An Evaluation of a Literature-Based Intervention for People with Chronic Pain
Dr Josie Billington, Centre for Research into Reading, Information and Linguistic Systems (CRILS), University of Liverpool Dr Anne-Louise Humphreys, School of Health Sciences, University of Liverpool Kate Mc Donnell, The Reader Organisation Andrew Jones, Royal Liverpool University Hospitals NHS Trust
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CONTENTS Acknowledgements…………………………………………………………..…………………………………..…………...5 Executive Summary…………………………………………………………………………………………….. …….........6 An Evaluation of a Literature Based Intervention for People with Chronic Pain...................10 Introduction............................................................................................................................10 1. Background to the Study ..................................................................................................11 1.1. Chronic Pain….…………………………………………………..….…………………………………….….11 1.2. The Reader Organisation……...............................................................................12 1.3. The Reader Organisation and Chronic Pain…………………………………………………….13 1.4. Centre for Research into Reading, Information and Linguistic Studies……………14 2. The Study............................................................................................................................16 2.1. Aims and Objectives............................................................................................16 2.2 The Intervention...................................................................................................17 2.2.1.The Model: Get into Reading…………………………………………………………….17 2.2.2. Get Into Reading for people with Chronic Pain…………………………………18 2.2.3.Conduct of Sessions and Choice of Reading Material………………………..19 2.3. Research Method…………………………………………………………………………………………….20 2.3.1. Approach…………………………………………………………………………………………..20 2.3.2. Design……………………………………………………………………………………………….21 2.3.3. Participants and Recruitment……………………………………………….…………..21 2.3.4. Measures……………………………………………………………………………………….…22 2.3.5. Timeline…………………………………………………………………………………….……..23 2.3.6. Analysis………………………………………………………………………………………….….24 2.3.7. Ethics…………………………………………………………………………………………………24 3.Results……………………………………………………………………………………………………………………….……25 3.1. Focus Group Findings……………………………………………………………….…………..………….25 3.1.1. Community & Social Connections……………………………….………..……………25 3.1.2. Literature and Pain………………………………………………………..………………….27
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3.1.3. Mood……………………………………………………………………….…………………….….28 3.1.4. Quality of life………………………………………………………………………….…….…..28 3.1.5. Customising the sessions…………………………………………………………………..29 3.1.6. Focus Group Summary………………………………………………………………………30 3.2.Exemplar Case Studies……………………………………………………………………………….….….31 3.2.1. Steph………………………………………………….……………………………………………..31 3.2.1.1. Attendance………………………………………………………………………….31 3.2.1.2. Context to Pain……………………………………………………………………31 3.2.1.3. Pain Diary……………………………………………………………………………31 3.2.1.4. Health & Functional Measures……………………………………………33 3.2.1.5. Social Support……………………………………………………………………..34 3.2.1.6. Personal Impact of Get into Reading…………………………………. 35 3.2.1.7. What Worked About the Group?............................................36 3.2.1.8. Case Summary……………………………………………………………………37 3.2.2. Bet and Bob……………………………………………………………………………………..37 3.2.2.1. Attendance…………………………………………………………………………37 3.2.2.2. Context to Pain…………………………………………………………………..38 3.2.2.3. Pain Diary…………………………………………………………………………..38 3.2.2.4. Health & Functional Measures……………………………………………40 3.2.2.5. Social Support……………………………………………………………………..41 3.2.2.6. Personal Impact of Get into Reading.………………………………….42 3.2.2.7. What Worked About the Group?............................................43 3.2.2.8. Case Summary…………………………………………………………………….43 3.2.3. Ken …………..……………………………………………………………………………………..44 3.2.3.1. Attendance…………………………………………………………………………44 3.2.3.2. Context to Pain…………………………………………………………………..44 3.2.3.3. Pain Diary…………………………………………………………………………..44 3.2.3.4. Health & Functional Measures……………………………………………46 3.2.3.5. Social Support……………………………………………………………………..47 3.2.3.6. Personal Impact of Get into Reading…………………………………..48
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3.2.3.7. What Worked About the Group?...........................................50 3.2.3.8. Case Summary…………………………………………………………………….51 3.3. Project Worker’s Reflections……………………………………………………………………………52 3.4. Pain Consultant’s Reflections…………………………………………………………………………..58 4. Discussion……………………………………………………………………………………………………………………….60 5. Conclusions……………………………………………………………………………………………………………………..64 6. References………………………………………………………………………………………………………………………65 7. Appendices………………………………………………………………………………………………………………………68 7.1 Appendix 1. Participant Information Sheet…………………………………………………………68 7.2 Appendix 2. Participant Consent Form (Staff)……………..................…………………….72 7.3 Appendix 3. Confirmation of Ethical Approval.......................................................73 7.4. Appendix 4. Measures Booklet…………………………………………………………………………75 7.5. Appendix 5. Daily Pain Record………………………………………………………………………….91 7.6. Appendix 6. Interview Guide…………………………………………………………………..………..92 7.7. Appendix 7. Focus Group Schedule…………………………………………………………………..95 7.8. Appendix 8: Record of material covered in reading groups.................................96
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Acknowledgements We would like to thank all participants who took part in the study for their commitment and their willingness to engage with both the reading group and the research process. Thanks are also due to: The Reader Organisation for taking part in the study; Professor Martin Leuwer, at the Royal Liverpool NHS Trust Hospital and University of Liverpool, for inviting the study; Mersey Care NHS Trust for helping to fund delivery of the intervention; Liverpool Angina Management Programme, for use of a room. Finally we are grateful for the funding and support of the University of Liverpool, Department of Culture, Media and Sport and The Public Engagement Foundation.
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An Evaluation of a Literature-Based Intervention for People with Chronic Pain Executive Summary Introduction This study investigated whether ‘Get Into Reading’, a literature-based intervention, was beneficial for people with chronic pain when delivered within a clinical setting. The study was conducted through a partnership between researchers from the Centre for Research into Reading, Information and Linguistic Systems (CRILS) and Health Sciences at the University of Liverpool, The Royal Liverpool and Broadgreen NHS Hospital Trust, and The Reader Organisation, a nationally recognised centre for the promotion of reading and positive mental health. The project was approved by the Liverpool East Research Ethics Committee. The Study Participants with severe and chronic pain were recruited from a local NHS Trust pain clinic to a single ‘Get into Reading’ group held within a hospital and run by a project worker trained by The Reader Organisation. Get into Reading is a weekly read-aloud activity, developed by The Reader Organisation, focusing on the shared reading and discussion of literary texts (novels, poems, short stories). The study used a mixed methodology approach. Quantitative self–report measures tested the impact of Get into Reading on participants’ psychological symptoms and function before, during and after attending the group. A qualitative approach explored the participants’ experience of the group: a focus group was undertaken after completion of the reading group to understand the meaning and experience of the group, while the individual impact of the group was examined through semi-structured individual interviews. The triangulation of the findings from the focus group, self-report measures and face to face interviews aimed to elucidate the complexity and richness of the experience. Results and Findings Analysis of quantitative data showed some positive changes in terms of pain and psychological wellbeing which were consistent with the accounts provided by the participants. These results provide only snapshot information, however, about what is a constantly changing experience. Furthermore some of the changes that the participants reported were around diverse changes to their quality of life, irrespective of changes in pain and mood. The measures employed in the study,
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whilst partially capturing the Get into Reading experience, did not illuminate the full extent of its impact. Analysis of qualitative data from the personal accounts, focus group and project worker’s accounts have illuminated common themes in relation to the Get into Reading experience for people with chronic pain and the impact that attending has had on their daily lives. The value of the literature read The literature was regarded as an essential component of the Get into Reading experience. Not self-help. It was universally felt by participants that the cohesion and comradeship, joy and animation, and the sense of anticipation, excitement and enquiry which characterised the experience were generated by the shared reading of the literature and that a self-help or support group which concentrated exclusively on pain issues would not have had the same impact or benefits. The skill of the project worker - in choosing the literature, in bringing it to life through her reading and comments, and in managing the group discussion - was also thought to be critical to the quality of the experience. Absorbed Concentration All participants showed a preference for more challenging texts as the difficult stories and poems made them think more deeply. Both group members and project worker agreed that reading and puzzling together over the meaning of intellectually and emotionally demanding literary pieces, produced closer concentration and absorbed attention to details of language, and reduced awareness of pain. It appeared the more participants were focused on thinking about the narrative and literary aspects of stories or poems, the less they were affected by their pain or the more distanced from it they became. It was as though the extra mental effort helped shift immersion to another level and blocked out the pain more successfully. Diversity The variety of poems and stories, as well as the potential for an inexhaustible range of subject rather than ‘pain’-centred topics, was welcomed. Differences of view were also valued and the opportunity to express individual ideas helped engender a sense of self-worth, as did the sharing of previously unread ‘classic’ authors. The introduction to new literary material also influenced reading habits outside the group, particularly the nature and range of reading matter (books were
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replacing newspapers, magazines and television). Individual accounts demonstrated how the challenge of working with the literature as part of a team helped to recreate elements of previous occupational lives. Connections were made to former work-based skills and there was a renewed recognition of the need to engage in valued and meaningful activity. The existing format of the sessions, in which one short story and poem was read at each ‘sitting’, helped members feel they could comfortably return after a break, which prevented their dropping out in the longer term. Flow It appeared that within the group setting, the mental challenge of the shared reading created a state consistent with the concept of “flow” (Csikszentmihalyi 1990) which occurs when presented with a just-right challenge (Hammel 2004). In this optimal state people can also lose awareness of their physical needs and bodily state, becoming more fully themselves – more fulfilled and absorbed, more vitally alive – in forgetting the self, whilst engaged in meaningful activity. This paradigm concurs with participants reduced awareness of pain during the group session and with the project worker’s skill in providing the appropriate high-level literary challenge each week. This approach is in contrast to a graded one that may often be utilised by therapists, where the difficulty of the challenge is increased in a step wise fashion - starting with a low grade challenge and progressing to a demanding one. In this case, the inexhaustible fund of literary resources ensured the ’just-right’ challenge could always be tailored to need, while participants reported that it was the intrinsic interest of the literature which made the challenge more effective for pain relief than a stepped programme. A sense of shared community, friendship and comradeship Whilst the literature was core to the experience, all participants also recognised the importance that the group’s sense of community had on their mood and pain, and the contribution made by the sharing of literary meaning to their feeling of comradeship. Connections with each other were deeply felt by participants, rooted in genuine regard and playing an important part of everyone’s week. Participants encouraged each other and took delight in others’ progress, both inside and outside of the group where some met socially. All participants agreed that the group had been beneficial in terms of coping with pain and had helped overcome the social isolation caused by their associated depression. Social connectedness appeared to run on many levels with emotional,
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informational, tangible and companionship strands evident in participant conversations, in contrast to the emphasis in individual accounts of feeling isolated and lonely as a result of suffering pain and the consequent loss of occupational roles. These benefits rippled out into other relationships as participants shared the reading from the groups with spouses and neighbours. The term community was acknowledged by participants as more closely fitting their experience than social support. Mood and Quality of Life The shared reading aloud countered the negative effect of pain on participants’ mood, both by helping to overcome isolation and depression of spirits and by encouraging engaged enjoyment and attentive (‘listening’) relaxation. Changes in quality of life were also widely agreed upon by all participants and associated with ripple-out effects from the group. The form of such changes varied somewhat with participants referring to changes in their exercise levels, the rekindling of previously valued occupations and leisure activities, and alterations in pain coping strategies. The importance of having a meaningful focus to the week emerged strongly and the value that came from the change of routine and sense of occasion engendered by attending the group was reflected in a marked increased attention to appearance in both men and women. Participants were also very keen to take the reading material away with them and share it with others. The literature gave people another way of socialising and conversing - a sort of currency - that came out of a part of themselves that had nothing to do with the fact that they were chronic pain sufferers and in which they could take pride. A further unexpected impact on quality of life that emerged was the exercise involved in getting to the group. Not only were participants making the effort to get dressed, but some chose to walk to the group from home or the car park in order deliberately to increase their exercise, reporting physical and psychological benefits of invigoration and contentment. Conclusions The findings from the study have demonstrated that Get into Reading can have a positive impact upon the lives of people with chronic pain. The results constitute the first step in offering people with complex and chronic pain another intervention that may help to alleviate some features of their condition, with minimum risk of side effects. While the preliminary nature of this study must be appreciated, it has highlighted the need for further research into the reported quality of life changes and into the suggested mechanisms by which Get into Reading may influence such improvements.
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Introduction This study investigated whether ‘Get Into Reading’, a literature-based intervention, was beneficial for people with chronic pain when delivered within a clinical setting. The secondary aim was to establish strong inter-disciplinary working relationships and identify good practice through the experience of running the group and participant feedback.
The study was conducted through a partnership between researchers from the Centre for Research into Reading, Information and Linguistic Systems at the University of Liverpool, The Royal Liverpool and Broadgreen NHS Hospital Trust, and The Reader Organisation, a nationally recognised centre for the promotion of reading and positive mental health. The project was approved by the Liverpool East Research Ethics Committee.
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1.Background to the study 1.1 Chronic Pain Chronic pain, as it is medically conceived, is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. It is pain which persists for more than six months. Chronic pain is common, affecting between 10.1% and 55.2% (Harstall and Ospina 2003). It can be very difficult to treat and causes considerable suffering. Treatment is by combinations of medication (often causing serious side effects), interventional procedures (which may be painful in themselves) and psychological support. Chronic pain results from neuronal plasticity increasing the number of neurones conducting pain in the spinal cord. There are also changes in the brain, particularly the frontal cortex. Imaging, such as functional magnetic resonance scanning, shows that the brains of people with chronic are different to those who are not sufferers (Davis, 2011; Tracey, 2008)
Chronic pain, as it is individually suffered, is a subjective experience perceived directly only by the sufferer. Pain is a multidimensional phenomenon that can be described by pain location, intensity, temporal aspects, quality, impact and meaning. It does not occur in isolation but in a specific human being in psycho-social, economic, and cultural contexts that influence the meaning, experience and verbal and non-verbal expression of pain. The consequences of chronic pain are widespread and can include economic, emotional, vocational and occupational deprivation (Breivik, Collett, Ventafridda, Cohen and Gallacher 2006) and sufferers can become socially isolated due to both direct and indirect effects of pain, and experience reduced quality of life.
