MindReading

Mind Reading 2017 - 260 x 323This online toolkit is a collection of resources about using literature to support mental well-being at times of illness. It is particularly aimed at clinicians and medical students keen to incorporate the use of literature in clinical and reflective practice but may be of interest to a range of interested readers, academics and of course to those experiencing illness.  The toolkit has been created collaboratively with clinicians, literature and humanities experts, and expert by experience groups. We are keen to collaborate further in developing this resource with other organisations.

This project explores the patient experience through the prism of literature and personal narrative to inform self-care, patient-centred care, and to support clinicians with regard to reflective and clinical practice while investigating interactions between literature and medicine. Do doctors and patients speak the same language, and how can we use narrative to bridge the evident gaps? This project explores the use of narrative in medicine and has an interdisciplinary focus. 

This collaboration is led by Dr. Elizabeth Barrett and the UCD Child and Adolescent Psychiatry and Dr. Melissa Dickson at the University of Birmingham with the Diseases of Modern Life Project at St Anne’s College, Oxford.
Our activities comprise a series of explorations around the central theme of literature and mental health. The events are brought together by their intent to explore the best ways of drawing on the insights of historical and literary research in contemporary medical practice and the insights that medical practice lends to the reading of literary texts. We have now held two successful interdisciplinary MindReading events.
The first MindReading conference in 2017 was held at UCD and the Lexicon Library in Dublin.

MindReading: Mental Health and the Written Word Conference 2017

These sources were collected mainly from a conference about literature and mental health titled, MindReading: Mental Health and the Written Word. The titles and authors listed were either discussed in the conference, or suggested by participants after the conference. This is not an exhaustive list; we’re delighted to hear about further useful links and resources via the feedback form provided. 

This conference was held in March 2017. This interdisciplinary event sought to locate and explore productive interactions between literature and mental health both historically and in the present day. Participants from various disciplines explored together the interfaces between literature and mental health, shared useful resources, and engaged in critical discussion about literature as a point of therapeutic engagement.

Speakers on the day included clinicians from a range of medical fields, medical humanities professionals and expert service users. The conference also had various small group workshops which were taught by the Diseases of Modern Life team, CBI Book Doctors, REFOCUS and the Dublin City Libraries HEAL project team. All are experts in their respective fields but are interested in viewing health from a range of perspectives. Our keynote speakers kindly agreed to be recorded and their talks are available here

Mindreading 2017 Conference

Links to the 2017 conference:

Wordpress page for the 2017 conference is available here: https://literatureandmentalhealth.wordpress.com/page/
Conference keynotes are available here: http://www.ucd.ie/medicine/mindreading/
A short video from participants is available here: https://literatureandmentalhealth.wordpress.com/page/

Conference programme 2017

 

Mindreading Installation at the Lexicon Library 2017

From 4th March to 29th April 2017, we curated an exhibition at the Lexicon wit Colleagues from the University of Oxford and in Collaboration with Dr. Marian Keyes, Senior Librarian at the Lexicon. The Exhibition was curated by Dr. Melissa Dickson and Dr. Elizabeth Barrett

This was a wonderful opportunity to explore ideas about the advent of childhood and ideas about mental health of Children and young people in this public space, which has very significant daily footfall, and was an inclusive, engaging public project. Programme available here.

This was a wonderful experience, locating these posters in a public space. We also had collaboration with the College of Psychiatrists, who loaned some artwork from their collection for the exhibition, exploring expert users use of art in mental health.

