Explore the vast range of titles available.

‘Codesign’ and associated terms such as ‘coproduction’ or ‘patient engagement’, are increasingly common in the health research literature, due to an increased emphasis on the importance of ensuring that research related to service/systems development is meaningful to end-users.  However, there continues to be a lack of clarity regarding the key principles and practices of codesign, and wide variation in the extent to which service users are meaningfully engaged in the process. These issues are particularly acute when end-users include populations who have significant health and healthcare disparities that are linked to a range of intersecting vulnerabilities (eg, poverty, language barriers, age, disability, minority status, stigmatised conditions).  The purpose of this paper is to prompt critical reflection on the nature of codesign research with vulnerable populations, including key issues to consider in the initial planning phases, the implementation process, and final outputs.  Risks and tensions will be identified in each phase of the process, followed by a tool to foster reflexivity in codesign processes to address these issues.

[...]the uptake of codesign has contributed to what has been called a ‘Participatory Zeitgeist’, whereby codesign and coproduction have become the spirit of our contemporary times. 1 Despite growing attention and uptake of codesign approaches and the potential for positive impact, there continue to be significant gaps and inconsistencies in evaluation. Health Expectations has published much of this study, including a recent systematic review of evaluation in patient and public engagement in research and health system decision-making. 2 While the review found a growing number of published evaluation tools, it also found that many of these tools lacked an explicit conceptual framework that is needed to link empirical evaluation with a theoretical foundation. A DE approach is appropriate in circumstances where project/program team members, especially decision makers, are open to reflexive practice and critical thinking and are committed to actively engaging in an iterative evaluation process. 3 Unlike traditional approaches, DE positions evaluation as an internal team function within the context of the project/program and is integrated into the process of gathering and interpreting data, framing, and surfacing issues and testing model developments. Unlike traditional evaluation approaches that require specific and measurable goals to be achieved by a step-by-step process, our Hub follows a set of core principles that emphasize authentic engagement of diverse stakeholders, taking time to listen for understanding and moving forward when participants and communities are ready for system change. 1 DE provided a process for periodic reflection on these principles to gauge progress, harvest important lessons and systematically examine what was working and what was not.

BackgroundCo-creation approaches, such as co-design and co-production, aspire to power-sharing and collaboration between service providers and service users, recognising the specific insights each group can provide to improve health and other public services. However, an intentional focus on equity-based approaches grounded in lived experience and epistemic justice is required considering entrenched structural inequities between service-users and service-providers in public and institutional spaces where co-creation happens.ObjectivesThis paper presents a Charter of tenets and principles to foster a new era of ‘Equity-based Co-Creation’ (EqCC).MethodsThe Charter is based on themes heard during an International Forum held in August 2022 in Ontario, Canada, where 48 lived experience experts and researchers were purposively invited to deliberate challenges and opportunities in advancing equity in the co-creation field.ResultsThe Charter’s seven tenets—honouring worldviews, acknowledging ongoing and historical harms, operationalising inclusivity, establishing safer and brave spaces, valuing lived experiences, ‘being with’ and fostering trust, and cultivating an EqCC heartset/mindset—aim to promote intentional inclusion of participants with intersecting social positions and differing historic oppressions. This means honouring and foregrounding lived experiences of service users and communities experiencing ongoing structural oppression and socio-political alienation—Black, Indigenous and people of colour; disabled, Mad and Deaf communities, women, 2S/LGBTQIA+ communities, people perceived to be mentally ill and other minoritised groups—to address epistemic injustice in co-creation methodologies and practice, thereby providing opportunities to begin to dismantle intersecting systems of oppression and structural violence.ConclusionsEach Charter tenet speaks to a multilayered, multidimensional process that is foundational to shifting paradigms about redesigning our health and social systems and changing our relational practices. Readers are encouraged to share their reactions to the Charter, their experiences implementing it in their own work, and to participate in a growing international EqCC community of practice.