Cognitive behavioural therapy (CBT) has been beneficial to some chronic pain patients, partly due to the benefits of group work (Sveinsdottir et al, 2012). However a recent Cochrane review has highlighted the relatively small effect sizes achieved with CBT interventions for chronic pain and these were comparable with the effect sizes for pharmacological and physical treatments (Williams, Eccleston and Morley, 2012). Given the limitations of existing interventions to resolve chronic pain, the authors suggest that a shift in focus towards a more reasonable goal such as how to live more satisfactorily with chronic pain is now necessary. Morley (2011) suggested that future research
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should explore how to enable patients to manage the interruption caused by pain and to reduce its interference with their lives, thereby improving quality of life and repairing damaged identities. Although a widely recognised concept in the area of positive psychology and Occupational Therapy, “flow” has often been overlooked within the study of chronic pain with few studies focusing on its potential to ameliorate chronic pain (Robinson, Kennedy and Harmon 2102). Flow is conceptualised as an optimal psychological state occurring when a person is completely engaged in a valued activity (Csikszentmihalyi 1990). Occupational flow describes a point at which someone is presented with a “just-right challenge” where their skills are balanced harmoniously with the challenge and the person is focused upon a clear task with strong concentration and focused attention. This state is associated with loss of inhibiting self-consciousness, and a heightened awareness of present being. In this positive state, whilst engaged in an intrinsically rewarding activity, a person can feel in control, calmed, lose their sense of the pressure of ongoing time, becoming entirely presentfocused. In this optimal state of flow people can also lose awareness of their physical needs and state, such as pain. Flow is a common life experience, occurring when a person is absorbed in learning, work, leisure activities or sports and it can play a vital contribution to a person’s sense of well-being. Hence valued occupations have the potential to trigger flow and theoretically modulate the pain experience. Given the occupational deprivation amongst people with chronic pain, it is likely that they are presented with few opportunities in their daily lives, where flow may be triggered. By making provision for activities with the potential to create flow it may be possible to enhance the quality of life and modulate the pain experience for people with chronic pain. Reading is such an activity and when conducted within a group setting offers the additional opportunity to overcome the social isolation that can be a consequence of chronic pain. 1.2.The Reader Organisation The Reader Organisation is an award-winning charitable social enterprise working to connect people with great literature, and each other. Its mission is to create environments where personal responses to books are freely shared in reading communities in every area of life. Beginning life as a small outreach unit at the University of Liverpool in 1997, the national charity (established in 2008) pioneered the weekly ‘read aloud’ model at the heart of their Get Into Reading project, which
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currently delivers over 360 groups each week in all four corners of the UK. They take place in a variety of locations, including hospitals, prisons, corporate boardrooms, schools, GP surgeries, libraries, community centres, care homes, and supermarkets. The stimulating, friendly and nonpressured environments provide stability, support and enjoyment for people who attend, establishing shared meaning and connections across social, educational and cultural boundaries. The Reader Organisation works with forward-thinking partner organisations in a variety of sectors, including public and mental health, education, criminal justice, social care (older and younger people), local authority, corporate and voluntary, to ensure that the experience of shared reading can be enjoyed by as many people as possible, particularly those that may not have access to literature, or to other social activity. In 2012, the charity was recognised by The Observer and NESTA as one of 50 New Radicals in Britain, transforming society through its innovative approach, and was awarded the Social Enterprise Mark demonstrating that its trade income is reinvested for social good. www.thereader.org.uk 1.3.The Reader Organisation and Chronic Pain The Reader Organisation has been delivering Get Into Reading in a range of clinical settings for the last six years. It is now delivering projects across the North West, South West, South East and is currently developing new projects in the North East, Scotland, Wales and Northern Ireland. Current delivery partners include: in the North West, Mersey Care NHS Trust, Wirral Public Health, Greater Manchester West, Manchester Health and Social Care, 5 Boroughs Partnership, Cheshire and Wirral Partnership, Pennine Care, Cumbria Care, Lancashire Care; in London, Central London Community Healthcare NHS Trust; Central and North West London NHS Foundation Trust, South London and Maudsley NHS Foundation Trust, West London Mental Health NHS Trust. A Social Return on Investment report conducted by the Centre of Public Health at Liverpool John Moores University (May 2013) reported an average social return to the health and wellbeing of Get Into Reading group members of ÂŁ6.47 for every ÂŁ1 spent on delivery. By improving self-confidence and self-esteem, building social networks, widening horizons and giving people a sense of belonging, shared reading groups promote and provide a holistic approach to wellbeing and have
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provided positive impacts within the culture of partner organisations. The Reader Organisation’s approach aligns with the ‘Healthy Lives, Healthy People’ strategy for public health, the Five Ways to Wellbeing and the 2011 cross government strategy, ‘No Health Without Mental Health’ which aims to improve and maintain health through early intervention and prevention strategies that tackle underlying causes - chronic loneliness, isolation and inactivity. Get into Reading has been nationally lauded as a positive health and social care intervention and was highlighted in the Department of Health’s New Horizons consultation document as a nonpharmacological/medical intervention that can help improve quality of life. Key professionals and agencies around the country recognise the importance and expertise of The Reader Organisation’s work. Get Into Reading, has been described by the Medical Director of Mersey Care NHS Trust as ‘one of the most significant developments to have taken place in Mersey Care NHS Trust and mental health practice in the last ten years’. 1.4.Centre for Research into Reading, Information and Linguistic Systems (CRILS) The current report has been conducted by the Centre for Research into Reading, Information and Linguistic Systems (CRILS) at the University of Liverpool. This is a new independent research unit, created in 2011 by its Director Professor Philip Davis and Deputy Director Dr Josie Billington. It is the first such centre to take scholars and researchers from a School of English Literature into an Institute of Psychology, Health and Society, within the Faculty of Health and Life Sciences, to work with researchers in science and practitioners in medicine and in psychology, in bringing reading and the study of reading into closer relation with health and wellbeing.
Published studies have focused on the effects of shared reading in community settings (Hodge 2007; Billington, 2011), and in health care and rehabilitation centres (Robinson, 2008; Davis, 2009). Observed and reported outcomes (Robinson, 2008) for participants have included: being ‘taken out of the themselves’ via the stimulation of the book or poem; feeling ‘good’, ‘better’, ‘more positive about things’ after taking part in the group; valuing an opportunity and space to reflect on life experience, via memories or emotions evoked by the story or poem, in a convivial and supportive environment; improved powers of concentration; a sense of common purpose and of a shared
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‘journey’; increased confidence and self-esteem; sense of pride and achievement; valued regular social contact; improved communication skills. GIR group members have often reported a sense of the book itself as a voiced human presence in the group and its emotional centre. Get Into Reading’s read-aloud model encourages ‘interpersonality’ both with the book, and its author and characters, and with other group members. (Davis, 2009) A recently published study on GIR’s shared reading model in prisons has shown how fiction and poetry demand the kind of continuous mental agility and moral and emotional flexibility that few activities (even including other artsrelated ones) can demand with equivalent directness and immediacy (Billington 2012). CRILS’s recent published research, on the benefits of shared reading for dementia sufferers, found that Get into Reading produced a significant reduction in symptom severity by promoting enjoyment, enhancing listening, memory and attention skills, encouraging a sense of meaningfulness and renewed awareness of personal identity. It also identified GIR as distinctive from other reading therapies (self-help, for example) because of its emphasis on the importance of literature and on
active participatory reading. Get into Reading produces (1) liveness, as a result of the literature being read aloud, often repeatedly, since its richness is never fully exhausted, and (2) immediacy of feeling, in responses triggered by specifics within the book or poem (Billington, et al, 2013).
The most significant piece of research relevant to this proposal is a pilot study of the benefits of reading in relation to depression, funded by the University of Liverpool Health Inequalities Research Institute. The study (Billington et al 2011; Dowrick et al, 2012) identified distinct, yet reciprocal mechanisms of action, the most important of which were the roles of the literature, the project worker and the group process, which together helped participants to discover new, or rediscover old or forgotten modes of thought, feeling and experience. Related research suggests that the inner neural processing of language when a mind reads a complex line of poetry has the potential to galvanise existing brain pathways and to influence emotion networks and memory function (Davis et al, 2008, 2012).
The current report builds on and adds to the existing evidence base in relation to reading and health by collecting data for the first time in the field of physical health, where the relationship between physical and mental health is particularly close. Currently Western Medicine regards
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chronic pain as a reorganisation syndrome affecting the central nervous system (Henry et al, 2011). In contrast to acute pain, that is, chronic pain can occur completely independently of any peripheral noxious stimuli. From the patient's point of view it is an emotional condition as well as a physical sensation. It is a complex experience that affects thought, mood, and behaviour and often leads to isolation, immobility, and drug dependence. In that respect 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. It is the 'overlap' between depression and chronic pain which makes our study particularly significant.
2.The Study 2.1. Aims and Objectives of the Project Aims: 1. To investigate and evaluate the power of shared literature to benefit chronic pain sufferers in a clinical setting. 2. To pilot research methods and working relationships possibly leading to larger-scale investigations including randomised controlled trials (RCTs). Objectives: 1. To investigate whether shared reading and discussion of literature was associated with the relief of chronic pain symptoms. 2. To investigate whether shared reading and discussion of literature was associated with changes in the mental health and well-being of chronic pain sufferers. 3. To explore the meaning and impact of attending a Get into Reading group for people with chronic pain. 4. To explore the logistics and develop good practice when running a Get into Reading group for people with chronic pain, within a clinical setting.
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2.2. The Intervention 2.2.1. The Model: Get Into Reading The Get into Reading model, the specific literature-based intervention evaluated in the present study, is distinguished from other reading therapies (which characteristically rely on ‘self-help’ books) in: i) emphasising the importance of serious, ‘classic’ literature and its role in offering a model of human thinking and feeling (Davis, 2009). ii) reading such works aloud so that the book is a live presence and not just an object of study or chat. The Get into Reading model is based on small groups (2-12 people) coming together weekly, to read short stories, novels and poetry together aloud. The principal feature of the Get into Reading model is shared reading: all reading material is read aloud in the session itself. Regular breaks in the reading encourage participants to reflect on what is being read and how it might relate to their own lives and open-ended discussion is encouraged by the project worker. Group members participate voluntarily as they wish and interact in relation to what is happening in the text itself (in terms of narrative, characters, place and setting, themes, description, language) and what may be happening within themselves as individuals (in terms of reflections about personal feelings and thoughts, opinions and experiences), responding to the shared presence of the text within social group discussion. Get into Reading offers social and individual benefits in developing both a deep sense of human selfhood and a more emotionally-sharing small community. The key elements of the model, as identified in a recent pilot study investigating the benefits of the Get into Reading in relation to depression (Billington et al 2011, Dowrick et al 2012) are: • Literature: A rich, varied, non-prescriptive diet of serious literature, including a mix of fiction and poetry.
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• Read Aloud: Making the literature ‘live’ in the room, and become accessible to participants through skilful reading aloud, ensures everybody can take part regardless of levels of literacy, educational, ethnic or cultural background. Readers can control their own involvement, contributing, as much or as little as they like, according to mood and confidence levels. • Shared: The read aloud group model of Get into Reading, and the sharing of personal ideas and feelings in response to literature, is inclusive of everyone, knitting people together in both the reading experience and a supportive community. • Weekly: Get into Reading groups meet every week, offering valuable continuity and structure for people whose lives may be chaotic or empty. The Reader Organisation’s trained project workers deliver the intervention. Project workers attend bespoke Read to Lead training which grounds them in the necessary skills and understanding for shared reading facilitation. Thenceforth, their practical experience is combined with an ongoing programme of staff learning and development. The Reader Organisation’s creative enterprise employs over 50 project workers across the UK, and has trained over 600 individuals to deliver shared reading groups. 2.2.2. Get Into Reading for people with Chronic Pain The core structure of the Get into Reading model is flexible enough to be adapted for different settings and for the needs of different client groups. Part of the intention of this study was to investigate which modifications might be necessary to ensure the feasibility of the shared reading model for people with chronic pain. For example, sessions usually last for an hour and a half, with short stories or whole novels being read aloud over a course of weeks or months and with each session concluding with a thematically linked poem to promote further reflection on the prose. It was anticipated that chronic pain sufferers may have difficulty sitting for any length of time and there was also awareness that they may have significant obstacles to overcome in attending sessions, such as walking any distance and accessing public transport.
Chronic pain, or the medication taken to alleviate symptoms, can affect all aspects of a person’s daily life and well-being. Mobility, motivation, concentration and mood can all be altered with
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consequences for the engagement of participants with the Get into Reading model. Therefore factors such as the accessibility of the venue, adequate parking facilities, seating, room for mobility equipment and length of sessions were given consideration. Additionally the accessibility of the literature was also carefully considered to account for the needs of people with impaired concentration and motivation. Taster sessions were held before the start of the project so that people had an awareness of what was involved in the groups and to enable any practical constraints to be identified early on. At the taster session all potential participants provided details of any special requirements and which days and times would be most appropriate in order to accommodate their needs.
It is also common for people with pain to experience concomitant anxiety and depression which can impair concentration. The administration of analgesic and antidepressant drugs for people with chronic pain can compound these issues along with the problems of excessive tiredness, drowsiness and poor motivation. The Get into Reading model, therefore, had to take these factors into account and made a number of changes for the current study. 2.2.3. Conduct of Sessions and Choice of reading material In Get Into Reading groups, the project worker reads aloud and pauses at key points in the text and asks open questions which stimulate informal discussion: ‘What do you make of this?’, ‘What would you do if you were him?’ , ‘I wonder why she said that?’ and then encourages the group to focus on the words on the page by re-reading more complex sentences/phrases and offering them out to the group for discussion and also asking participants to pick out parts that they find striking or are drawn to or puzzled by. This movement into the text builds on initial responses and produces deeper, often very satisfying and illuminating thinking. Sometimes this process can be reversed, with a group puzzling over a very striking line in the first instance and so gaining insight into the piece and moving onto a more general discussion. Participants also spontaneously share stories of their own lives, as thoughts and memories are stirred up through their personal responses to whatever is being read that day, and these also run through and inform the discussion.
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The project worker was aware of the particular difficulties people with chronic pain have with regard to concentration and prepared to modify the model accordingly, acknowledging that deeper concentration levels may be harder for this group to achieve. She also decided that, rather than move onto a novel as usually happens after a group has been meeting for a few weeks, she would focus exclusively on short stories, extracts and poems, as attendance was likely to be more fractured than for a standard group, so that each session could be ‘standalone’. She opted to use stories with a strong plot line or with a strong focus on ‘feeling’ or emotional response, sensing that these would work best in terms of distracting people from their pain as concentration levels required for more difficult texts would be too great and pain would intrude.
Further ideas for refinements of the model were explored with participants during the focus group and individual interviews and will be outlined in the results section of this report.
2.3. Research Method
The study utilised a naturalistic approach to enable the viability of the intervention to be evaluated within a clinical setting. Given the ground-breaking nature of the project, it was a key intention to work collaboratively with the participants allowing them to shape some aspects of the study procedure. The frequency of the monitoring was designed in collaboration with participants to avoid over-burdening them, whilst obtaining sufficiently detailed measurement to enable patterns to be identified. Participants were recruited from local pain clinics to a single Get into Reading group held within a hospital and run by a project worker from The Reader Organisation. 2.3.1. Approach
A mixed methodology approach was used to achieve the aims of the project. A quantitative approach was necessary to test the impact of the Get into Reading intervention on participants’ symptoms before, during and after attending the group. In contrast, a qualitative approach was required to explore the participants’ experience of the group along with the evaluation around good practice within a novel clinical paradigm.
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2.3.2. Design The case series used in the study was informed by Peterson’s process of inquiry, (Peterson, 1991) and systematic single instance case-research study (Sim and Wright, 2000) with the purpose of offering a detailed analysis of each participant’s “journey” through the Get into Reading programme. The study combined descriptive case accounts which were informed by interviews and focus groups along with an N=1 time-series design (Turpin, 2001). Case research, such as this, uses a quasi-experimental design in which the impact of an intervention variable is tested on outcome variables through a process of repeated measurement (Sim and Wright, 2000). A modified A1BA2 experimental design was used with baseline (A1) and post-group (A2) data being recorded, in addition to measurements obtained during the intervention period (B). Since any impact of the reading group would not necessarily be reversed on its completion, the second baseline period (A2) refers to a follow-up monitoring period, rather than the conventional reversal phase advocated for single-case experiments (Turpin, 2001).
