Poster Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

"IT REALLY TAKES A VILLAGE". An  exploratory study on the lived experiences of families of  adolescents and young adults (AYAs) diagnosed with sarcoma.   (126014)

Maureen Ms Tan 1 , Georgia Prof Halkett 1 , Anna Dr Bosco 1 , Moira A. Prof O'Connor 1
  1. Curtin, Bentley, WESTERN AUSTRALIA, Australia

Purpose: Sampling and setting: Six AYAs diagnosed with sarcoma, five siblings, three fathers and five mothers participated in online conversational interviews, over eighteen months about the impact sarcoma had on their families. Procedure: Reflexive thematic analysis, informed by Van Deurzen's four existential dimensions (Umwelt-physical world, Mitwelt-social world, Eigenwelt- personal world, and Uberwelt-spiritual world), identified themes within and across interviews. Results: The findings highlight that family members had distinct experiences based on their roles in the family. These were into three domains: spatiotemporal, relational, and personal domains. There were seven main themes. 1. The cancer world is a mini society. 2. The day-to-day that is a life of one’s own, living life away from sarcoma. 3.You’ve got that loving (and guilty) feeling. 4. Holding on to us: maintaining connection in relationships was important for personal well-being. 5. Rituals and habits: food, humour, and games. 6. Changing the view, reconstructing spaces as one’s world. 7. Solidarity: commitment as a family to find purpose, meaning and support  through the sarcoma journey . Conclusion: Family members’ roles shifted, and this created difficulties and pressure for family members. Conclusively, relationship  connections were key to alleviating stress and isolation across the sarcoma trajectory. One implication is the added layer of complexity due to the variability of  individual family members’ ongoing ability to communicate their psychosocial stressors across time .  The findings call for psychosocial cancer support to be extended to families from diagnosis to post-cancer treatment as they navigated sarcoma.