Background: Addressing the psychological well-being of people diagnosed with sarcoma, their carers, and health professionals is crucial for comprehensive care(1). This study aims to identify the needs of those within these groups to inform the development and design of a guide to assist with managing and improving psychological well-being.
Methods: A qualitative exploratory descriptive approach was used to gather rich data through semi-structured interviews. Participants included people diagnosed with sarcoma (aged 16-80 years and post-active treatment up to 10 years), their informal carers (aged 18-80 years, bereaved or non-bereaved), and health professionals who work with people diagnosed with sarcoma and their carers across a range of disciplines.
Data Collection and Analysis: Interviews, in-person and online, were recorded and transcribed. A directed content analysis, guided by the PERMA model(2) and Ryff’s theory of psychological well-being(3), is being used to identify key themes and concepts. The analysis will follow Bengtsson's(4) four-stage process: de-contextualisation, re-contextualisation, categorisation, and compilation. This method ensures a thorough analysis of the data, capturing the diverse experiences and needs of participants.
Preliminary Results: To date, ten interviews have been conducted with people diagnosed with sarcoma (N = 6), informal carers (N = 3), and health professionals (N = 1). Preliminary themes and concepts include “Emotions and Regulation”, “Controlling what I can”, “Life-altering acceptance”, and “Comprehensive care”.
Expected Outcomes: The study will uncover insights into the psychological well-being needs of people diagnosed with sarcoma, carers, and health professionals. These insights will inform the content of the well-being guide, providing targeted support and resources for people diagnosed with sarcoma and their carers.
Conclusion: This research will contribute to the development of an effective, user-informed guide. This guide will enhance the psychological support available to people diagnosed with sarcoma and their carers, improving overall well-being and quality of life.