Poster Presentation 2025 National Cancer Survivorship Conference

Identifying psychological well-being needs in people diagnosed with sarcoma, their carers, and health professionals: A qualitative study (#151)

William Lorimer 1 , Moira O'Connor 2 , Ursula Sansom-Daly 3 , Mandy Basson 4 , Erinna Ford 5 , 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 , Perth, Western Australia, Australia
  3. School of Women's and Children's Health, University of New South Wales (UNSW), Sydney , New South Wales, Australia
  4. Sock it to Sarcoma!, Perth, Western Australia, Australia
  5. Ninox Cancer Support Crew, Perth, Western Australia, Australia

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 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 reflexive thematic analysis, guided by Braun and Clarke’s(2), was used to identify key themes. The analysis followed Braun and Clarke’s six-step process: familiarisation of data, generation of codes, combining codes into themes, reviewing themes, determining the significance of themes, and reporting of findings.

Preliminary Results: To date, 20 interviews have been conducted with people diagnosed with sarcoma (N = 9), informal carers (N = 6), and health professionals (N = 5). Preliminary themes and concepts include “Emotional roller-coaster”, “I’ll be there for you”, “Helter-skelter”, and “Getting support from the start”.   

Expected Outcomes: The study will uncover insights into the psychological well-being needs of people diagnosed with sarcoma, their informal carers, and health professionals. These findings will assist in developing a sarcoma 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.

  1. 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. 2. Braun, V., & Clarke, V. (2021). 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, 21(1), 37-47. https://doi.org/https://doi.org/10.1002/capr.12360