Our title was: ‘The Diseases of Modern Life: Changing Perspectives on the Mental Health of Young People from the Nineteenth Century to the Present Day’. It was located on Level 4, dlr LexIcon. The description of the exhbition was used in Lexicon programming, websites etc and is as follows: This exhibition is a joint collaboration between St Anne’s College Oxford and UCD Child & Adolescent Psychiatry (UCD-CAP). ‘The Diseases of Modern Life: Nineteenth-Century Perspectives’ ( an ERC funded project based at St. Anne’s College, Oxford, investigating nineteenth-century literary, and medical understandings of stress, overwork and other disorders associated in the period with the problems of modernity). This aspect of the exhibition focuses on child health and changes to the education system leading to the overwrought or exhausted school child – cramming too much into their brain at the expense of their physical health. Works by Charles Kingsley and Charles Dickens and others are highlighted. UCD Child & Adolescent Psychiatry (UCD-CAP) are an interdisciplinary group of clinicians, lecturers and researchers. They work collaboratively, through research, education, advocacy and communication, to improve the mental health and well-being of children in Ireland and internationally. This aspect of the exhibition will provide an overview of mental health disorders in children in Ireland today.

 

UCD Child and Adolescent Psychiatry present Mindreading: Mental Health and the written word- at UCD Festival Day 2017

Together with our colleagues at the Diseases of Modern Life Project, we developed a poster installation highlighting key ideas in children's mental health. The theme explored was ‘The Diseases of Modern Life: Changing Perspectives on the Mental Health of Young People from the Nineteenth Century to the Present Day’. We displayed posters exploring the history and literature, and changing understanding of,  Childhood and the Mental Health of Children from Victorian times to the present day at the UCD Summer festival 2017.  

This was in parallel to a panel discussion around mental health in 2017 in Ireland with Prof Fiona McNicholas, Prof Barbara Dooley, Ass. Profs Blanaid Gavin and Elizabeth Barrett

 

MindReading: Mental Health and the Written Word Conference 2018

Our 2018 conference was held at the University of Birmingham on 18th and 19th June. Key questions for this event were: do clinicians and patients speak the same language? How might we bridge the evident gaps in communication? How can we use narrative to foster clinical relationships? Or to care for the carers? How does illness impact upon our sense of self?

Participants have provided lots of information and interdisciplinary resources over the past two years. This includes information about, and links to, tools they use in their personal lives when encountering illness, tools used in academic settings, and tools used in clinical and in reflective practice. This interdisciplinary “toolkit” is a live document, which we hope to continuously update.

Links to the 2018 conference:

Wordpress page for the 2018 conference is available here: https://literatureandmentalhealth.wordpress.com/2018-conference/
Wakelet page for the 2018 conference is available here: https://wakelet.com/wake/be6b73e3-373d-4e8a-b18b-7c6447a93809

We were delighted that the Action On Postpartum Psychosis (APP) group participated in Mindreading 2018. As part of the Writing yourself Health workshop they developed and delivered, Sue McKendrick composed a poem for the event:

A Healing Sonnet
The wound lies deep
but there’s no blood, no stitch,
no scab; it does not weep
or leave a lingering itch.

When trauma festers in the mind,
consuming your thoughts, twisting in knots,
what healing actions or words might we find?
There’s no cream or cloth to wipe away the blot.

This wound can’t be dressed to heal in days,
but slowly reconnects in a jigsaw compilation.
Cool your feet in sweeping waves.
Relax by a crackling fire. Seek your inspiration.

What words, whose words might refocus this daze?
The scent of lavender wafting in the Summer haze.

-Sue McKendrick

This toolkit has been developed as part of a SSRA project in 2017 by WanTing Yew and updated in 2018 by Dana Alalwan, supervised by Associate Professor Elizabeth Barrett and the UCD Child & Adolescent Psychiatry group.

These resources have been identified by conference attendees and speakers as useful adjuncts to teaching, reflective practice or understanding mental health issues.  The information contained above is not intended as a substitute for medical advice.  The above tools are not intended as a comprehensive collection of relevant materials and inclusion of items does not imply that these have validated or endorsed by the UCD School of Medicine.

 

How to use Literature for General Wellbeing and Clinical Practice

Literary genres used in medicine are multiple and versatile, there are also various methods of using literature.

