Bibliotherapy Program to Improve Emotional Wellbeing During Cancer Treatment
Imagine you’re reading and you reach the end of a paragraph but can’t remember how it started! That’s pretty common with cancer-related cognitive impairment (CRCI). Reading is known to improve wellbeing and bibliotherapy can help with a range of mild to moderate mental health conditions. Fiction, in particular, could offer escapism from the distress of cancer diagnosis and treatment, but CRCI can make reading for ourselves difficult or impossible.
Little research has evaluated bibliotherapy in people undergoing cancer treatment. So how can we restore the health benefits of reading to this population? This innovative psychosocial program utilises listening and social connection and was developed from the researcher’s own experience as a librarian and cancer survivor, and the experiences of her family and community.
This is a mixed methods exploratory study using an experimental pre/post design through an advocacy/participatory worldview. Participant-supplied reading and viewing details supplied at enrolment informed the choice of reading material, which was tailored to each participant. The intervention was one-on-one, weekly for six weeks, conducted at participants’ homes, local libraries or via Zoom for rural and interstate participants. Outcome measures were standard wellbeing measures: Depression, Anxiety and Stress Scale (short form – DASS-21) and the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS) assessed pre/post-intervention; and qualitative interviews with participants and family members. Thirty-eight participants enrolled in the program – one died mid-way through, one was unable to complete the post-intervention measures and one withdrew due to increasing ill-health and hospitalisations – so data was collected and analysed for 35 participants. Impact on practice Results indicate the value of the program to both people undergoing cancer treatment and their families. The intervention had statistical significance for reduced stress, anxiety and depression as measured by the DASS-21, and increased wellbeing as measured by the WEMWBS. Interviews with participants and family members revealed 100% found the experience positive. Key wellbeing themes were relaxation, mood lift, increased self-efficacy, ‘time out’ and feelings of warmth/special/treat. The value of distraction/escapism was huge, with benefits to mood, pain relief and relief from nausea.
Human interaction and program personalisation were highly valued: the sense of connection with the reader was important, as was the choice of reading material. Discussion Participants reported the read-aloud program led to improvements in mood and experiences of pleasure. Future directions for the program could include implementation via out-patient and community integrative oncology services and inpatient oncology settings. It is also eminently suitable for palliative settings. Implementation could involve partnerships between libraries and these health care providers. In the interim, raising awareness within the LIS community of the reading (and other) difficulties experienced by people affected by CRCI may help library staff when assisting people undergoing cancer treatment to access library services and appropriate reading material.
This presentation builds on the preliminary article recently published in JALIA: ‘Psycho-oncology Bibliotherapy Program for Improving the Emotional Wellbeing of People Undergoing Cancer Treatment: Literature Review and Preliminary Findings’ (https://www.tandfonline.com/doi/full/10.1080/24750158.2023.2231231 )
PhD Candidate, University of South Australia
Elizabeth Wells is a PhD candidate with the University of South Australia. She left working in libraries in central Victoria to come to South Australia and undertake research around restoring the therapeutic benefits of reading to people undergoing cancer treatment. She holds a BSc in Computer Science and History & Philosophy of Science from The University of Melbourne, a Graduate Diploma of Education (Secondary) from LaTrobe University, a Graduate Diploma and Master of Library and Information Management from the University of South Australia. Her main area of interest is reading for wellbeing, particularly for people affected by cancer and people in palliative care. She is also passionate about the role of libraries in our communities and pre-literacy and literacy programs.
Elizabeth can be reached at email@example.com