Abstract. Objectives: To explore the experiences of parental carers and young adults diagnosed with sarcoma, during post-treatment survivorship.
Methods: An exploratory qualitative research design was adopted underpinned by a social constructionist epistemology. Convenience sampling was used to recruit 8 parent carers of people with sarcoma and 5 young adults who had received treatment for sarcoma and were in a survivorship phase. Participants were recruited through existing networks. Semi structured interviews were conducted and analysed using reflexive thematic analysis.
Results: Four themes emerged from the data from parental carers and young adults: ‘I’ll be strong for you’ emerged from both groups but manifested in different ways; ‘Connection is key: It takes a village’, parental carers and young adults expressed a need for support and connection and, at times, both parental carers and young adults experienced social isolation and loneliness. Young adults lost social networks such as study groups, work colleagues and sporting peers and parents had reduced time and personal resources for socialising; ‘The elephant in the room’ reflected people’s reluctance to talk about sarcoma, this included parental carers and young adults not wanting to disclose their fears or distress to each other; ‘People move on, but not us: The new me’, this theme was about parental carers and survivors moving forward as people with different roles and different lenses on life after active treatment.
Conclusion: These findings demonstrate that the experiences and feelings of parental carers and young adults are mirror images; with similar but also different experiences as the young adults transition to survivorship. This transition is not seamless and there is a need for supports for people affected by sarcoma to reduce loneliness and social isolation and enable discussion of feelings in a safe way that meets the needs of individuals and their families.