By Yani Hamdani, Nicole Bobbette, Muhammad Irfan Jiwa, & Daniel Share-Strom
“Nothing about us without us! And that includes research!” This rallying cry was the title of a keynote talk by Peter Park, co-founder of People First of Canada, and Sue Hutton, Respecting Rights Coordinator at ARCH Disability Law Centre, at the 2018 Ontario Association on Developmental Disabilities Research Special Interest Group Conference (1). Building on a disability rights mantra of “nothing about us without us” (2), Park and Hutton advocated for actively involving people with intellectual and developmental disabilities (IDD) in research that is about them and their lives. Many rehabilitation researchers have incorporated practices to support involving people with disabilities in research as participants, advisors, collaborators, and co-investigators.
At the Azrieli Adult Neurodevelopmental Centre at the Centre for Addiction and Mental Health (CAMH), we developed a research training course for people with IDD to support our efforts toward their research involvement. This commentary describes our experiences of running the course and highlights lessons we learned through the process for fostering inclusive research collaborations with people with IDD. In sharing our insights, we aim to further discussions about collaborating on rehabilitation research that matters to people with IDD.
The Azrieli Centre is a leader in mental health and IDD research in Canada and is committed to improving the health and social care of people with IDD through inclusive, patient-oriented research. People with IDD and caregivers work as advisors and co-researchers in a wide range of projects related to health services design, implementation, evaluation and research. In an effort to build our capacity to support advisors and co-researchers, our team (consisting of researchers, clinicians, students and people with lived experience) created the research training course which was inspired by a similar program run for people with learning disabilities in the United Kingdom (3). We conducted an in-person version of the course prior to the pandemic but shifted to an online format at the end of 2020.
The Azrieli Centre is a leader in mental health and IDD research in Canada and is committed to improving the health and social care of people with IDD through inclusive, patient-oriented research.
Six people with IDD participated in our 6-week virtual Introduction to Research. Table 1 provides a course overview. Our three main objectives for participants were: (a) to understand basic research concepts and processes (e.g., terminology, steps); (b) to apply their new knowledge in practical learning activities; and (c) to learn about ways to participate in mental health research. We also tested some strategies for evaluating the course learning activities and outcomes.
In preparing the course, we reviewed current trends and recommendations in the literature on patient engagement, patient-oriented research, and inclusive research. Patient-oriented research is driven by patients’ priorities for their health and daily lives and is considered essential to improve health outcomes and health systems (4). In Canada, the CIHR Patient Engagement Framework (4) provides guidance on principles and areas of engagement, and evaluation strategies. Although this resource provided broad guiding principles for meaningful engagement of patients, they did not offer specific, practical strategies and methods for enacting these principles for people labelled with IDD, who communicate, think, function, and socially interact in different ways than non-disabled people.
Nathan Anderson (Unsplash)
Recognizing this gap, we looked to recent inclusive research literature specific to collaborating with people with IDD. For example, a conceptual model by Schwartz and colleagues (5) identified important contextual factors (e.g., time, funding), team-level structures (e.g., team composition, organization, division of labour, decision-making), and processes (e.g., communicating intentionally and transparently, supporting equal involvement) to foster and maintain inclusive research collaborations. Importantly, equal involvement in research for people with IDD referred to the availability of opportunities to participate and contribute meaningfully but did not necessarily involve the same roles and activities as academically trained researchers (5,6). Thus, we were mindful that people with IDD might have their own ideas about how they want to be involved in research following the course and that involvement might look different for each person, team and project.
Research collaborations should be guided by ‘thinking with’—rather than ‘on behalf of’—people with IDD (6).