A focus group involving participants and the Get into Reading project worker was undertaken to explore common experiences and to collectively evaluate the design and delivery of the intervention. The findings from the focus group and self-report measures were explored individually through face to face interviews with participants. This methodological triangulation aimed to elucidate the complexity and richness of the experience, whilst enhancing the credibility of any emergent findings. 2.3.3. Participants and Recruitment Participants with severe and chronic pain symptoms were recruited via a pain clinic in a participating NHS Trust. Patients attending the clinic were notified about the study via posters in the clinic and information leaflets. Given the novel nature of the intervention, a project worker from Get into Reading was available during the clinic to explain the study and invite potential participants to a taster session, before obtaining their informed consent. The study included participants with any chronic pain condition regardless of aetiology.
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2.3.4. Measures The impact of the Get into Reading intervention on participants’ psychological symptoms and function was investigated using a variety of self-report measures (assessment booklet).
Repeated measurements, whilst necessary to demonstrate change, place a burden upon participants and may impede compliance or exert a confounding effect on the intervention, as their completion is not a neutral process (Turpin, 2001) with the potential to distort the results obtained. Participants were consulted at the taster sessions about the feasibility of rating their pain on a daily basis using a 0-10 rating scale along with notes about contextual events and medication. However they selected instead to complete their ratings every 12 hours, believing this would offer a more accurate picture. The feasibility of such recording was tested by participants through a trial week before the start of the project.
The participants completed an assessment booklet at baseline, 6 weeks after starting the reading group, on completion of the group and when attending a post-group individual interview.
A focus group with participants and the project worker was held after completion of the intervention to explore the meaning and experience of a GIR group. The idiosyncratic impact of the group was explored through semi-structured individual interviews. The logistics and development of principles of good practice for a Get into Reading group were explored through a review of recruitment
and retention, interviews with participants, a focus group and the project worker’s reflexive notes.
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2.3.5. Timeline (A1)
Assessment Type
(A2)
(B)
Baseline monitoring period
Reading Group 12 weeks
Post group period
Follow up Period
Duration
4 weeks
10 sessions/12 weeks
4 weeks
>4 weeks
Pain Charts
Pain Rating 0-10
Pain Rating 0-10
Pain Rating 0-10
Pain Rating 0-10
12 hourly
12 hourly
12 hourly
12 hourly
Beck Depression Inventory (BDI)
(BDI)
(BDI)
(BDI)
General Health Questionnaire (GHQ) McGill Pain Questionnaire (GHQ) Work & Social Function Scale (WAS) Medical Outcomes Social Support (MOS)
(GHQ)
(GHQ)
(GHQ)
(GHQ)
(GHQ)
(GHQ)
(WAS)
(WAS)
(WAS)
(MOS)
(MOS)
(MOS)
Assessment Booklet
Focus Group Individual Interview
Focus Group Individual Interviews
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2.3.6. Analysis The twice daily pain ratings were analysed visually and evaluated in conjunction with the respective participant. Pre, during and post intervention measurements were compared and where applicable clinical level change was identified. The focus group and interviews were analysed using thematic analysis to identify key themes that arose from the data. The emergent themes were discussed and agreed by the group members. 2.3.7. Ethics The project was approved by the Liverpool East Research Ethics Committee, and conducted on principles of good research governance in line with the ESRC Framework for Research Excellence and the BSA guidelines for the conduct of ethical research (ESRC, 2012; BSA 2002).
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3. Results Six people participated in the Get Into Reading intervention, along with two carers of the participants. All of the participants and their carers were involved in the individual interviews. Five participants, a carer and the project worker were involved in the focus group. Attendance at groups and engagement in the research project varied considerably being inevitably affected by fluctuations in their condition, medical appointments and other commitments. There were a few people who wished to attend the group but were unable to do so, due to their current health problems. Exemplar case studies containing relevant contextual information and data obtained from participants through self-report measures, pain diaries and individual interviews are presented. 3.1. Focus Group Findings All of the attendees participated fully within the focus group session and five main themes emerged from the group discussion. 3.1.1. Community & Social Connections A strong theme that emerged and was revisited throughout the focus group was the friendship and “comradeship” that participants shared through their pain, along with the ability to “have a laugh” together. Their discussion was entirely congruent with this theme, evidenced by the jovial banter, light-hearted mood and teasing of each other that formed part of the discussion. It seemed that their connections with each other were deeply felt, rooted in genuine regard and played an important part of everyone’s week. Participants described having established good relationships both within and outside of the group, with some references to meeting up and stopping to talk in the clinic. These connections for some appeared much deeper: they talked about how they missed each other, encouraging each other and taking delight in the progress of members. A strong collective identity appeared to have been established where they valued each other’s differences, and formed a community rather than merely friendship.
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Many of the participants focused upon the isolation they felt because of their pain and depression. Vera talked about the isolation from friends that had arisen through her mobility problems “Because I can’t walk very far ...you lose....I’ve lost a lot of friends..... in all fairness to them I feel as if I’m holding them back ....so you feel quite lonely at times” - and how the group had helped her: “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.” Everyone found that the group was beneficial in terms of coping with their pain: through offering distraction, access to support and mutual advice about medication or side effects. Vera also talked about the evaluative benefit of the group since it had enabled her to evaluate her own pain favourably when compared to others: “I like to compare myself with others in the group... my own problems don’t seem so bad compared to you”.
Another consequence of the group that was discussed was how it rippled out into other relationships and the participants described proudly sharing the reading from the groups. Ken was sharing the stories with his wife. Vera recounted: “My hubby never reads at all . . . he’s not a reader but I caught him having a nose” and her neighbour had also been interested to “nose at” the stories, whereas Pat’s sister asked when she visited, “what, have I got to read then?”
Despite the strong sense of community amongst the group they dismissed the notion that the group would be as beneficial without the focus on literature. Steph responded adamantly: “No! This gets us thinking and discussing things”. Bob agreed: although he thought “the social side is important”, he believed the group would fall down after a couple of weeks if it was just a self-help group. Vera added to this: “We would have explored everything . . . we would run out of things to talk about”. Ken was more balanced in his opinion - “It’s nice to have both though . . . isn’t it?” - and together they pondered on the idea that the socialising was the side effect of being in the group, it was not the focus of the group. No one in the group thought the experience would be as beneficial if they did not share the literature together.
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3.1.2. Literature and Pain Not only did everyone believe the shared reading was essential to the group experience, they all preferred to work on more challenging texts as these led to diverse opinions and disagreements. They thought the difficult stories made them discuss and think more deeply and Ken suggested “we don’t always agree do we?” These differences of opinion were welcomed and several participants talked about enjoying putting their own ideas and opinions forward and about how hearing other viewpoints made them think. It appeared this helped to engender a sense of self-worth and value which was an idea that was voiced by Vera - “It shows you what we are capable of . . . doesn’t it?” and reiterated by Ken: “if I might say . . . I think we are all quite intelligent”.
Reminiscing about favourite stories provoked a very animated and joyful discussion in which they proved themselves discerning readers, with several people extolling the virtues of Chekhov especially ‘The Lottery Ticket’. Steph pronounced “I love Chekhov”, whereas Pat brought a laugh to the group when she mentioned another story: “that’s the one we thought could have done with a better ending”. They were all in agreement that they would not have read such authors before the group. Pat stated, “I never would have read Chekhov in a billion years”, a sentiment echoed by the rest of the group. The variety of texts each week was identified as important and summed up by Pat: “I think we have had a good mixture . . . haven’t we?”; and finding out what stories and poems they would be reading each week seemed to generate a layer of excitement for Vera. “That’s the thing, you don’t know what you are getting each week . . . it’s good you know . . . you think . . . Ohhhh I have never heard of that!” and Steph “we don’t know what we are coming into . . . which is . . . really nice”.
Participants also volunteered changes in their own reading habits in terms of authors, the type and amount of reading they undertook: they were also starting to use reading to cope with their pain and sense of isolation. Pat described her move away from watching television: “now . . . if I put the telly on and it’s nothing I like, it goes off and I get a book then . . . I’ve gone back to what I used to do before . . . for a long time because of . . . the pain and discomfort . . . I just stopped the reading”. Several people talked about how they used to only read magazines or “trash” books because of their poor concentration, whereas they were now buying books from charity shops instead or using
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a kindle. For Ken there was a different change: “I have started to get the . . . err posh newspapers now . . . I get The Observer and The Independent . . . I never used to do that”. Bet, who found reading outside of the group very difficult, said “I am seriously thinking of getting a magazine . . . it’s not a book, but it’s a start”, and Bob explained that Bet had several times in the last week picked up a book to try to read it but her concentration difficulties stopped her. The whole group agreed with the project worker’s observation that when they were reading a difficult piece and everyone was puzzling over its meaning, it seemed that their concentration was greater and it reduced their awareness of pain. Participants proposed that the concentration required to read, participate in the discussion and become absorbed in the stories distracted them from pain. Steph voiced this as “yes it [reading] distracts mine”, along with Vera: “It [reading] can distract you and in the group it’s even better”. 3.1.3. Mood The participants touched on their mood at various points in the focus group, with some talking openly about how their pain affected their mood negatively and this was accompanied by accounts of how the group had helped them feel differently at times. Ken reported that “I’m feeling a little more upbeat about things”, and he talked about how he and his wife had noticed his mood was better for a couple of days after the group. Whilst he was still having difficulty sleeping, he reported “I’m awake all the time but it’s an enjoyable awake now”. Vera’s mood was helped by relieving her feelings of isolation: “We all get a bit of the blues . . . don’t we . . . I know I do anyway . . . and it’s good to get out”. Pat, on the other hand, identified the impact on her mood not only as stemming from getting out of the house but as a consequence directly of the experience of the group: “I really do think it’s helped and its relaxing . . . They have got nice voices to listen to and you can relax and someone makes a comment . . . then we have got something to laugh about”. Another key element of attending the group for Pat was that it had helped her through the winter when her mood was worse and it was difficult to get out. In previous years she would stay in and think, but the group made her get out and she looked on it as self-help for her mood. 3.1.4.Quality of life Changes in quality of life were widely agreed upon by all participants and associated with ripple-out effects from the group. A strong notion that emerged was around the importance of having a
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meaningful focus to the week and the value that can come from a sense of occasion engendered by attending the group. Participants talked about “looking forward” and “being excited” before the group, which appeared different to their usual routines and as Bet succinctly expressed it, “it gives you an aim”. The sense of occasion from the group was associated with an increased attention to appearance. Both men and women described an increased attention to their appearance in preparation for the group, in contrast to their usual routine. Vera volunteered “it’s nice to get yourself all dickied up”. This sentiment was echoed by Pat who stated “You make the effort . . . wash my hair before I come . . . and it’s nice to put a bit of slap on” and Steph who said “I’d still be in my pyjamas if I wasn’t here”. Bet expressed the sense of occasion that attendance appeared to evoke in the participants and the stark contrast with their normal routine: “we have all got dressed up for the occasion . . . not just dressed up . . . but we are dressed not in a nightie and pyjamas, as some days you don’t bother anyway . . . you are being forced . . . in a nice way . . . to look your best and look nice . . . visually”. Although, in contrast, Bob also recounted times that it had taken Bet two hours to get ready, and then she was in too much pain to attend.
An unexpected impact on their quality of life that emerged was the exercise involved in getting to the group. Not only were participants making the effort to get dressed, but some chose to walk to the group from home or the car park to deliberately increase their exercise level as a new challenge or to lose weight. For example, Ken used attending the group to take a 20 minute walk and described its impact: “I walk and I feel more at peace and invigorated . . . psychologically”. 3.1.5.Customising the sessions Participants found the existing group format and venue worked well for them. Whilst the location was not immediately accessible to everyone, the discussion led to recognition of the positive aspects of this in terms of attendance increasing their exercise or their motivation to organise themselves to make it a day out.
They discussed the duration of sessions too. Although they thought 90 minutes allowed time to develop the stories and discussion, they raised the idea of adding a social time at the end of the sessions. This would allow members time to talk about their pain and treatment worries informally
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whilst still being able to mull over the stories together if they wanted. Participants appreciated the flexibility of the group, being able to attend when their health permitted and always feeling welcome to return. Bob thought, “in some ways . . . the fluid . . . composition of the group, has been interesting . . . because everyone is different” and that altered the dynamics of each session. Ken was keen to acknowledge the key role the project worker played, particularly in the choice of reading materials and leading the group, although these ideas were agreed by all. 3.1.6. Focus Group Summary Five key themes arose from the participants during the focus group discussion. The themes illustrate the direct and indirect impact of attending the group on the participants. Whilst the participants aired ideas for customising the group to suit their needs, in the main they felt the existing venue worked well for them despite recognised limitations. The diversity of literature was acknowledged as dependent on the real skill and expertise of the project worker and this was a core element of the impact of the group. The existing format of the sessions helped members feel they could comfortably return after a break, which prevented their dropping out in the longer term. Other benefits reported from the reading experience per se were pain alleviation and the sense of self-esteem engendered in the participants through the discussion. Furthermore the group highlighted the wider impact in terms of mood and quality of life that had arisen through their engagement and connection with each other in a “shared community of pain”. Whilst the social connections appeared powerful in easing their expressed sense of isolation, all participants were adamant that it was the sharing of the literature that was the essential component. Without the anticipation, excitement and enquiry which arose directly from the literature, they suspected the group would lose its impact upon them. 3.2. Exemplar Case Studies All six participants were interviewed along with two carers that had attended the sessions. Case studies for three of the participants were selected to illustrate a range of different experiences for people with pain and varied viewpoints on their engagement with the GIR group. 3.2.1. Steph Steph is a woman in her 50s who is married with children and grandchildren.
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3.2.1.1. Attendance: Steph attended for six out of ten sessions and chose to be interviewed in the research office. Steph participated in the focus group. 3.2.1.2. Context to pain: Her pain started very suddenly 5 years ago with no identified cause although initially the cause was thought to be a stroke. The following year she started to experience a persistent headache that additionally affects her vision and concentration. Headaches have continued largely unabated: “it’s always there, it’s there all the time and never goes”. Steph was adamant that there was no pattern to her pain, other than its exacerbation after caffeine. Steph discussed a non-disclosed traumatic event in the last year, which has affected her badly. She was not able to talk about this in the interview, but addresses the event in counselling. She reported periods of anxiety due to medication and when feeling she has no control over her current situation. Anger associated with both her pain and current circumstances was also reported. Steph is a trained healthcare professional but at the start of the project she was unable to work and was doubtful she would ever be able to work again. During the interview it was evident that work was important to Steph for social reasons and in its absence her pattern of daily life became disrupted. By the end of the project Steph was employed again - “I never thought I would go back to work and look at me I’ve got a new job” - and evidently enjoyed being back at work, despite the concentration difficulties she had to overcome. 3.2.1.3. Pain Diary: Steph provided very comprehensive pain diaries throughout the study and was able to correctly identify her own pain pattern, which she described as a “castle”. Steph was intrigued that the graphs were “true and accurate” and depicted her experience of pain. The graphs show that although there was some fluctuation in her pain, which typically oscillated around 67/10, she was never free from pain during the period of the study. No notable changes in pain intensity or pattern were evident during the months of attending the group.
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When looking at her weekly pattern, a slight increase in her pain appeared to occur in the second half of the week, after having attended the group on a Tuesday but this fluctuation was minimal and could not be accounted for by Steph.
