Psycho-oncology Bibliotherapy Program for Improving the Emotional Wellbeing of People Undergoing Cancer Treatment: Literature Review and Preliminary Findings

ABSTRACT

Reading has long been acknowledged as beneficial to physical and mental health. Many studies confirm bibliotherapy, or reading for therapy, has a meaningful place in the treatment toolkit for mild to moderate mental health conditions, chronic pain and loneliness. However, the joy and health benefits of reading can be denied to those undergoing cancer treatment because reading can become a frustrating, demanding activity due to cancer-related cognitive impairment. Fortunately, listening to a story provides a way to share stories with those suffering from this common side-effect. Integrative oncology employs a number of complementary therapies, however there is also a potential place for bibliotherapy. Utilising the warmth of real-time, in-person reading aloud, this research explores the extent to which a read-aloud program is associated with improvements in the emotional wellbeing of people undergoing cancer treatment. Bibliotherapy comes in many guises and fiction was utilised in this study. A potential outcome of this study may be to help make a case for the use of bibliotherapy as a psychosocial intervention for people affected by cancer, in particular under the guise of bibliotherapy via reading aloud. This project was presented at the 2022 RAILS conference and this paper describes the background and methodology.

KEYWORDS:

• Bibliotherapy
• psycho-oncology
• integrative oncology
• read-aloud
• wellbeing
• psychosocial

Introduction

Treatment outcomes for many types of cancer are improving. People live far longer after diagnosis than they ever used to, however, the psychosocial fallout from a cancer journey leaves a strain on those affected, perhaps even on society as a whole (Institute of Medicine, 2008). Opportunities to improve quality of life need to be grasped, and people affected by cancer are doing so with therapies like music, art, touch and mindfulness, but bibliotherapy, despite having a bank of evidence to support its usefulness, remains excluded from many integrative oncology regimes. Any therapies that have the potential to decrease the physical or emotional burden of cancer care should be carefully evaluated, and if found to be beneficial and feasible, embraced. Palliative care routines demonstrate that not all treatment is undertaken with a curative intent, and some therapies, such as massage therapy, yoga and dance therapy not only serve a physical purpose, but also improve emotional wellbeing, that is, they make people feel better (Falkensteiner et al., 2011; Selman et al., 2012). The intent of a reading program is to help people going through cancer treatments to improve their emotional wellbeing; for when you feel better, you are better able to cope with whatever else is happening in your life (Folkman & Moskowitz, 2000; Fredrickson, 1998; Fredrickson et al., 2003; Lazarus et al., 1980).

Background

During the researcher’s years working in public libraries in central Victoria, she noticed a pattern of regular readers losing their ability to read for pleasure while undergoing cancer treatment. This research is a PhD project investigating this phenomenon, which is a common manifestation of cancer-related cognitive impairment (CRCI) (Myers, 2015). Sufferers of this impairment describe it in a variety of ways, but its impacts are frequently frustrating and often upsetting. The area of the brain most affected by cancer treatment is thought to be the frontal lobe (Ahles & Root, 2018; Conroy et al., 2013; Miao et al., 2016; Myers, 2015), responsible for many attention, processing and organisational functions, but it is also the area used when reading (visually) to ourselves (Funahashi, 2017).

Reading is good for us. Bibliotherapy has been shown to help with a range of mild to moderate mental health conditions (Gusmao & de Souza, 2020; Macdonald et al., 2013; Reeves & Stace, 2005; Taleban et al., 2016). Fiction may offer escapism from the distress of cancer diagnosis and treatment, but CRCI can rob those afflicted of the ability to effectively read for themselves. How can the health benefits of reading be restored to people affected by CRCI? This research tackles that question by exploring the effect of a read-aloud program, that is, cancer patients listening to stories being read to them, in real time, as a possible mechanism for improving emotional wellbeing.

Research Aim

This research explores a read-aloud program, where listening to stories is the only expectation, as a possible method for delivering bibliotherapy aimed at improving the emotional wellbeing of cancer patients undergoing treatment.

Review of Relevant Literature

Benefits of Reading

Physical and mental health benefits of reading are well-established. The rate of age-related memory deterioration is reduced by 32.3% (Wilson et al., 2013, p. 316) by reading. Reading can produce higher levels of cognitive reserve (CR) which provides some physical protection for the brain from dementia (Spitznagel & Tremont, 2005) and the cognitive impacts of lead exposure (Bleecker et al., 2007). Increased brain connectivity is an added bonus of reading (Berns et al., 2013). Furthermore, reading fiction regularly is associated with increased social skills (Mar et al., 2006) and empathy (Kidd & Castano, 2013). Irrespective of socio-economic status and gender, reading books has been shown to boost longevity (Bavishi et al., 2016). Yoga is widely known for its stress-reducing properties, yet half an hour reading has been shown to have the same effect on stress levels (Rizzolo et al., 2011). Reading is an accessible and cost-effective tool in a variety of situations to improve wellbeing. It has been shown to be effective in combatting loneliness (Hilhorst et al., 2018; Rane-Szostak & Herth, 1995), which is often referred to as a new pandemic with its links to increased depression, dementia and decreased longevity.

In a review of the latest studies of non-literacy impacts of reading for enjoyment commissioned by The Reading Agency (UK), the results were analysed in two population-based sub-groups: adults with health needs and the general adult population. Many positive effects were experienced by both groups, including improved relaxation, expanded knowledge, feelings of escapism and simple joy; additionally, depression and dementia symptoms were reduced in the group of adults with health needs (BOP Consulting, 2015). Another UK agency, The Reader, recently surveyed adult readers, and found that 77% of them said that reading made them feel ‘relaxed and happy’, while 74% of them recognised that their reading positively affects their mental health and wellbeing (Jeynes, 2023, para. 3).

