating how disability theatre can contribute to and advance inclusive research practice. Disability justice-informed theatre as CPAR has direct relevance to people with intellectual disabilities; offers a platform where self-advocates’ diverse ways to communicate and be in the world are honoured and taken up as resources to the research and community; and can generate mentorship opportunities for self-advocates to learn, practice, and develop research skills. Significances include showing how the theatre creation process (devising, developing, and refining scenes) is research in itself and how tensions are recognized as sites of possibility. Future research should explore how increasing pathways to communication, co-creation of KT strategies, and protocols for power sharing and problem solving within disability theatre as CPAR impact the roles, outcomes, and experiences of disabled and non-disabled researchers and audience members. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
17 pages, 1457 KiB  
Perspective
Life Story Research with People Aging with Intellectual Disabilities: An Adaptation of the Lifeline Interview Method
by Lieke van Heumen and Tamar Heller
Soc. Sci. 2024, 13(2), 107; https://doi.org/10.3390/socsci13020107 - 8 Feb 2024
Viewed by 1842
Abstract
A key feature of inclusive research is the accessibility of research procedures to meaningfully engage people with intellectual disabilities in research processes. Creating accessible research procedures requires innovations in methods traditionally used in research. This paper describes how the Lifeline Interview Method by [...] Read more.
A key feature of inclusive research is the accessibility of research procedures to meaningfully engage people with intellectual disabilities in research processes. Creating accessible research procedures requires innovations in methods traditionally used in research. This paper describes how the Lifeline Interview Method by Assink and Schroots was adapted and implemented in a study using life story research to better understand the experiences of older adults with intellectual disabilities. Twelve adults with intellectual disabilities over the age of 50 participated between two and seven times in interviews about their life histories. The interviewer assisted in the construction of timelines of key events in the participants’ individual life stories, and the participants decorated their lifelines throughout the course of the interviews. The lifeline process was an effective tool to engage the participants in the research process, support participation, and provide access for people with intellectual disabilities to retrieve their life experiences. Challenges in the lifeline process included barriers to gathering sufficient information to construct timelines and gatekeepers withholding access to information. Full article
(This article belongs to the Special Issue Inclusive Research: Is the Road More or Less Well Travelled?—2nd Edition)
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