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