Julia Bandini

The Changing Landscape of Health Literacy During the COVID-19 Pandemic: The Viral Transmission of Knowledge and Information Around COVID-19

With the official public health emergency ended, now is a good time to reflect on the changing landscape of health literacy and consider how we can improve health communication in the future.

Tele-Palliative Care Among Underserved Patients: Considerations for Future Research to Ensure Equity for All Patients

Underserved patients have been historically marginalized in health care and may experience extensive barriers to palliative care. Telehealth may be a particularly promising mode of palliative care by engaging patients across long distances and facilitating access to existing palliative care resources.

Journal Article

"It Haunts Me": Impact of COVID-19 Deaths on Frontline Clinicians In Acute Care Settings — A Qualitative Study

This article examines clinicians’ experiences around end-of-life situations that arose during the provision of care to dying patients with COVID-19 in acute care settings and the impact of these experiences on the clinicians’ lives as health care professionals over time.

Journal Article

Low Tech, High Potential: Using Technology to Improve Communication Across Home Care Workers

Our findings suggest that a basic workflow process—communication among HCWs—is limited in many home care settings. Simple technologies could be developed to support HCWs to navigate the challenges of providing care to clients in their homes.

Journal Article

Experiences with Telehealth for Outpatient Palliative Care: Findings from a Mixed-Methods Study of Patients and Providers Across the United States

The purpose of this mixed-methods study was to examine and compare telehealth experiences among outpatient palliative care programs and their patients in the United States.

Journal Article

"Palliative Care Is the Only Medical Field That I Feel Like I'm Treated As a Person, Not As a Black Person": A Mixed-Methods Study of Minoritized Patient Experiences with Palliative Care

The goal of this mixed-methods study was to examine differences in patient experiences by race/ethnicity in palliative care and to qualitatively explore minoritized patient experiences with care for a serious illness.

Journal Article

Incorporating the Patient and Caregiver Voice in Palliative Care Quality Measure Development

As part of a national effort to develop palliative care quality metrics for use in accountability programs, we sought to develop survey items assessing patients' experiences of outpatient palliative care, incorporating the patient's voice.

Journal Article

Evaluation of Phase II of the Medicare Advantage Value-Based Insurance Design Model Test: First Two Years of Implementation (2020–2021), and Appendixes

This report presents the RAND Corporation team's findings from its evaluation of Phase II of the Medicare Advantage Value-Based Insurance Design model test, for the years 2020 and 2021.

Report

An Evaluation of a Multisite, Health Systems–Based Direct Care Worker Retention Program: Key Findings and Recommendations

A mixed-methods evaluation of a program to help stem the loss of newly hired entry-level caregivers found no positive effect on retention or financial sustainability.

Research Brief

Helping Caregivers Thrive? An Evaluation of a Direct Care Worker Retention Program

The 12-month program, Transformational Healthcare Readiness through Innovative Vocational Education, took a multipronged approach to addressing employment barriers for entry-level health care workers across three health systems from 2019 to 2021.

Research Brief

New Patient-Centered Quality Measures for Office-Based Palliative Care

This research brief describes the development and testing of two patient-centered quality measures of symptom management and communication and provides considerations for palliative care providers that plan to use them.

Report

MACRA Palliative Care Quality Measure Development—Testing Summary Report: Measure Name: Receiving Desired Help for Pain

The authors describe the results of their national beta field test for a performance measure designed to assess the extent to which patients who used ambulatory palliative care received the help they wanted for their pain.

Report

MACRA Palliative Care Quality Measure Development—Testing Summary Report: Measure Name: Feeling Heard and Understood

The authors describe the results of their national beta field test for a performance measure designed to assess the extent to which patients who used ambulatory palliative care felt heard and understood by their palliative care provider and team.

Report

Giving a Voice to Home Care Workers: An Empowering Data Collection Method and Source of Caregiving Support During the COVID-19 Pandemic

This Perspective shows how journaling can be a valuable source of support and a flexible data collection method for home care workers, a profession that is socially isolated and at heightened risk during the coronavirus disease 2019 pandemic.

Journal Article

Home Care Aide Safety Concerns and Job Challenges During the COVID-19 Pandemic

The goal of this study was to examine experiences of agency-employed home care aides during the COVID-19 pandemic and to identify ways to mitigate concerns.

Journal Article

"If We Turned Our Backs, They Would Ignore Our Wishes": Bereaved Family Perceptions of Concordance of Care at the End of Life

The purpose of this study was to characterize decedent wishes for care at the end of life and to examine next of kin narratives of their loved ones' perceptions of whether wishes were honored.

Journal Article

Journaling Among Home Care Workers During the COVID-19 Pandemic: A Promising Method for Qualitative Data Collection

We explored the feasibility of a journaling process during a public health emergency, and reflect on lessons learned to guide future research on journaling for data collection, particularly for marginalized workers during public health crises.

Journal Article

Ethics Consultations Related to Opioid Use Disorder

The aim of this study was to characterize ethics consult questions among inpatients with opioid use disorder at Massachusetts General Hospital.

Journal Article

Negotiating the 'Buffet' of Choice: Advances in Technology and End-of-Life Decision-Making in the Intensive Care Unit Setting

This article explores medical decision-making in the setting of the intensive care unit (ICU) drawing on ethnographic data of ICUs as well as interviews with family members of critically ill patients as and clinicians.

Journal Article

Beyond the Hour of Death: Family Experiences of Grief and Bereavement Following an End-of-Life Hospitalization in the Intensive Care Unit

This article examines bereaved family members' experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences.

Draft

MACRA Palliative Care Quality Measure Development: Summary Report of Alpha Testing

Summarizes findings from a small pilot study which was conducted to evaluate the feasibility of data collection processes and refine the testing plan in advance of a larger national field test.

Journal Article

Bereaved Family More Likely to Report "Too Little" Care Than "Too Much" Care at the End of Life

Interviews with family members about their loved one's end-of-life care found that a majority thought he or she received the right amount of care. One in six said their family member received too little care.

Journal Article

Individual, Interpersonal, and Health Care Factors Associated with Informal and Formal Advance Care Planning in a Nationally-Representative Sample of Midlife and Older Adults

This paper examines correlates of advance care planning among midlife and older adults in the U.S., with attention to informal planning (e.g., conversations) and formal planning (e.g., legal documentation) and factors at the individual, interpersonal, and health care levels.

Journal Article

Racial Differences in End-of-Life Care Quality Between Asian Americans and Non-Hispanic Whites in San Francisco Bay Area

Compared with caregivers of non-Hispanic whites, caregivers of Asian decedents reported unmet needs for caregiver support and lack of respect for cultural traditions and religious/spiritual beliefs.