In a short film, recently released for The Reading Agency’s 20th birthday celebrations, presenters draw on research previously carried out by the organisation to sum up the benefits of reading:

We change lives through the proven power of reading … real evidence of its impact over a long period of time … reading is what connects us … reading opens the doors to whole new worlds … we know that reading, particularly reading for pleasure, has an impact on people’s life outcomes (The Reading Agency, 2022).

The Special Role of Fiction

The healing nature of reading has been alluded to by writers themselves: Shakespeare sang the praises of reading in Titus Andronicus (Act IV, Sc1, 1.34), ‘Come, and take choice of all my library, And so beguile thy sorrow’; D.H. Lawrence, ‘one sheds one’s sickness in books’ (from a letter he wrote in 1913; as cited in Morrison, 2008, para. 10); Lloyd Alexander, ‘Keep reading. It’s one of the most marvellous adventures that anyone can have’ (Alexander, n.d., para. 48); Blake Morrison, ‘great therapeutic power of literature – it doesn't just echo our own experience … it takes us places we hadn't imagined but which, once seen, we never forget’ (Morrison, 2008, para. 23); ‘I could just transport myself away from my circumstances and dive into this incredible mystery’ (Alex Wheatle in The Reading Agency, 2022) and Raymond Tallis extols the enjoyable escapism of reading fiction, ‘the ability to distance one’s self from one’s own circumstances’ (Tallis, as cited in Morrison, 2008, para. 16). British Author Neil Gaiman (2013, para. 21–22) writes eloquently about the potential role of fiction in improving emotional wellbeing:

I’d like to say a few words about escapism. I hear the term bandied about as if it’s a bad thing. As if ‘escapist’ fiction is a cheap opiate used by the muddled and the foolish and the deluded, and the only fiction that is worthy, for adults or for children, is mimetic fiction, mirroring the worst of the world the reader finds herself in. If you were trapped in an impossible situation, in an unpleasant place, with people who meant you ill, and someone offered you a temporary escape, why wouldn’t you take it? And escapist fiction is just that: fiction that opens a door, shows the sunlight outside, gives you a place to go where you are in control, are with people you want to be with (and books are real places, make no mistake about that); and more importantly, during your escape, books can also give you knowledge about the world and your predicament, give you weapons, give you armour: real things you can take back into your prison.

Some librarians see their core roles as providers of information, while others suggest that fiction is at the heart of regular library patrons. Librarian David Wright describes this persuasively:

It is almost impossible to overstate how important Story is to people, and to libraries. Story is what makes us human. We think in terms of narrative: it is how we make sense of our lives and our world. Hardwired for creating and interpreting stories, our dreaming minds spin tales even in our sleep. Despite the library profession’s habitual (over) emphasis on Information, it is Story in its myriad forms and formats that keeps our doors open and the lights on (Wright, 2010, p. 131,132).

Storytelling

As long as there have been people, there appears to have been attempts to tell each other stories. We can see this in paintings on cave walls, hieroglyphs in pyramids and scrawls on parchments. People naturally gravitate to stories and the need to communicate them is a natural consequence of the human condition. Around the globe, cultural storytelling traditions abound. Storytelling can be a shared activity experienced as part of a group, or a personal one-on-one experience. Prior to the late seventeenth century, texts were not routinely read individually, silently, but rather read aloud (Jajdelska, 2007). One can imagine the connection and socialising that would have resulted, much in the same way as men’s sheds and sewing circles, but such gatherings have an added dimension when the focus is on a story (Mawer, as cited in Morrison, 2008).

Storytelling is an art. A skilled storyteller is able to get his or her audience to invest in the storyline and characters. Thinking about storytelling today, one generally thinks either of cultural stories, or contemporary actors and poets who appear performance-like at festivals and library events. However, let us also remember all those people who read to their children from the time they were very young (some even start prior to birth). We routinely acknowledge the pre-literacy and literacy skills that children gain from this experience, but all parents who undertake this regular activity know this reading time is more than an educational time. This quiet time spent together, focussed on a shared story, is a time of comfort and connection. A beautiful illustration of this was the young father who unexpectedly found himself raising his daughter alone, and he searched for a way to reconnect when he felt her drifting away from him (CBS Inc., 2012). When she was ten years old, they made a pact to read at least a chapter of a book together, every night before midnight, a tradition they continued until the day the daughter left for college. This is a poignant example of not just our quest for companionship, but our thirst for shared stories. The time together reading was intrinsic to their reconnection and strengthening of their father-daughter bond. Reflecting on this time, they agree ‘you are never too old to be read to’ (CBS Inc., 2012). The literature is peppered with the concept of sharing a story read aloud to connect:

When someone is reading aloud to you, you feel a bit like you’re given a gift of their time, of their attention, of their voice … We see this in the reading to children, that sense of closeness and bonding, but I don’t think we talk about it as much with adults (Duncan quoted in Hardach, 2020).

Authors and poets point to the use of voice for ingesting the written word. Author Margaret Atwood bemoans our modern-day practice of silent reading and champions a return to customarily reading aloud: ‘every written story is … a score for voice … I’m not arguing for the abolition of the eye, merely for the reinstatement of the voice, and for an appreciation of the way it carries the listener along with it’ (Atwood, 1989, p. 71). Similarly, poet William Sieghart, creator of compilations of poetic prescriptions, or poetry pharmacies as he refers to them, advises ‘it’s the reading aloud that will allow you to properly hear it; that will make you understand the rhythms, cadences and musicality of the words and phrases’ (Sieghart, 2019, p. xviii). Stories have the power to transport both readers and listeners to other times and places, limited only by our imagination and an author’s skilfully crafted score. Storytelling, shared stories, this incarnation of human connection with its by-products of warmth and comfort, is a legitimate alternative to reading silently to oneself, and a concept that is indispensable to this study.

