The Lived Experiences With Hope From Adolescents and Young Adults Who Have Advanced Cancer

Abstract

Objectives1. Describe the concept of hope based on perspectives of AYAs who experienced advanced cancer. 2. Differentiate the role hope has for AYAs before, during, and after experiencing cancer. ContextIn clinical care, addressing patients’ hopes may stimulate conversations about their goals, concerns, and values; helping clinicians focus on patient-centered interventions to support the patient's psychological, spiritual, and existential needs. MethodsThis descriptive qualitative study used a phenomenology informed approach to depict experiences with hope by AYAs who have advanced cancer. The participants completed two semi-structured audio-recorded virtual interviews and co-created narratives and drawings about the role of hope before, during, and after experiencing cancer. Thematic analyses were performed on the narratives. ResultsFifteen AYAs aged 12–21 years were recruited from an academic medical center and an online non-profit organization. During data collection participants had either completed treatments (60%), or were actively receiving treatments (40%). Approximately 67% of the sample experienced at least one relapse. A main theme identified from the narratives was Transitions of Hope. Participants described differences in their hope before and after experiencing cancer. Participants who experienced a relapse reported their past experiences helped them build hope during their relapse. Participants described a new sense of purpose after experiencing cancer, such as starting a non-profit organization, giving back to others, doing “what I'm passionate about”, and honoring the legacies of others. ConclusionTransitions in the role of hope occurred over time, becoming a source of mental sustenance during cancer treatment, and a source of altruism after experiencing cancer. This study adds to the understanding of hope for AYAs who have advanced cancer.