Building Better Website Resources: What People Diagnosed with Sarcoma and Their Carers Want to Know

People diagnosed with sarcoma and their carers often face significant unmet information needs that adversely affect their quality of life. A contributing factor is the limited availability of accessible, high-quality online information. This study aimed to determine the information needs of people affected by sarcoma from the perspectives of people with sarcoma, carers and healthcare professionals, to inform the development of web-based resources. People with sarcoma (n = 18), carers (n = 11), bereaved carers (n = 8) and healthcare professionals (n = 22) participated in interviews or focus groups (total N = 59). Data were analysed thematically. Nine themes were identified: “Accessing Useful Information About Diagnosis and Treatment”; “Learning to live with Sarcoma”; “Gaining Access to Psychosocial Support”; “Connecting with the Sarcoma Community”, “Obtaining Financial Support”; “Carer Self-Care”; “Facilitating Support for Family”; “Understanding Palliative Care”; and “Preparing for Bereavement and Coping After Death”. Findings support the development of a dedicated sarcoma website as a key step towards addressing their unmet needs. People with sarcoma and their carers highlighted that such a resource would not only improve access to reliable sarcoma-specific information, but also create opportunities for connection and shared experiences among individuals and families affected by sarcoma.