Reference: Version 1 17/04/2007 Research Protocol …doc.ukdataservice.ac.uk › doc › 6833 › mrdoc › pdf › 6833_research...1 Reference: Version 1 17/04/2007 Research Protocol

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Reference: Version 1 17/04/2007

Research Protocol

1. Title of project: Challenging the politics of Evidence-Based Practice: exploring the

testimony of stroke survivors in the community.

2. Principal investigator:

Dr. Sion Williams

Post Doctoral Research Fellow/Lecturer

School of Healthcare Sciences

College of Health and Behavioural Sciences

University of Wales, Bangor

Fron Heulog

Ffriddoedd Road

Bangor

Gwynedd

Postcode: LL57 2EF

3. Anticipated start and end dates for the study:

Start date: 1st June 2007

End date: 31st December 2007

4. Study

The study utilises oral history in order to in form social science practice as part of an

innovative approach using testimony. The curre nt study explores the testimony of people

who have had a stroke, describe d as stroke ‘ survivors’ in the health and social sci ence

literature. It will seek the account of stroke ‘survivors’ and their fa milies, in orde r to

understand the experience of stroke in the context of pe ople’s own li fe history and to

contrast the policy, profe ssional and academic accounts of stroke wit h the authenticity of

the person’s own (emic) voice. The oral history of stroke ‘survivors’ has not been explored

UK Data Archive Study Number 6833 - Challenging the Politics of Evidence-Based Practice: Exploring the Testimony of Stroke Survivors in the Community, 2007-2008

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as testimony and represents an empty space (a lacuna) in the historical narrative. It explores

the way a number of stroke ‘survivors’ (those living with a close family member and those

living on their own wit h stroke) make sense of the experi ence through the use of oral

history. It seeks to under stand the experience of the stroke event and its implications on

their respective biographies through interpretation and analysis of a narrative-base d

testimony (Creswell, 2005). It seeks an emic account of the nature and impact of health and

social care services on the lif e experiences of the stroke ‘survivor’ and their f amilies, their

life-transitions and ways of coping and adapting to their condition. Giving a voice to stroke

‘survivors’ challenges the perspective of social researchers who continue to characterise the

stroke experience based on models such as biographical-disruption (Bury, 2001) and illness

narratives (Hyden, 1987). Furthe rmore, by utilising oral histor y as testimony, (Quattrone,

2006) this study seeks to advance what Kanstein er (2002) argues is the poor development

of methodological approaches to find ‘meaning in memory’ in the humanities and address

’action situations’ as part of a wider historical narrative (Reddy, 2001).

4.2 Purpose

The study will enable the voice of people with stroke to be heard as testimony (Quattrone,

2006) and present a c ounter-narrative to the conceptual narrativity (Som ers, 1994) of

popular beliefs, policy and professional cons tructions of stroke. Testi mony as a produc t

provides a narrative sour ce to describe and understand the micro-history of people li ving

with stroke and maps the relationship between ontological (personal), public (community)

and master (social) narr atives during a peri od when stroke has bee n characterised as

involving ‘burden’ and ‘survival’. This perspective is central to developing a programme of

research that seeks to influence the nature a nd sensitivity of the health and social science

evidence-base. The study is a first step in establishing such a programme of research.

4.3 Rationale

Stroke remains a major c ause of mortality in the UK ( Wolfe 1996) yet the experience s of

stroke survivors (and their f amilies) that emerge from the risk of early mortality to live for

many years has been lar gely neglected (Hopman and Ver ner, 2003). The post discha rge

experience of stroke survivors and their families is characterised by an overt focus upon the

physicality of the re habilitation process and its finite scope (Brereton a nd Nolan, 2003).

Tyson and Turner (2000) describe the paucity of services following discharge and the overt

construction of rehabilitation as centred on ADL function. Furthermore, there was a lack of

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awareness of services by patients and their families, multidisciplinary prof essionals had

low expectations of patient’s abilities and ther e were particular lim itations of community

based therapy services (Tyson et al, 2000).