Genres:

  • Autobiographies and memoirs by patients, carers, family and physicians
  • Self-help books
  • Poetry
  • Fiction
  • Research works about applications and effectiveness of literature in medicine

Methods

  • Books sought out autonomously
  • Through physician’s recommendation, coupled with reflective discussions (McCullis, 2012)
  • Literature electives incorporated into medical curriculum
  • Reading groups and workshops (Longden et al, 2015) (Ratcliffe, 2016)
  • Apart from reading literature, people also use creative writing to illuminate the patient experience (Aronson, 2000). This does not exclude writing about other forms of art (O’Neill, 2010) (Harris, 2002-2004)
  • Literature obtained through search engines and reading lists

Benefits

  • For patients: Can be autonomous in managing their problems. (McCullis, 2012) (HSE, 2017)
  • For doctors: Act as a tool for reflective practice and clinical empathy-contemplate role and implications of medicine, understand the social interactions between doctors and society. (Oyebode, 2010) (Charon, 2001)
  • All readers: personal development and wellbeing. (McCullis, 2012)
  • Gain insight into the experiences of others, the stress of the physician, the frustrations of the patient, the isolation of carers and families etc…(Oyebode, 2010) (Billington, 2016)

As we all know, many authors have described the use of literature in reflection about self, the practice of medicine, the patient experience and the therapeutic use of literature. Many efforts were put into identifying useful texts for busy clinicians. There are several genres of literature used in medicine.  One approach may be the use of self-help books which are either recommended by doctors or independently sought out by patients. Other approaches may include autobiographies of the illness experience, which help readers, physicians and patients alike, to gain insight into subjective nature of the illness experience. Apart from reading literature, people also use creative writing and literature to illuminate the patient experience; the list about applications of literature can go on and on…There is also research around the effectiveness and different applications of literature in medicine.

Narrative medicine was introduced as a humane model for medical practice which requires narrative competence: “the ability to acknowledge, absorb, interpret, and act on stories and plights of others”. One of the methods to achieve narrative competence is through close reading of literature. This form of practice seeks to build a more empathic engagement between patient and physician, hence achieving a more productive therapeutic interaction (Charon, 2001). Not only that, reading literature can spur critical and creative thinking about the role medicine can play in contemporary culture (Oyebode, 2010)

Reading autobiographical accounts of the illness experience reminds physician readers about the unique individuality of the patient amidst the waves of objective biomedical reports (Oyebode, 2001)(Aronson, 2017). Reading these autobiographies allows readers to gain insight into the experience from the author’s point of view; in other words, to gain experiences without living through them. Consequently, this knowledge allows readers to have a greater capacity for empathy towards the people involved, patients and doctors alike, as well as being informed about how to behave appropriately around them. Apart from autobiographies, fiction also plays a role in reflective practice. It gives readers the unique opportunity to contemplate unconventional ideas, explore unusual scenarios and implications in medicine (McFarlane, 2017).

Close reading of literature can be done individually and autonomously by both patient and physician readers. In addition, patients who are prescribed bibliotherapy are encouraged to discuss about the reading experience with the physician.

Additionally, literature workshops have been used with healthcare professionals where the group does close reading of specific texts and engage in reflective discussions. In addition, literary studies are also integrated into medical education programmes; such as poetry courses in University of Birmingham, and medical humanities subject electives in Trinity College Dublin.

In conclusion, literature has an invaluable capacity to enrich medical education, clinical practice, and personal wellbeing. The field of using literature in health is a diverse area and as a clinician it can be hard to know where to start.

