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http://orcid.org/0000-0003-3604-2897 Liz Brewster 1 ,
Sarah McNicol 2
1 Lancaster Medical School , Lancaster University , Lancaster , UK
2 Education and Social Research Institute , Manchester Metropolitan University , Manchester , UK
Correspondence to Dr Liz Brewster, Lancaster Medical School, Lancaster University, Lancaster, UK; e.brewster{at}lancaster.ac.uk

Bibliotherapy is the use of texts to provide support for people with mental and physical health problems. It is widely seen to have beneficial outcomes but there is still disagreement about how best to deliver bibliotherapy in practice. This article explores one method of delivering bibliotherapy which has evolved over the past 20 years in the North of England, the Kirklees approach. Using a multimethod qualitative research design including reflective observations, interviews and document analysis, the article examines how bibliotherapy has been delivered to people with mental health problems and dementia in a volunteer-led scheme. As an inherently flexible and adaptable approach, bibliotherapy in practice in Kirklees is best defined by its ethos, rather than a prescriptive list of its activities, as is the case for many alternative approaches to bibliotherapy. It is an approach to bibliotherapy which is person-centred; avoids value judgements of texts and responses to them; is often co-produced with group participants; is about making a contribution (in a variety of ways); and emphasises social connection. This separates it from other current models of bibliotherapy operating in the UK, and demonstrates how it may be tailored to the requirements of those experiencing diverse mental and physical health conditions. A more responsive form of bibliotherapy, as outlined here, has the potential to provide support across the community.

arts in health/arts and health
literature and medicine

Data availability statement

Data are available upon reasonable request. Deidentified participant data that underlie the results reported in this article are available to researchers with a methodologically sound proposal, to achieve aims in the approved proposal. Proposals should be directed to [email protected]. Data requesters will be required to sign a data access agreement.

https://doi.org/10.1136/medhum-2020-011898

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Twitter @lizbrewster

Contributors Both authors contributed to the conception, design, analysis and interpretation of data. LB drafted the article and SM contributed to and revised it. Both authors approve the version to be published.

Funding The evaluation of Words in Mind on which this article is based was supported by Words in Mind (ref: Third Sector Leaders Kirklees grant number 0010349231, supported by The Big Lottery). The funder played no role in the design, execution, analysis and interpretation of the data, or writing of the study.

Competing interests None declared.

Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review Not commissioned; externally peer reviewed.

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SYSTEMATIC REVIEW article

Bibliotherapy as a non-pharmaceutical intervention to enhance mental health in response to the covid-19 pandemic: a mixed-methods systematic review and bioethical meta-analysis.

$\nDaniela Monroy-Fraustro,&#x;$

1 Centro de Investigaciones Económicas, Administrativas y Sociales, Instituto Politécnico Nacional, Mexico, Mexico
2 Cross-Functional Group in Clinical Ethics, XXI Century National Medical Center, Mexican Social Security Institute, Mexico, Mexico
3 Facultad de Medicina, Universidad Nacional Autónoma de México, Mexico, Mexico
4 Departamento de Traducción y Ciencias del lenguaje, Pompeu Fabra University, Barcelona, Spain
5 Servicio de Endocrinología, National Institute of Pediatrics, Mexico, Mexico
6 Metabolic Diseases Research Unit, XXI Century National Medical Center, Mexican Social Security Institute, Mexico, Mexico

Background: A non-pharmaceutical treatment offered as psychological support is bibliotherapy, which can be described as the process of reading, reflecting, and discussing literature to further a cognitive shift. The coronavirus disease 2019 (COVID-19) pandemic demands a response to prevent a peak in the prevalence of mental health problems and to avoid the collapse of mental health services, which are scarce and inaccessible due to the pandemic. Thus, this study aimed to review articles on the effectiveness of bibliotherapy on different mental health problems.

Methods: A systematic review was conducted to examine relevant studies that assess the effectiveness of bibliotherapy in different clinical settings as a treatment capable of enhancing a sense of purpose and its surrounding values. To achieve this, a systematic review, including a bioethical meta-analysis, was performed. A variant of the PICO (Participants, Intervention, Comparison, and Outcome) model was used for the search strategy, and the systematic review was conducted in three databases: PubMed, Bireme, and OVID. Inclusion criteria were relevant studies that included the keywords, excluding documents with irrelevant topics, studies on subjects 15 years or younger, and in languages besides Spanish or English. Starting with 707 studies, after three rounds of different quality criteria, 13 articles were selected for analysis, including a hermeneutic analysis, which was followed by a fourth and final recovery round assessing bibliotherapy articles concerning healthcare workers.

Results: Our findings showed that through bibliotherapy, patients developed several capacities, including the re-signification of their own activities through a new outlook of their moral horizon. There are no research road maps serving as guides to conduct research on the use of bibliotherapy to enhance mental health. Additionally, values such as autonomy and justice were closely linked with positive results in bibliotherapy. This implies that bibliotherapy has the potential to have a positive impact in different settings.

Conclusions: Our contribution is to offer a road map that presents state-of-the-art bibliotherapy research, which will assist institutions and healthcare professionals to plan clinical and specific interventions with positive outcomes.

Introduction

Amid the coronavirus disease 2019 (COVID-19) pandemic, a pressing problem faced by different health ministries is the mental health of the population, this includes both those who have been social distancing and staying indoors for long periods at a time and those considered essential workers who have continued laboring despite the considerable risk—among them are healthcare workers (HCWs). This has exposed the population to a variety of psychological diseases such as sleep disorders, depression, anxiety, and burnout. These disorders affect a broad spectrum of individuals from different backgrounds and across ages ( 1 – 3 ). If not addressed, the prevalence and financial burden of mental health disorders in communities affected by COVID-19 will grow exponentially. Furthermore, both the healthcare and socioeconomic systems will collapse if a significant improvement is not made in the diagnostic approach, prevention, and non-pharmacological treatment of psychological disorders.

Mental health problems can be addressed through a plethora of available treatments, such as psychosocial therapies or cognitive behavioral therapy (CBT), which are provided by trained psychologists ( 4 ). However, regardless of the availability of different treatments, few people with mental health problems have sought help during the COVID-19 pandemic ( 5 ). This setting, along with the need for social distancing, poses a challenge when considering available treatments for improving mental health.

One of the available non-pharmacological treatments in psychological literature is bibliotherapy ( 6 ). This is defined as reading as a guide to therapeutic change; bibliotherapy has been studied by mental health scientists in recent years as a tool, different from traditional interventions, that improves the readers' lives ( 7 , 8 ). Though several definitions have been created to conceptualize bibliotherapy , they all focus on three essential elements: reading material for inside- or outside-session use, a therapeutic and achievable goal, and personal improvement.

Bibliotherapy is better understood as the process of reading, reflecting upon, and discussing literature (personal narratives and stories). This discussion of curated literature promotes cognitive shifts within the reader ( 9 ). It is crucial to note that bibliotherapy differs from self-help strategies as the reflection and discussions of literature take place in a structured setting ( 10 ). The reading material is also subjected to scrutiny and has a specific purpose or problem that it addresses.

The use of books in a systematic clinical setting offers the possibility of improving mental health at a low cost. In addition, it represents an alternative for those who are hesitant to receive treatment for mental health problems ( 11 ). For essential workers, including healthcare professionals, it is essential to be treated and to get help. Not only do mental health problems lead to moral distress, but they can be associated with loss of values when treating patients, which in turn reduces the quality of care.