The term storytelling is an immense topic, the thorough exploration of which is beyond the scope of this study. Of most importance here is the approach to storytelling which is reading aloud to adults. Of interest are the half a dozen libraries we were able to find worldwide that run (or have run) read-aloud, or storytime, sessions for adults: including Melbourne (Australia), Adelaide (Australia), Christchurch (NZ), Seattle (USA), Winona (USA) and Vancouver (Canada), all running sessions for their general adult communities, while Memphis (USA) held sessions for adults with a disability. Research abounds showing the mental and physical health benefits of the individual reading of fiction, non-fiction and directed workbooks (see below). However, no research could be found for adult storytimes, that is, read-aloud programs facilitating the pleasure of listening to a story. Research regarding The Reader’s Shared Reading (SR) program was found as the closest associated research. It must be noted, however, that adult storytimes centre around simply listening to a story and choosing to comment at the end if a listener feels moved to do so, whereas the SR program is a facilitated group of readers/listeners of literary fiction and poetry where the reading is paused regularly to check group members’ understanding and to allow them the opportunity to share their insights. Multiple studies have been conducted about the SR program. One such study comes from The Reader’s 700 SR groups, consisting of 11,930 readers, with 93% of them declaring the reading sessions make them ‘feel better’ (The Reader, 2021, Our readers told us section). Research like this has led The Reader to proclaim that they believe ‘literature’s unique power has the potential to connect individuals, help us feel better and to rebuild lost social bonds’ (The Reader, 2023). Participant feedback is also available for the adult storytimes that were held in Melbourne: all participants enjoyed the program, and about 72% indicated the sessions resulted in an improvement to their wellbeing (Lang, 2017, p. 4).

Depending on whether a story has been individually read or heard, different parts of our brains (visual versus auditory cortex) are utilised to deliver messages to our semantic system (Davis, 2018; Moisala et al., 2015), which is invoked in either case (Davis, 2018; Deniz et al., 2019). This finding is useful for those who find reading difficult, as they may find it easier to instead listen to texts. Comprehension is the same for both input modes (Rogowsky et al., 2016). Anecdotally, it is commonly acknowledged that people with dyslexia who hear a story are likely to remember it for some considerable time, whereas they can struggle to read for themselves.

Reading aloud is an accepted delivery mode of bibliotherapy. At the height of COVID-19 lockdowns in Victoria, the bibliotherapeutic program produced by the State Library of Victoria (SLV) was a listening, rather than silent reading, program (McLaine, 2020b; State Library of Victoria (SLV), 2021). Their justification for this method was ‘poems and stories, read aloud, open a space for us to dwell quietly away from the noise outside’ (State Library of Victoria (SLV), 2021). As previously discussed, the SR model is also one of reading aloud – a previously unseen text is read aloud at sessions, in contrast to book clubs which expect members to have pre-read the chosen book as preparation for discussion at the meeting. Stories, book chapters and poems are all read aloud at the handful of adult storytimes in existence.

One should not underestimate the value of listening to stories in order to reclaim a love of reading. Interviews conducted for studies of The Reader’s programs revealed impaired concentration and depression as two indicators of individual reading being abandoned due to increasing difficulty; the loss felt by participants was expressed, as well as the value of restoring reading: ‘the return to reading was part of the sense of recovery, including the recovery within reading of more innocent or joyous experiences that seemed to have been irrevocably lost after trauma or breakdown’ (Davis et al., 2016, p. 45). The notion of listening to stories is focal to this research.

Stories, tales, narratives, yarns, fables and fairy tales – people love stories. People are ‘drawn to stories’ (Pehrsson & McMillen, 2005, p. 51), able to be absorbed in them and distracted from their troubles for a while. Despite technological advances that include a vast range of, and different delivery systems for, audiobooks, they cannot replace the face-to-face telling of stories; stories that still educate, restore and connect us ‘in a way nothing else can’ (Nelson & Sturm, 2018, p. 4444); ‘there’s something beautifully soothing about being read to’ (Freeman-Greene, 2011, para. 38). Reading aloud has been described as ‘breathing words’ by researchers from the University of Warwick (2016), who say that by producing the words, reading becomes a sensory experience and they liken it to being massaged with words.

Bibliotherapy – a Short History, Types of Bibliotherapy and Therapeutic Outcomes

Reading for health-giving benefits is the core of bibliotherapy. It is thought that bibliotherapy first started in ancient times. Ancient Egyptians and Greeks carved inscriptions that translate to healing for the soul above ancient library entrances. The literature repeatedly cites Aristotle and his ideas about reading for health benefits. The term bibliotherapy is from the Greek for book, ‘biblion’, and healing, ‘therapeia’. Combining the two words to form bibliotherapy is credited to Samuel Crothers, an American minister, over a century ago, in a 1916 article in The Atlantic Monthly, where he wrote about discovering a ‘bibliopathic institute’ run by his fictitious friend, Dr. Bagster, in the church vestry (Crothers, 1916, p. 291). Bagster reportedly told his friend,

During the last year I have been working up a system of Biblio-thera-peutics. I don't pay much attention to the purely literary or historical classifications. I don't care whether a book is ancient or modern, whether it is English or German, whether it is in prose or verse, whether it is a history or a collection of essays, whether it is romantic or realistic. I only ask, ‘What is its therapeutic value?’ … . A book may be a stimulant or a sedative or an irritant or a soporific … A book may be of the nature of a soothing syrup or it may be of the nature of a mustard plaster … Bibliotherapy is … a new science (Crothers, 1916, p. 292).

Freud is widely acknowledged as an early supporter of bibliotherapy; during sessions with patients, he utilised creative literature and he acknowledged storytellers as ‘valuable allies’ in psychotherapy (Freud, as cited in Pehrsson & McMillen, 2005, p. 1). During World War I, a collaboration between librarians and doctors resulted in the growth and maturation of bibliotherapy; it was regarded as a credible therapy at the time, both in hospitals and the front line (Haslam et al., 2018; McDaniel, 1956; University of London - School of Advanced Study, 2018). Between that time and today, bibliotherapy has been used in heterogeneous ways to help both adults and children, in schools, libraries, hospitals and in private practice. However, in the researcher’s experience (in a dozen Australian public libraries, public library networks and conferences), bibliotherapy is unfamiliar, often unheard-of in Australia or other countries around the world, except in the UK. The Encyclopedia of Library and Information Sciences (McDonald & Levine-Clark, 2018) is considered an authoritative and up-to-date LIS reference, yet it does not even contain an entry for bibliotherapy. A few bibliotherapists came to light with the lockdowns and distress of the COVID-19 pandemic in 2020. Some programs were freely available, such as State Library of Victoria’s program that attempted to relieve some of the anxiety and isolation of extended lockdowns (State Library of Victoria (SLV), 2021).