As starting points, participants in the project identified some of the text below about how people use literature

  • Josie Billington, Is Literature Healthy? -the first book of the Literary Agenda series. The author provides an introduction of the medical humanities, explores the definitions of illness from various perspectives, and then contemplates models of literary reading.
  • Borys Surawicz, Beverly Jacobson, Doctors in Fiction: Lessons from Literature -This book is a compilation of reflective notes by multiple physicians from reading specific literature, contemplating how people view the medical profession
  • Femi Oyebode, Mindreadings: Literature and Psychiatry -This book explains what literature can do for medical education and practice, with a focus on psychiatry.
  • Art and Images of Psychiatry -A webpage featuring a compilation of essays written by a Professor of Psychiatry and published in JAMA Psychiatry between 2002 and 2014. The author refers to specific visual arts pieces in each of his essays where he explores the role of creative art in representing health issues.
  • Seamus O'Mahony, Against Narrative Medicine  (2013) “This essay aims to provoke debate on how and what the medical humanities should teach. It argues that the field has been dominated (to its detriment) by two misguided movements, postmodernism and narrative medicine, and that it should be redirected from utilitarian aims towards the goal of exposing medical students to a climate of thought and reflection.”-abstract 

Burnout

Schwartz Rounds

Inter-Professional Education

Suggested literature for Specific Problems

The Royal College of Psychiatrists and other helpful websites identify useful resources for mental wellbeing. Several user and advocacy group also identify these. Below we have listed some of the supportive literature (books, poems and essays) identified by our conference participants.

Death and Grief

  • Thomas Lynch, The Undertaking: Life Studies from the Dismal Trade -Work memoir of a funeral director
  •  Seamus O’Mahony, The Way We Die Now -Doctor’s take on death and dying

Anger

  • Warwick Pudney and Éliane Whitehouse, Volcano in my Tummy -Children’s book: a guide for children and adult carers to understand and manage children’s anger –age 6-13

Sadness 

  • John Keats, Ode to Melancholy -a poem about the poet’s perception of melancholy, with references to ancient Grecian characters and ideals

Depression

  • Jim Lucey, In My room (alcohol dependence, OCD, PTSD) -a psychiatrist’s reflective account of his patients’ journeys to recovery
  •  Matt Haig, 12 Reasons to Stay Alive -Patient’s memoir and written guide for readers
  •  Lee Brosan and Brenda Hogan, An Introduction to Coping with Depression -self-help book written by GPs
  •  Christopher Williams, Roch Cantwell and Karen Robertson, Overcoming Postnatal Depression: A Five Areas Approach -CBT based self-help book co-written by mental healthcare professionals
  •  Anne Sexton, Live or Die -a collection of poems depicting the author’s struggles with post partum depression and suicidal thoughts (individual poems available online)
  •  Lloyd Tone, The Princess and the Fog -Children’s picture book about depression –age5-7
  •  Shaun Tan, The Red Tree -children’s picture book about dealing with, and overcoming depression –age 7+
  •  Roddy Doyle, Brilliant – children’s book: provides a child accessible explanation of depression and how to overcome it. –age 9+

Stress

  • Jonathan Bate, Paula Byrne, Sophie Ratcliffe and Andrew Schuman, Stressed, Unstressed -an anthology composed by ReLit, a selection of classical poems for casual reading or stress relief

Panic

  • Áine Tubridy, When Panic Attacks -a self-help guide written by a specialist doctor in psychotherapy.
  •  Charles Young, An Introduction to Coping with Panic (2007) -a self-help book written by a practitioner

Mental Health

  • Aquilina, J. and Vincent, K. (2011). Mindfields. Port Adelaide, SA: Ginninderra Press.
  • Sederer, L. (2015). The Family Guide to Mental Health Care. W. W. Norton & Company.
  • Letran, J. (2016). I Would, but my Damn Mind Won't Let Me. A Healed Mind, LLC.