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3.2.1.4. Health and Functional Measures Measures (002)
Baseline
Mid
Final
Post Gp
GHQ
12
14
14
16
WAS –work
8
6
6
6
WAS-home
6
4
4
6
WAS-socialise
6
6
6
7
WAS-alone
8
6
3
0
WAS-relationships
0
0
4
7
WAS-other
-
4
-
7
BDI
27
24
28
32
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McGill-
34
31
32
27
McGill- pain now
3
3
2
2
Over the period of the research study Steph’s mood (as measured on the BDI) and psychological health (as measured on the GHQ) remained stable, although she was experiencing a very stressful situation in the later part of the study. There were also some functional changes over time, in that Steph had returned to work and was able to manage being alone more readily, using this time to read. However Steph did also report more difficulties in managing relationships as the project progressed which she suggested may be connected to her tiredness from working and a stressful personal issue. 3.2.1.5. Social Support Steph lives in her own home with her husband. The impact of her pain on her relationships was evident from her interview - “If I’m in pain I’m awful to live with . . . I’m tetchy” - and the small social network of 1-3 people, reported on the MOS. During the interview Steph reported that her social support was now mainly provided by one of her daughters who lives locally and one close friend, although in the measurement tools she reported that attendance at a day centre and seeing a counsellor was the most valuable support with her current problems: “If I couldn’t go and see the counsellor I would go doolally”. Measures (002)
Baseline
Mid
Final
Post-gp
MOS-network
3
1
3
MOS-supportive
4.2
1.2
5.2
MOS-satisfied
1.6
2.5
5.1
MOS-support type
Day centre
counsellor
Day centre & counsellor
Steph felt that her social network had been diminished by her pain stating that “they have all slipped away because I’m always in so much pain and having to cancel”. Work evidently provided a valued sense of fun and belonging to a team; she chatted animatedly about her colleagues and
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reported: “I like team work”. These benefits were as valuable to Steph as any financial remuneration and it was clearly very important for her to be able to carry on working and maintain a life outside of her home.
3.2.1.6. Personal Impact of Get into Reading Steph’s experience of the Get into Reading group was very definitely identified at interview - “I love it”, “I love going”, “It gives me something to look forward to” - and had positively impacted on her mood: “I feel more relaxed when I’m there and when I come out for a couple of hours”. “It’s my little island . . . a safe haven, I love the word safe haven . . . it’s very sort of informal and comfortable”. “I just feel comfortable there”.
When Steph was asked to visualise a typical group, the complex strands of the experience became evident: Steph’s recollection of the group reading the first chapter of Great Expectations showed how her own pain and that of the characters become tightly intertwined in her mind. She described the scene thus: “we are all quite upbeat . . .all laughing and joking yeah . . . all moaning because we can’t get an appointment . . . and we were generally talking about different things . . . different types of pain . . . and about the pain as well . . . as he loved Estella didn’t he, he loved Estella . . . and how the pain of that really”. A complex emotionality is also present in the shared reading experience, with Steph describing the group’s mood as one in which “Everything is serious but upbeat and everyone happy”. Interestingly, on recalling this memory, Steph was able to reexperience feeling happy and upbeat and her pleasure was evident in her animated account and facial expression.
Steph found the social aspect of the group to be instrumental to the experience - “I like the socialisation and I like the banter” - and felt that in some ways it replicated the attributes of the workplace: “We are a little bit of a team”. A sense of occasion in attending also emerged - “I’ve got to get my shit together (laughs) I’ve got to get my hair washed, my pyjamas off” suggesting the value and importance placed on attending for Steph and echoing the thoughts she expressed in the focus group.
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There was evidence that the influence of the Get into Reading group was also able to extend its reach beyond the group time and members. Examples of this included Steph’s spontaneously recalling key aspects of the literature after the group or deliberately re-reading the story several times. Sometimes she would also read the stories to her family - “I go home and discuss it with me . . . husband . . . don’t I?” - or give them to others to read.
Socialising both inside and outside the group time was also mentioned, with Steph and her husband having coffee with another group member and sharing news with each other through texts. She appreciated all the different “characters” in the group and the sense of belonging and community aired in the focus group was conveyed by Steph, when talking about a member that wasn’t able to attend: “I miss her. . . because . . . she’s a part of this little group”.
Whilst attending the group had not improved Steph’s entrenched sleep problems, it had led to the use of reading as a coping strategy with considerable changes in the amount and nature of her reading. Prior to the group she did not use her Kindle because of difficulty concentrating but at the time of the interview Steph had taken to carrying it everywhere and was getting through at least a book a day. In her personal reading she claimed - “I’m just reading . . . well trash at the moment . . . because I have no concentration” - but she later contradicted this by stating that the group had led to her reading more respected authors such as Chekhov and Blake, consistent with the preferences she expressed previously in the focus group.
3.2.1.7. What worked about the group? For Steph pain and poor concentration seemed to be closely entwined and so being able to maintain her concentration on the reading appeared fundamental to the beneficial experience of the GIR group and coping with pain. “I’ve really, really got to concentrate . . . and that’s what it makes me do. It makes me concentrate and listen.” “You have got to focus because she [project worker] stops and asks questions and if you haven’t focused you can’t answer the questions.”
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“It makes you forget things.” “The more focused we are . . . the better it is for me.” Although the social and interactive aspect was clearly valued by Steph, it was the focus on the literature that she identified as pivotal to the beneficial changes in her coping with pain and her reading choices. “The literature’s very important . . . the diversity of it . . . I’m a really big Chekhov fan . . . I don’t like Dickens but we we’re reading Dombey & Son . . . it encourages me to buy the book.” “It’s changed my pattern of reading.” “My reading has become more literate than it was. You need to concentrate on Chekhov and Ibsen.” 3.2.1.8. Case Summary When investigated from a quantitative perspective, Steph’s mood or pain did not alter notably over the course of the project. By contrast, when the impact of the group was explored from a qualitative perspective Steph identified a transient feeling of relaxation during and after the group which was not identifiable using the assessment tools available in this project. Qualitative exploration also revealed important changes in her quality of life. Steph’s quality of life had altered through her return to work, her altered pain coping patterns and her enhanced social well-being: the latter was the result of the strong sense of community and belonging she now shared with her group members. Steph summed up the overall experience as “It’s just been a joy to me hasn’t it? I like going, I never miss” and her strong commitment to the group was evident: “I dragged myself there . . . it’s that important to me”. 3.2.2. Bet and Bob her carer/husband Bet is a woman in her 60s, married with one child and grandchild. 3.2.2.1 Attendance Bet attended for 5/10 sessions along with her husband Bob and chose to be interviewed in her own home. Bet and Bob participated in the focus group.
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3.2.2.2. Context to pain Bet sustained a back injury at work over 20 years ago and this along with a degenerative spinal condition have resulted in chronic back pain: “I can only describe it as cramp in the bottom of my spine and the cramp gets bigger and bigger, so I can’t move my legs . . . so I sit down it and it goes away”. She described a traumatic event in which she reported sustaining her back injury whilst at work. She left this job 10 years later because of her back problems and took up office work but over time found this work too much. Bet considered retiring from her career as this was the most traumatic event she had experienced although it no longer disturbs her. Bet finds that her condition is worsening - “It’s getting worse, worse now than it’s ever been” and Bob reiterated this: “It’s always destined to get worse”. Bet does have some times when she is pain free but these don’t last long “I may have no pain for a day and then it’s back . . . like it’s ever been” - with these remissions following injections for her pain. Bet wasn’t aware of any pattern to her pain.
Bet’s mobility is impaired by her pain and she uses a wheelchair outside her home. She is reliant on her partner for assistance with activities which are part of daily living and for psychological support, especially when leaving home. Bet reported frequent anxiety symptoms which can escalate into a panic attack, especially when she is alone.
Bet was a healthcare professional, a job she clearly loved and gained satisfaction from. Currently Bet no longer participates in any occupations or hobbies apart from watching television which was not particularly meaningful to her. Bet described her life as devoid of any pleasurable activities, which was contradicted somewhat by Bob: “That’s not totally true...we go out with the dogs.. we go on holidays two or three times a year, we normally rent a cottage . . .”. Bet was an avid reader but cannot do this now because of concentration difficulties, arising from a “breakdown”. Bet described wanting to read: as she mentioned in the focus group, she picks up a book but finds she just cannot manage to concentrate and follow a story.
3.2.2.3. Pain Diary: Bet completed the pain diaries intermittently during the project resulting in periods of missing data which affect the validity of the results. From the available data it appears
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that her pain fluctuates but generally oscillates between 5-8/10. Some variation in Bet’s pain pattern was noted over the week. Bet believed this change was as a result of attending the group “the group helped enormously . . . you don’t feel pain when you are discussing or reading a story” although her husband thought it may be because she was active at the weekend. On reviewing the pain charts, Bet had difficulty recognising her own pain pattern amongst the other participants.
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3.2.2.4. Health and Functional Measures Measures (003)
Baseline
Mid
Final
Post Gp
GHQ
12
10
10
18
WAS –work
8
8
6
8
WAS-home
8
8
4
8
WAS-socialise
8
6
3
4
WAS-alone
8
6
0
4
WAS-relationships
7
2
0
4
WAS-other
7
7
6
-
BDI
21
26
22
18
McGill-
21*
37
41*
Not completed
McGill- pain now
4
3
4
4
No clinical change in measures
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*Increase in McGill Score Bet thought that the measures and explanation offered to her described her experience well. She accounted for the increase in her pain over previous 6 months as being related to her doing more housework for herself. Bob described how her regular pain had increased, with new areas becoming painful. 3.2.2.5 Social Support Measures (003)
Baseline
Mid
Final
Post Gp
MOS-network
2
3
3
4
MOS-supportive
4
9
5.4
8.5
MOS-satisfied
5.8
4
5
8.6
MOS-support type
Consultant
Husband
Husband,
Husband &
sister & carer
carer
& carer
Bet talked about how she used to be very sociable but stated she wasn’t any longer. Consequently she obtained the majority of her support from her husband, commenting that “He’s my backbone”. She also received practical and psychological support from her sister who lives locally and stays with Bet whenever Bob is away from home. They have two dogs but Bet did not find they offered her the same support or comfort now that she can no longer walk them. Bet described how she used to be a social person, but this had altered over the years. Over the project Bet’s support and satisfaction with it fluctuated and she received her support from very few people, which echoed the isolation she talked about in the focus group. “I was I’d sit at home and not be able to do what I wanted to do . . . and no-one coming to see me and I wasn’t able to get out . . . not walking properly say . . . to a hairdresser’s or something like that . . . I found it quite isolating”. When asked if that had changed at all, Bet was clear: “Yes, because I come here”.
However the quantitative
assessment of her social support did not reflect the change described by Bet.
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3.2.2.6. Personal Impact of Get into Reading Bet and Bob both reported beneficial effects from attending the group. Bet talked about how being focused on the reading or discussion made her forget about her pain: “I don’t have pain when we are discussing or reading the story . . . the whole thing is read out and I don’t have any pain”; whereas Bob recognised more the thinking and social aspects of the group. Bet did not find that attending the group had altered the way she coped with pain in general but reiterated that whilst in the group the pain did not affect her. Bet thought that this difference might be because she cannot stop the group when she is in pain, so it takes her attention away from the pain: “different types, ways of the brain really were being affected . . . with one part of the brain saying look at this . . another side of the brain is saying don’t think of anything else . . . I mean I do have pain it just doesn’t seem to bother me”. Bob posited that the group offered distraction for Bet along with enjoyment which pushed the pain to the background. Bet had taken steps to try to listen to stories on her computer to overcome her concentration difficulties but was not too sure how to operate the programme.
The sense of occasion that Bet talked about in the focus group was raised again in her interview: “I really look forward to it . . . I can get a bit dressed up to go”. It seemed that it was not only the time in the group that was beneficial for Bet but the planning, getting dressed and making a particular effort with her appearance were also valued.
Bet described the experience of being at the group as totally occupying her mind, being with enjoyable company and importantly, she said, “we feel no pain”. When visualising the group Bet described a complex scene with everyone chatting, much laughter, but also a serious side so that the social aspects did not take over, but still the atmosphere remained light-hearted. She talked about pain being there too, but it was definitely in the background not the foreground during the group.
Bet and Bob both talked about how the reading experience extended beyond the group: they would bring the stories home and revisit them. This provided them with a new focus of conversation and thought after each group. Consistent with their thoughts in the focus group, they
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were clear that although they valued the social aspect of the group, the focus on literature was essential to them. The literature was seen as being integrally “meaningful and valuable” because the group explored “quality authors”, with particular mention of Dickens and Chekhov as examples of “impressive” authors.
3.2.2.7. What worked about the group? The aspect that worked for Bet was the flexibility of the group, permitting you to miss weeks and rejoin whenever you were able to and being welcomed back when you did return. The reading rather than the discussion was considered central to the experience for Bet as this had the greater impact upon her pain. They enjoyed having different stories to read each week so that they would not know what they were getting and could bring them home to read and discuss again. Although the social aspect of the group was considered important, it was not the key motivation for Bob or Bet. They were clearly motivated by the literature and the discussion around this. However they did think the group could be enhanced by a short social time at the end of the reading group and whilst welcoming the idea of more members thought it necessary to maintain the intimacy and security of the current group.
3.2.2.8. Case Summary Analysis of Bet’s pain ratings was hindered by the episodic data available although Bet did independently suggest that her pain was lower during the week than weekends, which was consistent with the visual analysis of the charts. Quantitative investigation of Bet’s mood, general psychological health and function did not indicate that there was any reliable and clinically significant improvement, although there was an improvement in Bet’s functioning in terms of socialising, being alone and relationships. This was consistent with the increase in both the amount and satisfaction with her social support, recorded at the end of the group and final interview which was consistent with her discussion of enjoying the companionship of the group. Qualitative exploration found that Bet, although keen to read at home, still found this difficult, whereas in the group she was able to concentrate more fully and enjoy the experience of reading and discussing the literature irrespective of her pain. Moreover, the more challenging and thoughtprovoking the literature, the easier Bet found it to concentrate and reduce her awareness of pain. Bet and Bob both acknowledged the value of the social connections within the group and believed these could be enhanced by the addition of an informal session at the end of the group.
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3.2.3. Ken Ken is man in his 50s, married with two adult children, one of which lives locally. Ken’s wife also suffers from chronic health problems. 3.2.3.1. Attendance Ken attended for six out of 10 sessions and chose to be interviewed in the research office. Ken participated in the focus group. 3.2.3.2. Context to pain Ken’s pain started suddenly one night over twenty years ago with strange sensations in his feet and hands that kept him awake at night and consequently had a significant impact on his daily functioning, especially his work. The onset of his pain led to Ken taking early retirement from the civil service twenty years ago but he misses the routine of work and being able to use his skills. He has pain and uncomfortable sensations in his hands and feet which affect him severely at night. He routinely only manages to sleep for an hour or two at night with inevitable consequences for his functioning during the day and this makes it difficult for him to plan to do things being uncertain of how he will feel. To manage the pain Ken takes medication which precludes him from driving, but he does find that walking relieves his sensations and pain.
Over time the sensations and pain have worsened and the aetiology of his condition remains uncertain. Ken described how his functioning was greatly impaired by the inability to plan ahead along with the difficulties that arise from his wife’s own health problems. He referred repeatedly to the significance these planning difficulties had on his daily life. Ken discussed the traumatic impact that the onset his wife’s condition had on him and how he did not feel he was given any support at the time. Ken also related the psychological difficulties experienced by one of his children and the regular support he provides.
3.2.3.3. Pain Diary Ken managed to capture a comprehensive picture of his daily pain ratings, keeping regular 12 hourly records throughout the project, apart from a period when he was unable to attend. Ken’s described his pain pattern as being “all over the place, that’s the problem” which was consistent with the pattern that emerged through his diaries. “I do get periods when it’s . . . it’s
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relatively . . . not so bad”. The diaries showed that his morning and evening pain ratings fluctuated considerably, fitting this pattern and Ken explained his experience in more detail: “I’m not the normal pattern . . . as I never know what the night is going to bring . . . sometimes I have a reasonable night and . . . next day I’m quite bright and cheerful . . . one night I was [staying with family] and I was up all night walking around . . . that’s what my week is like”.