Bibliotherapy has shown positive results for various mental disorders in different trials, which justify the rational and empirical evaluation of this approach. However, in the existing literature, it remains to be studied whether bibliotherapy can enhance values that contribute to obtaining a sense of purpose. Therefore, the main objective of the present work is to review the principal studies that assess the effectiveness of bibliotherapy as a treatment to enhance a sense of purpose and values in those with different mental health problems. Based on these results, healthcare professionals and institutions can plan clinical and specific interventions that are well-tested, assessed, and valued and show clinical effectiveness in improving mental health and the work environment. As a result, different mental health issues, such as anxiety, depression, sleep disorders, and burnout, can be addressed through bibliotherapy.

A diagnostic screening was performed on five databases: PubMed, Bireme, OVID, Philosopher's Index, and JSTOR, searching for the most recent articles on the use of bibliotherapy as a non-pharmacological intervention to help mental patients and HCWs. Subsequently, a systematic review was conducted up to February 2018 to obtain original articles about available literature-based non-pharmacological treatments (bibliotherapy). This search was complemented with a screening up to 2020, incorporating the COVID-19 pandemic. The search strategy was based on the PICO (Participants, Intervention, Comparison, and Outcome) approach coupled with the PRISMA (Preferred Reporting Items for Systemic Reviews and Meta-Analyses) checklist ( 12 ). However, the comparison variable was removed due to the research being focused only on bibliotherapy as an intervention. The PIO (Participants, Intervention, and Outcome) strategy, which includes participants or problems, the intervention or exposure, and outcomes, was used to systematically search all databases. This type of modified search derived from the PICO model has also been used in other systematic reviews ( 13 – 15 ).

Search Strategy/Literature Search

The search strategy was carried out on five computerized databases: PubMed, Bireme, Philosopher's Index, JSTOR, and OVID. The first database used was PubMed, produced by the National Library of Medicine (a public body that depends on the National Institutes of Health of the United States), which, according to Cochrane ( 16 ), contains approximately 16 million references to journal articles from the year 1950 onward, as well as 5,200 indexed journals. This makes PubMed/Medline the most widely used database in the health sciences field globally. Subsequently, a search was carried out in the Virtual Health Library (VHL) database, produced by Bireme (Latin American and Caribbean Center for Information in Health Sciences), which is a specialized center of the Pan-American Health Organization (PAHO). There is a considerable importance to this database because it contains (indexed) the most relevant scientific literature journals from Latin America and the Caribbean. We performed the search as well in Philosopher's Index, which is a premier database designed to find publications of interest in the field of philosophy. The axiological analysis is the great interest for philosophers worldwide. Following is JSTOR that is a cross-functional database.

Finally, a search was carried out in OVID, the world's most trusted medical research platform, which has been a vital part of healthcare for over 20 years. OVID's flagship platform is the leading choice, globally, among clinicians, researchers, educators, and students in the medical, scientific, and academic fields.

Mesh terms were used to review this phenomenon. The following keywords were used for Participants: “healthcare personnel,” “healthcare professional,” “healthcare manpower,” “physician,” “doctor,” “nurse,” “social worker”; Intervention: “bibliotherapy”; and Outcome: “liberty,” “empowerment,” “tolerance,” “justice,” “benevolence,” “equity,” “respect,” “charity,” “beauty,” “autonomy,” “purity,” “ethical values,” “axiology,” “personal identity,” and “dignity.” The Boolean operator “AND” was used to link PIO variables, while the operator “OR” was used to combine keywords from the same variables. This search strategy was used to obtain relevant articles from each database, as shown in Figure 1 . All references were stored in Mendeley Desktop. Due to the scarce results on health workers, a redirection to the general population was done using the screened papers that were already in our curated database.

Figure 1 . Flowchart. It shows the selection process used to retrieve the final 13 articles. In the first selection round, 707 articles were obtained from three computerized databases (PubMed, Bireme, and OVID). Works with double references, irrelevant topic, or not written in English or Spanish were excluded during the second round of screening, leaving 25 articles. The third round of selection included a quality criterion in which the full text was read. Finally, 13 studies with over 80% were selected for a hermeneutic analysis.

Eligibility Criteria

In the first round, articles were selected from every electronic database and were screened for relevance based on their title and abstract. Works with a double reference, on participants 15 years old or younger, irrelevant topic, related to letters or books, and not written in English or Spanish were excluded. Before the second round, three authors performed an iterative review to confirm the actual relevance of each paper.

In the second round of selection, the full text of the articles was considered. A quality criterion, as seen in Supplementary Table 1 , was used to assess the methodological value of each reference. The articles were read and classified according to the following criteria: (a) clear investigation objectives, (b) inclusion of a research question according to the objectives, (c) adequate and solid methodology, (d) terminology definition, and (e) results according to the objectives. Each criterion was worth 20%, with a maximum quality score of 100%.

In the third round, 13 articles met the optimal quality criteria (higher than 80%). Each article was analyzed and codified using Atlas. ti software to highlight the backgrounds of the bibliotherapy interventions, methodological elements, and results. All articles were codified to develop a deeper qualitative analysis based on the different codes, their relations, co-occurrences, and their networks. The bioethical meta-analysis searched for networks that could link bibliotherapy as an intervention to enhance social, ethical, and professional values.

Finally, a fourth round was executed as a recovery round to retrieve any articles directly linked to the intervention of bibliotherapy for HCWs.

Relevance Assessment of the State of the Art of Bibliotherapy

The first round yielded 707 initial articles, after which 25 articles were retrieved in the second round of selection; lastly, 13 articles met the quality criteria and were retained for further analysis ( Figure 1 , Supplementary Figure 1 ).

Studies that had clear research questions and objectives, definitions of the measured concept, valid measuring instruments, detailed description of the methods, information of the targeted population, characteristics of the participants, addressed missing values, and used appropriate statistical analysis were considered. The results are shown in Table 1 .

Table 1 . Quality criteria for the second round of selection.

These 13 studies were analyzed in depth to highlight the strengths of each work. The following considerations were added to the analysis: if it was treatment or prevention, targeted disorder, duration of intervention, sessions per week, instrument used, and main results ( Table 2 ).

Table 2 . Description of the articles in the third round of selection.

One of the main findings showed that all studies addressed a treatment perspective rather than a prevention perspective. Three of these studies did not specify the length of the intervention, and two out of these 13 studies did not mention the kind of literature they used ( 17 , 18 ).

Considering the main results of these studies, three of them found no differences between the bibliotherapy group and control group ( 17 , 19 , 20 ). However, results from four other studies indicated that bibliotherapy may facilitate self-concept and an internal locus of control ( 20 – 23 ).

Another study showed that with bibliotherapy, though there was a significant change, it did not result in a better intervention than traditional treatment ( 19 ). Another study pointed out that bibliotherapy was better than being on the waiting list ( 24 ). Finally, the remaining three studies found that bibliotherapy was a potential self-help resource ( 10 , 24 , 25 ).

