RESUMEN

BACKGROUND: People with developmental disabilities make important contributions to research. However, inaccessible research ethics trainings present a barrier to them taking on some research roles. OBJECTIVES: We developed a social-behavioral research ethics training that leads to certification tailored to the accessibility needs and roles of community research partners with developmental disabilities. METHODS: We collaborated with diverse partners (people with developmental disabilities, a disability service provider, health researchers, human research participant protections experts) to develop the research ethics training. To identify potential training content, we conducted a rapid scoping review of ethical, legal, and social issues in social-behavioral research with adults with developmental disabilities and reviewed national research ethics curricula. Through discussions and a modified Delphi process, we worked with partners to identify content to teach; partners also provided guidance on accessibility. RESULTS: The training and rapid scoping reviews and input from partners resulted in 93 potential educational content elements to include. After completing the modified Delphi process, partners recommended inclusion of 83 of these content elements in the educational training and provided input on depth and approach to teaching this content. Research Ethics for All is a freely available training that includes 5 units, delivered via didactic and active learning, and assessment activities to verify understanding. Research Ethics for All should be facilitated by an experienced researcher. CONCLUSIONS: Research Ethics for All includes foundational social-behavioral research ethics content designed to support community research partners with developmental disabilities to take on new research responsibilities.

RESUMEN

BACKGROUND: A collaborative approach is critical in inclusive research and should incorporate taking time to build relationships with co-researchers based on trust and shared understanding. Involvement can often be seen as tokenistic and in order to avoid this, it is important to provide opportunities for people to exercise choice throughout the research process. MAIN BODY: The current paper outlines learnings from a co-researcher training process for young people with disabilities to identify the ways in which meaningful choice can be facilitated with this group. While conducting training of co-researchers in topics such as research methods, we were continuously led by the group with regards to the directions that the sessions took and promoted problem solving with the group to accommodate the unique needs of all members. The overall aim of a wider project was to develop research capacity in a group of young people with disabilities through co-researcher training and this paper will report on learnings from this work with regards to how we sought to provide opportunities for the co-researchers to exercise choice within research projects. Feedback from the group of young people highlighted the variety of needs and expectations that must be accommodated in such a process and therefore, allowing them to dictate the extent and manner of their engagement is key. Young people with disabilities are a heterogeneous group and therefore, some methodologies and ways of working required adaptation in order to facilitate meaningful choice and engagement for all. CONCLUSION: Providing meaningful opportunities for demonstrating their choices, in relation to elements of research projects, is a critical component of facilitating a rights-based approach when conducting co-research and requires researchers to cede some level of control over the research process to co-researchers. This can be difficult to achieve in practice and researchers must continuously reflect on their own practice and be willing to change and adapt throughout the process.

It is very important that all members of society can be part of research teams so that researchers can develop projects that will provide good outcomes, however, not all people with disabilities have opportunities to take part in research projects. This project supported a group of young people with disabilities to develop research skills through a set of workshops and this paper describes what the researchers learned from these workshops. This paper will help researchers to understand how best to capture the voices of this population for future research. Young people with disabilities are all different and must be supported to give their opinion in the way that suits them best. Researchers must always think about the ways that they work and change how they work if it is not good for supporting young people with disabilities to work with them on research projects.

RESUMEN

BACKGROUND: Culinary nutrition education can support improved diet-related health and wellbeing. This pre-post pilot study aimed to assess feasibility and acceptability of an eight-session culinary nutrition programme, the Food and Lifestyle Information Programme (FLIP), for adults with mild-to-moderate intellectual disability. A secondary aim was to evaluate preliminary programme effectiveness. METHOD: Participants were recruited through a disability service provider. Feasibility measures were: recruitment and retention; implementation; engagement and participation; adverse outcomes; and feasibility of outcome measures. Acceptability was assessed using an interactive process evaluation. Effectiveness measures included cooking frequency, cooking and food skill confidence and diet quality. RESULTS: Six of eight participants completed the intervention with high attendance and programme engagement. FLIP was well received by participants and support workers. No adverse outcomes occurred. Diet quality was feasible to assess. CONCLUSIONS: Findings can inform content, delivery and evaluation of future culinary nutrition programmes for adults with mild-to-moderate intellectual disability.

