Addressing Psychological Morbidity in Informal Carers at the End of Life: Evidence Synthesis and Stakeholder Consultation to Produce Tailored, Evidence-Based Information and Priorities.

Research questions: What factors increase or decrease psychological morbidity in informal carers (family and friends) of patients at end of life? What are the most accessible and useful formats for communicating this evidence to stakeholders to help them better target efforts to reduce carer psychological morbidity? Some 500,000 UK informal carers provide substantial care input for patients at the end of life (EOL) p.a., enabling care at home and reducing likelihood of acute hospital admissions. However, carers suffer high levels of clinically significant psychological morbidity with up to 83% of carers affected in the patient's final three months. Psychological morbidity impacts negatively on carer coping, increases mental healthcare costs and affects the costs and quality of patient EOL care. Both external and internal factors affect carers' likelihood of developing psychological morbidity, many of which could be ameliorated through existing health and social care provision through better informed investment and targeted, earlier support to those most likely to develop psychological morbidity. However, evidence relating to these factors has not been synthesised, and does not exist in an accessible format for key stakeholders. Aim: to reduce psychological morbidity among EOL carers through: (1) evidence-synthesis of factors affecting EOL carer psychological morbidity (2) translation of synthesised findings into accessible, tailored information for key stakeholders to enable better targeted efforts to reduce carer psychological morbidity and its impacts These two aims are mapped onto two Work Packages (WPs): WP 1 (Month 1-15): Comprehensive mixed-method literature review and synthesis, including Review of quantitative observational studies using box score and meta-analyses Review of qualitative studies using a thematic best-fit framework synthesis approach Review of interventions using pooled effect sizes and sub-group analyses Integration of review findings into a framework informed by stress models and carer perspectives using narrative, graphical and numerical display tools. Carer (PPI) advisors and a carer co-analyst will inform the search strategy, qualitative thematic analysis and framework construction to ensure that outputs are relevant and accessible to carers. WP2 (Month 9-18) Stakeholder involvement to translate WP1 findings into bespoke information, priorities and procedures Evidence review stakeholder workshop (N=30) with policy makers, commissioners, researchers, practitioners, and carer representatives to assess relevance of findings to their respective spheres of influence (settings and systems) and identify the most important information and priorities for each Translation work with our Review Advisory Panel (N=10) to develop dissemination outputs and dissemination strategies appropriate for each stakeholder group. Focus groups with practitioners and carers (N=6x2) to explore how project outputs may be operationalised into primary/ community care procedures The project will have impact by providing the first comprehensive evidence synthesis of factors affecting the psychological morbidity of carers and delivering it in accessible format to stakeholders best placed to act on it. Effective knowledge mobilisation will be aided by tailored outputs and dissemination, informed by stakeholders, as well as publication, presentations, and online/electronic communication.