In the focus group Ken discussed how he and his wife had noticed that he felt brighter for a few days after attending the group on Tuesdays. A congruent pattern was observed in his pain ratings, with Wednesdays and Thursdays showing the lowest scores when analysed by days of the week.
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3.2.3.4. Health and Functional Measures
Measures (007)
Baseline
Mid
Final
Post Gp
GHQ
16*
0*
3
4
WAS –work
8
8
7
7
WAS-home
6
3
2
3
WAS-socialise
6
3
3
2
WAS-alone
5
3
4
6
WAS-relationships
6
4
3
3
WAS-other
9
8
-
-
BDI
34*
14
12
15*
McGill-
49*
27
24*
39
McGill- pain now
1
1
1
2
*Clinically relevant change over time
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Ken initially considered he was strong and coped with life’s difficulties by being able to “block them off” but did reveal that “the illness does make you depressed . . . so it would be wrong to say I don’t get depressed i.e. go on holiday . . . the illness does make you depressed and also you get anxious . . . general life doesn’t make me depressed . . . this pain does get me depressed” and went on to explain that it was the difficulty planning to do anything that affected him the most and was the least understood by others. Ken discussed the impact he believed attending the group had on his mood: “I found going to the . . . err . . . thing on the Tuesday . . . very beneficial, I felt brighter . . . err less anxious err . . . even if I didn’t sleep that good that night, I was still more bushy tailed the next day”, which was consistent with the improvement recorded in his mood (as measured on the BDI) and general psychological health (as measured on the GHQ) when comparing the pre-group and post group scores. 3.2.3.5. Social Support Measures (007)
Baseline
Mid
Final
Post Gp
MOS-network
3
3
3
3
MOS-supportive
7.8
8.5
9.2
6.4
MOS-satisfied
8
7.5
8.3
5.7
MOS-support type
Wife
Wife &
Wife
Wife
Consultant As Ken’s pain and sleep problems make it very difficult for him to plan, he and his wife spend a lot of time together: “we tend to keep to ourselves . . . to a large degree only because you can’t really plan ahead”; “We do have a couple of friends . . . but nothing . . . it tends to be family orientated.” When interviewed Ken felt that he gained his regular support from his wife and one of his sons, although he also indicated the value of his consultant in one of his questionnaire responses. The invisible nature of Ken’s pain and associated lack of sleep, led to him feeling isolated because even close family could not really understand the way he felt. However he did share the weekly readings
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with his wife and sought her opinions on the stories which they had been reading, which he considered had been beneficial to their relationship in addition to his feeling brighter.
Despite his difficulties, Ken talked about how he kept active, ensuring he went out every day with his wife to do the shopping, visiting family or taking trips out. Ken identified that key elements of the group were the support gained from each other and the positive impact of being able to evaluate his experiences against those of others: “I can see some people . . . that overall are . . . worse than myself, I can think of one individual . . . there are people worse than me and trying to compensate and say to myself” and “Someone was there that was worse than me . . . so talking to people like that helped”. Consistent with the social support benefits described by Ken are his social support ratings. The availability of support and satisfaction ratings (as measured on the MOS) peak at the end of the group and then deteriorate after it has finished, although Ken thought his pain “flare-up” around the time of the interview may have made the post-group scores higher. 3.2.3.6. Personal Impact of Get into Reading Ken had found the group beneficial in many respects: “I did feel that going there on a Tuesday was beneficial I said to my wife . . . it’s funny . . . it’s a psychological thing, obviously . . . in that not only are you reading and you’re concentrating on certain things, but also you get the feedback . . . from other people, err how did you feel, I’ve tried this tablet . . . I found it a double edged benefit, in a way, in reading and trying to identify where the plot was and your mind is on that . . . and the communication with other people, that have got similar problems and I said to my wife I just feel a bit brighter . . . for a couple of days after . . . I felt like I was back in work again”.
Ken described the experience as being “like a play in a way a verbal play” which was enlightening and inspirational and whilst listening to the readings he forgot his problems as he was so absorbed in the reading. He was excited by and enjoyed trying to feed-forward and guess what would happen in the story, as if it was a puzzle to be solved. “You are thinking about the stories and how they are going to evolve . . . and the individuals . . . the people in the stories . . . and how they will be affected . . . is this likely to happen . . . and sometimes you get great satisfaction in saying . . . I think this is going to be a problem and in the end there’s going to be tears . . . and it is, so it’s thinking
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things though like that.” He particularly benefited from stories that required him to concentrate and Ken related this his experience of being at work and using his brain. He reflected upon how much he had missed working: “ as I say, I feel like I’m in work again . . . analysing things in the book and err . . . why did this happen, what did you think was going to happen . . . it makes you think . . . and because I never had that for so long that’s been helpful.” Ken on other occasions similarly compared the experience to being at work - “This is where work is so important and I have missed it so severely . . . I felt that it’s like being in work because you’re talking with people . . . assessing what other people are thinking and because of that . . . you feel . . . brighter . . . and that’s probably for the next two days I feel jollier in myself” – and recognised that the group enabled him to use skills that had being lying dormant since he retired.
Another impact of attending the group was a change in some of Ken’s coping strategies. “The thing that [my doctor] mentioned to me clicked when I was talking to this [person] . . . he said even when you are in the deepest pain and depression . . . that pain will end, it will get better . . . so for some reason it clicked when talking to this [person] and sometimes when walking up and down at night I think . . . it will end . . . it will end . . . don’t get too uptight about it”. He talked about reading now when awake at night, so that he used his time productively instead of getting frustrated. In the focus group Ken discussed that he had started to read the “quality” newspapers and when interviewed had continued this along with other changes in his reading that helped with his pain. “I tend to read . . . I always used to read quite a bit but it’s mostly the likes of The Independent and The Guardian newspapers . . . err but I’m a keen music . . . thing especially the Beatles so I’ve been . . . massive big biographies . . . of the Beatles there’s a new one out . . . so I’m doing that every night now . . .I’m reading when I’m awake [at night] now which I didn’t tend to do before . . . It does help the pain, not when the sensations and I’m walking up and down . . . but even then I’ve been reading when walking up and down [laughs] . . . so yes”. Ken also talked about how the group had led to a change in his reading interests: he has been choosing books about the “psychology of how the mind works . . . and so on . . . and mostly biographies of politicians” whereas previously it was mostly newspapers he read.
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When asked to picture the experience of being in the group Ken recollected : “Curiously enough the happiness of the people that are there, despite their disabilities . . . whether that’s because of the group we were in, whether it’s because we were more enjoying things . . . because we were there we were reading, whatever . . . but people were there and laughing and telling the story . . . is the sort of image I had . . . despite their problems nobody was like errr [looks miserable] like that ”. His recollection suggests the complex filaments of the literature, the different characters and range of emotions that are evoked during a typical session.
3.2.3.7. What worked about the group? Ken considered that the impact of the group on his wellbeing was attributable to the choice of stories and the skills of the project worker which helped him become absorbed with the literature and discussion and forget his pain. “The [project worker] . . . she’s very good . . . she picks out articles which that you really need to think about what’s happening . . . so yeah so because you have to think in depth you tend to forget about . . . yeah . . . I’ve gone there [the group] with pain and I’ve forgotten about the pain because I’m so much involved in it.”
The social context was important to Ken and although he thought the group would work with people suffering problems other than pain, their common connection through pain was evident “It’s mostly being . . . involved with other people . . . even talking to people about their pain . . . what sort of night they have had, what tablets are you on”. The constant mingling of their own narratives with the literature was also an important aspect of the group for Ken: “The people have been smashing . . . they have all got great stories to tell, they have been great communicators”. Reminiscing was a key element he identified: “all that happens all the time . . . do you remember when this . . . and there is a couple of them that go on and on . . . in a nice way . . . you don’t get bored so the story telling is very important too.” However he was clear that the reading was the key element over and above the other beneficial elements of the group.
One of Ken’s dreams for the group was for more people to get involved to broaden the discussion and experiences and “perhaps to go a little more in depth with the reading” and increase the duration a little more as “often you feel disappointed it’s ended . . . go on . . . at least a little bit
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more”. He pondered whether the mostly female group may put men off stating that “men are less forthright in coming forward perhaps . . . I don’t know”, but as he felt comfortable in female company he said that this had not been a concern of his. Ken also offered several suggestions of how to increase the opportunities to socialise and share their experiences at the start by asking “Ken how have you been?” with the communication amongst the group being highly valued by him. 3.2.3.8. Case summary Ken reported in the focus group, his interview and diaries that attending the group had a positive impact on his mood, general psychological health and some aspects of his daily functioning. Visual analysis of his pain ratings indicated an improvement, for two days after the group, which was entirely consistent with his perception of both his pain and mood. Quantitative analysis of his mood, function, general psychological health and social support all indicated improvements that occurred whilst he was attending the group. Some of these improvements were lost after the group ended but Ken attributed some of the deterioration to a change in his pain. Qualitative analysis highlighted additional benefits in terms of Ken’s quality of life, changes in his coping strategies along with the reconnection with his previous occupations such as work and reading. The support he derived from participating in the group and being part of a community of pain sufferers were also recognised by Ken as key benefits from the Get into Reading experience, whilst the literature and the associated mental stimulation that went with the stories was the pivotal feature.
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3.3. Project Worker’s Reflective Account Exploration of the group experience was also undertaken by the Get into Reading project worker through the maintenance of reflective accounts after each session and conclusions from these have been drawn together here.
As a facilitator, I was unsure of what to expect of this group: all of the people I spoke to at the pain clinic mentioned that they had trouble with concentration so I wondered how/if the shared reading model would work for them. If flow was to be achieved at all, I imagined that it would be brief, fleeting and intermittent.
My first thought was that stories with a strong plot line may work best in terms of distracting people from their pain or that perhaps stories with a strong focus on “feeling” or emotional response would carry people along. I wondered if they might struggle with more difficult texts because the concentration levels required would be greater and pain would intrude.
We started – as we often do with new groups – with a couple of short stories which have universal themes – childhood and parenthood – The Snob by Morely Callaghan and The Doll’s House by Katherine Mansfield. In the discussion, people tested their own experiences as parents and children against the characters and each other, and telling stories about themselves – weaving them through the fictional stories we were sharing - helped them to get to know each other very quickly and helped the group to gel.
People also talked a lot about their pain during these early sessions – especially in the five minutes or so before the reading began. Then they seemed to find their pain in whatever we read. For example, we read a short story called The Bet by Chekhov which is about a young man who is drawn into betting 2 million roubles that he can stay in solitary confinement for 15 years. This extract from session notes gives some indication of how the discussion went:
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At the first pause, as the bet is set up, Steph immediately said that she finds it hard to be on her own for more than two hours. Ken then spoke of how his pain is worse at night and he finds it very lonely. All of the other group members then assented, with some people contributing comments on how pain feels much worse when you’re alone. Ken wondered why the young man who took on the bet in the story upped the ante and offered to stay in for 15 years rather than the 5 originally suggested. He kept coming back to this: why would you offer to suffer more? There was then a discussion about time and how it feels different at different ages. All said they wouldn’t give up any of their lives for money, but Bet said when she was younger she may have given up a year for a million pounds, but not now. Steph said she’d sacrifice any amount of money to get her health back, but Vera said that ‘readies’ can help if you’re ill – they can get you treatments faster. There was a lot of assent, though Steph didn’t quite seem convinced. . . . Several people in the group predicted that the man in solitary confinement would go mad, Steph and Vera both saying you need people to find out where you are, to check things with, otherwise “things just go round and round your head”.
This illustrates how people’s individual personal experiences can rise up through the story, triggered by identification with the character, how group members also compare their experiences and views with each other’s and then also sink more deeply into the character’s situation at particular moments. For example, Ken’s puzzlement about why the man would sign up for more suffering than he had to may have been related to his own experience of pain or may have just been his trying to understand the thought processes of the man in the story.
At the end of this session we read a poem by Maya Angelou called “I Know Why The Caged Bird Sings”:
Vera: “That’s so sad!” Ken: “This isn’t about birds, though, is it: it’s about people.” Other group members then started to make connections with racism and poverty. Vera also saw a connection with the story: “It’s like that man we’ve just read about.” Sue: “You don’t need bars to make a prison – pain can be a prison.”
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There was then talk about being locked inside pain. Sue said she identified with the lines “can seldom see through/his bars of rage” and told of how angry she gets about her pain. I asked the group felt about the first stanza (describing the “free bird”). Steph: “People complain about getting a cold, but they don’t know they’re born.” What about when they were “free birds” themselves? Vera: “I’d have a few words to say to myself if I could meet myself now.” Steph: “I’d tell myself to go to the gym three times a week, but I probably wouldn’t take any notice!” Vera: “D’you know, this (looking at the other people in the group) is the only place I can talk about my pain – I can never mention it anywhere else.” Steph: “People I know just tell me to pull myself together.” Sue: “You can’t understand it unless you’ve been in it.”
This prompted a very powerful exchange between group members where they spontaneously spoke about how they came to suffer from chronic pain: Steph had a stroke which left her with nerve damage in the back of her head, Ken’s pain came on very gradually and eventually stopped him being able to work, Sue fell in the garden and hurt her back and then had an operation that went wrong. Vera had several knee replacement operations that went wrong. Bet described a traumatic event she’d experienced as a student nurse: she’d been helping to bathe a heavy patient who became unconscious. The nurse she was working with told her to keep holding him up, but pulled the plug out before going for help. Bet hung on to him and he died, but she has been left with back trouble ever since which has worsened over the years.
At the end of the session there was a real bond and sense of camaraderie between the group members: lots of “Thank you – I really enjoyed that” to me and cheery calls of “See you next week” to each other.
It was striking that at this stage the people in the group who were chronic pain patients were very quick to bring up parallels with their own lives, rather than stay with the text whilst the comments of the two carers (who accompanied their wives) were more focussed on the fictional situations
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and were more “third person”, but this did change as time went on – as though people needed to get it all out - as they might in a support group - before moving on to other talk.
As the weeks went by, I was surprised to realise that it was actually the more difficult, more puzzling stories that most absorbed people. As well as giving people a buzz as they felt they were accessing quality literature – “I didn’t think I’d be able to understand Chekhov” – there was also something about the demands the stories made on them. It was as though the extra mental effort helped shift immersion to another level and blocked out the pain more successfully.
The best sessions were with the Chekhov stories, Fanny and Annie by D.H. Lawrence, Cathedral by Ray Carver, A Poetics for Bullies by Stanley Elkin and In Another Country by David Constantine where there was a real sense of close concentration and attention to detail, more talk about the characters and a relish for the language, with prose being more absorbing than poetry. There was confusion about what was happening in the stories at times – but it was a comfortable confusion claiming attention, rather than repelling: as Vera once said “You really got our brain cells going this afternoon!”
There was one occasion when the value of this deep concentration was dramatically demonstrated by Pat. When the group first started, she would have to stand up every now and then during the reading to ease her pain, but in one session – when we were reading the David Constantine story – she remained seated throughout, making lots of contributions and very absorbed in what we were reading. However, when we turned to the poem, she immediately stood up and spoke sharply, clearly in pain - as though the immersion had ended and the pain was readmitted.
