Walton neuro rehabilitaiton unit

[Type text]

READING AND TALKING: EXPLORING THE EXPERIENCE OF TAKING PART IN READING GROUPS IN WALTON NEURO-REHABILITATION UNIT (NRU)

Dr Jude Robinson

Research Report 114/08 May 2008

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CONTENTS

Acknowledgements ..................................................................................................................................ii Introduction .............................................................................................................................................. 1 Background to the Walton Centre Reading Group .................................................................................. 1 Aims ......................................................................................................................................................... 2 Methodology ............................................................................................................................................ 3 Ethical Considerations ............................................................................................................................. 5 Analysis.................................................................................................................................................... 5 Brief Summary of the findings ................................................................................................................ 6 Outputs ..................................................................................................................................................... 9 References .............................................................................................................................................. 10

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ACKNOWLEDGEMENTS I would like to acknowledge the help and assistance of staff working at the Walton Centre, particularly David Melia and Jane Findlay, and to Bea, Helen and Jane at the Reader, all whom were able to envisage how taking part in a reading group could benefit people recovering at the NRU. I would also like to thank the patients and volunteers at the NRU for inviting me into their group and allowing me to share their experience of reading, listening and discussing poetry.

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INTRODUCTION Although the popularity of reading groups in the UK has never been higher, and some reading-andhealth projects have been initiated, such as GP referred bibliotherapy schemes, there has been relatively little research in the UK on how the act of reading and discussing works of literature may influence people’s health and sense of wellbeing (Hodge, Robinson & Davis, 2007). In their recent survey of reading-and-health projects, the Reading Agency for the Arts Council England concluded that there was relatively little attention given to reading-related work, and highlighted the lack of empirical research in this area (TRA, 2003).

One of the most active community based reading initiatives in the UK is run by a team at the Reader (www.thereader.co.uk) based at the University of Liverpool who have set up reading groups in areas of Merseyside with hard to reach populations who may not otherwise have thought about joining a reading

group.

Get

into

Reading

(www.getintoreading.org)

and

Liverpool

Reads

(www.Liverpoolreads.com are two such initiatives, and last year Dr Suzanne Hodge and Dr Jude Robinson, from the University of Liverpool started to explore possible ways of researching the ways in which people were participating in the groups, and how this may affect their positive mental health and wellbeing (Hodge, Robinson, & Davis, 2007).

Background to the Walton Centre Reading Group The Walton Centre for Neurology and Neurosurgery (WCNN) NHS Trust in Fazakerly is the only fully integrated neurosciences trust in England, and admits patients with neurological conditions from all over the North West. The Neuro- Rehabilitation Unit (NRU) has a sixteen bedded in patient unit with patients staying there between 3 weeks and 9 months before their eventual discharge to either a home or care setting. The mission statement of the NRU is as follows: ‘Our primary aim in the NRU is to enable people with a disabling neurological condition to achieve their potential and to adjust to any permanent disability that may remain. In order to achieve this aim we will work in partnership with the person their families and carers’. http://www.thewaltoncentre.nhs.uk/site/services/sub-page.asp?sub=11&subid=6

In 2006, people working at The Reader were invited by Jane Findlay and David Melia, the Trust’s acting Director for Nursing, to set up a reading group in the Neurological Rehabilitation Unit (NRU) at the Walton Centre. The reading group at the NRU was been facilitated by Dr Helen Tookey (Get into Reading) and Bea Colley (Liverpool Reads) and was open to patients living at the NRU, JR/TQ/WaltonNRUfinal report

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volunteers, outpatients visiting the NRU and also their friends, relatives and carers who may be visiting or accompanying them. Helen and Bea led and facilitated the reading and discussion of books, short stories or poems with a group of 2-10 people, living in, working or visiting Walton NRU. The aim of the project was to: ‘… use literature, and the presence of a reader, to provide enjoyment, interest and mental stimulation for in-patients… [who] are often depressed, bored or frustrated by their enforced stay in hospital; they may also be struggling emotionally to deal either with a long-term neurological condition or with sudden disability following a head injury or stroke. Reading and discussing with a regular visitor can give them a different focus and provide both stimulation and distraction.’ www.thereader.co.uk/community/index.php

Unlike other reading groups, where group members may agree to read a book (privately) outside the group, and then come to the group to discuss it, at Get into Reading projects, all of the reading activity takes place in the group (publicly), using shared copies of texts to encourage group members to either follow, or contribute to, the reading of the texts. This method is participative and all group members are encouraged to read, listen, discuss, and reflect on the readings in an informal and supportive environment (Hodge et al., 2007).