Background Cocreation has the potential to engage people with lived and living experiences in the design and evaluation of health and social services. However, guidance is needed to better include people from equity‐deserving groups (EDGs), who are more likely to face barriers to participation, experience ongoing or historical harm, and benefit from accessible methods of engagement. Objective The aim of this international forum (CoPro2022) was to advance a collective vision for equity‐based cocreation. Design A participatory process of engagement in experiential colearning and arts‐based creative and reflective dialogue. Visual prototypes were created and synthesised to generate a collective vision for inclusive equity‐based cocreation. Setting and Participants The Forum was held at the Gathering Place by the Grand River in Ohsweken, Ontario, Canada. A total of 48 participants attended the forum. They were purposely invited and have intersecting positionalities (21 academic experts, six experience experts, 10 trainees, and 11 members of EDGs) from nine countries (Bangladesh, Botswana, Canada, England, Italy, Norway, Scotland, Singapore, Sweden). CoPro2022 Activities CoPro2022 was an immersive experience hosted on Indigenous land that encouraged continuous participant reflection on their own worldviews and those of others as participants openly discussed the challenges and opportunities with engaging EDGs in cocreation activities. Visual prototypes and descriptions created in small groups were informed by participants' reflections on the panel presentations at the Forum and their own experiences with equity‐based cocreation. Following the event, the authorship team inductively coded themes from the prototype descriptions and met to discuss the cross‐cutting themes. These informed the design of an illustrated collective vision for Equity Based Co‐Creation (EqCC). Results Six prototypes were cocreated by each small group to illustrate their vision for EqCC. Within these, four cross‐cutting themes were identified: (i) go to where people are, (ii) nurture relationships and creativity, (iii) reflect, replenish and grow, (iv) and promote thriving and transformation. These four themes are captured in the Collective EqCC Vision to guide a new era of inclusive excellence in cocreation activities. Patient or Public Contribution Service users, caregivers, and people with lived experience were involved in leading the design of the CoPro2022 and co‐led the event. This included activities at the event such as presenting, facilitating small and large group discussion, leading art‐based activities, and reflecting with the team on the lessons learned. People with lived experience were involved in the analysis and knowledge sharing from this event. Several members of the research team (students and researchers) also identified as members of EDGs and were invited to draw from their personal and academic knowledge.

Background Including youth with disabilities and their families as partners in childhood disability research is imperative but can be challenging to do in an authentic and meaningful way. Simulation allows individuals to learn in a controlled environment and provides an opportunity to try new approaches. The objectives of the research study were to (1) codesign a suite of simulations and facilitation resources and understand how stakeholders engaged in the codesign process; and (2) describe the principles of authentic and meaningful research engagement as identified by stakeholders. Methods Interdisciplinary stakeholder groups, including youth with disabilities, parents, researchers, and trainees, codesigned simulation training videos by developing shared storylines about challenges with research engagement that were then performed and digitally recorded with standardized patient actors. Two forms of data were collected: (1) observations via field notes and video recordings were analyzed to understand the codesign process; and (2) interviews were analyzed to understand principles of authentic and meaningful engagement. Results Four simulation training videos were developed, and topics included: (1) forming a project team; (2) identifying project objectives and priorities; (3) reviewing results; and (4) navigating concerns about knowledge translation. Thirteen participants participated in the simulation codesign; nine of whom consented to be observed in the codesign process and seven who completed follow up interviews. We identified two themes about authentic and meaningful engagement in research: (1) whether the invitation to engage on a project was authentic and meaningful or was extended to ‘tick a box’; and (2) whether there were authentic and meaningful opportunities to contribute (e.g., valued contributions aligned with people’s lived experience, skills, and interests) or if they only served as a ‘rubber stamp’. Communication and expectations tied the ‘tick box’ and ‘rubber stamp’ themes together and underlie whether engagement was authentic and meaningful. Conclusions For research engagement to be authentic and meaningful, researchers and families need to set clear expectations, build rapport, have tangible supports, use clear communication, and build time and space to work together. Future work will explore the utility of the simulations and whether they improve knowledge and attitudes about authentic and meaningful engagement in research. Plain English summary Researchers, patients, and families who collaborate in childhood disability research can benefit from training on how to engage with each other authentically and meaningfully, i.e., where all parties feel supported and valued. We used a codesign approach to identify aspects of the research process where challenges might arise between researchers, patients, and families and then developed four videos with scenarios that mimic these challenges. Codesign is a collaborative approach in which different perspectives and relationships are prioritized while working to achieve a common aim. First, researchers, youth with disabilities, families, and trainees each identified challenges they had previously experienced in research engagement and used those to create one common scenario as the premise of each video. In follow up interviews, we asked a subset (7 people) of those who took part (13 people) about their experience in the co-design process and about what it means to engage in research where all parties feel supported and valued. Participants said that being invited to partner on research teams needed to be more than just a ‘tick box’ and even when invited onto research teams, they often lacked ways to contribute in a way where they felt valued. Engagement felt like a ‘rubber stamp’ when they were asked to contribute in a narrow way that did not align with the fullness of their lived experience, skills, and interests. Clear communication and mutual expectations were important for engagement to happen in a way that felt supportive and valuable. We suggest that researchers and families need to set clear expectations, build rapport, have tangible supports, use clear communication, and build time and space to work together.

