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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 Care Giver?

• 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.

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Contact Us

Hospice Care Today Project

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

10 South 2000 East
Salt Lake City, UT 84112

*If this is an emergency, call 911 or your hospice care provider