From research participant to co-researcher: Chloe's story on co-designing inclusive technologies with people with intellectual disability

Presidential Address, 2022-Dismantling Systemic Barriers: Re-Envisioning Equity and Inclusion.

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The extent to which inclusion is of academic benefit to ECD learners with intellectual and learning disabilities is a topical subject for discussion among educators. The participatory action research study was conducted to find out the extent to which the inclusive education practices at an ECD Centre in Harare were of academic benefit for learners with intellectual and learning disabilities. Data were generated from seven learners with intellectual and learning disabilities, teachers and parents of the learners, university lecturers and from the school administrator. Our action research cycles included teaching in the respective learner’s classes, as well as observations made on the playground. For triangulation we combined data generated from our interviews with key participants, participant and non-participant observations, and from document analyses. The NVivo data management system was used to code data into emergent themes. We concluded that although the school was open to inclusion, the teachers were not well trained for it, and that the learners could have benefited from a more diverse curriculum to compensate for their academic challenges. Our recommendations following the research were that both the parent government ministry, and the school administration could do more for the teachers in terms of training in inclusive education practices. We also recommended that for future research opportunities, the study could be extended to include an investigation into inclusive education practices as they relate to learners with intellectual disabilities as they transition from primary school to secondary school.

Ensuring that research participants accurately reflect patient populations is critical for the equitable distribution of the benefits and burdens of studies; however, many groups experiencing health disparities remain underrepresented in research. This study interviewed research team members (n = 25) interested in inclusive recruitment to understand their perspectives on engaging adults with intellectual and developmental disabilities in general population research. Team-based thematic analysis revealed barriers to the inclusion of adults with intellectual and developmental disabilities including 1) use of direct and indirect exclusionary practices, 2) lack of knowledge and skills, 3) reliance on ad hoc accommodations, 4) perceptions that including adults with intellectual disabilities in research lacks scientific value, and 5) beliefs that people with intellectual and developmental disabilities are not able or willing to participate. However, while team members acknowledged a lack of knowledge and skills to include people with intellectual and developmental disabilities, there was a strong interest in learning.

Little is known about the factors that shape the employment-related decisions of individuals with intellectual and/or developmental disabilities. Findings from qualitative interviews with individuals, their family members, and employment-support professionals from four community rehabilitation providers throughout Massachusetts were reported. Recognizing the value of participatory action research, we also included a co-researcher with intellectual disability who participated in all facets of the research process. Findings revealed a collection of people and factors considered influential in employment-related decision-making. The family in the formative years, school-based staff and early employment experiences, the culture of the community rehabilitation providers, the job developer, and personal preferences all influenced participants' decisions. Through understanding these persuasive elements, we offer recommendations to those in the intellectual and developmental disabilities field to optimize employment choices and outcomes.

Xenotransplant research offers hope to individuals waiting for vital organ transplants. Nascent first-inhuman xenotransplantation research trials present unique ethical challenges which may translate into obligations for researchers and special considerations for institutional review boards (IRBs). Contextual vulnerability is an important consideration in reviewing proposed subject selection methods. Some recipients are uniquely prone to receiving an unfair offer to enroll in an experimental clinical trial when excluded from allograft waitlists due to psychosocial or compliance evaluations. These exclusions represent an allocational injustice. Enrolling research subjects subjectively excluded from allotransplantation into xenotransplant research is not a mechanism of fair access but rather an exploitation of an unjustly optionconstrained vulnerable group by the clinical transplant system. Carefully considering contextual vulnerability can help researchers and IRBs clarify eligibility criteria for xenograft clinical trials. A requirement for simultaneous allograft co-listing can safeguard the interests of vulnerable potential subjects.

People with intellectual disabilities are often excluded from participation in research, whilst research has the potential to enhance positive change in their lives. In the current study, using a guided photovoice procedure, the experiences of people with intellectual disabilities regarding participation in research are evaluated. A total of 14 participants with intellectual disabilities were interviewed using guided photovoice. Through thematical analyses the experiences of people with intellectual disabilities regarding photovoice are discussed. Benefits were taking time, visual cues and the opportunity to speak out. Challenges were abstract concepts and aftercare. Guided photovoice helps to better understand the perspective of people with intellectual disabilities and thus can help to improve their quality of life. People with intellectual disabilities were interested in taking part in the current research project and experienced participating as a positive experience. However careful planning and expertise in communication with people with intellectual disabilities is necessary to include people with intellectual disabilities in research.