One unusual and demanding story – Cowboy by Thomas McGuane – which has a strong theme of being absorbed in physical work, was very positively received by the group, and this was followed by a poem called “Labor” by Baron Wormser which is about the joys of the very physical work of cutting down trees. It actually touches on the idea of “flow”, of becoming more fully the self – more fulfilled and absorbed, more vitally alive – in forgetting the self and individual identity whilst engaged in work. The group focused in on this stanza:
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I was the maul coming down kerchunk On the round of maple; I was the hellacious Screeching saw; I was the fire. I was fiber and grew imperceptibly.
Bet immediately and quite spontaneously drew a comparison with her own experience of being in the reading group itself: “That’s like us. That’s what happens here in this group – we forget ourselves and forget our pain. Like - we’ve all been cowboys this afternoon.”
There were interesting differences between these sessions and others I have run. For example, the atmosphere in the session, regardless of the subject matter of the literature, was almost always upbeat. Whilst serious subjects – including death, bereavement, unresolved anger, betrayal and regret - were given their due weight and deep consideration, they didn’t deflect the mood of optimism and cheerfulness which attending the sessions seemed to evoke. I also noticed that people in this group were very keen to take the material away with them and then passed it on to other people they knew and discussed it with them later, or read it aloud to spouses or relatives or re-read it themselves. This “ripple-out” effect was very marked: it was as though the literature gave people another way of socialising and conversing - a sort of currency - that came out of a part of themselves that had nothing to do with the fact that they were chronic pain sufferers. They seemed proud of what they were doing.
In Get into Reading groups, the reading aloud is often shared by other members of the group (as well as the project worker) as confidence builds, though nobody is ever pressured to read. In this group, however, people were reluctant and sometimes unable to read aloud because of the sheer physical effort required. One member also said that she found it harder to concentrate on what was happening in the text when reading aloud - so perhaps, for some, achievement of flow would be impeded. Two members did regularly volunteer to read the poem at the end, though, and on occasion each person present would read a verse each.
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It also became apparent that prose was more effective when it came to immersion for this particular group than poetry, contrasting somewhat with the findings of a previous research report which looked at the effect of shared reading on people suffering from depression. The sustained concentration required for narrative seemed to create a long enough block of time for the pain to be pushed back, whilst the movement around a poem and intense bursts of hard thinking required seemed to readmit it more easily for some participants, though the poetry was still also generally enjoyed.
I would also like to add that Dr Jones’ support and enthusiasm in recruiting people to this group was unusually strong – to a degree I’d not met with when working in other health settings perhaps indicating that he had some anticipation of its value as an intervention for his patients.
These accounts demonstrate a consistency with the interview and focus group accounts of the group. The intense focus on the literature is evident along with the strong bond felt by participants through their connection with pain, but which they were also able to move beyond within the context of the group. It seemed as if when together they could fully enter into the world of the literature and here at least it seemed that they felt “safe” to express themselves freely, to disagree, to share their own narratives and to think and enquire without the distraction of their pain.
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3.4. Pain Consultant’s Reflections I have been a consultant in Pain Medicine for 15 years. On an almost daily basis, I deal with patients with chronic pain and see the suffering endured. When I first heard of Get into Reading being offered to pain patients I was immediately excited. My patients were offered the chance to take part in the Reading Group set up by The Reader Organisation and several of them attended taster sessions. Eight of them agreed to attend regularly and contribute to this research.
Many people suffer pain during their lives but the common experience is to take pain killers to control it and for it to get better. Chronic pain sufferers usually do not get complete pain relief from treatment and may face a life time of pain. Their life is significantly changed by pain. The struggle to carry on with life, while suffering pain leads to fatigue and poor concentration.
Pain is rarely constant and may be made worse by activities. Outings may be curtailed by a dramatic increase in pain requiring return home to rest. This results in loss of social activities and reduced contact with friends. Pain may cause deterioration in mood resulting in breakdown of family relationships, thus worsening feelings of isolation. Depression is often associated with chronic pain. Hurt is only a facet of the suffering of people with chronic pain.
Pain patients sometimes have difficult relationships with doctors. Chronic pain is disease of the central nervous system involving changes in the pathways conducting and controlling pain messages in the spinal cord. There are changes in the brain especially the frontal cortex. These changes can be studied using techniques such as functional magnetic resonance scanning.
However, the investigations used to observe pain in the hospital setting concentrate on scanning peripheral areas and usually the findings do not correlate with the patient’s distress and reported pain levels. Many clinicians are not taught the central nature of pain and do not understand how, for instance, someone complaining bitterly of back pain can have a normal scan. This adds frustration and anger to the negative feelings of the pain patient.
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Pain is not well controlled by treatments. Chronic pain patients will typically be on several different analgesic drugs sometimes in high dose; be having regular interventions such as nerve blocks; and be undergoing psychological treatments such as cognitive behavioural therapy. Even then they may have unsatisfactory pain control and be subject to severe flare ups.
We hoped that Get into Reading would benefit pain patients in several ways. Group working may be beneficial by reducing social isolation. Meeting people with similar problems gives a sense that they are not struggling alone. The invitation to join a group validates the patient’s pain giving them a sense that their symptoms are accepted as real. The discipline of taking part in the group and thinking about the reading material may improve concentration. Literature may have potential reverse some of the changes in the brain seen in patients with chronic pain. (Davis, 2008, 2012)
We hoped that Get into Reading would help patients with chronic pain by either reducing their pain levels or by increasing their quality of life in spite of pain. If these benefits were observed, future research would be directed at investigating where in the diverse manifestations of chronic pain reading is having this beneficial effect.
My patients who have attended Get into Reading have found it a very positive experience. It has been enjoyable, the group working has lifted spirits and members have continued to attend after the end of the research period. Although measured pain has not changed, the patients are doing more and experiencing improved quality of life.
The benefits for patients have been recognised by my Hospital Trust (The Royal Liverpool and Broad Green) by agreeing funding for the group for 3 years. We hope to use this to offer more patients the benefits of Get into Reading and to continue research into the underlying mechanisms.
Andrew G. Jones, B.Sc, Mb.BS, DGM, FRCA, FFPMRCA
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4.Discussion
The findings from the personal accounts, focus group and project worker’s accounts have illuminated common themes in relation to the Get into Reading experience for people with chronic pain and the impact that attending has had on their daily lives.
The universal theme that emerged was the central role of the literature in the experience, which was agreed by all participants in the study. Despite the high value participants placed upon their social connections, through what appeared an emerging “community of pain”, they all believed that a social support group would not be as beneficial and would fail to provide the mental challenge and esteem offered by a Get into Reading group. Individual accounts demonstrated how the challenge of working with the literature as part of a team helped to recreate elements of their previous occupational lives. Connections were made to work based skills and their need to engage in valued and meaningful activity, which a support group could not offer.
Another theme that emerged in the accounts was the apparent contradiction between the difficulties participants reported with their concentration (due to their pain) and the project worker’s observations about their depth of concentration, especially when working with more difficult literary pieces. It appeared the more they were focused on thinking about the narrative and literary aspects of stories or poems, the less they were affected by their pain. Through the interview and the focus group exploration this viewpoint was confirmed, with some people recognising that they became distanced from their pain, whilst in the group. Some participants explained that this arose through distraction or absorption in something else, thus not letting their minds become aware of the pain.
It appeared that within the group setting, the mental challenge of the shared reading created a state consistent with the concept of “flow” (Csikszentmihalyi 1990) which occurs when presented with a just-right challenge (Hammel 2004). In this optimal state people can also lose awareness of their physical needs and bodily state, such as pain. This fits with the reports from the participants about their reduced awareness of pain when in the group, along with the project worker’s skill in providing them with the appropriate literary challenge each week. This approach is in contrast to a
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graded one that may often be utilised by therapists, where the difficulty of the challenge is increased in a step wise fashion: for example, starting with a low grade challenge such as reading a short magazine article, and progressing to an undemanding short story before tackling more demanding reading. The participants in this group have informed us that such a process would lack the intrinsic value they place on reading “serious” literature and potentially would not be as effective for pain relief since it would not demand the focused concentration and just-right challenge necessary to create a sense of flow .
Whilst the literature was core to the experience, all participants also recognised the importance that the group’s sense of community had on their mood and pain. Their social connections appeared to run on many levels with emotional, informational, tangible and companionship strands evident in their conversations. This was in contrast to the accounts provided of becoming isolated and lonely as a result of their pain and loss of occupational roles. The term community was acknowledged by participants as more closely fitting their experience than social support. As a group they valued their diversity but shared a common bond through pain and the reading had enabled them to develop deeply felt friendships where they took evident delight in each others’ achievements and supported each other through troubled times. This emergent Get into Reading community could have encouraging implications for members in the longer term since the accessibility of social support can influence an individual's ability to cope with stress, and the recognition that they are valued by others can play an important psychological role in helping people to cope with the negative aspects of their lives and health problems and improve their mood (Taylor 2011, Uchino 2004).
Changes in individual’s quality of life as an indirect consequence of the group also emerged as a theme discussed by all the participants. The form of such changes varied somewhat with participants referring to changes in their exercise levels, the rekindling of previously valued occupations and leisure activities, and alterations in pain coping strategies, with the group becoming a focal point in the week associated with a great sense of occasion. Given the restrictions participants felt that pain placed upon their occupational and social lives, the reported improvements in their quality of life after such a short intervention, is to be welcomed, and in the
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longer term may offer strategies to interrupt the cycles of pain and low mood that were reported. Although not everyone was using reading as a coping strategy at home for their pain, there were notable changes in both the amount and type of literature that individuals were reading and reported benefits in terms of pain relief and reduction in their sense of social isolation. The next step will be to support those who have not yet been able to manage to read at home, to be able to find the right level of challenge to enable them to concentrate, given the impact reported by those who have successfully achieved this.
The project utilised a mixed methodology in order to attempt to investigate the Get into Reading experience form both a qualitative and quantitative approach. Review of the pain rating diaries was informative both in terms of the study aims and the participants agreed that the charts appeared to reflect their pattern of pain. One of the case studies presented demonstrated a change in pain in the days following the group which was consistent with their experience and another case study showed somewhat lower scores after the group. However, the demand that 12 hourly recording placed upon participants was significant and due to the rapidly fluctuating nature of some people’s pain, may have been insufficient to capture their true experiences and as such has proved a rather crude tool to explore such a subjective phenomenon.
Positive changes were noted for some of the psychological and pain measures administered, which were consistent with the accounts provided by the participants. However these measures, too, can only supply snapshot information about what is a constantly changing experience. Furthermore some of the changes that the participants reported were around diverse changes to their quality of life, irrespective of changes in pain and mood. The measures employed in the study, whilst partially capturing the Get into Reading experience did not illuminate the full extent of its impact.
In this study the combination of approaches and methods has been a strength which has enhanced the validity of the data from each source. The design has also provided participants with opportunities to check and comment further on the data collected, to ensure its validity and reliability with their own experience. Through developing a better understanding of the phenomenon of a Get into Reading group for people with chronic pain, we have developed some
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key aspects of the experience which demand further research. Future studies need to investigate the quality of life changes that appear to occur and to develop strategies to explore further the concept of “Flow” that appears to have emerged within this study as central to the beneficial impact of the literature for these participants.
The participants in the main found the group format met their needs well and although there were some ideas to enhance the venue, this was on the whole thought to work well for their needs in terms of comfort and accessibility. Some participants described images of more “homely” settings that they thought could enhance the experience such as sitting in a conservatory or in armchairs by a fire. The major improvement they wished for was to be able to share the experience with more people to ensure the diversity within the discussion and the continuation of the group. Although their common bond was pain, participants thought the group could happily include people with other chronic conditions.
A few participants suggested extending the group for a further half an hour to allow for a more informal social time at the end, where they could continue to mull over the stories or share more pain related time. However, other participants thought the duration was about right for their ability and would not want to overdo it in terms of their pain.
The skill of the project worker was also thought to be critical to the group, in terms of bringing the literature alive and selecting sufficiently challenging texts, in order to facilitate maximal engagement in the reading. They also recognised the skill required to manage their tangential discussion. However when there was a temporary change in project worker they also thought they provided an equally welcome input and challenge, suggesting that this skill set is not unique amongst the Get into Reading project workers.
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5.Conclusions This study was undertaken to investigate and evaluate the power of shared literature and its benefits for chronic pain sufferers in a clinical setting and to pilot research methods and working relationships to inform possible larger-scale investigations. The findings from the study have demonstrated through the voices of the participants and measurement tools used that a Get into Reading group can have a positive impact upon the lives of people with chronic pain. The study has also highlighted the need for further research into the reported quality of life changes and suggested mechanisms whereby the Get into Reading group may affect these improvements. The results presented therefore constitute the first step in offering people with complex and chronic pain another intervention that may help to alleviate some features of their condition, with minimum risk of side effects. However, the preliminary nature of this study must also be appreciated.
Through the establishment of this pilot study robust working multi-disciplinary partnerships have developed and lessons have been learnt in relation to potential strategies for building on the current working model for a shared reading group for people with chronic pain.
With the aims of this study achieved, further research is now necessary to expand upon the learning from this study and test the findings with a revised and larger scale study.
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6.References Billington, J., Dowrick, C., Robinson, J., Hamer, A., Williams, C. (2011) An investigation into the therapeutic
benefits
of
reading
in
relation
to
depression
and
well-being.
[Online]
Available:https://sites.google.com/a/thereader.org.uk/get-into-readingdownloads/files/TherapeuticbenefitsofreadingfinalreportMarch2011.pdf?attredirects=0&d=1https: //sites.google.com/a/thereader.org.uk/get-into-readingdownloads/files/TherapeuticbenefitsofreadingfinalreportMarch2011.pdf?attredirects=0&d=1,
[27
Feb 2013]. Billington, J. and Sperlinger, T. (2011) ‘Where Does Literary Study Happen?’, Teaching in Higher Education, Special Issue, Leaving the Academy, vol. 16, no. 5, pp. 505-16. Billington, J (2012) ‘“Reading for Life’: Prison Reading Groups in Practice and Theory’]. Critical Survey, vol. 23, no. 3, pp. 67-85. Billington, J., Carroll, J., Davis, P., Healey, C., Kinderman, P. (2013) A Literature-Based Intervention for Older People Living with Dementia, Perspectives in Public Health. Special Issue, Arts and Health January 4, 2013, doi: 10.1177/1757913912470052. Breivik, H., Collett, B., Ventafridda, V., Cohen, R., & Gallacher, D.(2006) Survey of chronic pain in Europe: Prevalence, impact on daily life, and treatment. European Journal of Pain, vol. 10, pp.287333. Csikszentmihalyi, M. (1990) Flow-The psychology of optimal experience. New York, Harper and Row. Davis, Karen D. (2011) Neuroimaging of pain: what does it tell us? Current Opinion in Supportive and Palliative Care, 5: 116-121. Davis, J. (2009) Enjoying and enduring: groups reading aloud for wellbeing. The Lancet, vol. 373, no. 9665, pp. 714 – 715. Davis, P., Thierry G., Martin, C.D., Gonzalez-Diaz, V., Rezaie, R., Roberts, N., (2008) Event-related potential characterisation of the Shakespearean functional shift in narrative sentence structure. NeuroImage , vol. 40: 923-931. Davis, P., Keidel, J., Gonzalez-Diaz, V., Martin, C., Thierry, G. (2012) How Shakespeare tempests the brain: neuroimaging insights. Cortex, vol. 48, no. 5, pp. 21-64.