The literature reveals bibliotherapy to be an umbrella term, encompassing diverse delivery methods and descriptions, most commonly including prescriptive or clinical bibliotherapy (workbooks and/or self-help books used in clinical settings to augment therapists’ information), books on prescription (health-professional-endorsed self-help books acquired via doctor prescription or self-referral) and affective or creative bibliotherapy (employing fiction and/or poetry, often in group settings). Some literature described developmental or community-based bibliotherapy: using self-help books, frequently in group settings, with a teacher, librarian or other non-health-professional facilitating (Cook et al., 2006, p. 92; De Vries et al., 2017, p. 52; Pehrsson & McMillen, 2005; Sevinç, 2019). Also using self-help books, cognitive behavioural bibliotherapy (Axelsson et al., 2018) may or may not have a therapist present, guiding the process of reading, interpreting and trying to put the ideas presented into effect; with a therapist present, this would be part of the aforementioned clinical bibliotherapy category, and without it could be classified as books on prescription. Other bibliotherapeutic terms in the literature include client-developed bibliotherapy (requires participants to write responses after reading) (De Vries et al., 2017, p. 52), and cognitive bibliotherapy, which utilises literature that explicitly mentions the underlying issues (such as sadness or fear) of characters in similar circumstances to the participant, and where the characters reach effective outcomes (Betzalel & Shechtman, 2010). Bibliotherapy is a diverse, practical intervention, the health and wellbeing benefits of which will be described below.

Caroline Shrodes’ ground-breaking research in the 1940s provided a detailed theoretical framework for the emotional benefits of bibliotherapy. In her 1949 dissertation, Bibliotherapy: A Theoretical and Clinical-Experimental Study, she acknowledged the role of both didactic and imaginative literature in a bibliotherapy context; however, she subsequently examined the role of imaginative literature in more depth and concluded that it is more effective for creating change because it tends to induce an emotional response in readers (Gillespie Hendricks et al., 1999, p. 120). Shrodes (1955) concluded that therapeutic change occurs as a result of the reader’s ‘vicarious experience’ with literature which occurs via the reader identifying with a particular character or situation described, followed by catharsis and insight. More recent evidence that supports this exists in a study of adolescent girls taking part in an obesity-treatment program, where a novel about a comparably overweight girl was read by those in the intervention group (Bravender et al., 2010). In the novel, the character develops confidence to change her behaviour and thereby improve her health. Compared to the control group, participants in the intervention group had dramatically reduced body mass indexes (BMIs) at the end of the study (Bravender et al., 2010). The idea that the brain responds to read experiences as though they were actual experiences is supported by functional magnetic resonance imaging (fMRI) scans (Speer et al., 2009). Variations and lack of consensus around terminology and delivery methods can make literature about what bibliotherapy actually is appear confusing (Jack & Ronan, 2008). However, regardless of delivery mode and attempts at categorisation, the concept of reading to feel better – therapy using books – is central to all forms of bibliotherapy.

Over the last two decades, abundant reviews have shown the benefits of bibliotherapy for a range of common mental health conditions. Most commonly studied are mild to moderate stress, anxiety and depression (Gusmao & de Souza, 2020; Macdonald et al., 2013; Reeves & Stace, 2005; Taleban et al., 2016); in addition to loneliness, grief, trauma, quality of life (QoL), self-esteem and overall emotional wellbeing (Billington, Longden, et al., 2016; Davis et al., 2016; Helfgott, 2017; Malyn et al., 2020). The benefits of bibliotherapy extend to improving the self-management ability of frail older people (Frieswijk et al., 2006), overcoming food cravings associated with obesity (Rodríguez-Martín et al., 2013), and improving both the wellbeing and self-worth of incarcerated women (Billington, Longden, et al., 2016). The UK seems to lead the world in applied bibliotherapy, and their Books on Prescription program produces a pamphlet intended for GPs, about referring patients to the program for help with many common mental health disorders, including depression, anxiety disorders (including health anxiety), stress, worry, sleep problems, eating disorders, self-esteem issues, Chronic Fatigue Syndrome, Obsessive-Compulsive Disorder, Body Dysmorphic Disorder and chronic pain, and it contains a case study detailing the success of bibliotherapy in a pain clinic trial (National Association of Primary Care (NAPC), 2017). Over a decade ago, the Welsh implemented their highly successful, national ‘Book Prescription Scheme’, designed to use CBT-based self-help books to tackle depression, anxiety, stress, panic, obsessive-compulsive problems, eating disorders, anger and low self-esteem (NHS Wales, n.d.). The scheme was trialled in Cardiff, where the first six months of the trial saw 1600 book prescriptions filled (Frude, 2003). All users of the scheme found the prescribed books beneficial for their mental health (Grundy, 2005).

Qualitative evidence of the benefits of reading for wellbeing is cited regularly in the literature, but recently more quantitative evidence can be found. Examples of this are two recent studies of bibliotherapy for chronic pain relief, which collected pain and psychological wellbeing scores (Billington, Humphreys, et al., 2016; Veillette et al., 2019) and pain-related disability and acceptance, depression and psychological inflexibility scores (Veillette et al., 2019). However, the very nature of disease and the ongoing search for the easing of symptoms, gives us some powerful quotes concerning the role of reading and chronic pain:

Reading pushes the pain away into a place where it no longer seems important. No matter how ill you are, there's a world inside books which you can enter and explore, and where you focus on something other than your own problems (Morrison, 2008, para. 5).

