EPCP1: Exploring the Role of Palliative Care in Childhood Cancer Patients

Brief Summary

EPCP1 is a qualitative interview study for parents or caregivers of children enrolled or enrolling on phase 1 clinical trials. We hope to learn more about the patient and family experience when opting to enroll in phase 1 clinical trials and their quality of life while receiving experimental therapy. Palliative care has the potential to benefit these families, and further studies are needed to determine the most effective way to integrate palliative care into the care of patients enrolled on experimental clinical trials. If a parent agrees to be in this research study, they will be asked to take part in one audio-recorded interview, which will consist of about 8–10 questions. The interview can be conducted in person, over the phone, or via Webex or Zoom (audio only).

Primary Objectives

To qualitatively assess the patient and family experience, their hopes and worries, and associated distress while deciding to enroll on a phase I clinical trial.

• To investigate the potential benefits of palliative care integration for patients and families while they are receiving experimental therapy on Phase I clinical trials.
• To identify ideal times to introduce palliative care to patients and families enrolling on phase I clinical trials through content analysis of audio recorded conversations

Eligibility criteria include:

• Caregiver is 18 years of age or older
• Caregiver is the patient’s biological parent, stepparent, or primary legal guardian
• If more than 1 set of parents are involved in the patient’s care (e.g., 2 biologic and 2 stepparents or partners), the caregiver with legal decision-making responsibilities will be eligible for participation
• Caregiver is comfortable speaking and reading English

Study Sites

St. Jude Children’s Research Hospital, Memphis, Tennessee

About this study

This study is being done because researchers want to better understand the hopes and worries of caregivers who enroll their children in clinical trials. We also want to see if caregivers think there is a benefit to having palliative care during treatment. Palliative care helps to relieve pain, symptoms, and stress. We want to learn the best times to start this care during treatment.

We are asking you to take part in this study because you are the caregiver of a child who is enrolled in a study. If you agree to be in this research study, you will take part in 1 audio-recorded interview. In the interview, a staff member asks you about 8–10 questions. The interview can be done in person, over the phone, or through Webex or Zoom. The recording will be audio only.

Purpose of this clinical trial

The main purpose of this study is to learn about a caregiver’s experience of enrolling their child in a clinical trial. Researchers also want to find out ways that palliative care can help patients. They want to find the best time to give this care during treatment.

Eligibility overview

• Caregiver is 18 years of age or older
• Caregiver is related to the patient as a biological parent, stepparent, or primary legal guardian
• If more than 1 set of parents are involved in the patient’s care (e.g., 2 biologic and 2 stepparents or partners) involved, the caregiver with legal decision-making responsibilities will be eligible to take part
• Caregiver is comfortable speaking and reading English