Research
After discovering the benefits of reading have been shown to specifically include improvements in depression, anxiety and a range of other mental health conditions, as well as chronic pain and loneliness, I decided this was an area worth pursuing, and so I researched why the ability to read can often be compromised during (and sometimes after) cancer treatment.
Chemo fog, chemo brain, cancer fog – call it what you will – we call it cancer-related cognitive impairment (CRCI) and it’s real but it’s under-acknowledged. It occurs in about half of all people affected by cancer, but varies according to the cancer and treatment combination e.g. about 75% of people affected by breast cancer undergoing chemo are likely to get CRCI[1]. It can even start prior to treatment, although treatment worsens it[2]. People suffering CRCI are likely to struggle with concentration and processing, which in real life situations can mean trouble reading, driving or navigating, difficulty the right word during a conversation, or keeping up with conversations. People can also struggle with organising, motivation, multi-tasking, feeling confused, forgetting names, dates and things you’d normally remember.
What is happening in the brain to cause all this? Research has been able to demonstrate some physical changes that can occur to the brain as a result of treatments, with chemotherapy being the worst. Although the complex networks of the brain are impacted, we also know it can principally affect the frontal areas of the brain[3-6] which are important for expressive language and for managing higher level executive functions (like organising, planning and motivation), also memory and attention, which are needed for reading to oneself BUT listening uses the temporal lobes in the brain (i.e. far less impacted by CRCI). So, could the therapeutic benefits of reading be restored by listening rather than reading to oneself?
Based on what I discovered about CRCI and it impact on reading, I designed and piloted a personalised read-aloud program for people undergoing (or within a year of) cancer treatment. Reading material was matched to each person, and the warmth of human presence was used rather than asking people to try and operate audio book technology in the midst of their cancer fog. See the section WHY READING ALOUD? for a discussion of reading aloud versus audiobooks for people with CRCI. I read to people weekly, for six weeks, at various locations, including in their homes and over Zoom for people who lived in regional, rural and interstate areas.
This program is for everyone. About half of the people who participated had never been regular readers, while most of the others were lapsed readers (due to CRCI, fatigue or COVID-19-realted issues).
What was read?
Short stories – most genres (both contemporary and timeless)
Aussie yarns
Narrative non-fiction
Some poetry (including illustrated)
Quality children’s literature
Stand-alone chapters from longer books (e.g. James Herriot’s books, Michael Caine’s autobiography)
[see READING LIST for full details]
I used standard wellbeing measures, which participants completed before and after the six-week program, and I conducted interviews with participants and family members at the conclusion. Find links to articles below if you would like more information about how the study was conducted.
What was discovered?
The wellbeing measures showed reduced stress, anxiety and depression, and increased wellbeing. Some key wellbeing themes from the qualitative component of the study were relaxation, mood lift and increased self-efficacy. Distraction and escapism relieved pain and nausea. The personalisation of the program was important to people. It provided comfort and respite for loved ones too. [See my findings article for more details]
Some articles about the research –
Wells, E., Gunn, K., Velasquez, D., Kaeding, J., & Hutchinson, A. A bibliotherapy intervention to improve emotional wellbeing during cancer treatment: A pilot study. Journal of Psychosocial Oncology Research and Practice. https://journals.lww.com/jporp/fulltext/2025/01000/a_bibliotherapy_intervention_to_improve_emotional.1.aspx
Wells, E., Velasquez, D., Hutchinson, A., & Gunn, K. (2023). Psycho-oncology bibliotherapy program for improving the emotional wellbeing of people undergoing cancer treatment: Literature review and preliminary findings. Journal of the Australian Library and Information Association. https://www.tandfonline.com/doi/full/10.1080/24750158.2023.2231231
Wells, E. (2023, November 29). ‘I can see the characters’: How reading aloud to patients can break through ‘cancer fog’. The Conversation. https://theconversation.com/i-can-see-the-characters-how-reading-aloud-to-patients-can-break-through-cancer-fog-211274
As at the time of my research and constructing this website, I could find no other research investigating a tailored read-aloud delivery of bibliotherapy for people undergoing cancer treatment.
Some helpful websites about reading for improving mental health, decreasing loneliness, increasing self-confidence, and so many more benefits –
The Reading Agency (UK) – https://readingagency.org.uk/
The Reader (UK) – https://www.thereader.org.uk/
Shared Reading NSW (AUST)- https://www.lifetheuniverseandstories.org.au/
The Reading Revolution (NZ) – https://thereadingrevolution.org/
People & Stories/Gente y Cuentos(USA) – https://www.peopleandstories.org/
Future research and grant applications –
Brighter with Books project, which builds on this research to co-design a program for children with cancer. This is a collaborative project between University of South Australia, Flinders University, Women’s and Children’s Hospital, and Hospital School South Australia. This project is thanks to a generous grant from the Channel 7 Children’s Research Foundation. See https://www.crf.org.au/brighter-with-books-co-designing-a-reading-intervention-to-improve-emotional-wellbeing-in-children-with-cancer/
Internationally, the concept of listening rather than struggling to read to oneself when affected by cancer fog has been taken up and a grant application is in progress – which is very exciting!
Reading for Wellbeing is a project close to my heart, because I have seen the difference it can make – the way someone’s day can turn from distress to laughter simply by reading stories together. I will be seeking funding and/or partnerships to help implement the program in cancer centres, hospices and community palliative care settings.
References
[1] Brown, C. G. (2015). A guide to oncology symptom management (2nd ed.). Oncology Nursing Society.
[2] Winocur, G., Berman, H., Nguyen, M., Binns, M. A., Henkelman, M., Van Eede, M., Piquette-Miller, M., Sekeres, M. J., Wojtowicz, J. M., Yu, J., Zhang, H., & Tannock, I. F. (2018). Neurobiological mechanisms of chemotherapy-induced cognitive impairment in a transgenic model of breast cancer. Neuroscience, 369, 51-65. https://doi.org/10.1016/j.neuroscience.2017.10.048
[3] Ahles, T. A., & Root, J. C. (2018). Cognitive effects of cancer and cancer treatments. Annual Review of Clinical Psychology, 14(1), 425-451. https://doi.org/10.1146/annurev-clinpsy-050817-084903
[4] Conroy, S. K., McDonald, B. C., Smith, D. J., Moser, L. R., West, J. D., Kamendulis, L. M., Klaunig, J. E., Champion, V. L., Unverzagt, F. W., & Saykin, A. J. (2013). Alterations in brain structure and function in breast cancer survivors: Effect of post-chemotherapy interval and relation to oxidative DNA damage. Breast Cancer Research and Treatment, 137(2), 493-502. https://doi.org/10.1007/s10549-012-2385-x
[5] Miao, H., Li, J., Hu, S., He, X., Partridge, S. C., Ren, J., Bian, Y., Yu, Y., & Qiu, B. (2016). Long-term cognitive impairment of breast cancer patients after chemotherapy: A functional MRI study. European Journal of Radiology, 85(6), 1053-1057. https://doi.org/10.1016/j.ejrad.2016.03.011
[6] Myers, J. (2015). Cognitive impairment. In C. G. Brown (Ed.), A guide to oncology symptom management (pp. 203-237). Oncology Nursing Society.