Introduction: Evidence-informed practice (EIP) is a widely accepted approach to providing rehabilitation services, however there are barriers to implementation. Bright Ideas is an innovative program developed by KidsAbility’s Rocket Discovery Centre, aiming enhance uptake of EIP through incubating ideas identified by KidsAbility staff linked to organizational priorities of enhancing service access and outcomes. Objectives: To evaluate Bright Ideas by identifying perceived successes and challenges associated with the program with the aim of supporting clinical innovation and the adoption of evidence-informed practices in children’s rehabilitation centres. Methods: A developmental evaluation approach was utilized to complete a real-time evaluation of Bright Ideas. Bright Ideas program materials were reviewed to describe the program. A focus group and interview were conducted with staff who led Bright Ideas projects (n = 7) to gain insight into their experiences. Additionally, interviews were conducted with the program coordinators (n = 2) to understand the evolution of the program. Data was analysed using qualitative content analysis. Results: Successes that drive the Bright Ideas program and roadblocks it has encountered were identified across three dimensions: the personal level (involving Bright Ideas project leads), the programmatic level (focusing on the Bright Ideas program), and the organizational level (pertaining to KidsAbility as a whole). Key roadblocks included a lack of knowledge about the program organizationally, restricted time resources, competing organizational priorities, and an absence of infrastructure to scale ideas from Bright Ideas into the organization. Conclusions: Bright Ideas is an innovative program aiming to make impactful change by enabling staff to lead implementation-driven projects. Our findings highlight many successes of the program and use the Theoretical Domains Framework and Behaviour Change Wheel to make recommendations to support its sustained implementation at KidsAbility.

Scope: This study describes the high and low points of caregiver and clinician experiences with pediatric telerehabilitation with consideration for the sustainable adoption of pediatric telerehabilitation beyond the COVID-19 pandemic context. Methods: As part of a larger study, this project analyzed data from qualitative interviews to describe caregivers’ (n = 27) and clinicians’ (n = 27) experiences with pediatric telerehabilitation. Findings: Caregiver and clinician experiences with pediatric telerehabilitation are described according to four touchpoints identified: (1) child engagement in telerehabilitation; (2) perceived value of telerehabilitation services and caregiver engagement; (3) preparing the people and environment for telerehabilitation services; (4) fit of using a telerehabilitation model; and (5) providing family with choice. Discussion: Findings highlight the importance of being informed about the telerehabilitation service model, feeling prepared for telerehabilitation appointments and being responsive to families’ choice. Recommendations to address these areas are discussed.

Having the choice to access rehabilitation services is a right of disabled children. In Ontario, Canada, paediatric rehabilitation services are provided by Children’s Treatment Centres (CTCs), and many manage missed appointments using discharge policies. The impact of discharge policies on access to rehabilitation services is unknown. This study critically examined the language of policies around missed appointments and impacts on service access. Using qualitative critical discourse analysis, text from discharge policies was analysed, considering how marginalised groups (e.g., low-income families, culturally diverse families) may be affected by CTC discharge policies. Discourses of family-centred service, health equity and the perpetuation of established power relations within paediatric rehabilitation were represented in the language of policies. Current policies place the organisation in a position of power, de-value family choice and risk infringing on the right of disabled children to access paediatric rehabilitation services when desired.

