Chloe Yi Shing Lim1,2, Sharon He1,3, Joanne Shaw1,3, Haryana M Dhillon4,5,6. 1. School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, 2006, Australia. 2. Centre for Medical Psychology and Evidence-Based Decision-Making (CeMPED), School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, 2006, Australia. 3. Psycho-Oncology Co-Operative Research Group (PoCoG), School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, 2006, Australia. 4. School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, 2006, Australia. haryana.dhillon@sydney.edu.au. 5. Centre for Medical Psychology and Evidence-Based Decision-Making (CeMPED), School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, 2006, Australia. haryana.dhillon@sydney.edu.au. 6. Psycho-Oncology Co-Operative Research Group (PoCoG), School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, 2006, Australia. haryana.dhillon@sydney.edu.au.
Abstract
PURPOSE: To understand the impact of cancer survivors accessing a standard factsheet regarding cancer-related cognitive impairment (CRCI), publicly available to the Australian public via Cancer Council Australia's websites. METHODS: Twenty-three cancer survivors completed a questionnaire assessing pre-factsheet knowledge of CRCI. Semi-structured interviews were conducted to explore participants' experiences of CRCI and perceptions of the factsheet. Interviews were analysed via thematic analysis using a framework approach. Finally, participants completed another questionnaire assessing post-factsheet change in knowledge of CRCI. RESULTS: Pre- and post-factsheet questionnaire change scores indicated increased knowledge and greater confidence about CRCI. Interview data resulted in five themes: generally positive perceptions of the factsheet's layout and wording; survivors, regardless of treatments received, experienced CRCI symptoms, with some having strong negative emotional responses to their symptoms; perceptions of the factsheet's strategies to manage CRCI ranged from relevant and useful, to impractical or unrealistic if symptoms were too severe; interactions with healthcare system influenced survivors' perceptions of help-seeking, with negative healthcare experiences a major barrier; and generally positive impacts of the factsheet, with survivors praising the factsheet's ability to validate the CRCI experience, increase CRCI knowledge, influence health beliefs, and prompt help-seeking. CONCLUSION: The factsheet presentation and wording were acceptable to participants. Its ability to normalise and raise awareness for CRCI validated participants' symptoms. The factsheet's potential as a first-line intervention in a stepped-care approach was identified, with participants finding the suggested self-management strategies practical. The factsheet may overcome barriers to self-reporting by encouraging patients to talk with HCPs about CRCI.
PURPOSE: To understand the impact of cancer survivors accessing a standard factsheet regarding cancer-related cognitive impairment (CRCI), publicly available to the Australian public via Cancer Council Australia's websites. METHODS: Twenty-three cancer survivors completed a questionnaire assessing pre-factsheet knowledge of CRCI. Semi-structured interviews were conducted to explore participants' experiences of CRCI and perceptions of the factsheet. Interviews were analysed via thematic analysis using a framework approach. Finally, participants completed another questionnaire assessing post-factsheet change in knowledge of CRCI. RESULTS: Pre- and post-factsheet questionnaire change scores indicated increased knowledge and greater confidence about CRCI. Interview data resulted in five themes: generally positive perceptions of the factsheet's layout and wording; survivors, regardless of treatments received, experienced CRCI symptoms, with some having strong negative emotional responses to their symptoms; perceptions of the factsheet's strategies to manage CRCI ranged from relevant and useful, to impractical or unrealistic if symptoms were too severe; interactions with healthcare system influenced survivors' perceptions of help-seeking, with negative healthcare experiences a major barrier; and generally positive impacts of the factsheet, with survivors praising the factsheet's ability to validate the CRCI experience, increase CRCI knowledge, influence health beliefs, and prompt help-seeking. CONCLUSION: The factsheet presentation and wording were acceptable to participants. Its ability to normalise and raise awareness for CRCI validated participants' symptoms. The factsheet's potential as a first-line intervention in a stepped-care approach was identified, with participants finding the suggested self-management strategies practical. The factsheet may overcome barriers to self-reporting by encouraging patients to talk with HCPs about CRCI.
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