Towards the end of the twentieth century, Pound and Gompertz (1998) highlighted the

importance of qualitative methods in exploring the complexities of the stroke experience

and constructing an account of a ‘patient-centred study of the consequences of stroke’.

Brereton and Nolan (2003) berate the fact that there remain few longitudinal studies that

map the experiences and life of both the stroke survivor and their family carer. Yet the

research literature from the early 1990’s has drawn attention to the importance of the

impact of stroke upon both the stroke survivor and their families (Doolittle, 1991, 1992,

1994) and the need to address the experience of stroke rather than the ‘physicality’ of the

neurological damage (Doolittle, 1991). Brereton and Nolan (2003) emphasise the historical

dimension to the poor level of understanding by professionals regarding the post stroke

experience for stroke survivors and their families; issues that remains a contemporary

concern. In particular the work of Doolittle (1991, 1992, 1994) has been significant in

highlighting the lack of research and policy attention to the adaptation processes

experienced by stroke survivors and their families over time.

Overall, attempts at describing the post-stroke experience have been somewhat fragmented

(Haggstorm et al, 1994, Pound et al, 1995, Lewinter and Mikkelsen, 1995). Yet a formative

picture has emerged of a complex process of responses by the stroke survivor and their

families based on attempts to understand the sudden change brought about by the stroke

event. At the heart of the research literature the importance of biographical and family

based issues has emerged (Doolittle, 1991, 1992, 1994, Pound et al, 1995, Hafsteindottir

and Grypdonck, 1997). Nolan and Brereton (2003) describe stroke as a ‘family illness’ and

reiterate Wolfe’s (1996) observation that family carers are the most important members of

the multidisciplinary team. A number of studies have further emphasised the importance of

working with the family carers of stroke survivors and address their complex needs,

including physical, psychological and emotional needs, yet these studies also identify how

rarely these are adequately met (McLean et al, 1991, Rosenthal et al, 1993, Evans et al,

1994, King et al, 1995). Importantly, the experience of stroke by patients and their families

is poorly understood and efforts at assessing quality of life have been incomplete (Hopman

and Verner, 2003).

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The National Clinical Guidelines for Stroke (Royal College of Physicians, 2000) signified a

crucial turning point in advancing the evidence-based approach to stroke services,

reinforced by the advent of the ‘stroke standard’ in the NSF in Older People (2001) in the

English Regions. The development of National Service Framework for Older People

standards on an All-Wales basis reflects the focus of the original NSF for Older People in

2001in England and its emphasis on stroke services. The Strategy for Older People in

Wales (2001) argued for the advance of partnerships between older people and policy

development, a theme reiterated in a wider policy statement establishing the template for

health and social care in Wales as part of ‘Designed for Life’ (2005).Yet though the mantra

of an evidence-based approach is seen as central in advancing clinical practice there has

been scant accommodation of the perspectives of ‘users of services’. Colyer (1999)

indicated the how the emergence of ‘evidence-based practice’ (EBP) as a key concept in

health and social care was a feature of a dominant political culture and its acceptance was

largely uncritical. However, as Colyer (1999) notes EBP has focused solely on a dialogue

between Government and practitioners. Furthermore, Taylor and White (2000) argue that

EBP develops a constrained knowledge base attempting to (re)establish the objective ,

scientific credentials of health and welfare practice whilst not engaging in the ‘messiness’

of the ‘real world’ of health and social care.