Asunto(s)

RESUMEN

A self-study of International Journal of Exercise Science (IJES) publications from 2008 through 2021 revealed a sex-data gap in participant and corresponding author representation. This finding prompted the creation of the IJES Working Group for Opportunity, Representation, and Diverse Perspectives. We are a collaborative team of authors, reviewers, and editors, spanning both rural and urban teaching- and research-focused institutions, who assembled regularly starting in September 2023. The goal was to contemplate potential challenges and opportunities around diversity, equity, and inclusion (DEI), elicit discourse, and broaden inclusion and representation in exercise science research. Our group identified six main challenges/opportunities: 1) Mixed Definitions and Applications of DEI Principles; 2) Competing Lifeviews and Worldviews; 3) Oversight and Enforcement of DEI Principles in IJES; 4) Oversight and Enforcement of DEI Principles in the Broader Field; 5) IJES is a Home for Developing Scholars; and 6) Lag Time for Creating Change in IJES. As a growing international journal, we depend on a diverse group of authors, reviewers, editors, and readers to achieve our mission. Accordingly, the Working Group encourages impactful, inclusive research that broadens representation within exercise science.

RESUMEN

This article highlights reflections by the author on the importance of considering what we say, do and acknowledge in intellectual and developmental disability research. The goal is to advance thinking that can lead to personal and collective change in our approaches to truly share power and elevate the expertise of people with lived experience with intellectual and developmental disabilities in the movement for equity, inclusion, and disability justice. Implications for inclusive research, policy, and practice are discussed as is the need to engage in personal reflection and build new partnerships for collective change.

Asunto(s)

RESUMEN

Inclusive research combines the expertise of academically trained researchers with the lived experience of individuals with disabilities to render results that are more accessible, accountable, and meaningful to the disability community. In this case study, adults with intellectual and developmental disabilities (IDD) contributed as co-researchers to a series of studies on mental health of adults with intellectual disability. The research model, specific engagement strategies, and lessons learned are shared. Feedback from members of the research team suggests that including adults with IDD as co-researchers benefited investigators, co-researchers with IDD, and project outcomes. Our case study emphasizes the valuable contributions of research partners with IDD and provides a model that may be adapted and utilized by researchers to enhance their practice.

Asunto(s)

RESUMEN

BACKGROUND: People with intellectual disabilities are rarely involved in research on quality of life. The study sought to answer the question: what do people with intellectual disabilities believe improves or hinders their quality of life? METHOD: Using an inclusive, accessible research design, 18 participants met in small groups to answer the study's question using their choice of arts-based media. Participants completed the analysis collaboratively, identifying key themes among their responses. RESULTS: The participants concluded that supports, well-being, hobbies, and activities contribute to quality of life. Lack of accessibility, assumptions, negative behaviours, stress, and negative people (staff, roommates, people in general) were identified as detractors of quality of life. CONCLUSIONS: To continue to make progress in improving the quality of life of individuals with intellectual disabilities, the voice of those with intellectual disabilities is key. The results suggest key areas of focus to make these improvements.

Asunto(s)

RESUMEN

BACKGROUND: People with intellectual disability have diverse needs and experience higher rates of diet-related chronic disease such as type 2 diabetes compared to people without disability. However, they are infrequently included in development and implementation of interventions to address diet-related chronic disease. The present study describes the process to plan, develop and refine the Food and Lifestyle Information Program (FLIP) culinary nutrition intervention for adults with mild-to-moderate intellectual disability. METHODS: The project was initiated by a disability service provider and was guided by the Cook-Ed™ model and inclusive research principles. Initially the disability service provider and academic research team members co-designed pre-program consultation and pilot studies, and draft program resources. Pre-program consultation explored paid disability support worker (n = 10) perceptions of cooking and food skills, nutrition priorities and optimal program format, which guided further program drafting. Program resources and pilot study design were further developed and refined with co-researchers with lived experience of intellectual disability who attended a pre-pilot and then pilot study sessions as remunerated co-facilitators. RESULTS: Key characteristics of the FLIP intervention arising from pre-program consultation included providing cooking task instruction in small steps, enabling participant choice in program activities, promoting an inclusive and social atmosphere, and providing paper-based resources. CONCLUSIONS: FLIP intervention co-design was enabled through ongoing input from the disability service provider and people with lived experience of intellectual disability. Evaluation of FLIP feasibility, acceptability and preliminary effectiveness to improve diet-related health is underway.