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Dowrick, C., Billington, J., Robinson, J., Hamer, A., Williams, C. (2012) Get into Reading as an intervention for common mental health problems: exploring catalysts for change. Medical Humanities, vol. 38, pp. 15-20, p. 19. Hammell, K. W. (2004) Dimensions of Meaning in the Occupations of Daily Life’, Canadian Journal of Occupational Therapy. vol. 71(5): pp. 296-305. Harstall C and Ospina M (June 2003). How Prevalent Is Chronic Pain?" Pain Clinical Updates, International Association for the Study of Pain XI (2): 1–4. Henry,, D.E., Chiodo, A. E., Yang, W. (2011) Central nervous system reorganization in a variety of chronic pain states: a review. The Journal of Injury, Function and Rehabilitation. 3(12):1116-25. Central nervous system reorganization in a variety of chronic pain states: a review Hodge S., Robinson J., Davis, P. (2007) Reading between the lines: the experiences of taking part in a community reading project. Medical Humanities, vol. 33, pp. 100-104. Morley, S.J. (2011) Efficacy and effectiveness of cognitive behaviour therapy for chronic pain: progress and some challenges. Pain vol.152:S99-S106. Robinson, J. (2008) Reading and Talking: Exploring the experience of taking part in reading groups at the Walton Neuro-Rehabilitation Unit (NRU). HaCCRU Research Report, 114/08. Robinson J. (2008) Reading and Talking: Exploring the experience of taking part in reading groups at the Vauxhall Health Care Centre. HaCCRU Research Report 115/08. Robinson, K., Kennedy, N. & Harman, D. (2012) The Flow Experiences of People with Chronic Pain. Occupational Therapy and Rehabilitation Journal, vol.32 (3) pp.104-112 Sveinsdottir, V., Eriksen, H.R.,
Endresen, S. R. Reme (2012) Assessing the role of cognitive
behavioural therapy in managing chronic nonspecific back pain. Journal of Pain Research, 5: 371– 380 Taylor, S.E. (2011) "Social support: A Review". In M.S. Friedman. The Handbook of Health Psychology. New York: Oxford University Press: pp. 189–214. Tracey, I (2008) Imaging pain. British Journal of Anaesthesia, vol. 101, 1: 32-9. Uchino, B. (2004) Social Support and Physical Health: Understanding the Health Consequences of Relationships. New Haven, CT: Yale University Press: pp17.
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Williams A.C.D.C., Eccleston C., Morley S. (2012) Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database of Systematic Reviews, Issue 11. Art. No.: CD007407. DOI: 10.1002/14651858.CD007407.pub3.
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7.Appendices 7.1. Appendix 1. Participant Information Sheet
Participant Information Sheet – Reading Group Sessions Reading Group at Royal Liverpool Hospital You are invited to take part in a research study. Before you decide whether or not you wish to take part it is important for you to understand why the research is being done and what this involves. Please talk to others about the study if you wish to. This sheet tells you why the study is taking place and what will happen if you take part and gives you more detailed information about the conduct of the study Please ask us if there is anything that is not clear, or if you would like more information, and take time to decide whether or not you wish to take part. What is the purpose of this study? There is already evidence to suggest that reading groups, and the act of reading and discussing poems, prose and stories, have mental health benefits, but this is the first study we have made to see whether the groups have an impact on physical health. We hope that the information from this study will support the continuation and spread of reading groups in health care settings. The aim of this research is to involve people who volunteer for a Get into Reading group, set up by The Reader Organisation at Royal Liverpool Hospital/University of Liverpool for people suffering from chronic pain, in a study to explore (i) what happens when people get together in a group to read a text aloud, and to talk about the text and (ii) whether taking part relates to patients’ physical and emotional well-being. Why have I been chosen? You are a Royal Liverpool Hospital Chronic Pain Clinic service-user and you have shown an interest in taking part in a reading group and/or you have been identified as a suitable participant by a health professional. Do I have to take part? No. It is up to you to decide whether or not to take part. If you do, you will be given this information sheet to keep, and be asked to sign a consent form at the start of the research study. You are still free to withdraw at any time and without giving a reason. A decision to take part, or withdraw, or not take part will not affect the standard of care you receive. What will happen to me if I take part? Questionnaire If you decide to take part you will be asked to complete a confidential questionnaire with the researcher before the start of the reading group sessions, and then again when the reading group
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sessions are completed. This will include questions about your mental health and physical health as well as some aspects of your lifestyle (eating, exercise, work habits for example). As the questionnaire is quite detailed, it will be completed in private interview with the researcher, who will guide you through the question booklet. The process should take approximately 45 minutes. Reading Group There will be two sets of reading groups over the six month study: one set will run in the first three months and one in the second three months. You will be allocated to a reading group running either in the first three months, or in the second. You will be asked to complete a questionnaire with the researcher at the end of each three-month period. The reading group will be informal and small (no more than 12 people) and will meet once a week for two hours at Broadgreen Hospital or at Cedar House, University of Liverpool, to read short stories, novels and poetry together aloud, with regular breaks in the reading for discussion of what is being read. The group will be led by a trained project worker from The Reader Organisation, who will choose the reading material guided by the group members’ interests and tastes. No previous experience or expertise is necessary and there will be no pressure on participants to read aloud themselves or to discuss the books if they do not wish to do so. The focus is on relaxation and enjoyment and you will be able to contribute as much or as little as you like. Interviews When the reading group sessions are completed, you will be invited to take part in an interview in which the researchers will ask you questions about your experience of the reading group and your reading habits before and since taking part in the group. You do not have to take part in both parts of the research, and you can take part in the reading groups and not take part in the interviews if you wish. Are there any disadvantages or risks if I take part? Though there are no specific risks or harms associated with taking part in this research, the content of the literature can sometimes cause emotional distress. Likewise, the questionnaire completed with the researcher might cover potentially distressing personal issues. In the reading group and in the interviews, you will not have to discuss issues about which you feel uncomfortable. In the event that you become distressed, you will be free to terminate the interview with the researcher, or to leave the reading group room and speak with the group leader or health practitioner once the session is over. What are the benefits of taking part? Observed and reported outcomes for participants in Get into Reading have included: being ‘taken out of the themselves’ through the stimulation of the book or poem; feeling ‘good’, ‘better’, ‘more positive about things’ after taking part in the group; valuing an opportunity and space to reflect on life experience, through memories or emotions evoked by the story or poem, in a supportive atmosphere; improved powers of concentration; a sense of common purpose and of a shared ‘journey’; increased confidence and self-esteem; valued regular social contact and decreased sense of isolation. What happens when the research study stops? After we have collected the data for the research, we will spend some time analysing it, and then we will prepare a written summary of the findings that will be made available to all the participants.
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Audio tape or CD versions will be made available if preferred. This summary will include details of how to access a copy of the short report of this study that will be available online, or as a hard copy on request. If you are keen to continue attending a reading group once the six-month study is completed, the project worker leading the group will advise you on Get into Reading groups in the local area which you might attend. Will my taking part in the study be kept confidential? Yes, all the information about your participation in this study will be kept confidential. The details are included below. Please note one exception however. The researcher has a duty to report any disclosure by participants that suggests a risk of harm to themselves or to others. What will happen if I don’t want to carry on with the study? If you decide that you want to withdraw from the study, then depending on what you wish to happen, your data can be withdrawn from our analysis, or you can have your contribution so far included. What if there is a problem? Should you have a concern about any aspect of your involvement with this research project, you should ask to speak with the researchers who will do their best to answer your questions and address any concerns in the first instance: Dr Josie Billington, (0151) 794 2734. jbilling@liv.ac.uk). If you remain unhappy, and wish to complain formally, you can do this through the University of Liverpool Complaints Procedure. Details can be obtained from the researcher or from the University of Liverpool: (0151) 794 2000. Will my taking part in this study be kept confidential? Yes, your taking part in the study will be kept confidential to the project. All data will be anonymised, and stored securely at the University of Liverpool for seven years, and then destroyed. The anonymised data will be seen only by members of the research team, and will not be used for a further study. Your name will not be used in any published material resulting from the study, including reports. These procedures are compliant with the Data Protection Act (1998). What will happen to the results of the research study? The results of this research study will be summarised and sent in either a written form, or as a CD or tape, to all of the participants in the research. A further brief report of the findings will be made available to participants, and also to key stakeholders at Royal Liverpool Hospital, The Reader Organisation, University of Liverpool, and to other people interested in reading and health. We also hope to publish the findings in a peer-reviewed publication, and to present at relevant conferences. You will not be identified in any report or publication. Who is organising and funding this research? This exploratory piece of research is being funded by the Departure of Culture, Media and Science and University of Liverpool. Who has reviewed the study? This study was given a favourable ethical opinion by NRES Committee Northwest – Liverpool East.
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Contact details If you have any questions or concerns about this study, please contact either Josie Billington on 0151 794 2734 or at School of English, Cypress Building, Chatham Street, University of Liverpool. L69 7ZR. jbilling@liv.ac.uk You will be given a copy of this Information Sheet and a signed consent form to keep. Thank you for considering taking part in this research project.
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7.2. Appendix 2. Participant Consent Form
Consent Form – Reading Groups Royal Liverpool Hospital/University of Liverpool Researcher: Dr Louise Humphreys, University of Liverpool
Please initial box
1. I confirm that I have read and understood the information sheet dated for the above study. I have had the opportunity to consider the information and to ask questions, and I have had these answered satisfactorily 2. I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason, without my medical care or legal rights being affected 3. I understand that the researcher will ask me: (a) to complete a series of questionnaires relating to my physical and mental health and well-being, and the medical and social support I am receiving; (b) to answer questions about my time in the reading group. 4. I understand that quotes from the discussions may be reproduced verbatim in a written summary, and/or a report, and/or a published journal article, but my name will not be included. 5. I agree to take part in the above study
-----------------------Name of participant
--------------------Date
------------------------------Signature
-----------------------Name of person taking consent
--------------------Date
------------------------------Signature
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7.3. Appendix 3. Confirmation of Ethical Approval
NRES Committee North West - Liverpool East HRA NRES Centre Manchester Barlow House 3rd Floor 4 Minshull Street Manchester M1 3DZ Telephone: 0161 625 7832 Facsimile: 0161 625 7299
04 July 2012 Dr Josie Bilington Deputy Director, Centre for Reading Research, Institute of Psychology, Health and Society University of Liverpool School of English, Cypress Building, Chatham St Liverpool L69 7ZR Dear Dr Billington Study title:
REC reference:
Public Engagement Foundation/Department of Culture, Media and Science Arts in Health Evaluation Programme. A Preliminary investigation into the effects of shared reading (The Reader Organisation's 'Get into Reading' Programme) with people suffering chronic pain. 12/NW/0388
Thank you for your letters of 17 and 27 June 2012, responding to the Committee’s request for further information on the above research and submitting revised documentation. The further information has been considered on behalf of the Committee by the Chair and Mrs Jean Pownceby. Confirmation of ethical opinion On behalf of the Committee, I am pleased to confirm a favourable ethical opinion for the above research on the basis described in the application form, protocol and supporting documentation as revised, subject to the conditions specified below. Ethical review of research sites NHS sites The favourable opinion applies to all NHS sites taking part in the study, subject to management permission being obtained from the NHS/HSC R&D office prior to the start of the study (see "Conditions of the favourable opinion" below). Non-NHS sites Conditions of the favourable opinion The favourable opinion is subject to the following conditions being met prior to the start of the study.
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Management permission or approval must be obtained from each host organisation prior to the start of the study at the site concerned. Management permission ("R&D approval") should be sought from all NHS organisations involved in the study in accordance with NHS research governance arrangements. Guidance on applying for NHS permission for research is available in the Integrated Research Application System or at http://www.rdforum.nhs.uk. Where a NHS organisation’s role in the study is limited to identifying and referring potential participants to research sites ("participant identification centre"), guidance should be sought from the R&D office on the information it requires to give permission for this activity. For non-NHS sites, site management permission should be obtained in accordance with the procedures of the relevant host organisation. Sponsors are not required to notify the Committee of approvals from host organisations It is the responsibility of the sponsor to ensure that all the conditions are complied with before the start of the study or its initiation at a particular site (as applicable). Approved documents The final list of documents Version Date reviewed and approved by the Committee is as follows: Document REC application: 73150/3188722/1/135 30 April 2012 Protocol 1 28 April 2012 Investigator CV: Josie Billington 28 April 2012 Investigator CV: Dr Louise Humphreys 28 April 2012 Participant Information 3 27 June 2012 Sheet Participant Consent Form 2 04 June 2012 Questionnaire: Mini 1 28 April 2012 Questionnaire- researching the benefits of reading for chronic pain sufferers Questionnaire: Client 1 28 April 2012 Service Receipt Inventory for GiR Baseline Questionnaire Questionnaire: The Warwick-Edinburgh Mental Well-being Scale (WEMWBS) Questionnaire: Assessment 1 28 April 2012 Forms Advertisement 2 04 June 2012 Letter from Sponsor from Mrs Lindsay 01 March 2011 Carter, University of Liverpool Response to Request for Further 17 June 2012 Information from Josie Billington
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7.4. Appendix 4. Measures Booklet
Chronic Pain & Reading Study Assessment Forms
Instructions Please read the instructions carefully at the top of each section. The forms will require you to think how you have been feeling over different periods of the last month. If you would like to add any further comments about your problems, you are welcome to include these at the back of the questionnaire.
Tips for filling in the questions This questionnaire may seem rather a lot of work.
When answering the questions it is best to put down the first answer that comes to mind. Do not spend too long thinking about any question.
You may find it easier to just complete one part at a time and come back later to the next part. There is no problem in completing it this way.
Be careful to answer ALL of the questions, as we will not be able to gain a complete picture of how you are recovering, unless all the sections are complete.
Thank you very much for your co-operation.
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Part A: GHQ-12 Instructions: We should like to know if you have had any health complaints and how your health has been in general, over the last few weeks. Please answer ALL the questions simply by circling the answer, which you think most nearly, applies to you. Remember that we want to know about present and recent complaints, not those you had in the past. It is important that you try to answer ALL the questions.
Have you recently . . . .
1
been able to concentrate on whatever you’re doing?
Better than usual
Same as usual
Less than usual
Much less than usual
2
lost much sleep over worry?
Not At all
No more than usual
Rather more than usual
Much more than usual
3
felt that you are playing a useful part in things?
More so than usual
Same as usual
Less useful than usual
Much less useful
4
felt capable of making decisions about things?
More so than usual
Same as usual
Less so than usual
Much less than usual
5
felt constantly under strain?
Not at all
No more than usual
Rather more than usual
Much more than usual
6
felt you couldn’t overcome your difficulties?
Not at all
No more than usual
Rather more than usual
Much more than usual
7
been able to enjoy your normal day-to-day activities? been able to face up to your problems?
More so than usual
Same as usual
Less so than usual
Much less than usual
Mores so than usual
Same as usual
Less so than usual
Much less than usual
been feeling unhappy and depressed?
Not at all
No more than usual
Rather more than usual
Much more than usual
10 been losing confidence in
Not at all
No more than usual
Rather more than usual
Much more than usual
Not at all
No more than usual
Rather more than usual
Much more than usual
More so than usual
Same as usual
Less so than usual
Much less than usual
8 9
yourself?
11 been thinking of yourself as a worthless person?
12 been feeling reasonably happy, all things considered?
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Part B: WAS People’s problems sometime affect their ability to do certain things in their daily lives. Using the scale below, please indicate in the relevant boxes how your problems affect your ability to function in any area. There are two spaces left to add any other areas you may find that you are having particular difficulty with eg reading, driving the car etc.
Rating Scale 0 Not at all
1
2
3
slightly
4 definitely
5
6 markedly
Activity 1 Work (if you are not employed, rate it imagining how your work would be affected)
7
8 very severely
Rating (0-8)
2 Manage my home
3 Socialise with other people
4 Enjoy doing things alone
5 Form and maintain close relationships with other people (including the people you live with) 6 Other? Please specify
7 Other? Please specify
If there are any other areas of your life that have been specifically affected by your problems, that you would like to tell us about, please use this space below.