I read constantly to escape from my aching knee, from my room, from the real world … . While previous treatments—painkillers, physiotherapy, acupuncture, hyperbaric oxygen therapy—have failed, the self-prescribed reading cure works … books have been my only medicine (Sautter, 2010, para. 2).

When faced with chronic pain, we see reading for solace and escapism as common themes; the same themes that came to prominence during the distress accompanying the COVID-19 pandemic and lockdowns (Hepworth, 2020; Stip et al., 2020). Given distress generally accompanies a cancer diagnosis and treatment (refer further into this article for more details), finding additional evidence that supports reading for reducing distress, is especially relevant.

Bibliotherapy has strong proponents in Wales (seen for instance via their Book Prescription Scheme and Literature Wales) and England (seen via the organisations The Reading Agency, The Reader and ReLit) and evidence of bibliotherapy practice and organisations appear in some other countries internationally, yet despite the best efforts of some Australian proponents about a decade ago, bibliotherapy appears to remain little-known here. A collaboration between VicHealth, the State Library of Victoria (SLV) and Public Libraries Victoria Network (PLVN) launched the ‘Book Well’ pilot program in Victoria in 2010, based on The Reader’s Shared Reading model (McLaine, 2010a, 2010b). Staff came from the UK to train 20 people (mostly from a variety of library settings) but difficulties obtaining and sustaining delivery partnerships hindered the rollout and continuation of the program by those newly-trained staff who attempted to implement it (McLaine, 2021), as did funding difficulties (Freeman-Greene, 2011). In 2014, Shared Reading NSW was formed as an outreach targeting social isolation, and remains a small part-time organisation (C. Smith, personal communication, October 19, 2021). In 2016, the Central West Libraries of NSW launched a pilot of a Books on Prescription scheme (modelled on The Reading Agency’s scheme) but a lack of funding and support from health care providers led to it being discontinued (Fitzpatrick et al., 2018). In 2020, during the extended COVID-19 lockdowns in Victoria, SLV and then-PhD-candidate, Susan McLaine, partnered for two recorded series aimed at relieving some of the widespread fear and uncertainty (McLaine, 2020a). McLaine also conducts ongoing bibliotherapeutic work with prisoners (Rosenbaum, 2015). Hopefully, Australia is ready to embrace some bibliotherapeutic initiatives.

Examining the literature, the difference between reading and bibliotherapy for improved wellbeing is unclear. During early readings for this review, it appeared that the term reading is used when the activity is self-directed, as opposed to bibliotherapy when a book or poem is read as the result of a specific suggestion or obtained via a recommended list. However, as the task of examining the literature continued, it became clear that the terms are often used synonymously. Worldwide, book clubs and the UK’s The Reader and The Reading Agency all applaud the benefits of reading, while the Welsh national policy of reading to improve mental health and the reading/listening undertaken for comfort and support during COVID-19 are all denoted as bibliotherapy in the literature. Irrespective of the terminology employed, countless examples of the benefits of reading (and bibliotherapy), independent of the setting and the method by which a book came to be in an individual’s possession, exist in the literature. No contraindications for using bibliotherapy were identified.

Therapeutic Outcomes Specific to Cancer Patients Undergoing Treatment

Psychosocial Effects of Cancer Diagnosis and Treatment

Cancer treatments can be exhausting, both physically and emotionally. In the cancer context, distress is the term usually used to describe poor emotional wellbeing, in preference to exact clinical expressions such as depression and anxiety, as it comprises many mood disorders without the stigma that mental health diagnostic names still carry and is meaningful for both lay people and oncologists (Carlson et al., 2012). While each experience of diagnosis and treatment is unique to the person facing them, and thus reactions are as individual as each person, up to 75% of people with a cancer diagnosis experience significant distress (Cardy et al., 2006, p. 13; Galway et al., 2012, p. 1). A recent study of women affected by breast cancer, revealed 30–60% endured ‘significant cancer-related distress’ but of those distressed patients, fewer than 30% received psychosocial care (Lally et al., 2020, p. 2163, 2164). Other studies have shown help for emotional distress is not offered to about half of all people diagnosed with cancer (Chapman, 2016). Distress is widely considered a common occurrence for both patients and carers, while age, gender and cancer site play a role for differing levels of distress (Linden et al., 2012; Zabora et al., 2001). An association exists between untreated distress and a reduction in Quality of Life (QoL), reduced treatment compliance (Dimatteo et al., 2000; Greer et al., 2008) and greater risk of dying (Pinquart & Duberstein, 2010; Satin et al., 2009).

Cancer-related Cognitive Impairment (CRCI)

Cancer fog, cancer brain, chemo fog and chemo brain are all commonly known terms for the condition cancer-related cognitive impairment (CRCI), also known as cancer-related cognitive dysfunction (CRCD) and chemotherapy-induced leukoencephalopathy. CRCI is reported regularly and affects more than half of cancer patients during (and frequently for a time after) treatment (chemotherapy, radiotherapy, targeted therapy, hormone therapy and immunotherapy) with the most impaired functions being attention, processing speed, memory and executive functions (Ahles & Root, 2018; Joly et al., 2015; Lange et al., 2019; Wefel et al., 2015). Although figures around the prevalence of CRCI vary according to different cancer and treatment types, the most frequent occurrence of CRCI was seen in a study of breast cancer patients receiving chemotherapy: 75% of this group suffered CRCI (Brown, 2015, p. 204). Although precise mechanisms for the root cause of CRCI remain unknown, recent studies suggest the body’s own response to tumour growth may be the cause, via an immune response that subsequently triggers an inflammatory response in the brain’s nervous system (Winocur et al., 2018) and possibly fatigue-induced brain changes (where the fatigue may stem from the same inflammatory response) (Menning et al., 2015) which is only made worse with cancer treatment (Winocur et al., 2018).