The characterisation of people living with the effects of stroke has focused on descriptions

of ‘stroke survivors’ and ‘stroke victims’. Pound, Gompertz and Ebrahaim (1999) mapped

out key elements that countered the view that people with stroke should be characterised as

‘stroke victims’. On the contrary they noted a number of adaptive strategies developed by

patients and their carers and families, and suggests that the majority of the work after stroke

is completed by the person with stroke and their families (Pound et al, 1999). The findings

described by Pound et al (1999) highlight that challenging the negative and disempowering

perspective of stroke survivors and their families as burdensome ‘victims’ focuses on the

need to reappraise the form and function of the health and social care. As Hart (2001)

suggest the challenge facing professionals is to better understand the complex elements of

the chronicity of stroke and how services may support rather than impede the progress of

patients and families living with stroke. Dowswell, Lawler, Dowswell, Young, Forster and

Hearn (2000) reported the importance for stroke patients and their families of measuring

progress according to their biographical ‘yardsticks’. Furthermore, Dowswell et al (2000)

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identified that stroke patients and their families were able to provide ‘vivid descriptions’ of

their experiences and that this provided an unique perspective on the introduction of stroke

specialist service during the first year after a stroke to provide information, advice and

support to caregivers and patients. Bendz (2003) identified similar themes in a

phenomenographic study focused on the narrated experience of both professionals and

stroke survivors during the first year of rehabilitation after a stroke. This innovative study

identified the divergent foci of attention by the stroke survivor based on the experience of

the loss of control, fatigue and fear of a relapse and the contrasting foci of the professional

on reduced functions and training as the goals of the rehabilitation process.

The accounts of people with stroke has not been recorded as testimony and the qualitative

literature retains the usage of terms such as stroke ‘survivors’ or ‘victims’ embedded in the

constructions of disability, burden and objective measures of quality of life.

4.4 Aims and objectives

The study objectives are:

i. To seek to understand how people with stroke and their families adjust the

disabilities and reduced independence following stroke;

ii. To explore the experiences of the family and the person with stroke and their

sense of identity as ‘survivors’;

iii. To identify the strategies used by people with stroke and their families to

manage their transition to a life following a stroke , based on their own

testimony;

iv. To examine the role of multidisciplinary professionals to support people with

stroke and their families as part of their testimony;

v. To document, assemble and archive the testimony of stroke survivors as part

of the outcomes of the study.

4.5 Design and methodology

4.5.1 Methodology

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The study utilises an or al history a pproach (Roberts, 2002; Plummer, 2001; Cole and

Knowles, 2001) in order to gain the testim ony of stroke survivors and their f amilies. At its

most basic level, the oral history approach is about asking for people’s stories, listening and

making sense of them and establishing how individual stories are part of a wider ‘story’

narrative of people’s lives (Br uner, 2004; Robe rts, 2002). Such oral history produces a

narrative (Riessman, 1993). A narrative account requires three key features to be present;

firstly, a discourse as the basis for a narratio n, and secondly, the narrative has to be

attentive to time and therefore involves a temporal dimension (Roberts, 2002; Lieblich et

al., 1998). The way tim e plays a part m ay vary, but narratives involve som e degree of

consideration of past as well as p resent events. A third feature delineates the architecture

of the narrative form described by Denzin (1989) as a simple schem e consisting of a

beginning, middle and an end that is linear and sequential, has a ‘plot’ but is also past

orientated and ‘m akes sense’ to the narr ator. Mishler (1995) pr ovides a three-part

typology for classifying narratives according to the focal point of the research. Firstly,

Reference and temporal order identifies relationships between narrated events and ‘ real-

time’ events; secondly, textual coherence and structure refers to the lingu istic and

narrative strategies for the ‘constructi on of the story’ (p.7); and thirdly, narrative

functions sets the story in a wider social and cultural context.