Asunto(s)

RESUMEN

PURPOSE: To understand aspects important to adults with severe cerebral palsy (CP) as they prepare to move from assisted to independent living and to create an appropriate intervention. MATERIALS AND METHODS: An inclusive qualitative study was conducted together with adults with severe CP (Gross Motor Function Classification Scale 4-5) preparing to move to independent living. It included semi-structured interviews which were recorded, transcribed, and analyzed by two occupational therapists to create themes. The themes were reviewed and adjusted by the partners in a group context. RESULTS: Seven partners aged 23-47 years (median= 35 years, standard deviation = 10; 4 female) participated. Four themes arose with sub-themes: (1) house management (finances, meals, maintenance, and housework), (2) interactions and boundaries (with a caregiver, family, friends, and romantic partners), (3) schedules (work, leisure, volunteering, education, and health management), and (4) "my way" (autonomy, independence, and self-advocacy; emotions and group power). These themes expressed the concerns of the partners and formed the basis of a group intervention before their move from assisted to independent living. CONCLUSIONS: The inclusive research revealed themes the partners raised that expressed their concerns; these became the basis for a group intervention to prepare for their move from assisted to independent living.

People with severe cerebral palsy raise many concerns regarding living independently.The theme most often discussed illuminated the desire for control over the process.Inclusive research allows participants to co-create a tailor-built intervention.

RESUMEN

INTRODUCTION: There is a growing consensus that children and young people (CYP) should be involved in matters that concern them. Progress is made in involving CYP in developing pediatric research agendas (PRAs), although the impact of their involvement remains unknown. We aimed to evaluate the impact of involving CYP in developing PRAs and assess the extent to which postpatient and public involvement (post-PPI) activities were planned. METHODS: We conducted a qualitative study using in-depth interviews to identify and gain an in-depth understanding of the impact of involving CYP in developing PRAs. The transcripts were uploaded to Atlas.ti to be coded and organised. Dutch-language interviews were analysed and interpreted together with vocational education and training (VET) students. These students were aged between 14 and 18 years and were training to become nurses. RESULTS: Three CYP and 15 researchers decided to participate. We focused on three categories of impact: agenda-setting impact, individual impact and academic impact. Involving CYP creates a more enriched and clarified agenda. It ensured that both CYP and researchers underwent personal or professional growth and development, it created a connection between the people involved, awareness about the importance of involving CYP and it ensured that the people involved had a positive experience. The participants were unable to indicate the academic impact of their PRAs, but they did understand the key factors for creating it. In addition, the need to measure impact was highlighted, with a particular focus on assessing individual impact. DISCUSSION: Our study outlines the diverse subthemes of impact that arise from involving CYP in developing PRAs. Despite the potential of research agendas to amplify CYP voices, only a minority of researchers strategized post-PPI activities ensuring impactful outcomes, prompting the need for thorough evaluation of various impact forms and consistent alignment with the overarching goal of transforming the research field. PATIENT OR PUBLIC CONTRIBUTION: We involved VET students in the data analysis and interpretation phase by forming a young person advisory group. The data analysis of the interviews analysed by the VET students revealed four distinct themes: 1. Learnt new knowledge. 2. Learnt to collaborate. 3. Learnt to listen. 4. Assessment of the individual impact.

Asunto(s)

RESUMEN

In this paper, we developed an experimental checklist for laboratory experiments including neurodiverse participants, particularly those with attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and dyslexia. The checklist suggests additions to the basic requirements for ethical laboratory-based studies with human participants. The suggestions emphasize physical comfort, the agency of participants concerning environmental adjustments, clarity of communication, and a focus on participants' overall well-being. Those methodological guidelines aim to help researchers in facilitating inclusive and accessible laboratory environments for neurodiverse participants in order to: •Enhance research validity by minimizing the influence of factors that affect responses in neuroscience experiments.•Facilitate research recruitment by encouraging continued participation in future studies and increasing word-of-mouth.•Improve research dissemination by fostering a more positive perception of the research process amongst neurodiverse individuals and encouraging community involvement.

RESUMEN

Spinal cord injury (SCI) research and policy decisions are rarely made in partnership with people with SCI, making them less relevant, applicable, and used by those whom the decisions are intended to support. Across disciplines, consensus methods have been promoted as a viable solution for supporting shared research and policy-based decision-making. In this paper, we describe a partnered approach between academic researchers and the Ontario SCI Alliance, a non-profit, SCI community mobilization network to co-develop and co-disseminate a community-based consensus exercise. The community-based consensus exercise included two modified Delphi surveys and one in-person retreat. The partnership's goal with this exercise was to facilitate shared decision-making for the development of their upcoming strategic plan. We then interviewed partners and participants from the Delphi and in-person retreat to discuss successes, challenges, and lessons learned from the exercise. Survey 1 was disseminated to over 2,500 members of the Ontario SCI community and received 374 responses (276 coming from people with SCI). Survey 2 had 118 responses, with 87 coming from people with SCI. The retreat had 73 attendees, including people with SCI, family/friends of people with SCI, clinicians, researchers, and SCI community and research organization staff/volunteers. The retreat included a presentation of the survey results, a clinician/researcher panel, and externally-facilitated working groups. All survey responses and retreat materials were synthesized. Using the synthesized feedback, the Ontario SCI Alliance was able to implement several changes for the Ontario SCI community, including higher-quality primary care experiences (reduced wait times, more accessible examining rooms), the development of a wound care strategy with the Ontario government, and an advocacy campaign for public coverage for catheters and urinary care supplies. From the five interviews conducted, five themes were co-constructed regarding the successes, challenges, and lessons learned from the exercise: (1) Inclusion, Diversity, Equity, and Accessibility; (2) Partnership; (3) Design Considerations; (4) Transparency and Clarity in Communication; and (5) Sustainability. Findings from this community case study demonstrate the feasibility of conducting a community-level consensus exercise among an equity-deserving group while providing detailed guidance for how to ensure future research and policy-based decision-making is shared across diverse knowledge users.