Research collaborations should be guided by ‘thinking with’—rather than ‘on behalf of’—people with IDD (6). To do this, researchers and people with IDD can co-develop methods for establishing and supporting collaborative relationships (7). For our course, we created accessible and understandable information and materials; we asked and received feedback iteratively as we went along and adjusted the course pace accordingly (7). We also incorporated critical reflexive questions in course debrief sessions. Critical reflexivity aims to foster social change through examination of social beliefs and assumptions and how they shape research and practice (9,10,11). We used a process guided by questions such as “what ‘counts’ as inclusion?,” “what does inclusive research look like?,” and “what research roles do participants want and will they be prepared for?” to explore assumptions, beliefs, and values about research inclusion underpinning our training processes and research processes more broadly (8,9). We learned several lessons through running and reflecting on the course that offers ways to move toward inclusive research collaborations.
- Pre-course activities are critical. Preparatory activities (i.e., intake, orientation, sending materials in advance) helped to prepare participants and allowed facilitators to tailor the course activities to meet the unique needs of the learners.
- The facilitator-to-participant ratio is important. A high facilitator to participant ratio [1:2] was very helpful for supporting participants’ diverse learning and communication styles.
- Offering a virtual platform increases accessibility. A virtual course provided participants with multiple ways to communicate and engage in discussions (e.g., in the chat, onscreen) and decreased barriers (e.g., transportation to an in-person course location) to participation.
- How you think about inclusion matters just as much as what you do. Taking a critical reflexive approach helped us to explore our and participants’ assumptions and expectations about inclusion in the course and in research. Much like the work by Schwartz and colleagues (5), we learned that our course aims were not necessarily to provide the same degree of training as academic researchers, but rather to establish a common language and build a strong foundation of trust and rapport for research collaborations.
- Don’t underestimate the value of participation. Participants had diverse reasons for participating in the course. For some, the course was an end in itself: it offered an opportunity to learn and engage with other adult learners, but they didn’t plan or foresee getting involved extensively in a research project. Other participants were keen to get involved as co-researchers or advisors and engage in research activities, such as data collection and analysis. Although they had different motivations, participants found value in getting involved and learning more about research as a group. We were able to reframe our own understandings of successful courses and research collaborations and the various ways people with IDD want to be involved.
- Everything takes time. It takes time to build relationships, understand preferred ways of learning, communicate information in multiple ways, and review or repeat information. While our team has extensive experience working with and modifying materials for people with IDD, teaching complex and abstract research concepts in accessible ways required time, patience and creativity. People with IDD may require additional time to prepare for research involvement, and teams may need time to adjust the work pace (5). We learned that many people with IDD find it beneficial to debrief with a team member after activities in order to process and learn from their experiences before providing their perspectives and viewpoints. Thus, time in itself can be a disabling barrier to inclusion and participation in research collaborations. Rehabilitation researchers can play a role in advocating for additional time, resources and funds from granting agencies to support research
Inclusive research and patient engagement are not new ideas within rehabilitation science but putting them into practice can be challenging. The idea is to encourage the inclusion of underrepresented groups in research projects that are relevant to their priorities and interests for rehabilitation, health and social care, and for participating in their communities that are meaningful for them. While inclusive research and patient engagement frameworks can help rehabilitation researchers move toward this aim, there continues to be challenges in advancing inclusivity and participation for groups, such as people with IDD. For rehabilitation researchers, the joy of discovery includes identifying and challenging ideas about what it means to be inclusive in research and finding creative ways to co-produce research in collaboration with groups who are often excluded. With this in mind, we can work together towards shifting the mantra for research collaborations from “nothing about us without us!” to “something important to us with us!”