McCance et al. (2001) highlight that interviews are the most frequently chosen m ethod

when using narratives approaches. The ‘na rrative turn’ is seen as the hallm ark of

narrative analysis and it provides a m ethod of identifying ‘ life patterns’ and

understanding, not only personal, but commun ity experience and m eanings (Plummer,

2001). However, the ‘turn’ is grounded in a pa rticular approach to the narrative as a

research endeavour and linked to a m ode of a nalysis that fits the particular narrative

‘form’, such as holistic or categorical (Lieblich et al., 1998). At its heart narrative

methods and analysis centres upon acknowledging that ‘talk’ is used strategically as well

as to represent ideas and involve social norm s, values and power (Wiles et al., 2005). It

can be seen from the fram ework presented by Lieblich et al. ( 1998) that narrative

methods involve the exploration and articula tion of language, without being constrained

solely to discourse analysis. Identity is central to a narrative-based inquiry (Bruner, 2004;

Roberts, 2002) and the weaving of the past and present elem ents of identity into a

temporal dimension develops a construction of ‘self’ that can be understood separately -

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as occurring in the past - and also synthe sized into the present into a tem porally

organized whole (McAdams and Janis, 2004). In this sense narratives are constructed and

‘authored’ by individuals with a purpose and presented as ‘unified’ (McAdams and Janis,

2004).

In this study oral history is about accessi ng the personal history and devel oping

‘testimony’. Testimony engages a ‘ political act’ and present s a commentary upon social

and political change and ‘gives a voice’ to those that may not otherwise have an

opportunity (Beverley, 2000; Harris, 2005). The representative nature of testimony extends

explicitly the role of life and oral history in documenting health care practice and

contributes to archival material (Russell, 1997) . In this study it will be used to voice em ic

challenges to etic social constructions of people with long t erm conditions, described a s

stroke ‘victims’ or ‘survivors’ . The central aim of the intervie w is facilitate the story to be

told and see how respondents make sense of thei r lives and de scribe their experience and

actions (Polinghorne, 1995).

4.5.2 Sample and recruitment

Participants (n=10) will be dr awn from a def ined stroke service population in the Stroke

Clinic, {NHS Trust name}, based on the criteria of having ha d a stroke

within the last 1- 3 years and living at home . The recruits will resp ectively include the

person with stroke and a family carer as a dyad (n=5) and also people who live on t heir

own (n=5). They will consis t of both m en and women an d include younger a nd older

people diagnosed with m ild-moderate stroke and living at hom e with a range of

impairments and disability.

The screening process for recruitment to the study will be completed by Dr. Meara as the

RMO and coordinated by Josie W ray with the Acute Nurse for Stroke using a num ber of

existing assessment tools used in the Post Discharge Stroke Clinic. P atients and their

families that meet the study’s criteria will be approached by the Acute Stroke Nurse They

will be pro vided with a detailed inf ormation leaflet outlining the aim s, structure and

duration of the study (Appendix 1). The inform ation leaflet will be available as a paper

version or on audio-tape to facilitate ease of access to the infor mation for some possible

participants, with visual im pairments. Subsequent involvement in the study will req uire

the completion of an Expression of Interest form (Appendix 1) returned to the University

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of Wales, Bangor. On receipt of the Expression of Interest form a meeting at the person’s

home will be organised to provide an opportunity for an informal discussion with Dr Sion

Williams about the study, prior to consen t forms being sign ed (Appendix 2).

Furthermore, patients and their families’ interested in participating in the study will also

be able to contact the researcher directly by telephone.

People with stroke and their carers will be asked for their informed consent to participate

in a number of interviews over time. The framework developed by Dewing (2002) will be

utilised to frame the approach to the process of obtaining and maintaining consent during

the course of the stud y. This in cludes face-to-face encounters to s eek and m aintain

consent and establishing how the person usua lly consents to activ ities and procedures

through liaison with the fa mily and m embers of the Stroke Clinic. Capacity and

competence is established by engaging a nu mber of sources and the key is ‘around

accessing the meaning of what is being communicated and interpretation’ (Dewing, 2002,

p.166). At the heart of the consent will be a num ber of stages to ensure the veracity of

informed consent, assessing the person’s:

1. Awareness of the procedure they had been through;

2. Level of competence and ability to give informed consent to a procedure; and

3. Retained a degree of verbal fluency and level of concentration.

It is considered essential that each o f these criteria underpins the consent process in the

study. Furthermore, consent will be re-affirmed at each encounter and advice from Dr. J.

