This cross-sectional study explores the quantity and patterns of sleep in hospitalized children to determine factors associated with sleep quantity and nighttime waking.

Background: Co-design is an approach to engaging stakeholders in health and social system change that is rapidly gaining traction, yet there are also questions about the extent to which there is meaningful engagement of structurally vulnerable communities and whether co-design leads to lasting system change. The McMaster University Co-Design Hub with Vulnerable Populations Hub (‘the Hub’) is a three-year interdisciplinary project with the goal of facilitating partnerships, advancing methods of co-design with vulnerable populations, and mobilising knowledge.Aims and objectives: A developmental evaluation approach inspired by experience-based co-design was used to co-produce a theory of change to understand how the co-design process could be used to creatively co-design a co-design hub with structurally vulnerable populations.Methods: Twelve community stakeholders with experience participating in a co-design project were invited to participate in two online visioning events to co-develop the goals, priorities, and objectives of the Hub. Qualitative data were analysed using a thematic content analysis approach.Findings: A theory of change framework was co-developed that outlines a future vision for the Hub and strategies to achieve this, and a visual graphic is presented.Discussion and conclusions: Through critical reflection on the work of the Hub, we focus on the co-creative methods that were applied when co-designing the Hub’s theory of change. Moreover, we illustrate how co-creative processes can be applied to embrace the complexity and vulnerability of all stakeholders and plan for system change with structurally vulnerable populations.<br />Key messages<br /><ol><li>Co-design processes are complex, requiring vulnerability, trust, flexibility, and a willingness to create and sustain change.</li><br /><ol>Innovative co-creation methods can elicit diverse experiences and impact change in services, systems, and policies.</ol></ol>

Parents of children with Neurodevelopmental Disabilities (NDDs) are at risk of sleep loss. No comprehensive systematic reviews examining parental sleep outcomes in caregivers of children with NDDs exist. A systematic search was conducted between June and August 2016 examining sleep quantity, quality, sleepiness, and fatigue outcomes of caregivers of children with NDDs. Of 7,534 citations retrieved, 33 met eligibility criteria. Most studies ( n = 27) were cross-sectional, included a range of NDDs and were of "poor" ( n = 14) or "fair" ( n = 17) quality. Few good quality studies compared objectively measured sleep in parents of children with NDDs with parents with typically developing children. Parents of children with NDDs consistently reported significantly poorer subjective sleep quality. There is a paucity of good quality comparative studies, using well-validated measures, examining parental sleep outcomes. Future research should aim to fill this gap, providing greater insight to parents' experiences, and identifying targets for intervention design and evaluation.

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.