End-of-life care for people with severe mental illness: mixed methods systematic review and thematic synthesis of published case studies (the MENLOC study).

OBJECTIVES: People with severe mental illness (SMI) have significant comorbidities and reduced life expectancy. The objective of the review reported in this paper was to synthesise material from case studies relating to the organisation, provision and receipt of care for people with SMI who have an end-of-life (EoL) diagnosis. DESIGN: Systematic review and thematic synthesis. DATA SOURCES: MEDLINE, PsycINFO, EMBASE, HMIC, AMED, CINAHL, CENTRAL, ASSIA, DARE and Web of Science from inception to December 2019. Supplementary searching for additional material including grey literature along with 62 organisational websites. RESULTS: Of the 11 904 citations retrieved, 42 papers reporting 51 case studies were identified and are reported here. Twenty-five of the forty-two case study papers met seven, or more quality criteria, with eight meeting half or less. Attributes of case study subjects included that just over half were men, had a mean age of 55 years, psychotic illnesses dominated and the EoL condition was in most cases a cancer. Analysis generated themes as follows diagnostic delay and overshadowing, decision capacity and dilemmas, medical futility, individuals and their networks, care provision. CONCLUSIONS: In the absence of high-quality intervention studies, this evidence synthesis indicates that cross disciplinary care is supported within the context of established therapeutic relationships. Attention to potential delay and diagnostic overshadowing is required in care provision. The values and preferences of individuals with severe mental illness experiencing an end-of-life condition should be recognised. PROSPERO REGISTRATION NUMBER: CRD42018108988.

End of life care for people with severe mental illness: Mixed methods systematic review and thematic synthesis (the MENLOC study).

BACKGROUND: Parity of esteem means that end-of-life care for people with severe mental illness should be of equal quality to that experienced by all. AIM: To synthesise international, English language, research and UK policy and guidance relating to the organisation, provision, and receipt of end-of-life care for people with severe mental illness. DESIGN: A mixed methods systematic review was conducted following the Evidence for Policy and Practice Information and Co-ordinating Centre approach and informed by a stakeholder group. We employed thematic synthesis to bring together data from both qualitative and quantitative studies, and from non-research material. We assessed the strength of synthesised findings using the Confidence in the Evidence from Reviews of Qualitative Research (CERQual) and Grading of Recommendations, Assessment, Development and Evaluation (GRADE) approaches. DATA SOURCES: Ten electronic databases were searched from inception to December 2019, along with 62 organisational websites. Quality appraisal was conducted using Critical Appraisal Skills Programme checklists or other study design-specific alternatives as necessary. RESULTS: Of the 11,904 citations retrieved, 34 research publications were included plus 28 non-research items. The majority of research was of high or acceptable quality. An overarching synthesis including 52 summary statements, with assessments of confidence in the underpinning evidence, was produced using four themes: Structure of the system; Professional issues; Contexts of care; and Living with severe mental illness. CONCLUSIONS: Implications for services and practice reflect evidence in which there is a high degree of confidence. Partnership should be developed across the mental health and end-of-life systems, and ways found to support people to die where they choose. Staff caring for people with severe mental illness at the end-of-life need education, support and supervision. End-of-life care for people with severe mental illness requires a team approach, including advocacy. Proactive physical health care for people with severe mental illness is needed to tackle problems of delayed diagnosis.

"Hitting the spot": Developing individuals with lived-experience of health and social care as facilitators to deliver a course to enhance public involvement in research - a Welsh perspective.

PLAIN ENGLISH SUMMARY: Public involvement in research has become an important and integral part of the research process in health and social care, from the early stages of research prioritisation and development to the later stages of research conduct and dissemination. Learning and development opportunities, including training, can assist the public and researchers in working together in the research process, and a training schedule exists in Wales for this purpose. One of the key components of this training schedule in Wales is the course Involving the Public in the Design and Conduct of Research: Building Research Partnerships. Building on the existing successes of this UK-wide course, first developed by Macmillan Cancer Support, a project was established between Health and Care Research Wales and Macmillan Cancer Support to develop three members of the Involving People Network into trained facilitators. Once trained, the aim was for the three facilitators to deliver the course in Wales. Macmillan Cancer Support and Health and Care Research Wales selected, through a competitive process, three members of the Involving People Network to use their lived experience of Involvement in research projects, as well as any lived experience of a physical or mental health condition or illness, to become facilitators of the course in the unique context of public involvement in research in Wales. Through this process many benefits were realised, including developing the course content and its delivery in Wales, as well as building the skills and confidence of the individuals themselves as facilitators. This has contributed to a continuing commitment to the sustainable delivery of the Involving the Public in the Design and Conduct of Research: Building Research Partnerships course in Wales and a combined approach to addressing any challenges and obstacles which presented. ABSTRACT: Health and Care Research Wales has a strategic aim to Ensure public involvement and engagement is central to what we do and visible in all elements of it. As part of the ongoing development of the Health and Care Research Wales Training Programme a project was initiated to develop members of the public as facilitators to deliver a public involvement in research course. The project was undertaken in collaboration with Macmillan Cancer Support and was advertised via the Involving People Network in Wales. Three trainee facilitators were recruited, from 14 people that applied, to deliver a public involvement in research training course, the Building Research Partnerships course, as it was known then, originally developed for and by Macmillan Cancer Support. As members of the Involving People Network, the trainees were given training, mentorship, financial and administrative support to develop their role as facilitators over a two year period. This has been reciprocated with incredible commitment, ongoing course delivery in Wales, excellent course evaluations, course review and involvement in future planning. Through this project several benefits were realised, including developing the course content and its delivery and building the skills and confidence of the individual facilitators themselves. Additionally, and importantly, the project team found that patients and members of the public who are given appropriate training and support can greatly enhance a research training programme and act as highly effective ambassadors to further the cause of public involvement in research.