Meara will be sought if the condi tion of the patient deteriorates during the course of the

study to ensure the appropriateness and veracity of consent.

4.5.3 Data Collection

A sequence of longitudinal lif e history inte rviews with participants (n= 10) will be

completed over 6 months, consisting of a narrative account of their lives with stroke. This

will involve a series of interviews to comp ile a testi mony, involving six encount ers,

resulting in a total of n=60 interviews. In the first instance an interview schedule (Appendix

3) will be used to guide t he interview process, focused on an account of their life history,

their initial impressions of experiencing a stroke and their daily life with stroke. However,

subsequent interviews will be guided by participants and explore ‘chapters’ from their life

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with stroke and other issues that emerge f rom their narrative. These interviews will be

digitally recorded and transcribed for analysis.

4.5.4 Data Analysis

The textual data will be subject to analysis using Lieblich’s (1988 et al) ‘holistic content

story’ framework and the testimony will be taken back to participants in order to establish

trustworthiness (Guba and Lincoln, 1989). The framework detailed by Lieblich et al.

(1998) highlights the importan ce of recognizing explicitly the framework guiding the

researcher and the narrative work, such as r eading, interpreting and analyzing narrative.

Lieblich et al. (1998) emphasise the connectio n between the for m (how to approach the

narrative) and function (what is the focus of analysis ): The Holistic-content framework

involves approaching the analysis as an ove rarching ‘case’ study drawing on the general

themes and em erging foci from the narrativ e. This involves read ing/listening to the

material several times until a pattern emerges focused on the whole story and its c ontext.

This results in an initial overview as well as any exceptions that challenge emerging as a

first impression and w ith unusual features such as contradictions being noted. A

particular foci or theme is identified that seems to dominate the text f rom beginning to

end, either spatially, being re petitive or through the dept h of description. These are

marked and re-read separately. Throughout this process the researcher should keep an

analytical trail through careful notation and increasing sensitivity to the text by the re-

reading process. The process of establishi ng trustworthiness (Guba a nd Lincoln, 1989)

applies to data collection and analysis, in volving checking, editin g and adding to the

interview material. In this way the testim ony is authored by participants. The interpretation

of the ‘story’ by the researcher is grounded in the procedures of ensuring trustworthiness.

6. Resources

The British Academy has provided a sm all grant to fund the research, a mounting to

£7493.00. This involves the following:

Travel costs for interviews during 12 m onths with n=10 people with stroke and

their families, involving a total of n=60 interviews. Costed at 70 m iles per

interview @ 40p per mile University of Wales, Bangor rates.: £ 1745.00

General Stationery (paper, printer cartridges: £234.00

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Transcription of audio (digital) research data 60 interviews @ 1.5 hours each = 90

hrs transcription @ £59 per hour: £5514.00

Transcription will be c ompleted at the Centre for Health Related Research (CfHRR),

University of Wales, Bangor.

7. Dissemination/Outcomes

The testimony of ‘stroke survivors’ with be made available as a digital resource

through the Arts and Humanities Data Service and Economic and Social Data

Service, the major national repositories for qualitative data, such as oral histories.

The findings from the study will be reported in academic peer reviewed journal

publications such as Oral History Society Journal and the Medical Humanities

journal.

The findings from the study will be dissemination to inform the public (through

the Stroke Association, Patients Association) and also health and social care

professionals through selected presentations at national/international conferences.

The conduct of the study will contribut e to the Principa l Investigator’s

participation in the p rogramme of post-graduate training seminars at th e Welsh

Institute for Social and Cultural Affair s (WISCA), University of W ales Bangor

funded by AHRC oral history tr aining grant, in order to highlight the contribution

of oral h istory methods in informing research in bo th the humanities and the

social sciences.

