Exploring the Role That a Helpline Could Play for People Diagnosed With Sarcoma and Their Carers

Abstract

Background: Sarcoma represents a group of cancers that carry a disproportionate impact on the well-being of people who are diagnosed and carers. Unlike more common cancers, limited tumour-specific support exists for people with sarcoma and carers. The aim of this study was to explore the potential role a telephone helpline could play in supporting people diagnosed with sarcoma and carers.

Methods: This study utilised an exploratory qualitative approach with a social constructionist framework. Semistructured interviews were conducted with people diagnosed with sarcoma, carers, bereaved carers and health professionals. Reflexive thematic analysis was conducted to determine themes.

Results: 43 semistructured interviews were conducted with people with sarcoma (n = 12), carers (n = 11), bereaved carers (n = 4) and health professionals (n = 16). Five themes were identified: ‘the current system is not meeting needs,’ ‘holistic support,’ ‘a source of credible information,’ ‘the helpline operator’ and ‘centralised support for my sarcoma.’

Conclusion: Significant unmet needs continue to exist for people diagnosed with sarcoma and carers. A community support helpline was conceptualised as a helpful and effective tool for meeting the medical, psychosocial and information needs of all people impacted by sarcoma.