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.

The experience of partners supporting adolescents and young adults with cancer.

AIMS: In a larger study where the aim was to investigate choice and control in decision making, the role of partners was significant. Reported here are the experiences of those partners of young people with cancer. DESIGN: A qualitative, exploratory case study approach was used. METHODS: In the larger study, 22 participants were recruited including five adolescents and young adults with cancer, two sets of parents/carers and three individual parents, five healthcare professionals linked to the adolescent or young adult with cancer and five friends or partners. Data were collected between February 2014 and February 2015 and included interviews, non-participant observation and documentary analysis. RESULTS: Three themes were identified relating to partner experience derived from partner and patient interview data: "practical support", "putting your partner first" and "acting as a confidante/ally". CONCLUSION: These findings reveal new knowledge of partner experience when adolescents and young adults have cancer. Richer in-depth understandings of partner experience are required to improve the care of adolescents and young adults with cancer and those around them. IMPACT: These findings will inform the development of guidance and further research which will enhance the knowledge of partner experience for those involved in cancer care in the adolescent and young adult age group.

'Life then', 'life interrupted', 'life reclaimed': The fluctuation of agency in teenagers and young adults with cancer.

PURPOSE: This paper presents findings from an in-depth study exploring agency in decision making when young people experience cancer. METHODS: Exploratory case studies were utilised to examine all aspects of decision making, beginning with the onset of symptoms followed by diagnosis and treatment. Interviews, observations and documentary analysis were used to generate data. Multiple sources were selected to generate further insights and these included family, partners, friends and healthcare professionals who were close to the young people during their experience. RESULTS: Three overarching themes were identified during analysis of the data: 'life then', 'life interrupted' and 'life reclaimed'. Key elements of these themes included a number of complex and interrelating factors which were interwoven within the everyday lives of the young people. In the 'life then' phase, 'holding on' to agency prior to diagnosis and the importance of close and intimate relationships was illuminated. In 'life interrupted', agentic power during treatment, in terms of the range of decision making and the complexity of the parental role, were prominent. In 'life reclaimed' the 'different but determined' nature of young people's behaviour and re-aligned agency was transparent as they were near to completing treatment. CONCLUSIONS: This study has culminated in the development of a model of individual cancer trajectories relating to the fluctuation of agency during young people's cancer experiences. These trajectories could be applied in future healthcare practice.

Autonomy and dependence: a discussion paper on decision-making in teenagers and young adults undergoing cancer treatment.

AIM: A discussion which aims to explore the diversity of decision-making during teenage and young adult cancer treatment. The discussion will be related to the concepts of autonomy, dependence and decision-making in this age group. BACKGROUND: The experience of cancer involves a significant series of treatment decisions. However, other non-treatment decisions also have to be made which can relate to any aspect of everyday life. These decisions occur against the backdrop of young people's disease experience. DESIGN: Discussion paper. DATA SOURCES: A literature search for the period 1990-2013 was undertaken. This included searching the following databases: Cumulative Index for Nursing and Allied Health Literature (CINAHL), SCOPUS, Medline, DARE, Applied Social Sciences Index and Abstracts (ASSIA), (Psych Info) and The Cochrane Library. IMPLICATIONS FOR NURSING: There is a lack of evidence into the experience of everyday decisions made by young people during cancer treatment. This may affect them in the form of unmet needs that nurses, or other professionals, fail to appreciate. CONCLUSION: Further exploration of how teenagers and young adults experience the range and process of decision-making during cancer treatment could be useful in helping to provide effective supportive care for this age group.