CRCI impacts people in a variety of ways. Difficulty with reading, navigating, driving, losing things, forgetting one’s train of thought part-way through a conversation and forgetting appointments are all typically reported day-to-day presentations of this impairment that cause considerable frustration (Myers, 2015). The emotional toll this can have on people is not surprising, manifesting as negative impacts on QoL, ability to self-care, self-confidence and workplace and relationship challenges (Ahles & Root, 2018; Lange & Joly, 2017; Mayo et al., 2016; Myers, 2012; Wefel et al., 2004). Becoming absorbed in a story offers some escape from this disorientation and burden, and it is hoped the effects will persist, at least for a while.

In the past, doctors refuted or down-played cancer patients’ claims of impaired cognitive function, including losing the ability to read, recall words and make decisions (Boyer, 2019). In recent times, however, studies have demonstrated that physical changes can occur to the brain as a direct result of cancer and its treatment, particularly chemotherapy, and these changes primarily occur in the frontal areas of the brain (Ahles & Root, 2018; Conroy et al., 2013; Miao et al., 2016; Myers, 2015), including grey matter volume reduction and white matter density reduction – seen in pre- and post-chemotherapy comparisons (Joly et al., 2015). Despite the occipital lobe, the area responsible for visual perception, being located at the rear of the brain, the prefrontal cortex is critical for visual memory (Funahashi, 2017), and is thus affected by these changes. Additionally, researchers studying the correlation between inflammatory markers and CRCI in chemotherapy patients, suggest a direct correlation between these markers and impaired visual memory (Williams et al., 2018). The temporal lobes, located on the sides of the brain, process auditory input before it is projected to a broad region of the prefrontal cortex for working memory processing, where disparate networks can be triggered, even shifted, according to attentional needs (Plakke & Romanski, 2014). This is important when considering silent reading versus listening as the temporal lobes are less impacted by CRCI than the prefrontal cortex and listening to stories may be more manageable than reading for people with cancer.

As previously stated, mental health benefits are a widely acknowledged consequence of reading. However, reading can become a frustrating, demanding activity when undergoing cancer treatment and experiencing CRCI. Losing this cherished habit or being unable to start the habit for those who discover its potential, can add to the distress experienced by people affected by cancer. Phil, a bowel cancer survivor, told staff at Cancer Council NSW:

My head would get foggy, you can’t concentrate. I’m an avid reader, I couldn’t read more than two or three paragraphs because ‘what did I just read?’ I had to go back and read it again. That was hard, so I kept on doing crossword puzzles and word puzzles or whatever to try and exercise my mind, of course, to just try and get the sharpness back (Cancer Council NSW, 2020, para. 15)

Phil’s experience of losing his ability to read for pleasure while undergoing cancer treatment is far from unique. A bibliotherapeutic program that allows participants the space and time to simply listen, in real-time, face-to-face with a competent reader, may restore the therapeutic benefits of reading within a warm environment and may lead to improved emotional wellbeing (in accordance with known reading benefits).

Bibliotherapy as a Holistic Cancer Treatment

The effects of bibliotherapy on the general population have been the subject of numerous studies, while its effects on groups with particular health issues are comparatively sparse. There are not many studies measuring the effectiveness of bibliotherapy in an adult cancer environment: only seven relevant studies were found. Five of those utilised bibliotherapy for didactic reasons (Angell et al., 2003; Körner et al., 2019; Krebber et al., 2016; Roberts et al., 2016; Semple et al., 2009): as a mode of Cognitive Behavioural Therapy (CBT) delivery, for teaching participants more about cancer, or about how to deal with the common side-effects of depression, anxiety and reduced ability to cope. Results of these studies were generally positive, and included participants reporting feeling emotionally supported (Angell et al., 2003), an increased sense of empowerment and QoL (Körner et al., 2019), decreased distress (Körner et al., 2019; Krebber et al., 2016), improved coping skills (Roberts et al., 2016) and reduced depression and anxiety alongside improved QoL, HRQoL (health-related QoL) and social functioning (Semple et al., 2009). Participants in one of those studies, by Roberts et al. (2016), reflected that the supplied workbook would have been better in audiobook format. This lends itself to the argument of listening rather than attempting to read to oneself when affected by CRCI. Only two of the seven studies used imaginative literature in their interventions – one used fiction (Hammer et al., 2017) while the other used poetry (Tegnér et al., 2009). Participants in the poetry intervention showed significantly reduced anxiety and anger (Tegnér et al., 2009). The study utilising fiction required participants to complete a walking program with audiobook listening and attend a supervised book club (Hammer et al., 2017), which is potentially too demanding for this population. This study had a high dropout rate and participants reported finding the chosen books too depressing. However, the study reinforced the concept of fiction as an immersive experience, which was viewed as both a positive and negative experience by participants (given the nature of the prescribed reading) (Hammer et al., 2017). Six of these seven studies used psychometric tests to show the usefulness of the interventions for improving patient psychosocial wellbeing. Collectively, these studies measured distress, QoL, HRQoL, sense of empowerment, mental health, psychological wellbeing, changes in psychosocial dysfunction, emotional resilience and psychosocial functioning (mood disturbance, coping ability and posttraumatic stress disorder). Although studies of bibliotherapy in a cancer context are few in number, they show an overall positive correlation between bibliotherapy and decreased distress, depression, anxiety and stress, and an increase in QoL.

Key Findings from the Literature

Bibliotherapy exists in a variety of forms, it is given a variety of names and its modes of delivery vary, yet there is agreement that it is beneficial for wellbeing in the situations in which it has been studied. It is most commonly experienced as individual reading of prescribed self-help books or imaginative literature (with or without intervention from a health or other professional), or facilitated, read-aloud group sessions that include discussion of the text and matter in question. Positive outcomes for participants, regardless of which type of bibliotherapy they experienced, have been measured by both qualitative and quantitative methods and anecdotal feedback. Such results are especially relevant for individuals who may be depressed, anxious or isolated.

