First Nations communities in Canada are disproportionately impacted by prenatal opioid exposure (POE) and neonatal abstinence syndrome (NAS). In response, we developed a research partnership with 13 First Nations communities in Ontario. Phase I of the research project, initiated in 2018, included the development of mixed-methods reports on the impact of POE for each community. This protocol outlines the evaluation of phase II, during which nine communities individually co-designed and implemented community-specific knowledge mobilisation (KMb) plans informed by findings from phase I. The evaluation aims to assess advisory working group engagement, KMb implementation and perceived community-level impacts.

This mixed-methods evaluation integrates survey and qualitative data to assess First Nations-led KMb products and activities. The Public and Patient Engagement Evaluation Tool, a validated survey instrument, will be administered to advisory group members and analysed descriptively. Focus groups and interviews will be conducted to explore advisory working group members’ experiences and analysed using phenomenological methods. Qualitative findings will be mapped to the Engage with Impact framework to assess outcomes across engagement domains.

Ethics approval has been granted by Vancouver Island University. All community contacts and advisory working group members will provide informed consent prior to data collection. Phase II activities are governed by formal community agreements. In alignment with First Nations Principles of OCAP (Ownership, Control, Access and Possession), First Nations community partners retain ownership of their KMb products and are actively involved in the design, implementation and dissemination of the project evaluation. Results will be shared through peer-reviewed publications, community reports and knowledge-sharing events.

People with a learning disability face significant health and mortality inequalities as well as wider systemic inequities. Challenges in palliative and end of life care (PEOLC) include communication difficulties, lack of involvement in decision-making and multimorbidity. Early identification of PEOLC needs is challenging, impacting timely care planning. The study aims to (1) understand barriers and enablers to providing high-quality, accessible PEOLC for people with a learning disability, and identify effective service delivery models and interventions and (2) improve PEOLC quality and accessibility by developing robust guidance for health and social care services.

This is a mixed-methods study guided by the NHS England 2021 Ambitions Framework and adopting the Social Model of Disability. There are four workstreams: (1) a retrospective cohort analysis of the Clinical Practice Research Datalink; (2) a rapid scoping review; (3) field work in four study sites across England, involving (a) interviews with senior leaders and commissioners (n=up to 16) and informal stakeholder engagement conversations; (b) ethnographic case studies with people with a learning disability at the end of life (n=up to 20) and retrospective case reviews of people with a learning disability who have died (n=up to 40), using family and staff interviews and (c) development and piloting of methods for enabling systematic identification of PEOLC need, using experience-based co-design and (4) patient and public involvement (PPI) activities and a co-production group of 10 people with a learning disability to support data analysis and outputs. Data will be analysed using adapted framework analysis methodology. This is an inclusive, co-produced study with significant involvement of advisors and researchers with a learning disability as part of the study team.

Ethical approval has been obtained for workstreams 1, 3a and 3b. Significant attention has been paid to ensuring informed consent, making adjustments for capacity. Accessible information and consent forms will be used, involving consultees and adhering to the Mental Capacity Act for participants who lack capacity. Data security will follow General Data Protection Regulation rules. Dissemination will include patient exemplars, guidance and various resources, engaging stakeholders through multiple formats.

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