Of the 13 studies included, two used bibliotherapy as an additional treatment ( 19 , 23 ), while the remaining 11 studies tested bibliotherapy as the main treatment. One paper described pretreatment evaluation ( 17 ), while 12 studies evaluated pretreatment and posttreatment. None of the studies showed any adverse effects of using bibliotherapy as a treatment; however, two studies described the effect as not adverse, although this finding was not significant ( 19 , 26 ).

Regarding improvement, out of the 13 studies, six did not specify the percentage of patients who improved ( 11 , 20 – 22 , 24 , 27 ). Bilich et al. ( 10 ) describes that 31% of the total sample showed clinically significant changes ( 10 ), Hodgings et al. ( 26 ) reported a 23% improvement, and Kaldo et al. ( 18 ) reported that 68% of the progress was made in the bibliotherapy group ( 26 ). Furthermore, Macdonald et al. ( 25 ) mentioned a 100% advance in participants receiving bibliotherapy, and Wright et al. ( 23 ) specified an 89% recovery of the participants in the experimental manipulation condition.

The three studies found in the recovery round, which assessed articles directly linked with bibliotherapy in HCWs, showed the impact that different literary works can have. While two studies focused on the nursing population, Amar ( 28 ) examined the impact of personal stories on nursing students' education and Harrison ( 29 ) studied the use of imaginative literature in scholarly inquiry, Andersonet al. ( 30 ) assessed the importance of empathy in both physicians and patients through the use of graphic stories. Taken together, all three articles highlight the positive impact of bibliotherapy for healthcare personnel.

Semantic Networks as an Initial Compass

The database stored in Mendeley was analyzed for the frequency of the terms used in the title, keywords, and abstract of each work according to the search parameters specified in the Methods section. The results of the first search yielded 488 articles (without double references) ( Figure 2A ), and five studies were discarded because no abstract was found. Based on this volume of articles, the word count was modified to consider only terms with 75 coincidences, meaning those with a significant frequency ( Figure 2 ).

Figure 2 . Keyword frequency. Analysis of database stored in Mendeley regarding the words in the title, keywords, and abstract. (A) Four hundred eighty-eight articles were retrieved in the first round, (B) 35 in the second, (C) 25 in the third, and (D) 13 in the fourth. Results showed a coincidence in the most frequent words.

The five most common terms in the literature records were treatment (560), care (386), health (378), depression (316), and interventions (271). At this point in the research, bibliotherapy did not appear as a frequent word, since there were only 126 coincidences, placing it at the 38th position. As bibliotherapy was the key concept of the present study, another round was conducted to obtain relevant studies for the analysis.

In the second round, which yielded 35 documents, three were discarded due to the lack of an abstract. The most frequent terms in those articles were bibliotherapy (62), treatment (40), group (35), patients (31), and health (28), where the terms treatment and health coincided with the previous selection ( Figure 2B ).

In the crossed iteration of the second round, 25 articles were retrieved, where two were again discarded because they did not have an abstract. The same list of terms, as in the previous round, was found; nevertheless, based on the significantly reduced volume of articles, the coincidences were not limited. The most frequent words in these documents were bibliotherapy (40), treatment (30), group (24), health (22), and patients (22) ( Figure 2C ).

These new results showed a coincidence in the most frequent words except in the order of health and patients, since these terms were inverted in the present third round. It is worth noting that bibliotherapy was the most frequent word in the 25 articles that point out the proper delimitation of each selection round.

In the third round of selection, 13 final articles were retrieved. One of them did not have an abstract. The same list of terms as in the previous search was found, and there was no restriction on the number of elements in the word count. The most frequent words were bibliotherapy (23), group (23), treatment (21), patients (17), and participants (15) ( Figure 2D ).

There was a coincidence in four out of the five terms compared to the previous round of selection. This change shows that the articles had a strong methodological component in the implementation of bibliotherapy, which is consistent with the present systematic review.

In the last round, we also researched the complete text of the 13 articles; the most frequent words were group (427), treatment (402), bibliotherapy (295), participants (288), study (258), depression (244), health (191), mental (160), patients (160), and clinical (156).

Findings From Bibliotherapy and Values

Hereafter, a table was created to show values that were considered in each paper ( Supplementary Tables 1 , 2 ). The different values that a study impacted are shown, with a cognitive shift on the part of the participants or considered relevant, on how they view their own life, their treatment, or everyday activities. By doing this, it was found that all articles spoke about gaining autonomy from bibliotherapy, 10 works addressed liberty as a central value in the intervention, and five articles regarded being proactive toward treatment. No articles that highlighted honesty, veracity, justice, or beauty were found (as shown in Table 3 ). To specify what is understood for each value, examples of quotes can be seen in Table 4 .

Table 3 . Values considered in the last round of review.

Table 4 . Instances of values.

To develop the hermeneutic analysis, each paper was read in depth and codified using Atlas. ti software to create networks of terms. One example is shown in the next image ( Figure 3 ), where values such as liberty, autonomy, and justice are closely linked and associated with positive results in bibliotherapy.

Figure 3 . Values linked to bibliotherapy. Network of values performed in Atlas. ti. It illustrates how values such as autonomy, liberty, and justice are associated with positive results regarding bibliotherapy treatment. The figure depicts how autonomy is a crucial value found in all 13 texts of the final round as well as a network between values. The identification numbers refer to each of the 13 texts and the line in that text.

In the third round of selection, the analysis showed that autonomy, justice, and freedom were the values most frequently discussed in these papers. Autonomy was a value closely linked with positive results in the case of bibliotherapy because this is one of the ways to promote a self-help treatment that could promote empowerment and allow for the control of an increasing number of situations in patients' lives, enable them to solve their own problems, and acquire the skills necessary to do it ( 19 ). These studies showed improvements related to self-concept and locus of control, which also reflect improvements in the autonomy of a patient. However, bibliotherapy was also found to promote autonomy in the participation of a patient in their own treatment by being proactive when given access and benefiting from the information about their illness or condition and lowering the caregiver's burden by improving compliance and reducing anxiety episodes ( 27 ). Values such as autonomy and proactiveness also showed an impact on values, such as liberty, due to the enhanced self-efficacy and self-concept, an improvement in life possibilities, options open to patients with fewer symptoms, and better control of their day-to-day lives.

Meanwhile, justice may also be considered a value linked to bibliotherapy in the view of these works because it allows for a great deal of access to this form of intervention. Wright et al. ( 23 ) states that bibliotherapy is accessible to individuals who may be geographically or otherwise isolated; it is also a valuable form of treatment for those with limited economic resources and helps caregiving institutions to pay attention to larger groups with limited personnel. Bibliotherapy also allows for a more private way to address these health issues, without having to deal with negative perceptions or the reticence of those not willing to share their concerns with others.

These considerations may also be applied to a specific population, that is, HCWs who, due to the COVID-19 pandemic, have been under significant stress and their mental health has been threatened due to the conditions they face, moral burdens, and workload. In the literature reporting the specific case of mental health among HCWs, we found that all the previous stress factors signaled to widespread anxiety- and depression-related disorders ( 31 – 33 ). There was no report on bibliotherapy used to help HCWs; however, it stands as a viable option due to the logistic difficulties of offering standard treatments amid the pandemic.

A Hermeneutic Analysis on How Bibliotherapy Works

The analysis of these texts stemmed from phenomenological and hermeneutic approaches. The latter's, insofar as it concerns a naive reading, results are shown in Table 5 .

