Exploring The Role Of Palliative Care In Phase 1 Enrolled Pediatric Oncology Patients

Exploring The Role Of Palliative Care In Phase 1 Enrolled Pediatric Oncology Patients

This study is being conducted to learn more about the patient/family experience when opting to enroll in Phase I clinical trials and their quality of life (QOL) while receiving experimental therapy. Palliative care (PC) has the potential to be beneficial for these families and further studies are needed to determine the most effective way for integration of PC into the care of patients enrolled on experimental clinical trials.

Primary Objective

• 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.

Eligible Parent Research Participants (PRPs) who consent will participate in one audio recorded interview in which they are asked about 8-10 questions. The interview can be conducted in person, over the phone, or WebEx/Zoom (audio only). The interview will last about 30 to 60 minutes. PRPs can opt to complete interviews immediately or at a scheduled date that is convenient to the PRP.

Inclusion Criteria:

• Caregiver is 18 years of age or older
• Caregiver is related to the patient in one of the following ways: 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 for participation
• Caregiver is comfortable speaking and reading English

Exclusion Criteria:

• Those who do not meet inclusion criteria