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

Georgia K B Halkett; Jenny Davies; Chloe Maxwell-Smith; Connor Farnell; Mandy Basson; Tania Rice-Brading; Mariana S Sousa; Janene Sproul; Helen M De Jong; Haryana M Dhillon; Joanna Elizabeth Fardell; Moira O'Connor

doi:10.3390/curroncol32120691

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

Journal article

Open access

Peer reviewed

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

Georgia K B Halkett, Jenny Davies, Chloe Maxwell-Smith, Connor Farnell, Mandy Basson, Tania Rice-Brading, Mariana S Sousa, Janene Sproul, Helen M De Jong, Haryana M Dhillon, …

Current oncology (Toronto), Vol.32(12), 691

2025

DOI: https://doi.org/10.3390/curroncol32120691

PMID: 41440219

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Abstract

Caregivers

Humans

Internet

Sarcoma - diagnosis

Sarcoma - psychology

Sarcoma - therapy

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.

Details

Title: Building Better Website Resources: What People Diagnosed with Sarcoma and Their Carers Want to Know
Authors/Creators: Georgia K B Halkett - Curtin University
Jenny Davies - Curtin University
Chloe Maxwell-Smith - Curtin University
Connor Farnell - Curtin University
Mandy Basson - The Abbie Basson Sarcoma Foundation Ltd. Sock it to Sarcoma!, Perth, WA 6906, Australia
Tania Rice-Brading - Cooper Rice-Brading Foundation, Sydney, NSW 2011, Australia
Mariana S Sousa - University of Technology Sydney
Janene Sproul - Murdoch University, School of Education
Helen M De Jong - South Metropolitan Health Service
Haryana M Dhillon - Cooperative Trials Group for Neuro-Oncology
Joanna Elizabeth Fardell - School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales, Sydney, NSW 2033, Australia
Moira O'Connor - Curtin University
Publication Details: Current oncology (Toronto), Vol.32(12), 691
Publisher: MDPI
Number of pages: 16
Grant note: N/A / Cancer Australia
Identifiers: 991005845959507891
Murdoch Affiliation: School of Education
Language: English
Resource Type: Journal article

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Collaboration types: Domestic collaboration
Citation topics: 1 Clinical & Life Sciences; 1.112 Palliative Care; 1.112.297 Cancer Survivors
Web Of Science research areas: Oncology
ESI research areas: Clinical Medicine