Post-treatment survivorship experiences of informal carers and adults diagnosed with sarcoma: a qualitative study

Background Sarcoma, a rare and aggressive cancer affecting bone and soft tissue, disproportionately impacts young individuals.Aim The aim of this study was to explore the transition between treatment and post-treatment experiences of informal carers and people diagnosed with sarcoma within Australia, recognizing the unique challenges.Methods An exploratory qualitative design grounded in social constructivism was applied. Fourteen participants, including eight parent carers and one partner (M = 54 years; 67% female, 33% male), and five adult sarcoma survivors (M = 37 years; 60% female, 40% male), participated in online semi-structured interviews. Reflective thematic analysis was used to analyse the data.Findings Three key themes emerged: “It Takes a Village,” “I’ll Be Strong,” and “Navigating Life after Sarcoma.” “It Takes a Village” highlighted the role of social support from family, friends, and community. “I’ll Be Strong” captured the resilience needed to endure the physical and emotional challenges of sarcoma. “Navigating Life after Sarcoma” focused on adjusting to changes and redefining roles post-treatment. These findings underscore the shared experiences of informal caregivers and people diagnosed with sarcoma, how these were expressed in different ways, and how these two groups both depend on their own strength and social support throughout their experience.Conclusion This study emphasizes the complex and enduring challenges faced by informal carers and adult sarcoma survivors. Challenges that arise emphasize the importance of providing individualist and holistic care specific to sarcoma. Future research should explore and develop long-term effective interventions and consider ways to improve access to sarcoma specific care.