‘Never once was I thinking the c-word’: Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis

Aims and Objectives: To describe the facilitators and barriers of getting from ‘something's not right’ to a childhood cancer diagnosis from the perspective of parents living in the United States of America. Background: It is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events. Design: An inductive qualitative inquiry. Methods: In-depth, semi-structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed. Results: Participants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something ‘wasn't right’ and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment. Conclusion: Families experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis. Relevance to Clinical Practice: Understanding the path to diagnosis from the parent perspective may increase opportunities for shared decision-making. Clinician educational modules that include family perspectives may improve patient/parent–provider relationships. Participant Contribution: Participants described their family's cancer journey through narrative storytelling. Participants had the opportunity to review and make edits to their transcript.