8. Timetable/Milestones

The study will comprise the following:

Date Action and/or outputs

February-

April

2007

(i) Preparation of the research plan/protocol with the clinical team.

(ii) Commence ethical (LREC) and R&D approval procedures.

(iii) Submit and m odify (as necessa ry) the protocol and docum entation

prior to approval by University of Wales review process (CfHRR), LREC

and Conwy and Denbighshire R&D.

May (iv) Disseminate general information about the study in the Stroke Clinic.

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2007 (vi) Prepare necessary documentation for fieldwork.

(vii) Identify potential recruits from the Stroke Clinic.

Juneto

November

2007

(viii) Commence recruitment from the Stroke Clinic of patients with Stroke

(and their families) based on study criteria. Initial screening completed by

clinical team. Provide detailed inf ormation to potential p articipants and

discussion involvement in the study and initiate consent procedures.

(ix) Conduct and analyse interviews with people with Stroke, their families

(n=5) and people living on their own (n=5).

December

2007

(x) Dissemination of the findings: provide testimony for people with

Stroke and their f amilies, also prov ide a br ief report for the

{NHS Trust name} outlining the findings and its implications for

practice. Write a report of the study for the British Academ y. Provide the

testimony as archive material to the Arts and Hum anities Data Service and

Economic and Social Data Service

9. Ethics

The study involves vulnerable older adults and the researcher is sensitive to the

responsibilities noted under the Research Governance Fr amework for Health and Social

Care (2001). In particular, people with Stroke in the study will have cognitive impairment

and consent will be a constan t process, re hearsed at every encounter based on the

principles developed by Dewing (2002). An e xplicit strategy for disengagement from the

research process will be in place as part of the consent process (see W oods, 2001). The

researcher will have a procedure in place to manage the reporting of abuse (Action on

Elder Abuse, 2004). Is sues discussed during interviews may well be sens itive and these

will require careful management (see Lee, 1993; Brannen, 1988). Guidance will be based

on collaboration with INVOLVE and the Stroke Association. The study will be attentive

to good practice guidelines for involving participants (see Hanley et al, 2000).

As part of good research practice, the General Practitioner responsible for the person with

Stroke will be inform ed of their involvem ent in the study once the consent procedure is

complete (Appendix 4). As a single resear cher the conduct of interviews in the

community will adhere to th e good practice guidelines adop ted by the Centre for Health

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Related Research (CfHRR) based on the ‘Code of Practice for the Safety of Social

Researchers guides the research practice’.

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Appendix 1

Patient and family Information Sheet and Expression of Interest Forms.

Dr Sion Williams Research Fellow/lecturer

School of Healthcare Sciences University of Wales, Bangor

Tel: 01248 388451 [email protected]

17

Version 1: 17/04/ 2007.

Exploring the testimony of stroke survivors in the community.

Patient and Family Information Sheet

The Study

You and your family are being invited to take part in a research study.

Before you decide, it is important for you to understand why the

research is being done and what it will involve. Please take time to read

the following information carefully and discuss it with friends, relatives

and your GP if you wish. Ask us if there is anything that is not clear or

if you would like more information; a contact address is provided at the

end of this form. Take time to decide whether or not you wish to take

part.

What is the purpose of the study?

Whilst we have some knowledge about how stroke impacts on people’s

lives, we have relatively little understanding about how people with

stroke and their close family member, then cope and adapt to their

situation from their own accounts. This is where we need your help. By

listening closely to your experiences over a 6 month period, this study




18

will try and understand what you think is important and how you went

about adjusting to your stroke and how you see your life with stroke.

The information you provide will be assembled in the form of a

‘testimony’ based on about six interviews. This means that your story of

life with stroke will be built up through the six interviews and you will

guide the researcher to assemble what is important to you in your story.