Table 5 . Hermeneutic analysis.

Phenomenologically, each paper was read in accordance with real, sensible experiences described. Thus, the reading focused on real-life scenarios behind research subjects. Compared with a wait-list control group, individuals receiving relapse prevention (RP) exhibited significant reductions in the frequency of panic attacks, panic cognitions, anticipatory anxiety, avoidance, and depression. In addition, individuals in the RP group were more likely to attain a “clinically significant change” in status on both panic-free status and level of avoidance more frequently than individuals in the control group ( 23 ). For example, in an article focusing on panic attacks, subjects are written in as individuals, far beyond being mere topics of interest due to panic attacks.

Although the table may reflect the subjects as mere numbers or components in the study, for the purposes of the bioethical and value-based medicine research that is behind this, the subjects are taken as single phenomena, independent of numbers or statistics. The real element of value then is the final discussion and conclusions that each paper arrived at and how they reflected on the effectiveness and ineffectiveness—that bibliotherapy may have as treatment or how it could aid in treatment. Research on bibliotherapy yields benefits when teaching people about the value of literature and how it may impact their daily lives and their day-to-day practices. As was seen in the 13 articles reviewed for this study, bibliotherapy's results and effects vary across the board; however, the general consensus seems to be positive.

A Road Map and Compass to Bibliotherapy as a Non-pharmaceutical Intervention

The results of prior studies illustrate some of the best practices that should be implemented in offering bibliotherapy ( Figure 4 ). Several studies were designed to compare control and experimental groups, with relatively small groups (most of them with fewer than 50 participants). Most of the studies' length was between 3 and 6 months, and these were often the ones that had positive results. The aim of the studies was to treat disorders such as depression, stress, and anxiety, as well as functional psychosis, among others; it is an option that can be considered as far reaching for a large population, including HCWs, that has mental health problems during the COVID-19 pandemic ( Figure 4 ).

Figure 4 . A road map to the systematic review. On the road map, we can appreciate the following: (1) That most of the studies on the last round of analysis were comparative experimental studies (9) that used a control group. (2) The studies most often had sample sizes smaller than 50 participants (6), but larger studies with less than 200 participants were also frequent. (3, 4) These studies tried to measure the efficacy of bibliotherapy mostly on patients with depression, anxiety disorders, and functional psychosis. (5) A variety of standardized tests, scales, and questionnaires were used along with interviews to measure the degree of change achieved through treatment. (6) Autonomy and liberty were the values most often related with positive results in these studies. (7) Bibliotherapy was offered in-person and through telephone sessions, although many of the studies did not pay enough attention to this aspect of the study. (8) A wide array of literature options was offered for these treatments, most frequently the clinician-supported problem-solving literature was used. (9) Nine out of the 13 studies reported positive results of bibliotherapy, which was considered a cost-efficient therapy suitable for mild to moderate disorders.

It is important to note that there are still several features of bibliotherapy that need further research. For example, most of the studies found were not specific about the type of sessions in which the therapy was offered; the recurring types of sessions were in-person and through telephonic contact. The last of these options, as well as online contact, is especially important if we wish to offer mental healthcare during times in which health services may be needed to be reserved for those who are critically ill. Another feature of bibliotherapy, which needs further research, is the materials, books, and booklets used in this type of therapy. Out of 13 studies, six used problem-specific books to offer therapy; however, the structure of such materials is not clear and cannot easily be reproduced. Moreover, one should consider those who cannot easily access hospitals; thus, studies on the wider fiction literature that may help are needed.

The articles present themselves as sturdily scientific; however, their motivations are to aid patients who suffer from problems such as mental disorders, addiction, and imprisonment. The most valuable piece of information for the purposes of this study is the reports of the individual studies' subjects, as more patients reported feeling an improvement with the kind of bibliotherapy provided by the conductors of the investigations. Although none of the 13 articles directly discussed bibliotherapy in treating service workers, doctors, medical personnel, or even workers who suffer from burnout, some of the articles may be pointing in this direction, aiding us in our own implementation of bibliotherapy as an alternative intervention in mental healthcare. Studies that address topics such as anxiety, depression, caregivers, and stress-related issues may have a direct impact on the way we understand the approach to be taken for our own subjects.

This study specifically addresses the issue of values—or lack thereof—and their possible furtherance through literature while simultaneously encompassing the axiological works of several philosophers that shed light on this topic. The selection of literary works has been carefully curated to each reflect a distinct value, which will thereafter be applied in clinical practice through value-based medicine, which reflects and grapples with these absences in evidence-based medicine. One of the main objectives is to take the correct approach when trying to understand and, in a way, treat our subjects with the implementation of literature as a manner of therapy.

The methodological approach was based on these previous studies on the effectiveness of bibliotherapy. It is considered that, given the literature's effectiveness as a reflection medium, it could impact the attendees in their everyday practice ( 10 ). The most common therapeutic intervention used for bibliotherapy is CBT. CBT helps clients identify their distorted and depressogenic thinking and learn more realistic ways to frame their experiences by reading and conducting exercises that are completed at home, with minimal or no supervision from a therapist ( 10 ).

The results showed autonomy and justice linked with positive results in bibliotherapy often because this type of therapy could promote empowerment, decision-making, and problem-solving. Enhancement of clinical autonomy was also often reported where patients were prone to participate in their own treatment, reducing the caregiver's burden by improving compliance and reducing anxiety episodes. Though the role that reflection plays in reviewing the experience of others and how it strengthens self-control and decision-making is not clear, its effects are noticeable.

Bibliotherapy is a complementary resource to the clinical treatment of a disease. It is a strategy that helps patients, through literature, to cope with their situation by identifying with the experiences lived by the characters, and from reading, to develop their own tools to make better decisions about their health and exercise control over their lives and their illness. It is well-known that literature, as a reflection of human existence, leads those involved to reflect on themselves and their environment, and that, in addition to its esthetic character, it possesses the richness of confronting individuals with their emotions, values, feelings, and conflicts. It is also a way of helping individuals express, live, and solve these. It is an intrinsic character of literature to serve as therapy, catharsis, and cure for any conflict that disrupts our existence, and that is why human beings have always resorted to it (and, of course, also to the arts) in some way as the best medicine for life.

The process involves three phases: identification, catharsis, and insight ( 34 ). First, the reader creates a bond with the character with whom they identify most; then, this character encounters a conflict and resolves it; and finally, the reader, having experienced the conflict of the character through the text, reflects on personal circumstances and internalizes some behaviors represented in the book that will serve as tools to resolve their own conflicts. Nussbaum ( 35 ) for the same reason points out that “the novel's capacity to explore the length and breadth of a life, but the combination of this exploratory power with the presence of a character who will count as a high case of the human response to value, that creates the telling argument.”

The key to moral behavior not only implies theoretical understanding, but it must be connected with practice, unleashing a clear consciousness in the reader in such a way that unpacks their moral objectives, values, and hierarchy of values, creating moral abilities involved in reading and interpreting it ( 35 , 36 ). Hence, patients can re-signify their own matters, being able to think about their lives and conflicts from a broader moral horizon.