RESUMEN

BACKGROUND: To build capacity among people with intellectual and developmental disabilities to become co-researchers they need the opportunity to learn about research. METHOD: An inclusive research team developed an online training to support people with intellectual and developmental disabilities to serve as co-researchers. Seven participants were recruited as pilot trainees. The co-researcher training consisted of two 1-h training sessions. Pre- and post-surveys and a focus group were conducted to examine participant experiences with the co-researcher training. RESULTS: The participants were actively engaged during the co-researcher training sessions and shared they had a positive experience with it. They expressed that people with intellectual and developmental disabilities add value to the research team because of their lived experiences. CONCLUSION: The co-researcher training can instill a baseline level of knowledge about research in people with intellectual and developmental disabilities, and can be adjusted for different types of research in different settings and organisations. LAY SUMMARY: People with intellectual and developmental disabilities would like to learn more about research. They would also like to learn more about how to do research. People with intellectual and developmental disabilities who work on research are called co-researchers. Two researchers and a co-researcher with disability wrote together about research for people with intellectual and developmental disabilities. Seven people with intellectual and developmental disabilities took part in the class. They answered questions about how they liked the class. They also gave their opinion about research. They learned about what research is and how to do research. The class can be changed so that it can be used by other organizations.

Asunto(s)

RESUMEN

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.

RESUMEN

PURPOSE: This scoping literature review aimed to determine the definition of dignity in relation to disability. It also examined the extent to which inclusive research methods have been used to develop working definitions. MATERIALS AND METHODS: A comprehensive search was conducted in five electronic databases, using a modified framework by Arksey and O'Malley. Narrative synthesis and qualitative content analysis were employed to examine definitions of dignity and the use of inclusive research methods. RESULTS: 22 peer-reviewed studies were included. The majority of the studies were qualitative (72.72%) and examined various disability populations in diverse settings. Although 19 studies offered a definition of dignity, there was no clear consensus. Dignity was frequently defined from a utilitarian perspective, emphasising affordances and barriers. However, engagement with theoretical constructs was superficial and limited. Further, no studies mentioned the use of inclusive research methods. CONCLUSIONS: The absence of inclusive research methods hinders the development of a comprehensive definition of dignity that is accepted by and relevant to people with disability. Engaging with both theoretical and empirical perspectives of dignity is crucial to develop a meaningful and inclusive definition, which can inform interventions and policies that enhance dignity for people with disability across diverse settings and contexts.

The adoption of inclusive research methods in disability research should be a priority for rehabilitation researchers and clinicians to better shape research agendas, study design, and outcomes.The absence of inclusive research methods hinders the development of a comprehensive definition of dignity that is accepted by and relevant to people with disabilityThe findings emphasise the need to address dignity concerns within healthcare settings for people with disability.Rehabilitation practitioners can advocate for person-centered approaches, improved communication and increased accessibility to create dignified healthcare environments.Rehabilitation researchers and practitioners can play a pivotal role in advocating for social justice and equity by supporting policies and interventions that foster inclusive practices, dignity, and equitable opportunities for people with disability.

RESUMEN

The widespread and persistent underrepresentation of groups experiencing health disparities in research involving biospecimens is a barrier to scientific knowledge and advances in health equity. To ensure that all groups have the opportunity to participate in research and feel welcome and safe doing so, we must understand how research studies may be shaped to promote inclusion. In this study, we explored the decision to participate in hypothetical research scenarios among African American adults (n = 169) that varied on the basis of four attributes (form of consent, reason for research, institutional affiliation and race of the researcher). Findings indicate that participants were largely willing to contribute to biobanks but significantly preferred opportunities where they had control over the use of their biological samples through tiered or study-specific forms of consent. Broad consent procedures, although common and perhaps preferred by participants with high trust in researchers, may amount to an exclusionary practice.

