You learn to live; It is an altered existence: A study of mothers who care for adolescents and young adults navigating a sarcoma diagnosis

The objective of this study was to explore the lived experiences of mothers caring for adolescents and young adults (AYAs) diagnosed with sarcoma using an existential phenomenological approach. Nine mothers participated in conversational interviews. Reflexive thematic analysis, informed by Van Deurzen's four existential dimensions (Umwelt, Mitwelt, Eigenwelt, and Uberwelt), identified recurrent themes within and across interviews. Mothers' experiences could be thematized into three domains: the spatiotemporal, relational, and personal domain with nine sub-themes. These domains intersected with Van Duerzen's four dimensions to provide contextual attributes of living through a sarcoma diagnosis. We find mothers' are equally affected by their children's sarcoma diagnosis, albeit different to an AYA patient. Mother's experiences of the spatiotemporal domain are contingent on the qualities of relationships within the sarcoma lifeworld. Mothers' subjective experiences affected their perceptions their roles as carers. Connective relationships alleviate the stressors as carers. The findings call for embedding an existential perspective in psychosocial approach to support carers’ when learning about their experiences. A framework is provided as a guide for health professionals. • Theoretical Perspective: An existential phenomenology lens to explores mothers' complex experiences with sarcoma caregiving. • Aims: Identify phenomenological themes and develop an understanding of the intersection between lived experiences and practical roles of mothers who are carers and their cancer care experiences. • Key Findings: Three interconnected domains and nine sub themes reveal the multifaceted nature of mothers' caregiving journey. • Discussion Highlights: A Dasein focused framework is developed to support healthcare professional to embed an existential perspective in their interactions with mothers who are carers. • Conclusion: An existential perspective supports mothers' relational experiences alleviate the anxiety and stress as carers of their adolescent and young adult children. By extension, the study acknowledges the emotional complexity of family cancer journeys. The Dasein focused framework can be a tool for identifying areas for psychosocial support referrals.