Table 1: Course Overview
The course included three facilitators, six participants, a student observer who took field notes, and a clinician-scientist who informed and oversaw the evaluation process. Each session was 90 minutes long and included an icebreaker, group norms, a review of the last session, a short didactic presentation, and an interactive learning activity. A guided debrief was held after each session.
|–||Recruitment, Intake & Orientation||Intake interviews to understand participant’s motivation for attending and their individual learning preferences and needs.|
Participants were individually oriented to the virtual learning platform and received an electronic or paper copy of the content.
|1||Stages of a Research Study & |
|Identifying steps of the research process|
Designing research questions
|2||Ethics & Safety in Research||Concept matching and multiple choice|
|3||Data Collection – Surveys||Case vignette – identifying risks in research|
Design survey questions
|4||Data Collection – Interviewing||Observe a “good/bad” interview and debrief|
Design an interview guide
|5||Data Analysis |
|Practice mock interviews|
Guided discussion on analyzing presented data and developing strategies to share research findings
|6||Getting Involved in Research |
Practical Next Steps
|Guided discussion and generation of questions to ask when getting involved in research|
Evaluation: We developed and piloted several evaluation methods for the course. Methods included a survey completed by the participants, observations during the online sessions, and debrief sessions with the course facilitators following each session. The survey included Likert scales (with emoticon faces) and yes/no, multiple selection, and open-ended questions written in accessible language. We created a structured template with guiding questions for the online session observations and debrief sessions, focusing on the degree to which structures, processes, and teaching approaches facilitated participant engagement and learning.
 Park and Hutton also advocated for the phrase ‘labelled with IDD’ to emphasize the purposeful classification and stigmatization of bodily differences. We support this but also use person-first language as the common convention in rehabilitation sciences.
 Learning disabilities is the terminology used in the United Kingdom in place of IDD.
Featured illustration by Viktoriya Khymych for rehabINK.
To refer to this article, it can be cited as:
Hamdani Y, Bobbette N, Jiwa MI, Share-Strom D. Towards Inclusive Rehabilitation Research for People Labelled with Intellectual and Developmental Disabilities. rehabINK. 2021:11. Available from: https://rehabinkmag.com
- Park P, Hutton S. Nothing about us without us and that means research [Internet]. Available from: https://youtu.be/pFXNVrwCSVU
- Charlton JI. Nothing about us without us. University of California Press; 1998 Mar 27.
- Tuffrey‐Wijne I, Lam CK, Marsden D, Conway B, Harris C, Jeffrey D, Jordan L, Keagan‐Bull R, McDermott M, Newton D, Stapelberg D. Developing a training course to teach research skills to people with learning disabilities: “It gives us a voice. We CAN be researchers!”. British Journal of Learning Disabilities. 2020 Dec;48(4):301-14.
- Canadian Institutes of Health Research (CIHR). Strategy for Patient-oriented Research: Patient Engagement Framework [Internet]. Canada . Retrieved from http://www.cihr-irsc.gc.ca/e/48413.html
- Schwartz AE, Kramer JM, Cohn ES, McDonald KE. “That felt like real engagement”: Fostering and maintaining inclusive research collaborations with individuals with intellectual disability. Qualitative Health Research. 2020 Jan;30(2):236-49.
- Nind M, Vinha H. Doing research inclusively: bridges to multiple possibilities in inclusive research. British Journal of Learning Disabilities. 2014 Jun;42(2):102-9.
- Embregts PJ, Taminiau EF, Heerkens L, Schippers AP, Van Hove G. Collaboration in inclusive research: competencies considered important for people with and without intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities. 2018 Sep;15(3):193-201.
- Bobbette N, Hamdani Y. Critical considerations for engaging in inclusive health research with individuals with intellectual disability. Evidence-Based Nursing. 2021 Jan 1;24(1):11.
- Hamdani Y, Gibson BE. Challenging assumptions about ‘normal’ development in children’s rehabilitation: the promise of critical qualitative research. Enhancing Healthcare and Rehabilitation: The Impact of Qualitative Research. 2019 Mar 29:209.
- Ng SL, Wright SR, Kuper A. The divergence and convergence of critical reflection and critical reflexivity: implications for health professions education. Academic Medicine. 2019 Aug 1;94(8):1122-8.
- Setchell J, Dalziel B. Using critical reflexivity to enhance clinical care: a clinician perspective. Journal of Humanities and Rehabilitation. 2019;1–12.