In total there will be ten people taking part, five with carers and five

living on their own. When the testimonies are complete they will be

stored in a national archive as an oral history of people’s lives with

stroke.. You will receive the final written account to approve before it is

archived and you will be able to keep a copy for your own use

You will receive a visit at home at least once a month from Dr. Sion

Williams, a researcher at the University of Wales, Bangor to listen to

your account of how you live with the effects of having had a stroke.

Dr. Sion Williams is a lecturer and researcher at the School of

Healthcare Sciences. This work is being funded through the support of

the British Academy.

Why have I been chosen?

We are looking to recruit 10 people that have been living with Stroke for

some time , 5 people living with a close family member and 5 people




19

living on their own. The study will last a year in total and involves being

seen every month for 6 months.

Do I have to take part?

No. It is up to you and your partner/close family member to decide

whether or not to take part. If you decide to take part you will be given

this information sheet to keep and, in time, be asked to sign a consent

form. If you decide to take part you are still free to withdraw at any time

and without giving a reason. This will not in any way affect the standard

of care you receive now or in the future.

What will happen to me if I take part?

If you express an interest in taking part, Dr. Sion Williams will make a

convenient appointment to see you at home. The aim of the study will

be explained to you once more and, if you are happy to proceed after this

visit, then you will be a participant in the project. Dr. Sion Williams

will then visit you at home.

First of all, Dr. Sion Williams will spend some time with you and ask

you to think about and talk about your past as well as your present life,

identifying important events that have shaped your life. In addition to

the visit, Dr. Sion Williams will ask your permission to audio-record the

interview. The length of the interviews will be agreed with you, so as not




20

to be too tiring. Your identity will be strictly confidential so only those

involved in the research will know who you are. Your name will not be

used on labelling audio recordings or in any report. The audio files will be

stored securely. You will also be given a tape recorder to record the

interview (if you wish) and listen to before the next visit. On each visit

Sion will bring the written account of the taped conversation back for

you to look at together for editing and adding further material.

What if new information becomes available?

Your participation in the study will not stop you receiving any

therapeutic treatments that your doctor feels would be of benefit to you

and is in no way linked to the care you receive from the hospital or

community services. As Dr. Sion Williams is an employee of the

University of Wales, Bangor, any complaints about your involvement in

the study can be made directly to the University; through Professor

{name}in the School of Healthcare Sciences and a complaints procedure

will be in place for this purpose. If you wish to complain about any aspect

of the way you have been approached or treated during the course of this

study, the address for Professor{Name} is:

{Name and Address}




21

What do I have to do next?

If you are interested in taking part in the study, please complete the

attached ‘Expression of Interest’ form and return it to {name}at the

University of Wales, Bangor. A stamped addressed envelope is enclosed

for this purpose. Once it is received, Dr. Sion Williams will make an

appointment to see you at home to discuss the project further. Only after

this visit will you be asked to decide if you wish to take part in the

study.

Will my taking part in this study be kept confidential?

All information that is collected about you during the course of the

research will be kept strictly confidential. With your permission, we

will tell your GP that you are taking part in the study. All information

will be confidential unless an issue you raise or a professional looking

after you has a cause for concern. If this occurs I will discuss any

concerns with you and seek guidance from Dr{name}. At that point the

information may be disclosed for the protection of the individual.

The information collected during the course of the study will only be

archived if you consent to the data being kept as part of a archive in an

anonymised form in accordance with the Data Protection Act.

Otherwise, the record of the interviews on audio files will be erased as

will the stored transcripts held on computer records. These computer




22

records will be stored during the study on ‘CD’ discs and the computer

itself.

What will happen to the results of the research study?

On completion of the study Dr. Sion Williams will compile a short

report on the findings from the study and the experiences of all those

who participated in the study for the University of Wales, the British

Academy, the {name}Trust, the Stroke Association and the

{name}Central Research Ethics Committee. Also, as part of the

monitoring process the researcher will have to produce a report for the

{name}NHS Trust Research and Development Committee. You will not

be named in this report and you will be given a copy of it.