Asunto(s)

RESUMEN

BACKGROUND: In disability studies belonging is emerging as a promising area of study. Inclusive research, based as it is on lived experience perspectives, is likely to provide salient insights into belonging in the lives of people with intellectual disabilities. METHOD: A systematic review utilising four databases and five leading journals in the field of intellectual disabilities was used. Content analysis and a deductive synthesis of the extracted data was undertaken. RESULTS: A high level of confluence was found between the findings of the included studies and key themes of belonging identified in the wider literature. Beyond this, studies utilising inclusive research approaches have contributed novel findings about belonging in the lives of people with intellectual disabilities. CONCLUSIONS: Inclusive research approaches to belonging may provide innovative and responsive frameworks to support people to develop a sense of being connected and "at home" in themselves and in their communities.

Asunto(s)

RESUMEN

BACKGROUND: Historically the voices of people with intellectual disability have been occluded by barriers imposed by research practice. More recently, adaptive research approaches have been proposed to enhance the inclusion of people with intellectual disability in qualitative research. METHOD: This article presents an adaptive interviewing approach employed with five people ageing with intellectual disabilities in rural South Australia. The interviews were conducted within a broader participatory action research project in which tools and resources were co-designed for post-parental care planning. RESULTS: We describe our adaptive interviewing approach incorporating multiple methods: (i) responsive communication techniques; (ii) the inclusion and support of family carers; (iii) visual tools; (iv) walking interviews. CONCLUSION: Findings contribute knowledge about how an adaptive interview approach supports the participation of people with an intellectual disability in qualitative research.

Asunto(s)

RESUMEN

BACKGROUND: The Advancing Inclusive Research (AIR) Site Alliance is composed of clinical research centers that partner with Genentech, a biotechnology company, to advance the representation of diverse patient populations in its oncology and ophthalmology clinical trials, test recruitment, and retention approaches and establish best practices to leverage across the industry to achieve health equity. METHODS: Through a data-driven selection process, Genentech identified 6 oncology and 3 ophthalmology partners that focus on reaching historically underrepresented patients in clinical trials and worked collaboratively to share knowledge and explore original ways of increasing clinical study access for every patient, including sites co-creation of a Protocol Entry Criteria Guideline with inclusion principles. RESULTS: For patients, three publicly available educational videos about clinical trials were created in multiple languages. The AIR Site Alliance has also defined invoiceable services for sites to enhance patient support; this has been built into the new study budget templates for sustainability. For healthcare professionals (HCPs), the first-of-its-kind AIR Educational Program was developed to focus on identifying and addressing bias and engaging historically underrepresented patient populations in trials. The sites also co-created videos for HCPs and patients on why advancing inclusive research matters. Over 16 regional health equity symposia have been delivered for patients, HCPs, and community leaders. CONCLUSIONS: This AIR Site Alliance is a model for other site alliances, including Kenya, South Africa, the United Kingdom, and Canada. Such alliances will build a robust and sustainable research ecosystem that includes diverse patient groups and encourages change across the healthcare system.

Asunto(s)

RESUMEN

PURPOSE: There are several ways to include "disability" in research studies, which can be confusing or overwhelming for researchers, community members, and students. The aim of this paper is to share conceptualizations of disability and how to ask about "disability" in research studies. The paper provides a general introduction and brief analysis of the methodological approaches which can be used. METHODS: We used reviews of the literature and extensive discussions to identify key articles, books, websites, and reports that provide guidance and examples of asking about disability in research. RESULTS: Four primary approaches to asking study participants about disability were identified. For each of these, we provide background information, key points about the ways to use the approach including tools that have been developed, and example studies. A comparison table provides a high-level overview of similarities and differences in approaches. Other approaches and tools were also identified and are briefly described. CONCLUSION: Researchers involved in disability and rehabilitation research should be aware that there is not one best or singular way to ask about disability when conducting research. The approach or approaches chosen for a particular study need to match the purpose of the study. It is important that researchers take time to carefully consider their options and choose the best fit for their study.

There are several different ways to ask about disability and functioning when conducting research that aims to include a disability component or focus.Researchers need to carefully select the best option(s) for their study.Whenever possible, researchers should use more than one approach and should allow for more than one type of disability or impairment to be selected.Researchers often require training to understand how to include disability in research.Allow adequate time and resources for training research team members so that the tools are implemented correctly.