AIMS As there has been little research conducted in this area, this research is exploratory, and aims to capture (i) what happens when people get together in a group to read a text aloud, and to talk about the text, and (ii) to explore how participation in a reading group may relate to aspects of their physical and emotional recovery.

Research questions Who participates in the group and how much and how often?

How do people participate, i.e. do they actively discuss issues, volunteer to read, read when asked, decline to participate, support the participation of others?

To what extent are the discussions prompted by the facilitators and to what extent are issues raised by the text itself, or through further discussions?

What is talked about, and does this relate to their past and/ or present lives?

How does this relate to their physical and/ or emotional recovery?

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METHODOLOGY Overview of the research Observations of four reading group sessions, which were audio-taped.

A mini-questionnaire completed by participants One 30 minute focus group discussion with the reading group participants.

Recruitment to the project A total of seven people, 5 patients and two volunteers, came forward to take part in the reading groups over a period of four weeks, and everyone present at each of the four sessions agreed to take part in the research. As the groups were open and membership was fluid, consent for the researcher (JR) to be present and to audio record the sessions was be sought from everyone present, including the facilitators at each session.

However a number of issues emerged during recruitment. (i)

Although the researchers were aware through prior consultation with people working at the Walton NRU that many people would find signing difficult, and so proposed verbal (audio taped) consent as the most appropriate mechanism, the ethical review committee required participants to give signed consent. Many people did find it hard to hold a paper, let alone a pen, and in many instances, after a struggled attempt the researcher (JR) was asked to sign for the participant, and entered 'Could not sign' and initialled it.

I wish that the ethical committee could have showed more sensitivity and a greater understanding of the physical impairment of the participants and accepted that for this project, verbal consent would have made more sense, and caused less embarrassment and/ or inconvenience to people taking part in the research.

(ii)

The ethical committee also insisted that people taking part in the reading groups had to give signed consent EACH time they took part in a reading group session, and for the reasons given above, this proved to be time consuming and a source of considerable irritation to the participants. During the focus group discussion the participants expressly asked that 'whoever' had insisted that people have to give consent every time, be made aware that they, the participants, thought that it was unnecessary, irritating and patronizing, and they wished that they had been enabled to give consent at the beginning of the study, and then withdraw their consent if they wished.

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(iii)

There needs to be greater co-ordination between the staff and the reading group organisers, as although the reading groups ran at the same time each week, and had done for some time, people who may have wished to take part, but would have needed assistance to have done so, were often still in their rooms, waiting for help to get up, or had an appointment scheduled for that time, and so missed the start of the group.

Participants expressed their frustration that with so little to do during the day, they had to miss a reading group session to attend a Physiotherapy session (for example), and then would have nothing to do all afternoon, or the rest of the week.

(iv)

To make sure the sessions were open and accessible to all patients they were held in the communal sitting room. However this area was not particularly private, and on a number of occasions some members of staff interrupted the sessions, either by taking people to an appointment, or by talking loudly across the groups as the participants were reading.

Observing and recording four reading group sessions.

The reading group were scheduled to meet once a week, for just over an hour for each group session.

There are a number of dimensions to group participation, which include:

(i)

action (reading, active listening and other forms of non-verbal communication) which will be captured by the researcher (JR) as a non-participant observer at each of the four sessions.

(ii)

discourse (reading, talking, questioning, discussing etc.) which will be partly captured by observation (i.e who is talking) but principally by digitally recording and then transcribing all of the sessions. This will also capture periods of silence within the discussions.