There is an increased interest from both researchers and knowledge users to partner in research to generate meaningful research ideas, implement research projects, and disseminate research findings. There is accumulating research evidence to suggest the benefits of engaging children/youth with disabilities and their parents/families in research partnerships; however, less is known about the benefits of, and challenges to, engaging organizations as partners in research. The purpose of this commentary is to reflect on successful organizational partnership experiences from the perspectives of researchers at an internationally-recognized childhood disability research centre ( CanChild ), and to identify and share key ingredients for developing partnerships between organizations and academic institutions. A companion study is underway to examine partnership experiences with CanChild from the partners’ perspective. Four CanChild researchers and two co-facilitators participated in a collaborative auto-ethnography approach to share experiences with organizational research partnerships and to reflect, interpret, and synthesize common themes and lessons learned. The researchers and facilitators met virtually via Zoom for 105 min. Researchers were asked to discuss the following: the formation of their organizational partnerships; if/how partnerships evolved over time; if/how partnerships were sustained; and lessons learned about benefits and challenges to building research partnerships with organizations. The meeting was recorded, transcribed verbatim, and analyzed by the facilitators to identify and synthesize common experiences and reflections. Multiple rounds of asynchronous reflection and feedback supported refinement of the final set of analytic themes. Researchers agreed that partnerships with organizations should be formed through a mutual interest, and that partnerships evolved by branching to include new organizations and researchers, while also involving trainees. Researchers identified the importance of defining roles and responsibilities of key individuals within each partnering group to sustain the partnership. Lessons learned from organizational partnerships included reciprocity between the partnering organization and academic institution, leveraging small pockets of funds to sustain a partnership over time, and building a strong rapport with individuals in a partnership. This commentary summarized lessons-learned and provided recommendations for researchers and organizations to consider when forming, growing, and sustaining research partnerships over time. Plain English summary Researchers and people who use research findings are partnering to create research projects and share results. There are examples of children with disabilities and their families participating in research partnerships, but less is known about the involvement of healthcare organizations and community organizations as research partners. The purpose of this article is to share successful examples of partnership between organizations and a childhood disability research centre from the perspective of researchers. Four researchers and two facilitators met to reflect on their experiences with organizational research partnerships. They met online for 105 min using Zoom software. The researchers were asked to talk about how their partnerships with organizations were formed, how they grew over time, and how they were maintained. The meeting was recorded, and the facilitators took the researchers’ experiences and summarized them into common messages. Everyone then read the summary on their own and added their ideas. This happened three different times until everyone agreed on one set of ideas. The researchers agreed that partnerships with organizations should be formed through common goals, that they should grow to include new partners and junior researchers, and that clear roles and responsibilities were needed to keep the partnership going. The experiences shared in this article are valuable to other researchers and organizations that are interested in forming research partnerships.

Background In 2019, our interdisciplinary team of researchers, family members, and youth co-designed four simulation training videos and accompanying facilitation resources to prepare youth, family members, trainees, and researchers to build the knowledge and skills to engage in patient-oriented research (POR) authentically and meaningfully. Videos covered challenges in aspects of the research process including (1) forming a project team; (2) identifying project objectives and priorities; (3) agreeing on results; and (4) carrying out knowledge translation. Methods The purpose of the study was to deliver four simulation training videos across 2 two-hour facilitated workshops with researchers, trainees, and family partners. We evaluated whether the training videos and facilitated discussion of the simulations helped to improve knowledge and attitudes about authentic and meaningful partnership in research and self-perceived ability to engage in POR. An explanatory sequential two-phase mixed methods design was used. Phase 1 (quantitative) included two training workshops and a pre/post-training survey. Phase 2 (qualitative) included two qualitative focus groups. Results of each phase were analyzed separately and then combined during interpretation. Results Sixteen individuals (including researchers/research staff, trainees, family members, clinicians) took part in this research study. Overall, participants were highly receptive to the training, providing high scores on measures of acceptability, appropriateness, and feasibility. While the training videos and facilitated discussion of the simulations were found to increase participants’ knowledge and ability to engage in authentic and meaningful POR, we found no significant change in attitude or intent. Recommendations about the simulation content and delivery were provided to inform for future use. Conclusions The simulations were found to be a positive and impactful way for collaborative research teams to build knowledge and ability to engage in authentic and meaningful POR. Recommendations for future work include covering different content areas with varying levels of nuance; and offering the training to stakeholders in a variety of roles, such as those higher-ranked academic positions. Plain English summary In 2019, our team of researchers, family members, and youth worked together to design and develop four digitally recorded simulation videos that can be used to train youth, caregivers/families, trainees, and researchers to engage with each other in research so that all parties feel supported and valued. This paper describes how the four simulation videos were packaged in the training and then delivered to 16 participants (researchers, trainees, and caregivers/families). We used multiple ways to evaluate the videos and training, including a survey before and after the training, focus groups with participants after the training, and written reflections shared by the training facilitators after the training was finished. We found that the simulation videos increased participants’ knowledge on engagement and their self-reported ability to engage in authentic and meaningful patient-oriented research. Participants rated their belief in engagement and their intent to engage in collaborative research highly at the pre-test and this remained consistent at the post-test. Participants liked that the simulations focused on challenges in research engagement and that the training was offered to researchers and family partners together. They provided valuable feedback on what we should change about the simulations, including the content, which should have less exaggerated lessons and to add more topics. They also suggested it would be helpful if stakeholders other than just the research team complete the training in the future, especially those who are in higher positions of academic power.