People with intellectual disabilities have few opportunities to actively participate in research affecting programs and policies. Employment of participatory action research has been recommended. Although use of this approach with people who have intellectual disabilities is growing, articles on specific participatory research methods are rare. Photovoice is a participatory method often used with underrepresented groups and is effective for engaging people with intellectual disabilities in research or program development. A literature review is presented for use with this population as is a description of Photovoice as a participatory research tool for engaging people with intellectual disabilities. An example of a participatory study among people with intellectual disabilities is provided. Benefits and challenges of employing Photovoice with this population are discussed.

Generally, studies have revealed that only a minority of people are bothered by participation in research on traumatic stress. Severity of traumatic events and subsequent responses are typically unrelated to negative reactions. We included 386 family members and caregivers (respondents) of people with intellectual and developmental disabilities (focus people). Focus people (ages 4-82) had a wide range of physical and intellectual disabilities, medical and behavioral problems, and exposure to potentially traumatic events. The measures of impact of research participation (based on J. I. Ruzek & D. F. Zatzick's [2000] Reactions to Research Participation Questionnaire [RRPQ]; S. Folkman and R. S. Lazarus's [1986 , 1988 ] Emotional Responses to Participation Scale) showed good psychometric properties. Response to participation was highly skewed toward good understanding of informed consent, valuing participation, and minimal negative reactions. Number of traumatic events was related, positively, to only one RRPQ subscale: Valuing Participation. Implications for research and clinical work are discussed.

Despite the common expectation that social research should strive to include people with relevant expertise by experience, people with intellectual disabilities who are non-speaking are rarely included as participants. Social research seeking to understand self-harm has sought the direct experiences of people who self-harm for decades; this has contributed significantly to understanding the connection between emotional distress and self-harm. However, very few studies have asked people with intellectual disabilities about their own self-harm, and none have sought the views of individuals who are non-speaking. In 2020-22, an ethnographic research study was conducted which inquired about the emotional experiences of young people with intellectual disabilities who self-injured. Three teenagers with intellectual disabilities, all of whom were non-speaking, were recruited as the primary participants. This paper presents the range of methodologies and theoretical lenses that were adopted to facilitate three young people with no spoken communication to be the primary participants in a research study inquiring about their emotional experiences. Ethnography, which has historically been utilised as a method for including non-speaking participants in research, was the overarching methodology. The application of psychoanalytic principles and physiology concepts which were incorporated for capturing data about the participants’ emotional experiences are discussed, alongside the evidence-based assumptions that were adopted as principles guiding interaction and interpretation of the data. The paper concludes with some brief learnings and reflections on the research journey. Through this adapted methodology, the participants were able to contribute significant insights into the research inquiry, resulting in a dataset which reflected the rich, nuanced and overlaid emotional experiences, including significant emotional overwhelm and distress which could be understood as a factor for their self-injury. It is hoped that the explication of this approach prompts further consideration as to how non-speaking participants might be included in future social research.

BackgroundAdvances in health equity rely on representation of diverse groups in population health research samples. Despite progress in the diversification of research samples, continued expansion to include systematically excluded groups is needed to address health inequities. One such group that is infrequently represented in population health research are adults with intellectual disability. Individuals with intellectual disability experience pervasive health disparities. Representation in population health research is crucial to determine the root causes of inequity, understand the health of diverse populations, and address health disparities. The purpose of this paper was to develop recommendations for researchers to increase the accessibility of university health research and to support the inclusion of adults with intellectual disability as participants in health research.MethodsA comprehensive literature review, consultation with the university ethics review board, and review of United States federal regulations was completed to identify barriers to research participation for individuals with intellectual disability. A collaborative stakeholder working group developed recommendations and products to increase the accessibility of university research for participants with intellectual disability.ResultsEleven key barriers to research participation were identified including gaps in researchers’ knowledge, lack of trust, accessibility and communication challenges, and systematic exclusion among others. Together the stakeholder working group compiled seven general recommendations for university health researchers to guide inclusion efforts. Recommendations included: 1) address the knowledge gap, 2) build community partnerships, 3) use plain language, 4) simplify consent and assent processes, 5) establish research capacity to consent, 6) offer universal supports and accommodations, and 7) practice accessible dissemination. In addition, four products were created as part of the stakeholder working group to be shared with researchers to support the inclusion of participants with intellectual disability. 1) Supports I Need Checklist, 2) Plain language glossary of health and research terms, 3) Understanding Consent and Assent in Plain Language, 4) Easy-Read Paper Template.ConclusionCommunity members and individuals with intellectual disability want to be included in research and are eager to engage as research participants. It is the responsibility of the researcher to open the door to university health research. The recommendations discussed in this paper could increase accessibility for a broader range of research participants and, in particular, promote the inclusion of individuals with intellectual disability to advance health equity in population health research.