Bibliotherapy in a cancer context has received a little attention. Of the studies that have been undertaken, findings range from conditionally positive to distinctly positive, although the focus has thus far rested mostly on self-directed CBT-based bibliotherapeutic interventions.

Storytelling has a long history in its role in human connection. With the production of written materials, read-aloud practices were first formed, and although they remain entrenched in the personal and familial habits of some people, they are much less common today. Listening to written texts read aloud offers another way of comprehending them. For those suffering CRCI, being read to may be the answer to restoring or introducing reading and all the therapeutic benefits that accompany it.

Methodology and Methods

Design

This study is exploratory, and it employs an experimental pre/post design to examine the relationship between the emotional wellbeing of people undergoing cancer treatment and a read-aloud bibliotherapeutic program.

The lens of an advocacy/participatory worldview (Creswell, 2009) is being used. Help with distress is frequently missing from cancer treatment, so giving participants a voice via advocacy research is appropriate. Participant input is crucial in determining the choice of reading material, which is reinforced or changed at the mid-point of the program, depending on participant feedback. Exit interviews with participants, with open-ended questions and allowing the time and space for any additional comments, is to further give a voice to the participants. The research is phenomenological – all participants have a lived cancer experience, as does the researcher, who is in the position to understand and advocate for change. Phenomenological researchers generally need to put their own experiences aside in order to better understand the experiences of the participants (Nieswiadomy, 1993), however, while acknowledging that not all cancer experiences are identical, that is not necessary in this project as the researcher is in the same phenomenological group and understands first-hand the impact cancer can have on emotional wellbeing.

This study eminently suits a mixed methods approach due to its cross-disciplinary nature (Creswell, 2009; Hesse-Biber & Johnson, 2015), where it is necessary to understand both CRCI and bibliotherapy, and to synthesise the aspects of each to present a more comprehensive approach than either qualitative or quantitative methods could do individually. Additionally, the mixed methods model is an excellent fit for health care issues (Creswell, 2009). In order to gain insight into participants’ viewpoints, qualitative approaches are needed (Vaismoradi et al., 2013), and here they are required to inform a part of the intervention itself (the choice of reading material, as determined at enrolment time and confirmed or otherwise at the mid-point), as well as to gather detailed data exploring and understanding the participants’ (and their families’) experience of the intervention via semi-structured interviews at the conclusion of the intervention. This study is also implementing an objective measure of changes to emotional wellbeing (the quantitative component). Standard wellbeing surveys are administered at the first and final sessions of the read-aloud program: Depression Anxiety Stress Scales – Short Form (DASS-21) and Warwick Edinburgh Mental Wellbeing Scale (WEMWBS). The DASS-21 is the shortened version of DASS-42 and is widely used to measure depression, anxiety and stress symptoms, with proven validity in a variety of settings and high internal consistency (Antony et al., 1998; Lovibond & Lovibond, 1995). The 14-item version of the WEMWBS provides a picture of the respondents’ mental wellbeing via both feeling and function items (Warwick Medical School, 2020a) and has been validated in clinical settings (Warwick Medical School, 2020b). A secondary measure of the Adult Survey of Reading Attitudes (ASRA) is also being collected to measure changes in reading ease, attitude and practice. The ASRA was designed and tested to accurately reflect adults’ reading attitudes, behaviours and feeling (Smith, 1991). An exploratory sequential approach is being used, with qualitative and quantitative data gathered at different points during the intervention.

Ethics approval for this project was granted by the University of South Australia's Human Research Ethics Committee (approval 204027), The Southern Adelaide Clinical Human Research Ethics Committee (OFR Number 128.22) and St Andrew’s Research and Ethics Committee (approval 139). As all participants were English-speaking adults over 18 years of age, they read and signed consent forms, or had the form read to them by the researcher and gave verbal consent (which was recorded).

Recruitment

Participants have been recruited from metropolitan, rural, regional and interstate areas. Target sample sizes were set at 20 for metropolitan Adelaide and 20 for rural/regional/interstate. To date, 21 metropolitan participants, and 17 rural/regional/interstate participants have been recruited into the program. However, recruitment has been extremely difficult. A number of recruitment avenues were cut off due to new variants of COVID-19 (for instance, the Cancer Council SA lodges), while other potential recruitment agencies withdrew without giving reasons. Hundreds of flyers, posters and emails went out into public spaces, cancer support groups and organisations. Ethics approval was obtained for recruitment from two Adelaide hospitals; however, this only resulted in the recruitment of two participants. Additionally, the researcher was interviewed for radio, television, a podcast, newspaper and a community magazine. Combined, these additional avenues yielded two additional participants. Despite Public Library Services (SA) and Australian Library and Information Association (ALIA) endorsing the project and asking public libraries to promote recruitment, very few SA public libraries followed this suggestion and most SA public libraries that were approached by the researcher were unable or unwilling to advertise the study. It is surprising that most South Australian library staff are unable to advertise a reading program because promoting reading should be part of libraries’ core business. The Victorian Book Well pilot program noted that a ‘fundamental principle of public libraries’ has always been ‘access for everyone to reading and literature’ (McLaine, 2011, p. 84) but, in general, public library staff here were constrained by local council rules that prohibited the promotion of anything that hadn’t originated from the council. The most effective way of recruiting participants occurred via speaking at cancer support group meetings and writing articles for cancer support group magazines and newsletters. A wide variety of approaches to recruitment were required to reach recruitment targets due to most strategies yielding small numbers of participants.

Eligibility criteria: over 18 years of age, fluent in English and within 12 months of cancer treatment.

Intervention

Program Delivery

Frequency: Weekly as new brain connectivity from reading fiction remain for about a week (Berns et al., 2013).

Session duration: About 45–60 min.

Location: Metropolitan participants’ homes where participants are willing, otherwise at their local library, or closest UniSA campus. Many rural/regional/interstate participants took part via Zoom, where it was not feasible for the researcher to travel to them.

