Insights From Bereaved Parents and Oncologists

Foundations of Communication in Uncertainty Study (FOCUS): Insights From Bereaved Parents and Oncologists

Investigators want to find better ways for doctors and families to talk about cancer and how uncertainty may affect a child's life.

Primary Objective

• To characterize how bereaved parents of children with cancer and their child's oncologist perceive their experience with communication about prognostic uncertainty during the child's cancer journey and during bereavement.

Secondary Objective

• To elicit parents' and oncologists' preferences and recommendations for how clinicians should talk with children and families about prognosis in the setting of uncertainty.

This study aims to explore bereaved parents' and oncologists' reflections on communication about prognostic uncertainty during the child's cancer treatment. Parents who have lost a child to cancer and the doctors who treated them will be invited to join this study.

Participants who opt to participate in the study will engage in an audio recorded semi-structured interview with a researcher, virtually or in person (at their discretion) to share their perspectives and recommendations based on their experience. Throughout the interview, the interviewer has the option to ask additional questions (i.e., probe with questions not in the interview guide) to respond to comments made by the participant and honor the topics of interest to that given participant. The participant will be provided an opportunity to add any details or comments at the end of the interview if he/she would like to share additional information.

Following completion of the qualitative portion of the interview, the researcher will ask the participant several questions from a demographic form. The demographic form will include questions related to participant age, race/ethnicity, state/country of residence for bereaved parents, and years of clinical practice for oncologists.

Inclusion Criteria:

• All participants must be ≥ 18 years of age or legally emancipated

• Parent Participants must have a child who:

  • Received cancer care from a clinician at St. Jude, as documented in the electronic medical record, AND
  • Died at least 6 months prior to enrollment, but no more than 24 months prior to enrollment.

• Oncologist participants at St. Jude must:

  • Be listed as the primary oncologist as documented in the electronic medical record, AND
  • Have the respective patient's parent agreement to participate in the study.

Exclusion Criteria:

• Declining, refusal, or unwillingness to participate
• Inability or unwillingness of research participant to give informed consent.