Developing palliative care interventions in liver disease using formative and summative qualitative evaluation.
Marie Bakitas1, Nicholas Hoppmann2, Macy Stockdill3
1Department of Medicine, Division of Gerontology, Geriatrics, and Palliative Care, School of Nursing, University of Alabama at Birmingham, Birmingham, Alabama, USA.
Hepatology (Baltimore, Md.)
|April 17, 2025
Summary
Qualitative evaluations are crucial for refining palliative care interventions in end-stage liver disease (ESLD). These methods ensure effective resource allocation and improve patient and caregiver quality of life.
Area of Science:
- Palliative Care Medicine
- Health Services Research
- Qualitative Research Methods
Background:
- Integrating palliative care into end-stage liver disease (ESLD) management requires effective interventions.
- Intervention development and evaluation are complex, systematic, and time-intensive processes.
- Qualitative research, including formative and summative evaluations, is vital for understanding intervention mechanisms, refinement needs, and implementation factors.
Purpose of the Study:
- To summarize how qualitative formative and summative evaluation methods can inform the design, adaptation, and evaluation of palliative care integration interventions for ESLD.
- To describe a qualitative summative evaluation study embedded within a larger randomized trial (PALliative Care for end stage LIVER diseases).
- To explore patient, family, and clinician perspectives on the palliative care intervention to understand enactment (fidelity) and provide a roadmap for future integration.
Main Methods:
- Qualitative formative and summative evaluation approaches.
- Embedded qualitative summative evaluation within a 19-site cluster randomized trial.
- Collection and analysis of patient, family, and clinician perspectives on the palliative care intervention.
Main Results:
- Qualitative evaluations provide critical information on intervention feasibility, acceptability, and patient-centeredness.
- The embedded qualitative study explored how the palliative care intervention was enacted (fidelity).
- Demographic data indicate the qualitative sample is representative of the parent randomized clinical trial population.
Conclusions:
- Formative and summative evaluations are essential for improving palliative care interventions in ESLD.
- These evaluations ensure equitable and effective use of scarce palliative care resources.
- Qualitative methods contribute to enhancing patient and caregiver quality of life and overall care experience.
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