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Part C: BDI In this part of the questionnaire are groups of statements. Please read each group carefully. Then pick the one statement in each group, which best describes the way you have been feeling during the past week, including today. Circle the number beside the statement you picked. If several statements in the group seem to apply equally well, circle each one. Be sure to read all the statements in each group before making your choice. 1.
0 1 2 3
I do not feel sad. I feel sad. I am sad all the time and can’t snap out of it. I am so sad or unhappy that I can’t stand it.
2.
0 1 2 3
I am not particularly discouraged about the future. I feel discouraged about the future. I feel I have nothing to look forward to. I feel that the future is hopeless and that things cannot improve.
3.
0 1 2 3
I do not feel like a failure. I feel that I have failed more than the average person. As I look back on my life, all I can see is a lot of failure. I feel that I am a complete failure as a person.
4.
0 1 2 3
I get as much satisfaction out of things as I used to. I don’t enjoy things the way I used to. I don’t get real satisfaction out of anything anymore. I am dissatisfied or bored with everything.
5
0 1 2 3
I don’t feel particularly guilty. I feel guilty a good part of the time. I feel guilty most of the time. I feel guilty all the time.
6.
0 1 2 3
I don’t feel I am being punished. I feel I may be punished. I expect to be punished. I feel I am being punished.
7.
0 1 2 3
I don’t feel disappointed in myself. I am disappointed in myself. I am disgusted with myself. I hate myself.
8.
0 1 2 3
I don’t feel I am any worse than anybody else. I am critical of myself for my weaknesses or mistakes. I blame myself all the time for my faults. I blame myself for everything bad that happens.
9.
0 1 3 3
I don’t have any thoughts of killing myself. I have thoughts of killing myself, but I would not carry them out. I would like to kill myself. I would kill myself if I had the chance.
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10.
0 1 2 3
I don’t cry anymore than usual. I cry now more than I used to. I cry all the time now. I used to be able to cry, but I can’t cry even though I want to.
11.
0 1 2 3
I am no more irritated now than I ever am. I get annoyed or irritated more easily than I used to. I feel irritated all the time now. I don’t get irritated at all by the things that used to me.
12.
0 1 2 3
I have not lost interest in other people. I am less interested in other people than I used to be. I have lost most of my interest in other people. I have lost all my interest in other people.
13.
0 1 2 3
I make decisions about as well as I ever did. I put off making decisions more than I used to. I have greater difficulty in making decisions than before. I can’t make decisions anymore.
14.
0 1 2 3
I don’t feel I look any worse than I used to. I am worried that I am looking old or unattractive. I feel that there are permanent changes in my appearance that make me look unattractive. I believe that I look ugly.
15.
0 1 2 3
I can work about as well as usual. It takes an extra effort to get started at doing something. I have to push myself very hard to do anything. I can’t do any work at all.
16.
0 1 2 3
I can sleep as well as usual. I don’t sleep as well as I used to. I wake up 1-2 hours earlier than usual and I find it hard to get back to sleep. I wake up several hours earlier than I used to and cannot get back to sleep.
17.
0 1 2 3
I don’t get more tired than usual. I get tired more easily than I used to. I get tired from doing almost anything. I am too tired to do anything.
18.
0 1 2 3
My appetite is no worse than usual. My appetite is not as good as it used to be. My appetite is much worse now. I have no appetite at all now.
19a.
0 1 3 4
I haven’t lost much weight recently. I have lost more than 5lbs (2kg). I have lost more than 10lbs (5kg). I have lost more than 15lbs (7kg).
19b
I am purposefully trying to lose weight by eating less Yes / No (please circle)
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20.
21.
0 1 2 3
I am no more worried about my health than usual. I am worried about physical problems such as aches, pains, upset stomach & constipation. I am very worried about physical problems and it is hard to think of much else. I am so worried about my physical problems that I cannot think of anything else.
0 1 2 3
I have not noticed any recent change in my interest in sex. I am less interested in sex than I used to be. I am much less interested in sex now. I have lost interest in sex completely.
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Part D: McGill PQ Part 1. Where is Your Pain? Please mark, on the drawings below, the areas where you feel pain. Write “E” if external or “I” if internal near the areas which you mark. Write “EI” if both external and internal.
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E = External Pain I = Internal Pain
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Part 2. What Does Your Pain Feel Like?
The words below describe pain. Circle ONE word in each category which best describes your present pain. Leave out any group which does not apply to you.
1
2
3
4
5
Flickering
Jumping
Pricking
Sharp
Pinching
Quivering
Flashing
Boring
Cutting
Pressing
Pulsing
Shooting
Drilling
Lacerating
Gnawing
Throbbing
Stabbing
Cramping
Beating
Lancinating
Crushing
Pounding
6
7
8
9
10
Tugging
Hot
Tingling
Dull
Tender
Pulling
Burning
Itchy
Sore
Taut
Wrenching
Scalding
Smarting
Hurting
Rasping
Searing
Stinging
Aching
Splitting
Heavy
11
12
13
14
15
Tiring
Sickening
Fearful
Punishing
Wretched
Exhausting
Suffocating
Frightful
Gruelling
Blinding
Terrifying
Cruel Vicious Killing
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Frightful Terrifying
16
17
18
19
20
Annoying
Spreading
Tight
Cool
Nagging
Troublesome
Radiating
Numb
Cold
Nauseating
Miserable
Penetrating
Drawing
Freezing
Agonising
Intense
Piercing
Squeezing
Dreadful
Tearing
Torturing
Unbearable
Office use S1-10
A 11-15
E 16
M 17-20
PRI
/ PPI
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Part 3. How Does Your Pain Change With Time?
a. Circle the word or words that describe the pattern of your pain 1
2
3
Continuous*
Rhythmic
Brief
Steady*
Periodic
Momentary
Constant *
Intermittent
Transient
*If words from group 1 are chosen, do rises in pain occur? Yes / No
b. What kind of things relieve your pain?
c. What kind of things increase your pain?
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Part 4. How Strong Is Your Pain?
1
2
Mild
3
Discomforting Distressing
4 Horrible
5 Excruciating
To answer each question below write the number of the most appropriate word in the space beside each question.
Number A
Which word describes your pain right now?
B
Which word describes it at its worst?
C
Which word describes it at its least?
D
Which word describes the worst toothache you have ever had?
E
Which word describes the worst headache you ever had?
F
Which word describes the worst stomach ache you ever had?
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Part E: MOS Below are some questions about the support that is available to you, please complete all the questions 1. About how many close friends and relatives do you have (people that you can feel at ease with and can talk about what is on your mind)? Write in the box the number of close friends and close relatives you have
People sometime look to others for companionship, assistance, or other types of support. How often is each of the following kinds of support available to you if you need it?
None of the time
A little of the time
Some of the time
Most of the time
All of the time
(Please circle one number on each line)
2. Someone to help you if you were confined to bed
1
2
3
4
5
3. Someone you can count on to listen to you when you need to 4. Someone to give you good advice about a crisis
1
2
3
4
5
1
2
3
4
5
5. Someone to take you to the doctor if you need it
1
2
3
4
5
6. Someone to show you love and affection
1
2
3
4
5
7. Someone to have a good time with
1
2
3
4
5
8. Someone to give you information to help you understand a situation 9. Someone to confide in or talk to about yourself or your problems 10. Someone who hugs you
1
2
3
4
5
1
2
3
4
5
1
2
3
4
5
11. Someone to get together with for relaxation
1
2
3
4
5
12. Someone to prepare your meals if you were unable to do it yourself 13. Someone whose advice you really want
1
2
3
4
5
1
2
3
4
5
14. Someone to do things with to help you get your mind off things
1
2
3
4
5
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None of the time
A little of the time
Some of the time
Most of the time
All of the time
15. Someone to help with daily chores if you were sick
1
2
3
4
5
16. Someone to share your most private worries and fears with 17. Someone to turn to for suggestions about how to deal with a personal problem 18. Someone to do something enjoyable with
1
2
3
4
5
1
2
3
4
5
1
2
3
4
5
19. Someone who understands your problems
1
2
3
4
5
20. Someone to love and make you feel wanted
1
2
3
4
5
Please answer the following questions by placing a cross on the relevant line to indicate your response. Example
No Support
Completely Supported
21) How supportive people have they been with your pain problems?
No Support
Completely Supported
22) How satisfied you are with the support you have received with your pain problems?
Very Dissatisfied
Very Satisfied
23) What type of support has been the most valuable to you?
Thank you very much for taking the time to complete all of the questions.
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7.5. Appendix 5. Daily Pain Record
Daily Record (week no.....8.....)
Date
Time
Pain rating (0-10) (Over last 12 hours)
Tuesday Wednesday Thursday Friday Saturday Sunday Monday
8am 8pm 8am 8pm 8am 8pm 8am 8pm 8am 8pm 8am 8pm 8am 8pm
5 2 2 1 2 1 4 3 7 1 6 3 6 2
Medication (usual or any changes?)
Usual amount One tablet less Usual Usual Usual Usual Usual Usual One tablet more Usual Usual Usual Usual Usual
Optional information Side What influenced your pain effects today? (usual or any changes?)
(Reading Group) A good night Feeling more relaxed Feel a bit more positive Feel a bit more positive Feel a bit more positive
If you forget and miss a recording, don’t worry just leave that line blank and complete the diary at the next time point.
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7.6. Appendix 6: Interview Guide
Shared Reading Study Interview Guide Welcome Time guide for interview
Demographics Age
Gender
Family & Social Situation Where do you get your day to day support from? Employment/Occupations Past Present Pain History Pain Onset & Duration Pain Pattern Do they recognise their pain pattern from the selection available to view? Trauma History Have you ever experienced anything traumatic in your life? Yes/No Are you able to tell me a little about it? Does this still affect you now? Have you received any help with this trauma? Mood History Have you suffered from depression or anxiety in the past or currently? When did this start/finish?
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Have you ever been treated for depression or anxiety? Interview Questions No
Question
1
Does the information you have recorded and I have just shared with you, reflect your mood and experience of pain over the last 9 months?
2
4
5
What has led to fluctuations? What has caused it to remain the same?
Do you think that attending the group has impacted on how you cope with your pain?
3
Response
Has your mood changed? Has your coping strategies changed? Changes in daily routine? Sleep changes? Did the literature your read trigger any of these changes?
How would you describe your experience of attending the reading group? Support? Literature triggers? Difficult? Frustrating? Was there one piece of literature that made a particular impact on you? Show list as prompt If you were to shut your eyes and bring to mind a memory from the group, what would it be?
6
7
Can you shut your eyes and describe that image to me in more detail? What would your dream be for the reading group? What were the vital elements of the
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group for you? 8
Was there anything about the group or practical aspects of attending that you would change?
9
Is there anything about the experience of the reading group or research study that you would like to tell me more about?
Closing summary
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7.7. Appendix 7. Focus Group Schedule
Shared Reading Group Focus Group Schedule Intro We are interested to hear what has attending the group meant to you over the last few months. We may find that there are some common themes that emerge for the group but we are equally interested to hear about very individual ways that you have been affected, regardless of whether this has been positive or negative. The information that you can share with us will help us to learn how to improve such groups and ways we can tailor them to fit with people’s individual needs, as well as help to obtain future funding for research and running more groups. The group will last for about an hour and although we are intending to tape the discussion to ensure we capture everyone’s points fully, by the end of it I would like to be able for us to decide together what we thought are the common themes that have emerged. Themes (prompts): 1. General intro topic a. How has attending the group been for you? 2. Impact of the shared reading a. What has reading the stories and poems meant to you? b. Changes to reading habits? 3. Pain a. What impact has attending the group had on your pain? 4. Quality of life & Function a. What has attending the group meant in terms of your quality of life and daily functioning? 5. Running of the group a. What worked well about the group to fit with your needs? b. How could we improve the group to fit your needs? 6. Recommendations for future groups a. Content & format? b. Logistics? c. Pain? d. Would you recommend it to a friend & why? Closing Comments a. b. c. d.
A summary of main themes that emerged What will happen to the information next? What happens in the research project now? What happens to the group?
Thanks from All
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7.8. Appendix 8. Reading Group Material LABOR I spent a couple of years during my undestined Twenties on a north woods acreage That grew, as the locals poetically phrased it, "Stones and rocks." I loved it. No real insulation in the old farmhouse, Which meant ten cords of hardwood, Which meant a muscled mantra of cutting, Yarding, splitting, stacking and burning. I was the maul coming down kerchunk On the round of maple; I was the hellacious Screeching saw; I was the fire. I was fiber and grew imperceptibly. I lost interest in everything except for trees. Career, ambition and politics bored me. I loved putting on my steel-toe, lace-up Work boots in the morning. I loved the feel Of my feet on grass slick with dew or frost Or ice-skimmed mud or crisp snow crust. I loved the moment after I felled a tree When it was still again and I felt the awe Of what I had done and awe for the tree that had Stretched toward the sky for silent decades. On Saturday night the regulars who had worked In the woods forever mocked me as I limped into The bar out on the state highway. "Workin' hard There, sonny, or more like hardly workin'?"
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I cradled my bottle between stiff raw hands, Felt a pinching tension in the small of my back, Inhaled ripe sweat, damp flannel, Cheap whiskey then nodded—a happy fool. They grinned back. Through their proper Scorn I could feel it. They loved it too. (for Hayden Carruth) By Baron Wormser 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. The caged bird sings with fearful trill of the things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom The free bird thinks of another breeze and the trade winds soft through the sighing trees
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and the fat worms waiting on a dawn-bright lawn and he names the sky his own. But a caged bird stands on the grave of dreams his shadow shouts on a nightmare scream his wings are clipped and his feet are tied so he opens his throat to sing, The caged bird sings with a fearful trill of things unknown but longed for still and his tune is heard on the distant hill for the caged bird sings of freedom. Maya Angelou Texts used
8/1/13
Short stories - The Snob by Morley Callaghan, The Doll’s House by Katherine Mansfield, Poem - ‘Timothy Winters’ by Charles Causley
15/1/13 Short story - The Bet by Chekhov, Poem -‘I Know Why The Caged Bird Sings’ by Maya Angelou. 22/1/13 Short story – Cathedral by Raymond Carver, Poem - ‘Kindness’ by Naomi Shihab Nye 29/3/13 All the years of her life by Morley Callaghan with ‘Those Winter Sundays’ by Robert Hayden and Sunday In The Park by Bel Kaufman with ‘A Poison Tree’ by William Blake 5/2/13
Superman and Paula Brown’s New Snow Suit by Sylvia Plath with ‘On Turning Ten’ by Billy Collins and ‘Lullaby’ by Sue Cowling.
12/2/13 Accelerate by Frank Cottrell Boyce and ‘Leisure’ W.H. Davies 19/2/13 Powder by Tobias Wolff, Penny In The Dust by Ernest Buckler with ‘The Gift’
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by Li-Young Lee 26/2/13 Fanny and Annie by D.H.Lawrence, The Road Not Taken by Robert Frost 5/3/13
Welding With Children by Tim Gautreaux with ‘To Edwin at Eight Months’ by Steve Ellis
12/3/13 In Another Country by David Constantine with ‘When I am old and grey’ by W.B.Yeats. 19/3/13 A Poetics For Bullies by Stanley Elkin with ‘The Good’ by Brendan Kennelly 26/3/13 Loose Change by Andrea Levy with ‘Geography Lesson’ by Carol Rumens
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