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

Cathy J Beresford1, Mahabuba Rahman2, Yvonne Gray2

  • 1Department of Nursing Science, Faculty of Health & Social Sciences, Bournemouth University, Bournemouth, Dorset, UK.

Health Expectations : an International Journal of Public Participation in Health Care and Health Policy
|June 12, 2024
PubMed
Summary

Public involvement in advanced liver disease research ensures studies are meaningful. This PhD project successfully integrated patient and carer experiences to shape care research in the UK.

Keywords:
PhD researchcollaboration and coproductionembedded consultationliver diseaseparticipatory researchpublic involvement

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Area of Science:

  • Health Services Research
  • Patient and Public Involvement
  • Qualitative Research

Background:

  • Liver disease is a growing cause of illness and death in the UK, with advanced stages posing significant challenges.
  • Limited research exists on the healthcare experiences of individuals with decompensated liver disease in the UK.
  • A PhD project was co-developed with patients to explore care experiences in advanced decompensated liver disease.

Purpose of the Study:

  • To embed public involvement (PI) throughout a doctoral research project.
  • To ensure the research meaningfully reflects the experiences of individuals with liver disease and their support networks.
  • To develop a theory of care experience grounded in patient and public perspectives.

Main Methods:

  • A Constructivist Grounded Theory methodology was employed for theory development.
  • The public involvement strategy evolved from embedded consultation to include collaboration and coproduction.
  • A public involvement group, including patients and carers, was established via the VOICE website.

Main Results:

  • Six individuals with liver disease and three carers actively contributed to the research from across the UK.
  • The public involvement group influenced systematic literature review findings, recruitment, data collection, and analysis.
  • Patient and public involvement directly led to a shift in the research focus.

Conclusions:

  • Embedding public involvement in doctoral research necessitates commitment, planning, and reciprocal engagement.
  • This integrated approach benefits both public contributors and the research outcomes.
  • The demonstrated public involvement model is adaptable for other postgraduate researchers.