Embedding public involvement in a PhD research project with people affected by advanced liver disease.

Abstract

Background Liver disease is an increasing cause of morbidity and mortality in the United Kingdom (UK) 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 experiences. 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 co-production. A PI group was set up to oversee the project through the national public engagement website VOICE, and reflections 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 UK, 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 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.