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.

Selecting the right approach.

Research can be a complex and challenging endeavour but the outcomes will often change peoples' lives. Such a claim stands not only for clinical trials developing new medicines or therapeutic interventions, but also for qualitative studies that help us to understand how and why people experience health and illness as they do. The real challenge for researchers can be to ensure that the right questions are asked and that the most appropriate methodological approaches are adopted to answer these questions.

Ensure nurse research is rigorous.

DR LESLIE Gelling is a Reader in Research Ethics and a nurse in the Faculty of Health, Social Care and Education at Anglia Ruskin University in Cambridge. Between 2008 and this edition, Leslie has been the editor of Nurse Researcher and he is now moving to the Journal of Clinical Nursing.

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.