Individuals with intellectual disability are often left out of and overlooked in discussions on sexual health and sexuality. Given this, we undertook a participatory theatre research project to better respond to the needs of the individuals with intellectual and developmental disability regarding their sexual agency and sexual citizenship. The project, entitled Romance, Relationships, and Rights arose when the executive director of a community living agency approached researchers at the University of British Columbia’s Canadian Institute for Inclusion and Citizenship to learn about how they, as an agency, could better support their community. To disrupt sexual ableism and traditional theatre hierarchies, we collaboratively turned to participatory and disability theatre with the aim to advance and promote the sexual citizenship of individuals with intellectual and developmental disability, who refer to themselves as self-advocates - those who speak and act with agency. The challenges of equitable co-creation arose throughout the theatre process; the themes of deconstruction/co-construction and uncertainty and liminality reveal the iterative process of centering self-advocate voices.

The research presented in the article aims to justify the application of the method of music therapy in the long-term perspective of the social worker’s professionalization for people with intellectual disabilities. The object of the research is the impact of music therapy on persons with intellectual disabilities as a stigma research & intervention strategy in the context of the professionalization of social work. The aim of the article is to reveal the impact of music therapy on persons with intellectual disabilities in the context of the professionalization of social work. The object of the research was delved into from various angles in order to answer the research questions: How useful is music therapy for people with intellectual disabilities in the context of social work striving to overcome stigma and choosing music therapy as a strategy? How useful is the authorial research methodology developed by the researchers for the application of music therapy for the quality of life of people with intellectual disabilities in the context of social assistance and in overcoming systems barriers? To what extent are the research participants able to express their feelings and evaluate the process of music therapy, to influence the social worker’s activities related to music therapy? To what extent and how does such activity expand the boundaries of the social worker’s profession and in what direction does it change professional standards? Data analysis proves that music therapy helps people with intellectual disabilities and society to overcome stigma. Referring to the research findings it can be stated that the authorial methodology for the application of music therapy created by the researchers in order to achieve the quality of life of people with intellectual disabilities in the context of social assistance is effective and can be implemented in practice to overcome the systems barriers.

Purpose: This two-phase qualitative study aimed to contribute to understandings of the impact of the environment on participation in the everyday activities of people aging with intellectual disability and dementia. It also sought to explore ways for older adults with intellectual disability to participate in research. Background: Despite the increasing number of adults aging with intellectual disability and dementia, there is limited research that examines this group's perceptions and experiences around aging with multiple disabilities, specifically considering participation across various environments and within current systems. Methods: Four women with intellectual disability and dementia who lived in a non-familial residential settings participated in small groups utilizing a nominal group technique and twelve caregivers participated in traditional focus groups to identify important environmental barriers and supports to participation in meaningful everyday activities. Results from the first phase guided a subsequent phase of participant observations and interviews with three of the original participants with ID and dementia across various home, work, and community environments. Results: Important influences on participation for people intellectual disability and dementia occurred across micro- and macro- environmental contexts, with importance noted for interpersonal interactions and boarder organizational environments. Tensions around participation existed as people with intellectual disability and dementia exercised their agency in various contexts and sought to maintain peer support, while formal care networks focused on safety and supervision. Participants with intellectual disability and dementia expressed positive experiences participating in research and were able to contribute meaningful data with accommodations and supports. Discussion: People with ID and dementia's participation in research is important given the different perspectives offered when compared to those of caregivers. Results from this exploratory research can help inform organizations and other stakeholders invested in providing meaningful supports and services for adults aging with ID and their families.

Historically, people with intellectual disability have been exploited in and excluded from scientific research. To facilitate greater representation of adults with intellectual disability as research respondents, we sought to understand their interest in research participation and factors affecting their willingness to volunteer to participate, such as the core value of trust. Our survey measured attitudes of adults with intellectual disability towards research in general and research specifically involving adults with intellectual disability as respondents, as well as their prior research experiences, trust of researchers and interest in future research participation. Participants reported positive attitudes towards research and strong interest in future participation opportunities, and trust of researchers was positively correlated to both. The belief that 'research about adults with intellectual disability is very important' also predicted participants' interest in future research participation. Our findings indicate that adults with intellectual disability support the direct involvement of adults with intellectual disability in research as respondents. Trustworthy rapport with researchers and positive views about research foster greater inclusion of this population.