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ADVANCE: Methodology of a qualitative study.

Ruth Palan Lopez1, Ellen P McCarthy2,3, Kathleen M Mazor4,5

  • 1School of Nursing, MGH Institute of Health Professions, Boston, Massachusetts, USA.

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|May 10, 2021
PubMed
Summary

This study explores why nursing home care intensity varies for advanced dementia patients. It uses qualitative methods to understand organizational culture and proxy views, aiming to improve end-of-life dementia care.

Keywords:
dementiafeeding tubeshospital transferpalliative carequalitative methodology

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Area of Science:

  • Gerontology
  • Health Services Research
  • Qualitative Research Methods

Background:

  • Quantitative studies show regional, facility, and racial disparities in nursing home care intensity for advanced dementia.
  • These differences, particularly in the Southeastern US and among Black residents, lack clear explanations.
  • Existing research has not adequately described methods for studying these care variations.

Purpose of the Study:

  • To elucidate factors contributing to differences in advanced dementia care intensity within nursing homes.
  • To explore the roles of nursing home organizational culture and proxy perspectives.
  • To provide a template for large qualitative studies on quality dementia care in nursing homes.

Main Methods:

  • The ADVANCE (Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life) study is a qualitative research initiative.
  • It identified four hospital referral regions (HRRs) with high and low care intensity based on transfer and tube-feeding rates.
  • Researchers conducted 275 hours of observation in 13 nursing homes and interviewed 158 providers and 44 proxies.

Main Results:

  • The study assessed physical environments, care processes, decision-making, and values through observations and interviews.
  • Proxy interviews covered advance care planning, decision-making, values, communication, support, trust, literacy, and spirituality.
  • The report details the ADVANCE study design, implementation facilitators, and challenges.

Conclusions:

  • This qualitative study provides insights into the complex factors influencing care intensity for advanced dementia in nursing homes.
  • Understanding organizational culture and proxy perspectives is crucial for addressing disparities.
  • The ADVANCE study offers a methodological framework for future research on quality dementia care.