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The Hospice Today Project

Studying Communications & Interactions in Home Hospice

Effective communication can make a large impact on a person’s health. As part of University of Utah’s College of Nursing, the Hospice Today Project is a research study that examines how members of an entire hospice care team communicate with hospice families.

Examining How Hospice Care Teams Communicate With Families

Our path to starting this study began several years ago in a place you might not expect. Our director, Lee Ellington PhD, was working on identifying communication strategies used during poison control calls that helped people get better emergency care. This work led to the development of communication training procedures that are still used in poison control centers around the country.

Realizing the potential for effective communication to make an impact on a person’s health, Dr. Ellington began to assemble a team of researchers with different backgrounds to start looking at communication in other areas of health care. One important area the team began studying was how nurses communicate with family caregivers and patients, which led us to study interactions in home hospice.

Our initial research suggested that while there were many strengths in how nurses and families worked together, there was room for improvement, especially related to involving family caregivers as important members of the hospice care team. The Hospice Care Today Project will expand our previous work by looking at how members of the entire hospice care team communicate with hospice families. Similar to our work with poison control, we hope that this study will lead to practical recommendations for better communication with hospice families.

Collaborators

This study is possible thanks to funding and collaboration from several different agencies. Our study is funded by a R01 grant from the National Institutes of Health and the National Institute of Nursing Research.

Our study would not be possible without the assistance of the Palliative Care Research Cooperative Group, a cooperative dedicated to studying and improving palliative care around the country.

These organizations all offer research funding and collaboration opportunities for individuals interested in hospice and palliative care research.

Studies

Our research project is funded by the National Institutes of Health and is made up of two related studies:

Parent Study

Purpose

The purposes of the study are to learn about symptoms that persons receiving hospice care experience and how hospice nurses communicate with the family caregiver. We hope that from learning about their experiences, we might understand and better meet the needs of families in hospice care in the future. This study is focused on the population of hospice patients, their family caregivers, and hospice care team members at several different locations around the country.

What Does the Study Entail for Hospice Care Team Members?

• Confidential recordings of hospice visits.
• Completion of a short confidential survey.
• Recordings of interdisciplinary team discussions about participating patients.

What Does the Study Entail for the Family Caregiver?

• Caregivers will complete measurement surveys at four different time points; the initial meeting, 1-­month post enrollment, 2-­months bereavement and 6-­months bereavement.
• Caregivers will be using an interactive voice recording (IVR) system on a daily basis to answer several questions about how they are feeling and symptoms that the patient may be experiencing.
• Caregivers will consent to having patient’s hospice visits recorded.

Where do These Recordings/Information I provide go?

• The recordings will be transcribed and de-identified by professionals to ensure the privacy of Hospice Care team members and patients.
• Your information is strictly confidential to our study team. It will only be used for academic research.

What about Patient Privacy?

• Patient’s privacy and dignity of care is of our utmost concern. We will be contacting cancer patients in hospice, and inviting them to participate. If they say yes, we will then schedule a meeting to explain the study to them.
• The patient will never be in the study without their consent.
• Materials completed by families and recordings are strictly confidential.

SGM Supplement

Purpose

In this portion of the study, we hope that a better understanding of the needs of LGBT+ family caregivers and communication among family caregivers, patients, and hospice providers will lead to the best care possible for all families receiving hospice services in the home.

What Do We Hope to Accomplish?

We hope to learn more about end of life concerns, hospice support and communication needs that are unique to families with LGBT+ members. Additionally, we hope to learn more about hospice providers' knowledge and experience in providing care to families with LGBT+ members. Better understanding of the needs of LGBT+ hospice family caregivers and patients will improve care for families with LGBT+ loved ones and all other families.

Interview Involvement

We are currently recruiting LGBT+ family caregivers of patients receiving hospice services now or in the past. Eligible participants will be asked to take part in an interview. The interview will last between 45-60 minutes. During this time participants will be asked about their experiences, support needs and interactions with hospice providers. Participants will receive a $50 gift card as thanks for their contribution. If you are a family caregiver interested in participating, please contact a team member at 801-448-3576 or by emailing: hospicetodayproject@utah.edu.

Contact Us

Phone: (801) 587-5368
Email: hospicetodayproject@utah.edu