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Related Experiment Video

Updated: Mar 30, 2026

A Three-Dimensional Spheroid Model to Investigate the Tumor-Stromal Interaction in Hepatocellular Carcinoma
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Published on: September 30, 2021

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Managing uncertainty in advanced liver disease: a qualitative, multiperspective, serial interview study.

Barbara Kimbell1, Kirsty Boyd2, Marilyn Kendall1

  • 1Primary Palliative Care Research Group, Centre of Population Health Sciences, The University of Edinburgh, Edinburgh, UK.

BMJ Open
|November 21, 2015
PubMed
Summary

Uncertainty pervades advanced liver disease care, impacting patients, lay carers, and professionals. Addressing this uncertainty is crucial for effective supportive and palliative care planning.

Keywords:
PALLIATIVE CAREQUALITATIVE RESEARCH

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Area of Science:

  • Hepatology
  • Palliative Care
  • Qualitative Research

Background:

  • Advanced liver disease is a growing health concern with complex patient and carer needs.
  • Supportive and palliative care for this group are often neglected.
  • Understanding patient and carer experiences is vital for improving care.

Purpose of the Study:

  • To explore the experiences and support needs of patients with advanced liver disease.
  • To understand the needs of their lay and professional carers.
  • To inform improvements in supportive and palliative care.

Main Methods:

  • Multiperspective, serial qualitative in-depth interviews with patients, lay carers, and healthcare professionals.
  • Grounded theory analysis of interview data.
  • Study conducted in primary and secondary care settings.

Main Results:

  • Uncertainty was a dominant theme throughout the illness trajectory for patients, lay carers, and professionals.
  • Uncertainty stemmed from the disease's nature, unpredictable prognosis, and communication issues.
  • While acute medical care was coordinated, ongoing care lacked structure, impacting coping and care planning.

Conclusions:

  • Pervasive uncertainty significantly impacts living, dying, and caring in advanced liver disease.
  • Healthcare professionals should acknowledge and constructively address uncertainty.
  • Anticipatory care planning, or 'just in case' planning, is essential for timely supportive and palliative care.