In this study, we explored the heterogeneity of the outcome of bibliotherapy and its value network relationship. The results implied that the patient uses and develops several capacities in an indispensable way such as emotion, creativity, values, moral horizon, and imaginative capacity. This means that, as readers, we assume the challenge of unpacking our imperfections (such as physical, ethical, and axiological). Nussbaum ( 35 ) expresses it this way, “We notice the way we are inclined to miss things, to pass over things, to leave out certain interpretative possibilities while pursuing others.” In brief, to teach us “how we should live.” However, as Pellegrino [( 37 ), p. 16] states: “She or he can enmesh us in the variegated particulars of an imagined life, but that cannot replace the hard work of normative ethics. In the end, the reader must choose whether to accept, reject, or modify his or her own way of life in light of the experience gained by the evocations of affect and thought in a work of fiction.”

Patients with psychosis improved in their clinical symptomatology and cognitive and psychosocial functioning after having attended a reading group program compared to patients who did not attend such structured activities. Patients who attended the group also reported that reading activity had a positive impact on group cooperation dynamics and that it was perceived as highly pleasant, useful, and interesting ( 22 ). Although not to be taken as a single means to treat a patient, it is an aid to other kinds of therapy such as CBT.

The scientific literature reports demonstrate certain benefits from bibliotherapy, maybe not surpassing those of other psychological treatments, but since one of the advantages of the treatment is that it can be widely available, bibliotherapy can and should be considered when developing public policies to help take care of the mental health of those affected by the COVID-19 pandemic, and for physicians, nurses, and other healthcare professionals to cope with the saturation of healthcare services during the COVID-19 pandemic. There is still plentiful details of the treatment and the phenomenon to discover and be systematically assessed to expand the benefits for health personnel and prevent diseases such as sleep disorders, anxiety, depression, and burnout, which greatly decrease the quality of life of communities and healthcare professionals. However, some thought must be given to the mechanisms of implementation of such therapies, where the most common instruments of bibliotherapy are books, which are currently difficult to share. In this sense, electronic books and materials would probably be a better option for implementation.

After this systematic review, we respond to our main research question, building up the road map, and many conclusions regarding bibliotherapy can be drawn. First, when the methodology of a bibliotherapy treatment is conducted cautiously, positive effects can be seen, regardless of the diseases. It can be noted that bibliotherapy treatments promote values as supplementary profit. One of the main positive aspects of bibliotherapy is that it is a low-cost alternative that can reach those unable to access treatment during the COVID-19 pandemic; it is an integrative and multidisciplinary treatment that links psychology, medicine, humanities, and literature. Hence, this means that bibliotherapy could potentially be applied to a larger population and healthcare personnel and, when implemented in a structured way, could have a positive impact on enhancing mental health amid the COVID-19 pandemic.

Data Availability Statement

The original contributions presented in the study are included in the article/ Supplementary Material , further inquiries can be directed to the corresponding author/s.

Author Contributions

MA-B, NA-B, PS, and AH-B conceived and designed the experiments. DM-F, IM-C, MA-B, AH-B, PS, and NA-B performed the systematic research and/or bioethical meta-analysis, and analyzed the data. DM-F, IM-C, MMA-B, SR, AH-B, PS, MA-M, and NA-B wrote the paper and contributed to helpful discussions. All authors contributed to the article and approved the submitted version.

The authors declare that this study received funding from the Instituto Politécnico Nacional SIP-IPN 20200228 and 20210515, as well as from COFAA-IPN. The funder was not involved in the study design, collection, analysis, interpretation of data, the writing of this article, or the decision to submit it for publication.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Acknowledgments

We are indebted to Federica Porcu for performing some of the preliminary searches. The authors would like to acknowledge the experimental support and fruitful discussions provided by MSc Ana Beatriz Serrano-Zumago from the Cross-functional group of clinical ethics at Centro Médico Nacional Siglo XXI, IMSS. We also wish to thank Dr. Cristina Revilla-Monsalve, Joaquín González, and Dr. César González for their support. DM-F would like to thank Mexico's National Council on Science and Technology (CONACYT) for the scholarship number 1000198, which allowed her to further this research. The contributions of the assigned pre-graduate research fellows at the Universidad Iberoamericana are greatly appreciated. We are also thankful for the contributions of Rogelio Ezequiel and Alonso Loyo for the artwork.

Supplementary Material

The Supplementary Material for this article can be found online at: https://www.frontiersin.org/articles/10.3389/fpubh.2021.629872/full#supplementary-material

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Keywords: bibliotherapy, litherapy, mental health, coronavirus disease 2019, pandemic, values, bioethics, systematic review

Citation: Monroy-Fraustro D, Maldonado-Castellanos I, Aboites-Molina M, Rodríguez S, Sueiras P, Altamirano-Bustamante NF, de Hoyos-Bermea A and Altamirano-Bustamante MM (2021) Bibliotherapy as a Non-pharmaceutical Intervention to Enhance Mental Health in Response to the COVID-19 Pandemic: A Mixed-Methods Systematic Review and Bioethical Meta-Analysis. Front. Public Health 9:629872. doi: 10.3389/fpubh.2021.629872

Received: 20 November 2020; Accepted: 12 January 2021; Published: 15 March 2021.

Reviewed by:

Copyright © 2021 Monroy-Fraustro, Maldonado-Castellanos, Aboites-Molina, Rodríguez, Sueiras, Altamirano-Bustamante, de Hoyos-Bermea and Altamirano-Bustamante. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Adalberto de Hoyos-Bermea, adehoyos@ipn.mx ; Myriam M. Altamirano-Bustamante, myriamab@unam.mx

† These authors have contributed equally to this work

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

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Bibliotherapy: Appraisal of Evidence for Patients Diagnosed With Cancer

Affiliation.

1 DePaul University.
PMID: 30035795
DOI: 10.1188/18.CJON.377-380

An appraisal of the evidence on the efficacy of bibliotherapy on anxiety, distress, and coping in patients with cancer is lacking in the literature. Bibliotherapy is a self-help intervention using a variety of tools, such as self-help workbooks, pamphlets, novels, and audiobooks, to improve mental health. This review identified nine original research articles that examined bibliotherapy as an intervention to alleviate the psychological issues associated with a cancer diagnosis. Data synthesis from these studies provides preliminary evidence that bibliotherapy is an acceptable and beneficial adjunct therapy for patients with cancer experiencing anxiety, depression, and ineffective coping.

Keywords: anxiety; bibliotherapy; breast cancer; cancer; coping; quality of life.

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“How I Approach” the Use of Bibliotherapy in Caring for Children with Oncologic and Hematologic Conditions

Meaghann s weaver.

1. Department of Pediatrics, University of Nebraska, Omaha, NE, USA

2. National Center for Ethics in Healthcare, Washington DC, USA

Brian W Pennarola

3. Department of Pediatric Oncology, Johns Hopkins Hospital, Baltimore, Maryland.

4. Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute (NCI), National Institutes of Health (NIH), Bethesda, Maryland, USA.

Abigail Fry

Lori wiener, associated data.

Bibliotherapy utilizes storybook readings to foster expressive therapy for children. Storybooks represent a readily available yet underutilized support tool in pediatric hematology and oncology care settings. Storybooks can help explain a new diagnosis, treatment plan, body changes, and identity adjustment in a relatable way for patients to then have a safe space to process questions and emotions. This paper serves as a “how to” guide for clinicians to consider bibliotherapy for a patient, select suitable book options, and introduce and incorporate bibliotherapy as part of comprehensive care.