(iii)

context (where the group is taking place, the wider physical and social environmental context) will form part of the observation.

Four sessions were observed and notes were taken throughout the group sessions. These notes provide useful additional data, and include the reflections of the researcher (JR).

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Mini-Questionnaires Each of the group participants was asked to complete a mini-questionnaire, designed to elicit some basic demographic data, namely their sex, age and ethnicity, and what they consider to be their first language. All participants gave English as their first language. People who had difficulty reading or completing the form were assisted to complete them by the researcher (JR). The five patients taking part in the research were asked for some additional information, including when they were admitted to Walton, the reason why they were admitted, and the date they came into the NRU at Walton.

Focus Group for the reading group participants At the end of the final reading group session (week 4 of data collection), participants taking part in the reading group were asked to participate in a short focus group discussion, which lasted about 30 minutes) moderated by JR. They were asked to reflect on their motivation for taking part, their experiences of taking part, and finally whether they had any views, comments or insights to make about being involved in the research. This discussion did not include the facilitators, and they were not present during the discussion, which was audio recorded and later transcribed.

Ethical Considerations This research was conducted within an ethical framework that respected the autonomy and right to privacy and confidentiality of all of the research participants. All data will were stored securely within the University of Liverpool, according to University guidelines. Pseudonyms are used to refer to respondents in any written material, and the data will be seen only by members of the research team.

This research project was submitted for ethical approval to Salford & Trafford REC, and for site approval by The Walton Centre for Neurology and Neurosurgery Research Governance Committee.

Analysis The ethnography of speaking The audio recordings of the reading group sessions were transcribed verbatim, using appropriate annotation to prepare the text for an ethnographic approach to conversation analysis, in which the reading groups are presented as examples of speech situations. This level of the analysis was informed by the observations of the group and the immediate setting, and the wider social context within which the groups take place will be explored. Further analysis of the text involved the identification of patterns and structures of the different speech events, such as turn-taking, interruptions, participation, and silences.

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The notes from the observed sessions enabled the researcher to identify the speakers. Specific speech acts such as the use of anecdote, questioning and reflection were identified as part of the analysis, enabling both the exploration of what was talked about and how particular issues were talked about, based on the premise that talk can communicate other things about people and their lives. Particular attention was paid to the ways in which prose and poetry prompted and stimulated participants to express their emotions, and reflect on aspects of their lives. This approach enabled the exploration of the ways in which people recovering from neurological trauma were able to engage with the often abstract and complex concepts and ideas that are presented to them in prose and poetry, and how they responded to the communication of these ideas.

The focus group discussions were analysed thematically, and the demographic data from the miniquestionnaire was used to describe the participants. These data are used to further contextualise what happens in the reading groups discussions, and what taking part means to the participants.

BRIEF SUMMARY OF THE FINDINGS The results of this analysis are currently being written up as a journal article, to be submitted for peerreview in Medical Humanities, and the following represents a brief summary of the findings:

Eliciting and evoking memory and reflection From observing and talking to participants in the reading groups, poetry seems to be a powerful means of evoking memories and emotions in participants, and by discussing the words, phrasing and meaning of the words, it enabled people to talk about themselves, reflect on their lives, have conversations and discussions about moral and spiritual issues, and tap into memories, all of which contributed to 'recovery goals' for people recovering from neurological trauma. People drew on their past lives to introduce topics for dicussion or reflection, rather than their ‘present’ situations, establishing their identity as people with lives, as well as patients with neurological conditions. There were also ‘silences’ within the group, where people took time to think about the poems, and also complete attention and ‘stillness’ while the readings took place. It is notable how the sessions appeared to engage participants so completely, that the noise of their surroundings seemed to recede as they focussed on the text and its meaning.

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The importance of social contact The 'socialising act' of bring people together, to interact, to take turns reading, talking, or listening as they prefer, was in itself regarded as an achievement by the people taking part in the research.

Participants in the focus group discussions talked about how their condition had made them withdrawn, and that they had lost their confidence as their speech had become slurred and their memory impaired. Taking part in the groups, particularly talking to people about something other than their condition, or the food, was very important to them, and they were aware that they got to know other people in a much deeper and richer way than they would otherwise have done.

