A big part of my work this year is this recently funded evidence synthesis in the area of end of life care for people with severe mental illness. This is a cross-university study, supported by the National Institute for Health Research (NIHR) Health Services and Delivery (HS&DR) Research Programme, which also features service user researchers and a stakeholder advisory group populated by people with experience in both the mental health and end of life care fields.
Here, from our protocol, is a summary of what we’re up to:
The aim of this project is to synthesise relevant research and other appropriate evidence relating to the organisation, provision and receipt of end of life care for people with severe mental illness (including schizophrenia, bipolar disorder and other psychoses, major depression and personality disorder) who have an additional diagnosis of advanced, incurable, cancer and/or end-stage lung, heart, renal or liver failure and who are likely to die within the next 12 months.
Outputs from the project will be tailored to stakeholders, and clear implications will be drawn for the future commissioning, organisation, management and provision of clinical care. Recommendations will be made for future data-generating studies designed to inform service and practice improvements, guidance and policy.
In this context, summary objectives are to:
- locate, appraise and synthesise relevant research;
- locate and synthesise policy, guidance, case reports and other grey and non-research literature;
- produce outputs with clear implications for service commissioning, organisation and provision;
- make recommendations for future research designed to inform service improvements, guidance and policy.
This review will be conducted according to the guidance developed by the Centre for Reviews and Dissemination (CRD) and will be reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement recommendations. Reflecting Evidence for Policy and Practice Information (EPPI) Centre principles, opportunities will also be embedded into the project to maximise stakeholder engagement for the purposes of both shaping its focus and maximising its reach and impact.
Searches will be developed initially using Medical Subject Headings (MeSH) and text words across health, social care and psychology databases from their inception. In consultation with a stakeholder advisory group, supplementary methods will be developed to identify additional material including policies, reports, expert opinion pieces and case studies. All English language items relating to the provision and receipt of end of life care for people with severe mental illness and an additional diagnosis of advanced, incurable, cancer and/or end-stage lung, heart, renal or liver failure will be included. All included citations will be assessed for quality using tools developed by the Critical Appraisal Skills Programme (CASP), or alternatives as necessary if suitable CASP tools are not available. Data will be extracted into tables, and subjected to meta-analyses where possible or thematic synthesis with help from NVivo. Strength of synthesised findings will be reported where possible using GRADE and CerQual.
Information derived from the processes described above will be drawn on in an accessibly written summary. Uniquely, this synthesis will comprehensively bring together evidence on factors facilitating and hindering high-quality end of life care for people with severe mental illness, who have an additional diagnosis of advanced, incurable, cancer and/or end-stage lung, heart, renal or liver failure, and evidence relating to services, processes, interventions, views and experiences. Implications will be stated for the improvement of relevant NHS and third sector care and recommendations will be made for future research.
Right now, having convened a first advisory group meeting, we’re busy searching and sifting for evidence mostly through reviewing citations identified in a series of comprehensive database searches. I’ll be posting more here as the study progresses, but for the detail a good place to go is here for the published protocol.