Mode: one-on-one (one reader and one participant present).

Duration of intervention: six weeks.

Book Selection

The choice of reading material was informed by the reading habits questionnaire that participants completed during intake. It was very important that the reading material was tailored to the individuals – it must be enjoyable to be effective, that is, a pleasant immersive experience. Both readers and non-readers were encouraged to participate. Most readers had lapsed due to diagnosis and/or treatment, but they were able to give clear indications of preferred genres and authors. Non-readers were asked additional questions during phone screening, concerning television and film watching, and the enrolment forms asked about childhood reading interests, educational levels, and difficulties experienced when reading. Although the emphasis throughout this study was on fiction, since it was so vital that participants enjoy the reading material, other imaginative works were considered, and although no plays were included, some poetry was. Additionally, narrative non-fiction was deemed appropriate for inclusion because of the way it tells a story (that just happens to be true), while also noting that folklore, yarns, anecdotes and Australian wit and humour are all classified non-fiction but were suited for inclusion alongside texts classified as fiction.

Short stories were typically read during intervention sessions, chosen according to participants’ favourite genres and authors. Some poetry was read, some chapters of autobiographies, chapters of novels where they were able to stand-alone (this was possible for instance, with some historical fiction, some fantasy, science fiction and some beautifully narrative tales based on true stories) and quality children’s literature. Humorous material was favoured as a choice for non-readers and was well-received.

Practicalities

Practicalities existed around home visits and researcher safety, as well as travel time and preparation time. Every item of reading material used in the program was pre-read by the researcher for appropriateness according to demographics and health condition. Reflections were made about every session with every participant. Another article could be written, based on these reflections, about participant posture and expression, learning about the different requirements of interacting with people with different cancer types, hospitality, fatigue (of both participant and researcher), the need for regular researcher debriefing, and the need for (at least) psychological first aid skills when undertaking a program such as this. A set of volunteer training notes was developed, with the intention of recruiting some reading volunteers from the community and from the performing arts faculty at UniSA. However, the logistics of recruiting volunteers who were up-to-date with COVID-19 vaccinations, who lived near an onboarding participant, and ensuring reading material was available to them became too difficult. Therefore, the researcher delivered the intervention to all participants, providing consistent delivery of the program and its evaluation.

Findings to Date

Preliminary findings indicate that participating in the intervention was an extremely positive experience. Using the differences between the pre- and post-intervention instruments’ scores, descriptive statistics will be calculated for the quantitative data, followed by one-sample t-tests for normally distributed data and Wilcoxon Signed-Rank tests for any skewed data. Thematic analysis of the qualitative data collected will be undertaken. The authors look forward to sharing the findings in full after analysis has been completed.

Discussion and Implications

Early themes emerging are promising. The program appears to be valued by people with various cancer types and stages, at various stages in their cancer treatment, all genders, people who live alone as well as people who live with others, and by both readers and non-readers.

The outputs from the program will include a volunteer reader training guide and story guide. The former may be used if the program is rolled out in cancer centres, hospitals, hospices and community palliative care services. The latter would also be useful in that context but may also be of use in families supporting a loved one going through cancer treatment.

Based on the feedback in this study so far, coupled with studies that show the role of bibliotherapy in improved depression, anxiety, loneliness, distress and chronic pain (Billington, Humphreys, et al., 2016; Billington, Longden, et al., 2016; Davis et al., 2016; Gusmao & de Souza, 2020; Helfgott, 2017; Macdonald et al., 2013; Malyn et al., 2020; Reeves & Stace, 2005; Taleban et al., 2016), a read-aloud bibliotherapy program may have benefits for people in outpatient settings, inpatient cancer centre settings, inpatient palliative care settings, as well as in community palliative care programs, for all patients, not just those affected by cancer.

Conclusion

This research project will contribute unique findings to the disciplines of library and information science (LIS), psycho-oncology and integrative oncology. The individual issues of bibliotherapy, the unmet emotional needs of cancer patients and CRCI are all documented, but there have been no studies exploring the interaction of cancer patients and readers, and possible effects on the wellbeing of this population via bibliotherapy delivered as regular read-aloud sessions.

It is hoped this research will inform decisions about the inclusion of bibliotherapy in integrative oncology, which may provide a respite from the distress of cancer, and some improvement in emotional wellbeing.

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Elizabeth Wells

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 reading for pleasure and health 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, although she is also passionate about pre-literacy and literacy programs, and the role of libraries in our communities. Elizabeth can be reached at [email protected].

Diane Velasquez

Diane L Velasquez is the Program Director and senior lecturer of the Information Management Program at the UniSA STEM, University of South Australia. She holds a BA in political science from San Jose State University, an MBA in management from Golden Gate University, a Master of library resources and information science from the University of Arizona, and a PhD in information science from the University of Missouri. Her research interests are in romance genre and readers’ advisory, postgraduate course work student’s satisfaction, and evaluation and assessment of public library websites. Dr Velasquez can be reached at [email protected].

Amanda Hutchinson

Amanda Hutchinson is an Associate Professor in Psychology at the University of South Australia and Deputy Director of the Behaviour Brain Body Research Centre at the University of South Australia. Amanda’s research interests are in psycho-oncology, specifically cancer-related cognitive impairment and quality of life throughout cancer survivorship. Amanda can be reached at [email protected].

Kate Gunn

Kate Gunn is a clinician-scientist who has developed a solid track record of high-quality research outputs and real world impact, via numerous academic collaborations and authentic community and industry partnerships. Her rural psychoncology, farmer health and mental health research crosses many disciplines (e.g. Clinical Psychology, Public Health, Rural Health) and has resulted in >65 peer-reviewed academic publications and multiple national awards. Her total research income exceeds $14 million (>$2.5 million as CIA). Most importantly, she has led the development of several novel interventions that improve rural Australians’ health and wellbeing and remain publicly available (e.g. www.ifarmwell.com.au).