Anxiety

  • Gillian Butler, Overcoming Social Anxiety and Shyness (2009) -CBT self-help book for patients and carers written by a clinical psychologist
  •  Ronald M. Rapee and Lisa Lampe, I Think they Think: Overcoming Social Phobia (2006) -a DVD-ROM type, self-help CBT guide developed by doctors
  •  Virginia Ironside, The Huge Bag of Worries -Children’s book depicting the main character’s anxieties and how she faces them. –age 5+
  •  Anthony Browne, Willy and the Cloud -children’s book about worry and anxiety –age 3+
  • Bourne, E. (2011). The anxiety & phobia workbook. New Harbinger Publications.

Mental Illnesses

  • Cunningham, D. (2011). Psychiatric Tales. 1st ed. Bloomsbury USA

Burnout

  • Procter, A. and Procter, E. (2013). The Essential Guide to Burnout. 1st ed. First Edition 2013.
  • Maslach, C. (2015). Burnout. Los ALtos, CA: Malor Books.
  • Scott, S. (2017). How to Prevent Burnout. 1st ed. Filament Publishing Ltd.
  • Quesada, D. (2011). Buddha in the Classroom. New York: Skyhorse Publishing, Inc.

Bipolar Disorder

  • Kay Redfield Jamison, An Unquiet Mind -a clinical psychologists’ memoir about her firsthand experience of bipolar disorder

Cancer

  • Ruth Picardie, Before I Say Goodbye: Recollections and Observations from One Woman's Final Year - a collection of narratives about the author’s experience with breast cancer. The book includes the authors published memoirs in a magazine, correspondence by friends and family, as well as reflections from the author’s sister and husband.
  •  Arthur Frank, At the Will of the Body: Reflections on Illness –Author’s (medical sociologist) memoir about the transformation from person to patient through firsthand encounters with serious illness, heart attack and cancer.
  •  Christopher Hitchens, Mortality - Based on the author’s columns in Vanity Fair that chronicled his year-and-a-half battle with esophageal cancer
  •  Anatole Broyard, Intoxicated by my Illness - a collection of irreverent, humorous essays concerning the ordeals of life and death, many of which were written during the battle with cancer that led to his death in 1990.
  •  John Diamond, C: Because Cowards Get Cancer Too-a journalist patients’ cancer memoir
  •  John Diamond, Snake Oil and Other Preoccupations -a cancer patient’s "uncomplimentary look at the world of complementary medicine", the second half of the book features a selection of the author’s previous written works. 

Dyslexia

  • Philip Schultz, My Dyslexia – the prize-winning poet author details the lifelong struggle involved.

Stroke

  • Robert McCrum,  My Year Off – Author’s memoir about his recovery after a stroke

ALS

  • Roni Rabin, Six Parts Love - a biography written by the author and his daughter about himself and their whole family from the time he discovered he had ALS (Lou Gehrig's disease)
  • D. Rabin, P.L. Rabin and R. Rabin, ‘Occasional notes. Compounding the ordeal of ALS: Isolation from my fellow physicians’, N Engl J Med, 307.8 (19 August 1982): 506-9.-Reflections on the physician’s experience as a patient.

Schizophrenia

  • Olivier Martini and Clem Martini, Bitter Medicine -a graphic memoir about a family’s experience of schizophrenia
  • Verteuil-Holliday, C. (2016). Paradise plums and cocoa beans. 1st ed. Heddon Publishing.

Dementia

  • Rachel Hadas, Strange Relation: A Memoir of Marriage, Dementia and Poetry -a poet author’s memoir of her husband’s descent into dementia, how it affected the family, and how she used literature to help her get through it.

Stigma

  • Alan Bennett, Untold Stories an autobiography of a performer and writer-there was much discussion of the silence and the untold stories that accumulate around mental illness, and how this feeds into stigma.
  •  Susan Sontag, Illness as a Metaphor - a “work of critical theory in which she (the author) challenges the victim-blaming in the language often used to describe diseases and those who suffer from them” (Wikipedia)

Health Literacy

  • Eric Topol, The Patient Will See You Now: The Future of Medicine is in Your Hands (2015). -A physician’s guide to patient empowerment in healthcare interactions.