Introduction

Pediatric hematology and oncology providers often face the daunting task of finding suitable words to explain complex and frightening concepts to patients, family caregivers, and siblings. Recently released guidelines for communication with children about the diagnosis of life-threatening conditions urge for clinical implementation of tools to foster and support communication with children. 1 Children’s storybooks have the potential to facilitate conversational engagement for children living with cancer, sickle cell disease, or other serious illnesses and for children coping with impending or recent loss. Storybooks can help prepare a child for future scenarios and can help shape a child’s response to later events.

Story sharing within families and communities represents a primary way of fostering connection, providing guidance, and even affecting behaviors. 2 As an interactive therapeutic intervention, bibliotherapy uses storytelling as a means to enhance self-understanding and promote coping skills for children. 3 – 5 Storybooks have potential to share information about a diagnosis or a treatment plan or a life adjustment associated with illness to expand the child’s knowledge. 6 , 7 Storybooks can also be used to help children understand and deal with relevant emotions, including surrounding death. 8 Books provide a practical, tangible format to help children understand a new diagnosis; address physical changes; communicate their fears, worries, hopes; and find safe ways to process complex emotions.

As the search for relevant and high-quality children’s storybooks may be less readily familiar to hematology/oncology clinicians as compared to academic journal searches, this paper is accompanied by a searchable summary of storybooks relevant to the pediatric blood and cancer patient population ( Supplemental Material 1 ). To develop this online supplemental resource, a systematic search was conducted within two repositories of easily accessible children’s books: (1) Magination Press, the children’s book database of the American Psychological Association, and (2) Amazon.com . Summaries of all books in Magination Press were reviewed by the study team (BP and AF). The collection of children’s books available on Amazon.com (as of March 2021) was reviewed by multiple searches in the Books category using the terms “children” or “teen” and one of the following: “cancer,” “transplant,” “sickle cell disease,” or “hemophilia.”

Summaries of all books within the website were reviewed by the study team; when summaries were not available, additional online searches were completed to review the content of each individual book. Inclusion criteria for books from either database were those on the topic of cancer, hematopoietic stem cell transplantation, sickle cell disease, or hemophilia in pediatric, adolescent, or young adult patients. Exclusion criteria included books identified by the broad search terms that did not pertain to children with diseases of interest, books concerning diseases in adults only, and books with no available summary on the primary website or through secondary internet searches. Identified books were then divided into different groups based on the target age (young child, school age, adolescent, or adult) and the disease discussed. Finally, books were further categorized based on additional key themes: type of book (i.e. story book, novel, fantasy fiction, memoir); target audience (patient perspective or support for family, siblings, or other children); focus on inclusivity (books that exemplify racial/ethnic diversity, books with multilingual versions); focus on spirituality/religion (prayer or attentiveness to existential concerns); and other important supportive elements (explanation of disease/treatment process, emotional support, treatment fears, body image concerns, normalization, and courage).

The purpose of this paper is to serve as a “how to” guide for clinicians caring for children to: (1) consider bibliotherapy for a patient or loved one impacted by the patient’s diagnosis; (2) select suitable book options; and (3) introduce bibliotherapy for children and families as part of comprehensive care. To illustrate “how to” engage bibliotherapy, we offer three hypothetical cases that address common challenges encountered by pediatric patients, their family caregivers, and their support network. Each case suggests a framework for how to implement different storybooks along the timeline of illness.

Exemplar Cases

The onset: explaining the diagnosis and initial steps in treatment.

Ben is a lively 6-year-old boy who loves dogs. He had previously been healthy and active, though he hasn’t felt well for a couple of weeks. After several early pick-ups from his kindergarten class, a weekend on the couch watching his 4- and 9-year-old sisters playing without him, and a couple of pediatric visits, he was noted to be pancytopenic and sent to the emergency room at the children’s hospital. Peripheral blood flow cytometry shows that 70% of the circulating lymphocytes are lymphoblasts, consistent with a diagnosis of Pre-B Acute Lymphoblastic Leukemia (ALL). The oncologist meets with Ben’s parents, who are in a married partnership, to review the diagnosis, discuss the urgency of treatment, and consent to the needed procedures and chemotherapy plan. Together, the oncologist then talks with Ben; he understands that he is sick and needs to stay in the hospital with his Mom and Dad until he is feeling better.

To help explain his new leukemia diagnosis and treatment plan, you offer a few book ideas to Ben’s parents for Ben ( Chemo to the Rescue: A Children’s Book About Leukemia ) and also for his siblings ( My Blood Brother: A Story About Childhood Leukemia and Daniel and His Starry Night Blanket ). Ben’s dad mentions they want to take each day “one at a time” which reminds you to also suggest You and Leukemia: A Day at a Time in accordance with the family’s value statement. The oncologist shared that many patients and families have found that reading books together can be helpful to continue conversations and deepen understanding during such difficult times.

Kianna, a 16-year-old three-sport varsity athlete who enjoys baking cookies with her sisters and writing, recently sustained a left knee injury during volleyball practice. She was advised by her sports medicine physician to avoid any competitive play while the knee was still painful/swollen, but she refused to sit out for the championship game last night. She landed hard on her left leg, felt a snap, and was immediately brought to your children’s hospital emergency room. Given concerning X-ray findings, an MRI was obtained and revealed a destructive bony lesion in the left distal femur that was most consistent with osteosarcoma. A biopsy confirms the diagnosis. Kianna and her grandmother consent to proceed with chemotherapy. Kianna lives with her grandmother as her legal guardian and her three younger sisters. Kianna shares with the social worker that she is most devastated about missing out on future basketball games and normal adolescence. The social worker leverages Kianna’s mention of not wanting to talk about her diagnosis and yet being open to reading about how other adolescents have felt about having cancer by recommending Fear of Missing Out and Brave Enough since both depict teenage athletes. The social worker provided Kianna with a blank purple notebook (the color of her sports jersey) since Kianna shared that she likes to write. The social worker invited Kianna to collect her thoughts about either book in the notebook for personal reflection or for them to discuss together.

Jasmine is a 10-year-old girl who likes going on family bike rides, roller-skating, and playing the clarinet. Jasmine was diagnosed with Sickle Cell Disease shortly after birth. She lives with her mother, two brothers (who both have Sickle Cell Trait), and her father, who also has Sickle Cell Disease and had suffered a stroke when he was 8 years old. Jasmine was very healthy as a younger child, taking hydroxyurea since 2 years of age, and suffering from only milder pain crises that were managed at home. In the past year, however, she has had 8 admissions for Sickle Cell Disease-related complications. While she had previously been bright and bubbly during clinic visits, she has grown more withdrawn. One morning during an admission for a vaso-occlusive crisis, she confides in a child life specialist, stating that she has been struggling at her new school and often feels sad that she must deal with this disease while her brothers and friends are healthy. The child life specialist brings I’m No Different Than You to her next visit with Jasmine and reflected that Jasmine can engage with the book as feels helpful and comfortable to her over time. The child life specialist also reiterated that they could talk about important themes that arise for Jasmine in future meetings with one another.

