Research and Focus Groups

End of Life Choices New York will sometimes conduct research or focus groups to learn about a range of end of life issues, and how best to address them. Often, these initiatives focus on serving particular communities that are not reached or benefitted by existing programs.

If we have any opportunities, we will list them below. We appreciate your interest and hope to connect with you!

Current options (click to jump to section or scroll down):

Survey
Focus Group
Interviews

Survey

Survey of Black New Yorkers’ Caregiving & End of Life Experiences

This research study is being conducted by End of Life Choices New York and the City University of New York (CUNY) Graduate School of Public Health and Health Policy. The purpose of this study is to explore the experience of caregiving and navigating the medical system. We are interested in hearing from Black New Yorkers in particular, because we are New York-based and we recognize there is a need for more/better programs and resources.

Participation involves completing an anonymous online survey. The survey takes approximately 15-20 minutes to complete, and participants are asked about their experience being a caregiver, their loved one’s medical care at the end of life, and their thoughts on end-of-life topics. There is no cost or compensation to participate. The goal of the study is to develop programs and resources to support caregivers and improve end of life care.

You may be eligible if you are Black, live in New York, are between the ages of 25-65, and were a caregiver to a loved one that passed/transitioned within the last 15 years. To participate, please visit endoflifechoicesny.org/survey.

Focus Groups

No focus groups scheduled at this time.

Read our special report Caring Conversations for End of Life Care: Findings from Focus Groups with Black New Yorkers

Interviews

Exploring End of Life Experiences in Diverse Communities

If you served as a caregiver to your parent at the end of their life, we want to hear about your experience. The goal of this study is to develop programs & resources to better support families during these times.

You may be eligible to participate if you:

Are 50 years of age or older
Are African American
Were a caregiver for a parent who has passed/transitioned within the last 10 years
Were present for, or assisted with, your parent’s medical decisions
Live in counties in NY, NJ, or CT that are part of the metropolitan area.

Participation involves:

A 1-2 hour interview (over phone or video call)
Answering questions about your experience being a caregiver, your interactions with the healthcare team, and thoughts on end of life topics.
Compensation is provided.

For more information and to participate, please visit https://bit.ly/3rkm9uo