Enhancing mental health provision for those with terminal or life-limiting illness: Building clinical research capacity and capability across the East Midlands
Background Being diagnosed with a terminal or life-limiting illness can bring up feelings of anxiety, depression, and difficulty coping. Rates of mood disorders (such as depression) are higher in those diagnosed with a terminal illness than the general population, with 10% of suicides being linked to terminal or chronic illness. We also know that mental health difficulties can negatively impact physical health, reduce treatment adherence, and make accessing care difficult. Being from an ethnic minority background, living in poverty, remote or rural locations can impact both physical and mental health. The East Midlands is a unique and diverse region, with coastal/rural areas and high poverty rates in parts. The region has a lower life expectancy and higher rates of preventable death than the English average, meaning that future research priorities should focus on the needs of local communities. Currently, there are no local or national research priorities for addressing mental health concerns in those who are terminally ill. Aims and methods Healthcare professionals (HCPs) are key to delivering mental health support during palliative care, but often do not lead the research that informs their practice. We plan to bring together HCPs who are not currently engaged in research with researchers, patients/carers, and community organisations to form a clinical research network. This network will support HCPs to learn how to conduct research within the NHS to benefit patients and their families. The network will also guide a priority setting activity, that will survey the most important research questions, priorities, and gaps in our knowledge related to supporting mental health during terminal illness. We will identify initial priority areas through a focus group with patients and carers and through a search of the academic literature. The survey will be delivered across multiple rounds, asking participants from the network to rank how important specific topics are. The aim is to reach a consensus, where over 80% of participants agree an item is important or not. Patients and carers with lived experience of terminal illness will be an integral part of this process, ensuring that the topics are relevant to local needs. From here, we will develop a plan for a future research proposal through a network workshop, based on the top priorities identified during the priority setting activity. This project will run for 12 months and will aim to make the network sustainable thereafter. Patient and public involvement (PPI) We will form a Lived Experience Advisory Group (LEAG) to provide advice and guidance throughout the project on the experiences of patients and their carers. The LEAG will be co-chaired by a researcher and a member of the LEAG, who would like the opportunity to develop their PPI leadership skills. Training and support for the public co-lead will be provided. Dissemination and anticipated outcomes We will engage with local community organisations, patients/carers, and the community through social media posts, written and accessible summaries of the work, and through academic journal articles and conference presentations. Our expected outcomes are to: 1) Establish a clinical research network to support HCPs to become more research active, 2) Identify key research priorities specific to mental health in palliative care across the East Midlands, and 3) Develop a plan for a future research proposal based on these priorities.
Co-producing a Community of Practice – Transforming wellbeing inequalities by building community assets
n this Policy Brief, we explain how we created a Community of Practice (CoP) and how it can be sustained. We show how the CoP’s focus on a local community’s wellbeing and building assets can transform inequalities in wellbeing by creating three fundamental shifts in practices.