Applying a healthcare model to Huntington's disease: the key worker approach

This paper follows on from an overview of the literature and current policy for Huntington’s disease (HD) published by the BJNN (Wilson et al. 2014). The previous paper highlighted a paucity of knowledge in terms of best practice available for those commissioning services to draw upon when planning care of those with HD. This discussion paper draws on this literature base and findings from a recent longitudinal research study from Wilson’s (2013) unpublished PhD thesis (available online at http://etheses.nottingham.ac.uk/3487/) to suggest a model of care, which may provide some guidance

Integrated Care to Address the Physical Health Needs of People with Severe Mental Illness : A Mapping Review of the Recent Evidence on Barriers, Facilitators and Evaluations

People with mental health conditions have a lower life expectancy and poorer physical health outcomes than the general population. Evidence suggests this is due to a combination of clinical risk factors, socioeconomic factors, and health system factors, notably a lack of integration when care is required across service settings. Several recent reports have looked at ways to better integrate physical and mental health care for people with severe mental illness (SMI). We built on these by conducting a mapping review that looked for the most recent evidence and service models in this area. This involved searching the published literature and speaking to people involved in providing or using current services. Few of the identified service models were described adequately and fewer still were evaluated, raising questions about the replicability and generalisability of much of the existing evidence. However, some common themes did emerge. Efforts to improve the physical health care of people with SMI should empower staff and service users and help remove everyday barriers to delivering and accessing integrated care. In particular, there is a need for improved communication among professionals and better information technology to support them, greater clarity about who is responsible and accountable for physical health care, and greater awareness of the effects of stigmatisation on the wider culture and environment in which services are delivered

Integrated care to address the physical health needs of people with severe mental illness : a rapid review

Background People with mental health conditions have a lower life expectancy and poorer physical health outcomes than the general population. Evidence suggests that this discrepancy is driven by a combination of clinical risk factors, socioeconomic factors and health system factors. Objective(s) To explore current service provision and map the recent evidence on models of integrated care addressing the physical health needs of people with severe mental illness (SMI) primarily within the mental health service setting. The research was designed as a rapid review of published evidence from 2013–15, including an update of a comprehensive 2013 review, together with further grey literature and insights from an expert advisory group. Synthesis We conducted a narrative synthesis, using a guiding framework based on nine previously identified factors considered to be facilitators of good integrated care for people with mental health problems, supplemented by additional issues emerging from the evidence. Descriptive data were used to identify existing models, perceived facilitators and barriers to their implementation, and any areas for further research. Findings and discussion The synthesis incorporated 45 publications describing 36 separate approaches to integrated care, along with further information from the advisory group. Most service models were multicomponent programmes incorporating two or more of the nine factors: (1) information sharing systems; (2) shared protocols; (3) joint funding/commissioning; (4) colocated services; (5) multidisciplinary teams; (6) liaison services; (7) navigators; (8) research; and (9) reduction of stigma. Few of the identified examples were described in detail and fewer still were evaluated, raising questions about the replicability and generalisability of much of the existing evidence. However, some common themes did emerge from the evidence. Efforts to improve the physical health care of people with SMI should empower people (staff and service users) and help remove everyday barriers to delivering and accessing integrated care. In particular, there is a need for improved communication between professionals and better information technology to support them, greater clarity about who is responsible and accountable for physical health care, and awareness of the effects of stigmatisation on the wider culture and environment in which services are delivered. Limitations and future work The literature identified in the rapid review was limited in volume and often lacked the depth of description necessary to acquire new insights. All members of our advisory group were based in England, so this report has limited information on the NHS contexts specific to Scotland, Wales and Northern Ireland. A conventional systematic review of this topic would not appear to be appropriate in the immediate future, although a more interpretivist approach to exploring this literature might be feasible. Wherever possible, future evaluations should involve service users and be clear about which outcomes, facilitators and barriers are likely to be context-specific and which might be generalisable

A grounded theory study: Exploring health care professionals decision making when managing end stage heart failure care

Aim: To explore how healthcare professionals in an acute medical setting make decisions when managing the care of patients diagnosed with end stage heart failure, and how these decisions impact directly on the patient's end of life experience. Design: A constructivist grounded theory approach was adopted. Method: A purposive sample was used to recruit participants that included 16 registered nurses, 15 doctors and 16 patients. Data were collected using semi-structured interviews and focus groups over a 12-month period of fieldwork concluding in 2017. The interviews were recorded and transcribed and the data were analysed using constant comparison and QSR NVivo. Findings: Four theoretical categories emerged from the data to explain how healthcare professionals and patients negotiated the process of decision making when considering end of life care. These were: signposting symptoms, organizing care, being informed and recognizing dying. The themes revolved around a core category ‘a vicious cycle of heart failure care’. Conclusion: Healthcare professionals need to engage in informed decision making with patients to break this ‘vicious cycle of care’ by identifying key stages in the terminal phase of heart failure and correctly signposting the patient to the most suitable healthcare care professional for intervention. Impact: This study provides a theoretical framework to explain a ‘vicious cycle of care’ for patients diagnosed with end stage heart failure. This theory grounded in data demonstrates the need for both acute and primary care to design an integrative end of life care pathway for heart failure patients which addresses the need for early shared decision making between the healthcare professional, family and the patient when it comes to end of life conversations