Behaving with the Ill

  • Julia Darling, How to Behave with the Ill -a poem by a cancer patient for carers, family and friends
  • Agnes Higgins and Alan West, Narratives of Recovery from Mental Illness: The Role of Peer Support -this books features personal recovery journeys of 26 GROW members, highlighting the importance of social interactions, peer and community support.

Hospitalization

  • Elizabeth Jennings, A Mental Hospital Sitting Room -the poets’ experience as a psychiatric patient
  •  Elizabeth Jennings, The Hospital -the poets’ experience as a psychiatric patient

Resources for Children 

  • Warwick Pudney and Éliane Whitehouse, Volcano in my Tummy -Children’s book: a guide for children and adult carers to understand and manage children’s anger –age 6-13
  • Virginia Ironside, The Huge Bag of Worries -Children’s book depicting the main character’s anxieties and how she faces them. –age 5+ 
  • Anthony Browne, Willy and the Cloud -children’s book about worry and anxiety –age 3+
  • Shaun Tan, The Red Tree -children’s picture book about dealing with, and overcoming depression –age 7+
  • Lloyd Tone, The Princess and the Fog -Children’s picture book about depression –age5-7
  • Roddy Doyle, Brilliant – children’s book: provides a child accessible explanation of depression and how to overcome it. –age 9+
  • Holloway, A. (2006). The Bipolar Bear Family. Bloomington, IN: AuthorHouse.

Bibliotherapy Schemes

Bibliotherapy is the recommendation of books by doctors to patients in their care. Some evidence has shown the efficacy of prescribing books (HSE, 2017) (NHS wales 2017). Libraries also have a critical role in this, as patients will often seek information online and in local libraries about a range of illnesses. Where prescribing schemes exist, libraries may provide patients with the prescribed books.

Many bibliotherapy schemes provide reading lists for different life stages and major problems of emotional distress, such as anger and self-esteem. There are various bibliotherapy schemes developed by health organizations and libraries. These bibliotherapy schemes are supported by the organisations that published them, who have selected with a team of professionals from healthcare and community service recommended books they feel will be helpful.

Several authors recognise that bibliotherapy has its own set of benefits and limitations. It is a non-intrusive intervention and is therapeutically effective for mild to moderate mental illnesses (McCullis, 2012) (Jack and Ronan, 2008). Bibliotherapy is only useful for patients who have a good standard of literacy and are interested in the use of literature in this way. Also, self-help books have a myriad of quality standards, and prescribed books need to be of high quality to be effective (HSE, 2017) 

For more details, see the Professional’s Guide to Bibliotherapy on the HSE website. 

  1. Power of Words Booklist (2009)- joint effort between Library Council of Ireland, Health Service Executive and Irish College of General Practitioners. For details see: http://www.dublincity.ie/main-menu-services-recreation-culture-dublin-city-public-libraries-and-archive-library-services 
  2. Living with Mental Illness: Books, Stories and Memoirs- bibliotherapy section in AACAP (American Academy of Child and Adolescent) website.
  3. Read Your Mind book project: a self-help and mental health initiative by Offaly county libraries
  4. Reading Well- a nationwide scheme for self-help reading in the UK
  5. Overcoming- this website provides a list of CBT self-help books
  6. Children’s Books Ireland reading guide 
  7. NHS wales bibliotherapy and book prescription scheme 
  8. Dlr LexIcon: library in Rathdown, Dublin
    • Dlr LexIcon Healthy Reading List-child and family
    • Dlr LexIcon Healthy Reading List-adult 
  9. Jigsaw: a support service for young people in Dublin
  10.  “Your Good Self” scheme- a joint initiative between the HSE and Cork County Library and Cork City Libraries.It provides book recommendations and other resources for emotional wellbeing

Evaluations of Bibliotherapy:

Organisations, Services and other Online Resources

Websites and Apps

 

Organisations and Services