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Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
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Exploring knowledge, perspectives, and misperceptions of palliative care: A mixed methods analysis.

Lee A Hugar1, Carley Geiss2, Melody N Chavez2

  • 1Lexington Urology, Lexington Medical Center, West Columbia, SC.

Urologic Oncology
|May 24, 2023
PubMed
Summary

Patients with advanced bladder cancer and their caregivers have high palliative care knowledge but common misconceptions. Clearer counseling is needed to improve understanding of palliative care goals and benefits.

Keywords:
Bladder cancerCaregiverHospiceInterviewMixed-methodsPalliative careQualitative

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Area of Science:

  • Oncology
  • Palliative Care
  • Patient Education

Background:

  • Understanding palliative care knowledge and beliefs is crucial for patients with advanced bladder cancer.
  • Caregivers play a vital role in patient care and decision-making.

Purpose of the Study:

  • To assess the knowledge and beliefs surrounding palliative care among patients with stage II or greater bladder cancer and their caregivers.
  • To identify any existing misconceptions about palliative care.

Main Methods:

  • Recruited 16 patient-caregiver dyads, 11 patients, and 1 caregiver.
  • Utilized surveys and semistructured interviews for data collection.
  • Applied thematic analysis to interview transcripts.

Main Results:

  • Patients and caregivers demonstrated high baseline palliative care knowledge and receptivity.
  • Despite high knowledge, participants harbored common misconceptions, associating palliative care with hospice and death.
  • Key themes revealed a general lack of awareness, viewing palliative care as solely emotional support, or for those without support or who have 'given up.'

Conclusions:

  • High educational attainment and baseline knowledge did not prevent misconceptions about palliative care.
  • There is a clear need for improved patient counseling on the definition, goals, benefits, and availability of palliative care.