Poster Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Exploring the psychological well-being of people diagnosed with sarcoma and their informal carers from diagnosis to survivorship and end of life: Informing the development of the sarcoma well-being guide (125384)

William Lorimer 1 , Moira O'Connor 2 , Ursula Sansom-Daly 3 4 , Mandy Basson 5 , Erinna Ford 6 , Georgia Halkett 1
  1. School of Nursing/Curtin Health Innovation Research Institute (CHIRI), Curtin University , Perth , Western Australia, Australia
  2. School of Population Health, Curtin University , Bentley , Western Australia, Australia
  3. Sydney Youth Cancer Service , Nelune Comprehensive Cancer Centre, Prince of Wales Hospital, Randwick, New South Wales, Australia
  4. Behavioural Sciences Unit, Discipline of Paediatrics and Child Health, UNSW Medicine and Health, University of New South Wales (UNSW) Sydney, Sydney , New South Wales, Australia
  5. Sock it to Sarcoma!, Perth, Western Australia, Australia
  6. Ninox Cancer Support Crew, Perth, Western Australia, Australia

Background: Addressing the psychological well-being of people diagnosed with sarcoma, their carers is crucial for comprehensive care(1). This study aims to explore the psychological well-being needs of people diagnosed with sarcoma and their carers to inform the development of a well-being guide to assist in managing psychological well-being.

Methods: A qualitative exploratory descriptive approach was used to gather data through semi-structured interviews. Participants included people diagnosed with sarcoma (aged 25-86 years and post-active treatment up to 15 years), their informal carers (aged 20-61 years, bereaved or non-bereaved), and health professionals working with people diagnosed with sarcoma and their carers.

Data Collection and Analysis: Interviews, conducted in-person and online, were recorded and transcribed. A reflexive thematic analysis was used to explore psychological well-being. The analysis followed Braun & Clarke’s(2) six-step approach: familiarisation with the data, generating initial codes, constructing themes, reviewing themes, defining and naming themes, and producing the report. This method ensures in-depth analysis, capturing diverse participant experiences and needs.

Findings: Twenty interviews were conducted in total; people diagnosed with sarcoma (N = 9), informal carers (N = 6), and health professionals (N = 5). Three themes were constructed: “It was life-changing – Navigating a sarcoma diagnosis”; “Emotional distress and uncertainty” which included the subthemes “Lack of psychological support” and “Existential questioning”; and “Connection and understanding” which included the subtheme “Being heard and communicating”.

Discussion: This study explored the psychological well-being of people diagnosed with sarcoma, informal carers, and perceptions from health professionals. These insights are currently being used to help inform the development and content of the well-being guide, providing targeted support and resources for people diagnosed with sarcoma and their informal carers.

Conclusion: This research will contribute to the development of a co-designed well-being guide for people diagnosed with sarcoma and their informal carers.

  1. Zimmermann FF, Burrell B, Jordan J. The acceptability and potential benefits of mindfulness-based interventions in improving psychological well-being for adults with advanced cancer: A systematic review. Complementary Therapies in Clinical Practice. 2018;30:68-78
  2. Braun V, Clarke V. Can I use TA? Should I use TA? Should I not use TA? Comparing reflexive thematic analysis and other pattern-based qualitative analytic approaches. Counselling and Psychotherapy Research. 2021;21(1):37-47