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

Objective 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. Methodology 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. Findings 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. Discussion 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. Conclusion and implications 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.