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 choice for colostomy following spinal cord injury: A grounded theory study.

AIM: Explore experiences and choices related to bowel management following spinal cord injury. BACKGROUND: In one UK spinal centre, more are choosing a colostomy soon after injury in contravention of professional guidelines. Reasons for this were unknown. METHODS: Grounded theory study using semi-structured interviews with 12 individuals living with spinal cord injury. RESULTS: All 'Experienced Loss' related to bowel function. Those who chose colostomy later 'Progressed into Suffering'. Colostomy transformed lives and was likened to 'Being Alive Again'. 'Failures of Care' contributed to experiences and decision-making. CONCLUSION: Possessing information and choice emerge as key in transforming lives following spinal cord injury. They allow individuals to make choices from a lifeworld perspective, which may differ from those professionals assume. Present neurogenic bowel management guidelines fail to account for the wider lifeworlds of those they are designed for. IMPLICATIONS FOR THE PROFESSION AND PATIENT CARE: An imperative emerges to make information and choice available and involve patients in the reconstruction of guidelines. IMPACT: Unique knowledge emerges about patient experiences and motivations, and points to a patient-led revolution in how bowel management following spinal cord injury is understood and managed. The imperative for adequate access to information and choice is demonstrated. REPORTING METHOD: EQUATOR Standards for Reporting Qualitative Research (SRQR) were adhered to. PATIENT OR PUBLIC CONTRIBUTION: The methodology facilitated discussion of areas important to patients and made them co-constructors of theory.

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.

How do hospice nurses prepare to give end-of-life care? A grounded theory study of nurses in one UK hospice.

BACKGROUND: Literature for preparing hospice nurses to deliver end-of-life care is sparse. AIM: To investigate how nurses in one UK hospice prepared to deliver end-of-life care in their role. METHODS: A classic grounded theory approach was used to investigate the experiences of 22 registered nurses in one UK hospice, to discover how they prepared for their role. A total of 17 individual interviews and one focus group were conducted. Constant comparison of data and member checking were performed to establish validity. FINDINGS: Findings were synthesised into five categories: the 'shared ideal', feeling good at the job, making a difference, experience/exposure to hospice work and the importance of role models. The shared ideal formed the core category, which explained how hospice nurses feel a sense of 'fit' with their work. CONCLUSION: The feeling of a nurse feeling well-suited to the work and that there the work was a good 'fit' for them was identified as a core element to nurses' feelings of preparedness to provide end-of-life care.

Nurses+QI=better hospital performance? A critical review of the literature.

NHS regulators, such as NHS Improvement and the Care Quality Commission, promote staff involvement in quality improvement (QI), while national nursing leaders and the Nursing and Midwifery Council advocate nurses' involvement in improving services. This article critically explores the evidence base for a national nursing strategy to involve nurses in QI using a literature review. A thematic analysis shows that nurse involvement in QI has several positive outcomes, which are also included in the NHS Improvement's Single Oversight Framework for NHS Providers. The article concludes that nurse involvement in QI helps improve hospital performance.

Exercise modes and their association with hypoglycemia episodes in adults with type 1 diabetes mellitus: a systematic review.

OBJECTIVE: Type 1 diabetes mellitus rates are rising worldwide. The health benefits of physical exercise in this condition are many, but more than 60% do not participate, mainly from fear of hypoglycemia. This systematic review explores the effects of physical exercise modes on blood glucose levels in adults for hypoglycemia prevention. RESEARCH DESIGN AND METHODS: Predefined inclusion criteria were randomized or non-randomized cross-over trials of healthy non-obese adults with type 1 diabetes mellitus. Exercise interventions used standardized protocols of intensity and timing. Outcomes included hypoglycemia during or after exercise, and acute glycemic control. Medline, Cumulative Index to Nursing and Allied Health Literature, Allied and Complementary Medicine Database, SPORTDiscus, CochraneCENTRAL (1990 to 11 January 2018), and Embase (1988 to 9 April 2018) were searched using keywords and Medical Subject Heading (MeSH) terms. Inclusions, data extraction and quality assessment using the Critical Appraisal Skills Programme checklists were done by one researcher and checked by a second. Review Manager (V.5.3) was used for meta-analysis where four or more outcomes were reported. RESULTS: From 5459 citations, we included 15 small cross-over studies (3 non-randomized), 13 assessing aerobic (intermittent high-intensity exercise (IHE) vs continuous, or continuous vs rest) and 2 assessing resistance exercise versus rest. Study quality was good, and all outcome measures were reported. Thirteen gave hypoglycemia results, of which five had no episodes. Meta-analysis of hypoglycemia during or after IHE compared with continuous exercise showed no significant differences (n=5, OR=0.68 (95% CI 0.16 to 2.86), I2=56%). For blood glucose there was little difference between groups at any time point. CONCLUSION: IHE may be safer than continuous exercise because of lesser decline in blood glucose, but more research needs to demonstrate if this would be reflected in hypoglycemic episode rates. TRIAL REGISTRATION NUMBER: CRD42018068358.

Applying for ethical approval for research: the main issues.

The need to obtain research ethical approval is common to all research involving human participants. This approval must be obtained before research participants can be approached and before data collection can begin. The process of ethical review is one way that research participants can be confident that possible risks have been considered, minimised and deemed acceptable. This article outlines some of the main issues researchers should consider when planning an application for research ethical approval by answering the following six questions: 'Do I need research ethical approval?', 'How many applications will I need to make?', 'Where should I apply for research ethical approval?', 'What do I need to include in my application?', 'What do research ethics committees look for?' and 'What other approvals might I need?' Answering these questions will enable researchers to navigate the ethical review process.

Stages in the research process.

Research should be conducted in a systematic manner, allowing the researcher to progress from a general idea or clinical problem to scientifically rigorous research findings that enable new developments to improve clinical practice. Using a research process helps guide this process. This article is the first in a 26-part series on nursing research. It examines the process that is common to all research, and provides insights into ten different stages of this process: developing the research question, searching and evaluating the literature, selecting the research approach, selecting research methods, gaining access to the research site and data, pilot study, sampling and recruitment, data collection, data analysis, and dissemination of results and implementation of findings.

Planning a research project.

The planning stage of any research project is one of the most important stages in the research process. This article offers insight into the important issues a researcher needs to consider when planning his or her research, including how to develop a research protocol, obtaining research funding, seeking academic, peer and social support, gaining research ethics and governance approval and planning a research schedule. Careful planning ensures that the research project is achievable and can be completed on time, with the funding available.