Reading and Chronic Pain: DCMS/CASE programme Josie Billington, Centre for Reading Research, University of Liverpool Kate McDonnell, The Reader Organisation Andrew Jones, Royal Liverpool Hospital Louise Humphreys, Health Sciences, University of Liverpool

The Reader Organisation Award-winning charity. Pioneered Get into Reading programme GIR groups nationally in community and health contexts Informal weekly reading group, up to 12 people, 1-2 hours Distinctive model - shared reading of stories, novels, poems with spontaneous pauses for discussion ‘Classic’ literature (not self-help books) Trained project worker

Chronic Pain and Depression Dowrick, C., Billington, J., Robinson, J., & Hamer, A. (2012) Get into Reading as an intervention for common mental health problems, Journal of Medical Humanities, 38: Chronic pain resembles depression, and the relationship is intimate. Pain is depressing, and depression causes and intensifies pain. People with chronic pain have three times the average risk of developing psychiatric symptoms — usually mood or anxiety disorders — and depressed patients have three times the average risk of developing chronic pain.

Objectives To investigate whether shared reading and discussion of literature was associated with the relief of chronic pain symptoms? To investigate whether shared reading and discussion of literature was associated with changes in the mental health and well-being of chronic pain sufferers. To explore the meaning of attending a GiR group for people with chronic pain. To explore the logistics of running a GiR group for people with chronic pain.

Method Baseline measures for 1 month prior to commencing the group. In the case series, the experimental variable consisted of weekly attendance over 3 months, at the GiR group, within a modified ABA design (Jones, 2005). GIR groups were held within the hospital and run by a TRO project worker. A focus group was conducted at the end of the shared reading programme, to explore the meaning and impact upon participants’ pain along with an opportunity for them to suggest logistical improvements to better meet their needs.

Measures A range of measures were utilised which included twice daily pain ratings (0-10) throughout the study and pre- post assessments of mood, general health, function, social support and pain using standardised measures Baseline (A) Reading Group 12 weeks (B) Baseline Assessments Assessments Assessment Wk1wk6 & 12wk 16 Twice Daily Pain ratings

Focus Group Key Themes 1 & 2 Reading Shared reading central. Preference for challenging texts – greater distraction from pain and sense of accomplishment. Changes in reading habits; authors, genres, amount and use of reading, to cope with pain and isolation. Group Beneficial in terms of coping with pain, social distraction Offered access to support and advice from fellow sufferers (re medication, side effects) “I like to compare myself with others in the group....my own problems don’t seem so bad compared to you”.

From I Know Why The Caged Bird Sings The free bird leaps on the back of the wind and floats downstream till the current ends and dips his wings in the orange sun rays and dares to claim the sky. But a bird that stalks down his narrow cage can seldom see through his bars of rage his wings are clipped and his feet are tied so he opens his throat to sing. Maya Angelou

Focus Group Key Theme 3 Changes in quality of life value of having a focus/meaning was pivotal ripple-out effects, including increase in exercise, effort to get dressed, sharing reading experience with friends, relatives and neighbours. “ it’s nice to get yourself all dickied up”. “I wash my hair before I come” “I’d still be in my pyjamas if I wasn’t here”. “I feel isolated and don’t want to be a burden so I don’t talk to anyone else apart from here, about these feelings”

‘Ken’ In the focus group he reported that although he was still waking at night he now could use this time functionally. “I used to be crying at night sometimes...but now it’s given me a lift, I feel better and I can use the time better... to read instead”. He also found the academic challenge of the literature was very important to him personally “ I never ever would have read Chekhov before”.