Navigating the Treatment Course: Support through treatment and disease-related challenges

Books can serve as companions for patients throughout their diagnostic course. As the initial case vignettes introduced reading resources to patients at time of diagnoses or in the context of adjusting to initial treatment or supportive care steps, future scenarios arise which reveal opportunity for books to further explore evolving themes. Bibliotherapy may next serve to support patients through treatments, side effects, and disease-related challenges.

Ben is now several months into treatment. He is doing well from a medical standpoint and should start maintenance chemotherapy in several weeks. He has been having more and more difficulty, however, with accessing his port. The child life specialist provides a copy of the storybook My Port for Ben and helps him to make a coloring book about his own port filled with mindfulness and relaxation strategies. Ben’s parents are fearful about Ben starting back to school as early as next month as they are worried that his classmates may comment on his hair loss for which Ben is already highly self-conscious. The child life specialist offers to contact the school counselor to discuss preparatory reading resources for Ben’s classmates such as The Hare Who Lost Her Hair, The Long and the Short of It: A Tale About Hair, Bald, and When Billy Went Bald . The child life specialist offered to partner the readings with an art activity for further creative exploration and application of the reading material in a group setting.

Kianna has been tolerating adjuvant chemotherapy very well. Due to the pathologic fracture at presentation and the location of the tumor, Kianna’s orthopedic oncologist and medical team feel either a rotationplasty surgery or an above-the-knee amputation would provide the best chance at achieving a cure. Kianna is heartbroken; she’s worried about how she’ll look after surgery, but most afraid that she won’t be able to continue to play the sports she loves. Kianna is worried about “burdening” her grandmother with more doctor visits now that she is referred to the surgical center. She has been struggling to keep up in virtual school and while some of her friends have been supportive, she does admit that she feels “nobody really gets her” and she’s worried about losing her identity as an athlete. Kianna mentions to her social worker that she appreciated getting to think through her feelings through the characters of the prior books. Her social worker suggests Kianna consider reading Finding Balance (by Kati Gardner) about a 17-year-old named Maci facing limb loss due to cancer and Just Don’t Fall due to its leaning on humor as a coping source. Kianna’s social worker offers to read the book chapters along with Kianna so that they can process the main character’s experiences together.

Jasmine has continued to have more frequent pain crises, an admission to the intensive care unit for acute chest syndrome, and a recent brain MRI showing multiple silent cerebral infarcts. Her hematologist discussed the potential benefit of a bone marrow transplant with Jasmine and her family and, fortunately, her 13-year-old brother is a 10/10 match. Jasmine’s parents both agree that they want to proceed with transplant. Jasmine is excited about curing her Sickle Cell Disease but has a lot of questions for the transplant nurse practitioner and expresses some fear about the transplant process. After the consent conference with her parents, the nurse practitioner and social worker bring Neutrophil’s Guide to Stem Cell Transplants for Kids: A handbook for patients and caregivers to review some of the discussion with developmentally appropriate language.

Bibliotherapy Considerations

Familiarity and accessibility.

Clinicians should be familiar with the books they are recommending, ideally having read the book in advance for familiarity with how the storybook situation may apply to the reader. If vetting of a book isn’t possibly through a care team member’s reading, this should be shared transparently. A statement such as, “I have not had the chance to read this book we are finding together myself, though it looks like it may be helpful to support and explore what you are sharing with me. I will welcome your honest thoughts and reflections.” This may empower the book recipient to disagree or challenge certain assertations within the book that may not resonate with them.

To foster familiarity with book options, some clinic settings have designated a resource librarian or an interdisciplinary team member to share about various children’s storybooks during their scheduled monthly journal club. Other clinic settings have created storybook libraries with sample books organized by diagnosis or age group available for interdisciplinary team members to borrow. As most clinicians are accustomed to reading data-driven texts, the transition to soothing images and softer wording has been noted to be a therapeutic reading experience for both the young reader and the young-at-heart clinician.

Resources for locating books include local library databases, the Children’s Literature Comprehensive Collection, the Library of Congress Online Catalogue, Databases of Award-Winning Children’s Literature, WorldCat, and online bookstore searches. Some children’s hospitals have family resource libraries staffed by volunteers or educators able to help access reading materials for families. Most public libraries now have child-specific or even Adolescent Young Adult librarians who may serve as resources to special order requested titles for families via inter-library loan. Children and adolescents may appreciate the option of a hard-copy book or electronic book formats. Some families may prefer the option of audible formats for listening options.

Target Audience

When thinking about bibliotherapy in a clinical context, the individual cognitive and emotional development and literacy of the recipient matters. Family caregivers may have additional insight into the child’s visual or book length preferences. General literacy should be assessed to ensure inclusivity and accessible language in the book selections. The family’s approach to reading is also relevant as some families may read together as part of a normal routine and for other families the idea of reading together may be new. In searching for book titles using the internet and “video” search terms, many books have recordings of someone reading the book. Viewing films of book readings may still be used to impart therapeutic messages and to help the child obtain greater insight into his or her own life circumstances. This option may be particularly helpful to expand linguistic access to books only available in English, as the video close caption subtitles may then be switched to a different language option for the child and family.

Relational dynamics such as the family members’ readiness for open communication or sense of preparedness to answer a child’s follow-up questions after reading the book should be considered prior to sharing the book. Storybooks vary in their target audience in terms of age and role (patient, sibling, classmate, friend) and so an expanded knowledge of the available book audiences should come into consideration. Some clinicians have offered books targeted to different recipients in the same timeframe to foster dialogue among families. For example, a hemophilia specialist may consider sharing a book for parents ( The Gift of Experience II: Conversations with Parents about Hemophilia ), a book for an adolescent sibling ( They will probably ask you--”What is hemophilia?” ), and a book for a younger child ( Just A Boy ) concurrently to support processing facts about hemophilia across lifespans.

Book Topic and Relatability

Next, consider the storybook’s topic as a surplus of books relevant to hematology/oncology diagnosis now exist with subthemes. For example, some books are written specifically for understanding the cellular diagnosis ( The World Inside Us: Courage and the Creepy Cancer) while others explain radiation ( The Science of Cancer ), chemotherapy ( Agent Chemo: Helping Children Fight Cancer Around the World ), bone marrow transplant ( Neutrophil’s Guide to Stem Cell Transplants for Kids: A handbook for patients and caregivers ), or CAR-T therapy ( Car Tea Sell? It’s CAR T-Cell ). Available books include characters with specific diagnosis ranging from anemia ( The Tale of the Cell; Breaking Silence: Living with Sickle Cell Anemia) to brain tumors subtypes ( Warhead: The Story of One Teen Who Almost Saved the World; Princess Khrystle and the Monster Cancer: An Informative Fairytale Version About Brain Cancer in Children) to unknown diagnoses ( The Grim and the Fantastic; How Do You Care for a Very Sick Bear?) .

In selecting books, consider more than just the diagnoses as ideally the book character would be relatable for the reader whether in terms of hobbies, energy/play level, family structure, geography, background, age, worldview or spiritual beliefs or other forms of connectedness. Dialogue about what may be similar or different between the book characters and the reader may foster a sense of application or relatability while honoring individual differences.

