Every picture tells a story
Well-designed picture books can help nurses to approach difficult subjects with vulnerable patients. Layla Haidrani reports.
Well-designed picture books can help nurses to approach difficult subjects with vulnerable patients. Layla Haidrani reports
Books Beyond Words was set up in 1989 to create books which would empower people who have learning disabilities who struggle with the written word.
The books were inspired by Baroness Sheila Hollins's experience as a psychotherapist who couldn’t find resources to help her communicate with a non-verbal patient about his father's death.
The first titles, When Mum Died and When Dad Died, were published during the company’s first year. Now there are more than 50 titles, as well as a newly launched app covering themes of abuse, bereavement, depression, going into hospital, and love and relationships.
Great Ormond Street Hospital consultant nurse Jim Blair has used Books Beyond Words for 16 years with people coming to hospital as outpatients for appointments, to have diagnostic and treatment procedures, and for admission to wards. He says using the books helps patients to communicate their understanding of a particular issue and what they are worried about.
‘The books build someone’s own journey through health,’ says Mr Blair. ‘Giving the person with learning disabilities a book is a powerful way of showing they are leading the interaction and shaping where it will go.’
While he says the level of communication varies with each person, seeing the pictures is essential in allowing the patient to demonstrate engagement through facial cues, verbal gestures, language and physical movement.
In this way the picture format becomes a two-way conversation, where the nurse can, for example, prepare patients for blood tests or for a court appearance, and understand how the situation makes them feel, without being distracted by text.
'Many people with learning disabilities believe that books aren't for them,’ says Books Beyond Words executive director Danny Curtin. ‘But with a visual story, it doesn't matter about word literacy.'
He encourages nurses and other healthcare professionals to view the books as a great way to place people at the centre of their own decision making. 'As soon as you strip out words and relinquish control to the patient, it gives them confidence' he says.
Patient care plan
For Jane Williams, who is the interim unit manager in the therapeutic support services at Bryn y Neuadd Hospital, Llanfairfechan, Wales, Books Beyond Words resources have become integral to the care plans of a number of patients.
‘They have become invaluable in helping the therapeutic support staff to help patients to contribute to their care,’ she says. ‘We are eliciting something which is personally meaningful to the reader. A person may be able to reframe themselves and present an empowered version of who they are now,' Ms Williams says. 'In a group, there is a sense of connectedness with other people. Our book groups and one-to-one sessions are an excellent vehicle to connect with other people. The shared development of a narrative can flatten the power differences which exist between us.'
Learning disability nurse Ifan Williams, a colleague of Jane Williams, makes frequent use of Books Beyond Words resources in his clinical work: 'They give everyone the opportunity to have an equal chance of being heard and taking centre stage, delivering their own personal story...for a change.’
How staff at Bryn y Neuadd Hospital in Llanfairfechan, North Wales use the books
- Assessing insights into diabetes.
- Establishing degrees of mental capacity in consenting to take a medication.
- Supporting people through the changing trajectories of health and illness in a wide range of subject areas.
- Therapy to help with bereavement, difficulties with anger and getting upset, depression and poor mental health.
- Transition through services.
- Supporting patients’ involvement in their care.
- As a social context for patients’ voices.
- To talk about general health subjects in groups or one-to-one.
- To talk about more specialist subjects in groups or one-to-one.
- To evaluate care as part of Care Quality Commission inspections.
- Co-designing and co-providing training to evaluate care and treatment plans as part of the care and tretment review programme in England.
- Given training across local health board/trusts in Wales and the rest of the UK.
Each book undergoes an expert-based co-production process in which around 100 people with learning disabilities read each one before the story and artwork are finalised. One person with a learning disability who was involved in the process said: ‘They really involved us in talking about the books. They say “Nothing about us without us” – I find that Books Beyond Words is part of that.’
Mr Curtin stresses the importance of the Books Beyond Words resources in their role in health promotion. Research into the benefits of a leaflet about testicular cancer – How to Look After my Balls – found that a group of men who had the leaflet had greater knowledge about self-checking after six months in comparison to those who did not have access to it. As Mr Curtin argues: ‘We're levelling the playing field in regards to healthcare.'
This year Books Beyond Words will publish two books about belonging in the community and a church community, and in 2018 there will be a series of books on the subject of work.
Meanwhile, the Books Beyond Words team remain dedicated to supporting people with learning disabilities in the area of healthy living and encouraging health professionals to help people with learning disabilities to understand complicated subjects.
How to read a Books Beyond Words book
There is no right or wrong way to read to read a Books Beyond Words book. Remember it is not necessary to be able to read the words.
Some people are not used to reading books. Encourage the reader to hold the book themselves, to turn the pages at their own pace and read the story they see in each picture.
Whether you are reading the book with one person or with a group, encourage people to tell the story in their own words. You will discover what each person thinks is happening, what they already know and how they feel. You may think something different is happening in the pictures yourself, but that does not matter. Wait to see if their ideas change as the story develops. Do not challenge the reader(s) or suggest their ideas are wrong.
Some pictures may be more difficult to understand. It can help to prompt the people you are supporting, for example by asking:
- Who do you think that is?
- What is happening?
- What is he or she doing now?
- How is he or she feeling?
- Do you feel like that? Has it happened to you/your friend/your family?
You do not have to read the whole book in one sitting. Allow people enough time to follow the pictures at their own pace.
Some people will not be able to follow the story, but they may be able to understand some of the pictures. Stay a little longer with the pictures that interest them.