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.

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Focus Group

Upcoming Focus Groups (All Virtual due to Covid-19)

Caring Conversations to Improve End of Life Care for Black New Yorkers

End of Life Choices New York is a non-profit organization with a mission to expand end of life options, improve end of life care, and promote healthcare equity at the end of life. Our goal is for all New Yorkers to have a peaceful death and receive end of life care in alignment with their wishes and values. 

The COVID-19 crisis has shed a glaring light on not only the health and healthcare related inequities faced by the Black community, but it has also exposed the need for caring conversations relative to end of life care. As we work to ensure that all New Yorkers can have the end of life care they desire, we realize the need to foster and facilitate open dialogue and create solutions that are community driven.

Therefore, if you are a Black New Yorker whose work serves Black families, we invite you to engage in a community conversation around the end of life needs of Black New Yorkers. In particular, we would like to hear from those that have professional perspectives in law, public health, social services, medicine, community organizing, nonprofit sector, and other on the ground work.

We will host two (2) sessions and would appreciate your input and experiences through this process.

Please register for one of the two sessions below and complete this form so we can learn more about you. Also, please feel free to pass this along to any colleagues whom you believe could add value to the conversation.

Caring Conversations for End of Life Care

November 8th, 1pm-3pm. Register here.

Remember to complete this form after registering.

Don’t see a day/time that works for you? Send us an email at info@eolcny.org and we will let you know if/when additional sessions are scheduled.

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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

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