Through talking, and sometimes reading, the group participants were aware that they were 'remembering' words and events, or language sequences, and also improving their overall ability to use speech and language to communicate.They also gained social confidence by talking to other people in the group, and simply hearing and watching them read empowered them to try and do the same. To an observer, the encouragement they received from the other participants was extremely moving, as every word they managed to read, however indistinct or slow, was listened to with complete attention by the others, and the reader was warmly praised and congratulated at the end. Peer support appeared to be an essential part of the experience, and was valued by all the participants.

The form and nature of poetic expression The form of poetry, particularly its 'shortness', held people's attention, as they found that they could master the 'entire' work without too much mental effort and could remember words, phrases or passages if they were unable to read and relied on listening (i.e. can't hold a paper, blind, have dificulty reading for other reasons). The use of poems also offered flexibility, as they could miss the start of the session and quickly catch up with the next poem, or could miss a week, and could rejoin the group at any time. This flexibility was particularly appropriate for the NRU, as patients were discharged, admitted, re-admitted, and even suffered adverse incidents which meant it was impossible to predict who would attend from week to week.

Equally important to participants was the knowledge that if they didn't like that particular poem, they would perhaps like the next one, rather than find themselves locked into reading a book they didn't like week after week. The other strength of poetry, reflected by participants in the focus group discussion, is that poetic works include emotional and challenging subjects, such as pain, love, loss and death. In the groups, people didn't shy away from these emotional subjects and positively engaged

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in the discussions, drawing on their own lives to explain how a point or word resonated with them, and occasionally reflected on their recent diagnosis/ treatment and current hospital stay.

The majority of participants reflected that they would not previously have read poetry, and were surprised to find how much they enjoyed reading it and listening to other people read. Their last contact with poetry had been at school, and they often couldn’t recall any individual poems they liked.

Copies of the poems were given to each of the participants, and some people chose to take them away to read later.

The structure and delivery of the reading groups The structure of the reading groups meant that participants were free to chose whether or not they wanted to enter into the discussions, and so did not have to contribute if they would rather listen. To this extent, the reading group model is unlike the conventional rehabilitative therapy that participants are offered while in the Walton NRU, as the group isn't goal driven, so people can participate as much or as little as they like and are expert in their opinions, which is a constrast to other aspects of their daily life on the ward. The participants also commented on how the skilled facilitation of the groups had helped them to contribute to any discussions, given them to confidence to join in the reading, and stimulated them to more actively engage with the poems.

The choice of poems was also important, as the facilitators responded to the interests of the group, and tried to introduce poems that the group would enjoy, either in terms of the subject or form of the poem (contemporary or classic), which seemed to have helped to draw people into more actively participating in the group. There was some indication

that people were unfamilar with poetic

conventions, as they paused at the end of every line, but were never overtly ‘corrected’ by the facilitators, who appeared to prefer that they found their own way of reading and making sense of the lines.

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Outputs A brief (two page) summary of the findings is being prepared to feedback the findings to the participants and to anyone interested in the research. This summary will include a web link and further details of how to access this report of the findings, and this will be made available to key stakeholders (people working at the Trust, patients, relatives /carers).

As the research findings indicate that the act of taking part in reading groups can benefit patients, it is hoped that the summary and report will be used by staff at The Walton Centre, Get into Reading and Liverpool Reads to secure further funding and to promote the reading groups. This research is being written up as an article for submission to a peer-reviewed publication, and so contribute to the evidence base around reading and health. The findings from this research project formed part of the Reader’s ‘Get into Reading’ panel at the conference ‘Beyond the Book: Contemporary Cultures of Reading’. 1st & 2nd September 2007, University of Birmingham, UK

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REFERENCES Hodge, S., Robinson, J. & Davis, P. (2007). Reading between the lines: the experiences of taking part in a community reading project (Vol. 33, pp. 100-104).

TRA. (2003). Reading and Health Mapping Research Project: The Reading Agency for the Arts Council England.

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