The first case, describing a classical presentation of Pre-B ALL, introduces several common challenges encountered by children and their families while undergoing active chemotherapy treatment. Different children or families may find specific aspects most difficult to navigate or explain. While Ben may struggle with repeated hospitalizations or central line access, others may be more affected by isolation from friends or loss of normal routines. Moreover, siblings or same-age friends may struggle with understanding why Ben seems less interested in playing. Within the provided Online Supplemental Material , a search for books written for children with cancer yields 70 books appropriate for young children (under age 8) and an additional 96 books for older school age children. Within this subset, 35 books specifically target siblings and same age peers, offering different ways to support, normalize, and explain a cancer diagnosis to the network of children around Ben.

In the second case, the adolescent patient and her family would likely encounter similar challenges (explaining the diagnosis to the patient, friends, or family; navigating the side effects of treatment; navigating changes in body image or role), but with distinct developmental considerations. While serial blood draws or inpatient hospitalizations might be the most challenging concepts to explain to Ben, fear of the loss of normalcy, changes in role, or alterations in body image may immediately weigh heavier on Kianna’s mind and her athletic identity. Using the provided searchable table and filtering for literature targeted at adolescent patients with a cancer diagnosis, 50 potentially useful books for this scenario are identified. As Kianna grapples further with feelings of isolation or being misunderstood, she may benefit from one of the 26 books written in an adolescent voice.

In the third case, the need for additional supports may ebb and flow with the chronic and shifting nature of sickle cell disease, rising in times of crisis, transition, and uncertainty. While Jasmine may have been able to cope effectively with her chronic illness while younger and healthier, frequent crises and hospitalizations can erode a child’s sense of normalcy, provoke, or exacerbate mental health problems, and lead to dysfunction. Using the provided table, care teams may consider partnering with patients and families in selecting one of the books designated as written for children and adolescents with sickle cell disease. Thematic book categories include: providing explanations of the disease and its complications, emotional support, stories of courage, and voices that normalize a patient’s experience.

Introduction and Application

Bibliotherapy should be introduced to a patient in the context of a trusted relationship, ideally by a family member or by a team member trusted by both the child and family. The adult companion should pre-read the book before sharing with the child in order to obtain familiarity but also to gauge personal and professional comfort with the content, storyline development, word choice.

Storybooks tends to include vivid illustrations to accompany words. Care team members should be mindful when choosing books as some may use terms like “fighting” the illness. Some people find these “fighting a war/battle” type words as motivating, whereas others can find them upsetting – especially children who play videogames where the characters that win battles are the “strongest characters”. For example, children can’t always “fight” hard when they are feeling really sick, etc. Sensitivity to the book’s language and supportive conversations about the content may help personalize the word choice in a helpful way.

If a care team member is reading a storybook together with a patient, permission should first be sought from the child’s guardian as bibliotherapy does represent a clinical care intervention. Table 1 provides suggestions for bibliotherapy engagement.

Practical Suggestions for Bibliotherapy Engagement in Pediatric Hematology/Oncology

Selecting the Book
Setting the Environment
Introducing the Book
Reading Together
Welcoming Dialogue
Responding to Cues
Concluding the Book
Following-Up

Bibliotherapy may be followed by a paired activity such as a creative painting with an art therapist, a song writing with a music therapist, or writing a book together with a child life specialist, social worker, or psychologist. Expressive therapies may help to further explore the book’s theme or content over time. These forms of expression can help shift what was an abstract, external story featuring other characters into a narrative that may become more personal and relatable by the child over time. The child may also wish to shift entirely to another topic or activity that has nothing to do with illness. This is a normal and adaptive reaction. Honoring the child’s directive in play or chosen activity can help to promote individual coping and sense of situational control.

While bibliotherapy often occurs in individual one-on-one reading moments, some pediatric cancer centers have hosted group storybook time shared among pediatric patients with a similar diagnosis. Other centers have hosted virtual or in-person book clubs for adolescents with cancer featuring books or movies such as The Fault in Our Stars or My Sisters Keeper relevant to diagnoses and adjustment.

Bibliotherapy may be considered as a tool for preparing patients for survivorship by exposing patients to characters who have transitioned from being on active therapy. For adolescents, survivorship books options may include meditation and short story reflections ( Chicken Soup for the Cancer Survivor’s Soul: Healing Stories of Courage and Inspiration ) or Surviving Cancer: Real Life Heroes, The Boy Who Defeated Cancer, Blush: How I Barely Survived 17 , and Halfway Normal .

For children able to address end-of-life concerns, reading books, such as The Fall of Freddie the Leaf by L. Buscaglia, The Dream Tree by S. Cosgrove, Waterbugs and Dragonflies by D. Stickney, Lifetimes: The Beautiful Way to Explain Death to Children by B. Mellonie, or The Gift of Gerbert’s Feathers by M. Weaver and L. Wiener, allows school-age readers to begin to process their own feelings about death, spiritual or existential concerns, and the afterlife. A full systematic review of all children’s storybooks which explain death, dying, and bereavement in English, French, and Spanish languages has been published as a resource for families and clinicians with books listed by age categories. 9 Care teams should be particularly thoughtful regarding family religious affiliation or worldview when selecting bereavement books as many use language referencing heaven, angels, or an afterlife. Some families may prefer more universal themes such as nature or life cycles. Teams would be wise to consider books inclusive of additional traditions such as Prayers for My Sister, a recently published book inclusive of Muslim traditions.

Bibliotherapy represents a useful tool to introduce clinical concepts, to foster communication, and to help process feelings and experiences in a safe format. In partnership with interdisciplinary clinical colleagues, bibliotherapy content can be readily translated into expressive therapy and coping support. Bibliotherapy may equip families with the language and character portrayals to engage in difficult, scary, or unknown and vulnerable topics related to diagnosis or treatment or outcomes. By paving the way for such thoughtful or meaningful conversations, storybooks can also help strengthen the relationship between the young listener and family member and allow for greater engagement in the treatment experience.

Supplementary Material

Role of funding/support:.

Dr Weaver contributed to this paper in a private capacity. No official support or endorsement by the U.S. Department of Veterans Affairs or National Center for Ethics in Healthcare is intended, nor should be inferred. For Dr. Brian Pennarola, Ms. Abigail Fry and Dr. Lori Wiener, this work was supported [in part] by the National Cancer Institute Intramural Program of the National Institutes of Health.

Abbreviations

PPC	Pediatric Palliative Care

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Bibliotherapy: Historical and research perspectives

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SYSTEMATIC REVIEW article

Introduction

Search Strategy/Literature Search

Eligibility Criteria

Relevance Assessment of the State of the Art of Bibliotherapy

Semantic Networks as an Initial Compass

Findings From Bibliotherapy and Values

A Hermeneutic Analysis on How Bibliotherapy Works

A Road Map and Compass to Bibliotherapy as a Non-pharmaceutical Intervention

Data Availability Statement

Author Contributions

Conflict of Interest

Acknowledgments

Supplementary Material

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Bibliotherapy: Appraisal of Evidence for Patients Diagnosed With Cancer

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“How I Approach” the Use of Bibliotherapy in Caring for Children with Oncologic and Hematologic Conditions

Brian W Pennarola

Abigail Fry

Introduction

Exemplar Cases

Navigating the Treatment Course: Support through treatment and disease-related challenges

Bibliotherapy Considerations

Target Audience

Book Topic and Relatability

Introduction and Application

Supplementary Material

Abbreviations

Bibliotherapy: Historical and research perspectives

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