I had been working as a research nurse coordinator within our Pediatric Oncology Division, Supportive Care program for several years, helping to enroll and monitor patients in research studies and clinical trials. These studies were designed to ease the burden of cancer treatment and not directly on curing cancer. In this role, I was approached by a nurse principal investigator about joining a new study focused on the parents and caregivers of pediatric oncology patients with incurable disease. These parents and caregivers had been involved in making an end-of-life treatment decision for their seriously ill child. One of the objectives of the study was to learn from the parents and caregivers via interviews their definition of being a “good parent” to their child at the time of the decision-making and approximately 4 to 6 months after the decision making. At that time and prior to becoming a research nurse coordinator, I had not worked as a registered nurse on the oncology inpatient unit or in the oncology clinic. While I had since gained some experience working with families as they dealt with a new cancer diagnosis and its treatment, I had no experience when it came to a child’s death or parents’ experience of living with the fact that their child was going to die. I agreed to join the study team.

My role in the study was to identify potential parent or caregiver participants and notify study team members of these potential participants for interviews. I regularly attended clinical rounds of each of the clinical services within the Division of Pediatric Oncology and listened carefully to the status reports of the condition of each patient. I was surprised by my feeling of being a “vulture,” circling these meetings, listening for hints that a child was not going to survive. This resulted in my strong hesitancy to reach out to a child’s provider or clinical team to ask directly about the child’s prognosis. I felt intrusive and awkward—like I was doing something wrong somehow.

The study team met regularly to discuss all aspects of the study including the consenting and interview processes with participants. I observed practice role-playing sessions by study team members and was able to have input into the actual study processes. I felt a part of the study team. I chose to bring up my feeling of being a “vulture” during one of our regular study team reflection meetings. Having my feelings acknowledged by the study team members and not dismissed was reassuring. Hearing the study interviewers discuss the thought given to their timing of when to approach eligible participants and how to conduct the interview was especially helpful to me. Being part of these meetings with providers and researchers who have decades of experience with this parent and caregiver group allowed me to move past my feelings of labeling the child as dying to appreciating that we had the expertise to work with these families and that it was very important work.

As the study proceeded, I was part of the analysis group where I was humbled by our participants’ frequent wish to help those families who would come after them and unfortunately have children with incurable cancer. My purpose in sharing this experience of moving from feeling like a vulture to a cheerleader for palliative care research in pediatric oncology is to show value in the transition of a nurse or other study team member from doubting to understanding the purpose and value of a study. It is important that a study leader not overlook this possible experience of transition from research staff who may be junior, quiet, and inexperienced but who are vital to successfully screening, enrolling, and carrying out the study. Getting from idea to implementation can drain enthusiasm and could hurt how the study team functions. As a study leader, remember to pass on your passion for the study purpose and to care about your team members’ experience with the study. This will help motivate the study team and provide a better experience for participants.