Embedding Public Involvement in a PhD Research Project With People Affected by Advanced Liver Disease.

BACKGROUND: Liver disease is an increasing cause of morbidity and mortality in the United Kingdom and can be challenging to live with in the advanced stages. There has been little research exploring the healthcare experiences of UK individuals with decompensated disease when the liver cannot carry out its functions properly. A PhD research project was developed with people who have liver disease to explore care experiences in decompensated advanced liver disease. Public involvement (PI) is an essential aspect of meaningful health research, and this paper reports on the progression of our PI approach in this ongoing study. OBJECTIVE: To embed PI throughout the research project to ensure that the study is meaningful to individuals with liver disease and the people who support them. METHODS: The research adopts a Constructivist Grounded Theory methodology to develop a theory of care experience. Various PI approaches were considered in developing the PI strategy for this qualitative study. Initially, Embedded consultation was the preferred model, which has evolved to include aspects of collaboration and coproduction. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections on PI from three members of the group are included in this paper to illuminate the PI process. RESULTS: Six individuals with liver disease and three carers from across the United Kingdom are part of an ongoing PI group. Their role includes commenting on the findings of the systematic literature review for this project and contributing to decisions about recruitment, data collection and data analysis. Additionally, they had a direct impact on changing the focus of the research. The PI group will continue involvement until the completion of the project. CONCLUSION: Successfully embedding PI into doctoral research, as demonstrated in this project, requires commitment, planning and dedication to reciprocal working for the benefit of PI contributors as well as the research. This approach could be adopted by other postgraduate researchers. PATIENT OR PUBLIC CONTRIBUTION: This project is overseen by the PI group, whose contribution is described throughout, including reflections from three PI group members.

The experiences of people with liver disease of palliative and end-of-life care in the United Kingdom-A systematic literature review and metasynthesis.

BACKGROUND: Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end-of-life care experiences of people with liver disease in the United Kingdom. METHOD: A systematic review was conducted using a five-stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). RESULTS: Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end-of-life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person-centred care as an important feature. CONCLUSION: This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person-centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end-of-life. PATIENT AND PUBLIC CONTRIBUTION: An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic.

The impact of virtual simulation on the recognition and response to the rapidly deteriorating patient among undergraduate nursing students.

A major patient safety challenge is recognition and response to deteriorating patients since early warning signs are often not detected in a timely manner. Nursing students typically learn the skills for early identification through clinical placement, but clinical placements are not guaranteed to provide exposure to deteriorating patients. Nursing students require practice with emergency scenarios to develop their competency and confidence to act in this area. This study aimed to explore the impact of a virtual simulation intervention on the recognition and response to the rapidly deteriorating patient among undergraduate nursing students. A mixed methods study involving a quasi-experimental pre/post design and focus groups. The participants were third or final year undergraduate nursing students from five university sites across four countries (Canada, England, Scotland and Australia, n = 88). Students were randomly assigned to a treatment or control group. The treatment group received a virtual simulation intervention and participated in a focus group. The virtual simulation intervention had a significant effect on improving nursing student knowledge and clinical self-efficacy in the recognition and response to the rapidly deteriorating patient. Students reported that the virtual simulations decreased anxiety, helped them prioritize, filled gaps in their learning, and encouraged autonomous learning within a safe 'low risk' environment. Virtual simulation is an effective strategy for improving knowledge and confidence in recognizing and responding to the rapidly deteriorating patient among undergraduate nursing students.

Multidisciplinary Provision of Food and Nutritional Care to Hospitalized Adult In-Patients: A Scoping Review.

PURPOSE: Multidisciplinary approaches to nutritional care are increasingly emphasized and recommended. However, there is little evidence of how different disciplines work together collaboratively to deliver optimum quality care to adult in-patients. This scoping review aimed to describe the existing literature on multidisciplinary collaboration to identify the various disciplines involved and the features that influence collaborative working in implementing multidisciplinary food and nutritional care with adult in-patients. METHODS: Multiple databases were searched, including MEDLINE Complete, Embase, CINAHL Complete, HMIC, and Scopus, from their inception to December 2019. Data were retrieved from eligible studies. A narrative description of findings is reported with respect to the disciplines involved, the aspects of nutritional care explored, and the collaborative processes categorized using the input, process, and outcome framework. RESULTS: Thirty-one studies with heterogeneous study designs met the eligibility criteria. Studies were undertaken in six countries. Findings show a wide diversity of multidisciplinary collaborations in various aspects of nutritional care in all studies. Multidisciplinary nutritional care provision was facilitated by several processes, including training and development, communication and information sharing, and clinical leadership and management support. Outcomes were reported at the patient, team, and organizational levels. CONCLUSION: This review reveals the significance of the interrelationship between different disciplines and their complementary contributions towards the delivery of optimal food and nutritional care. Key aspects include the involvement of different disciplines, the clarification of roles and multidisciplinary interrelationships, communication, information sharing, clinical leadership, and management support, all of which facilitated collaborative working. Our review uncovered that these features can significantly influence multidisciplinary working. This review is the first to present literature concerning the attributes that affect collaborative working. Further research is recommended specifically around multidisciplinary nutritional care processes and conditions that allow for better collaborative working.

Patient choice for older people in english NHS primary care: theory and practice.

In the English National Health Service (NHS), patients are now expected to choose the time and place of treatment and even choose the actual treatment. However, the theory on which patient choice is based and the implementation of patient choice are controversial. There is evidence to indicate that attitudes and abilities to make choices are relatively sophisticated and not as straightforward as policy developments suggest. In addition, and surprisingly, there is little research on whether making individual choices about care is regarded as a priority by the largest NHS patient group and the single largest group for most GPs-older people. This conceptual paper examines the theory of patient choice concerning accessing and engaging with healthcare provision and reviews existing evidence on older people and patient choice in primary care.

Evaluating the patient journey approach to ensure health care is centred on patients.

BACKGROUND: In order to become more patient focused, the City Hospitals Sunderland NHS Foundation Trust developed the 'patient journey' approach, which was a 'comprehensive practice development/service improvement' model. AIM: For an 'outsider' (a newly qualified nurse with personal experiences as a patient) to implement a new patient journey in an unrelated hospital trust, to enable an impartial and independent evaluation of the model. METHOD: This was an action-research study, with data collected through a variety of sources such as matrix sampling, project team meetings, mapping and semi-structured qualitative interviews. RESULTS: Participants spoke extremely highly of the care received, while interviews revealed more insightful and sometimes distressing information. A number of changes to service delivery were made as a result, including the introduction of a dedicated telephone line giving patients direct contact with the vascular nurse practitioner. DISCUSSION: The most notable attributes of the patient journey approach are: giving patients a 'voice'; enhancing collaborative multidisciplinary teamwork; shared ownership and decision-making; providing evidence to substantiate change; and achieving results. CONCLUSION: The City Hospitals Sunderland patient journey approach is an effective, patient-centred, collaborative service improvement model.