Contact for further information

Thank you for taking the time to read this Information Sheet. If you are

still interested in being considered as a research participant in the study,

please complete the attached ‘Expression of Interest’ form and return

it to {name}in the pre-paid envelope provided. Please keep this

Information Sheet for your records. If you do decide to participate, Dr.

Sion Williams will bring a Consent Form with him to your meeting. If

you decide to sign it, a copy of the Consent Form will be left for your

attention.




23

If you would like to discuss any aspect of the study please contact:

Dr.Sion Williams

School of Healthcare Sciences

College of Health and Behavioural Sciences

University of Wales, Bangor

Fron Heulog

Ffriddoedd Road

Bangor

Gwynedd Postcode: LL57 2EF

Telephone No. 01248-388451Fax:01248 – 383186, Email: [email protected]




24

Version 1 17/4/, 2007.

Exploring the testimony of stroke survivors in the community

Yes, I would be interested in hearing more about the study:

Name:

Address:

Post Code:

Telephone Number:

Email address (if any):

Best time to Contact you? Please tick one box:

Morning

Afternoon

Early evening

Anytime

Thank you very much

Now, please place this form in the provided pre-paid envelope and post it to Miss Nyree Hulme

25

Appendix 2

Patient and Family Consent Form




26

Centre Number: Study Number: Patient Identification Number:

PATIENT CONSENT FORM Title of Project: Exploring the testimony of stroke survivors in the community Name of Researcher: Dr Sion Williams

Please initial box

1. I confirm that I have read and understood the information sheet dated 17th April 2007 (version 1) for the above study. I have had the opportunity to consider the information, ask questions and 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 confirm that I consent to the interview being tape/audio recorded by the researcher as part of the study.

4. I understand that data collected during the study, may be looked at by responsible individuals from [University of Wales], from regulatory authorities or from the NHS Trust, where it is relevant to my taking part in this research. I give permission for these individuals to have access to my data.

5. I agree to my GP being informed of my participation in the study.

6. I give permission for the researcher to use anonymised transcripts from the interview and for anonymised interviews to be shared with any other researchers or stored as data archives. Also I consent to photographic material that I may provide to be used as part of the archive.

7. I agree to take part in the above study

Name of Patient Date Signature Researcher Date Signature When completed, 1 for patient; 1 for researcher site file; 1 (original) to be kept in medical notes.




27

V3 5/02/2007 Centre Number: Study Number: Patient Identification Number:

CARER CONSENT FORM Title of Project: Exploring the testimony of stroke survivors in the community Name of Researcher: Dr Sion Williams

Please initial box

1. I confirm that I have read and understood the information sheet dated 17th April 2007 (version 1) for the above study. I have had the opportunity to consider the information, ask questions and 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 confirm that I consent to the interview being tape/audio recorded by the researcher as part of the study.

4. I understand that relevant sections of any data collected during the study, may be looked at by responsible individuals from [University of Wales], from regulatory authorities or from the NHS Trust, where it is relevant to my taking part in this research.

5. I give permission for the researcher to use anonymised quotes from the interview and for anonymised interviews to be shared with any other researchers or stored as data archives. Also I consent to photographic material that I may provide to be used as part of the archive.

6. I agree to take part in the above study

Name of Patient Date Signature Researcher Date Signature When completed, 1 for patient; 1 for researcher site file; 1 (original).

28

Appendix 3

Interview Guide: People with stroke and their families

29

Semi-structured Interview Guide

The interview guide is designed to be a starting point for a series of interviews.

Participants will shape the content and direction of the interviews. These initial questions ‘set the

stage’ for the gaining of testimony and the development of an oral history

Background to the study

Aims

Reaffirm consent procedure

Reaffirm consent to tape record interview

Right to stop the interview/life history at any time and withdraw from the research

Confidential nature of the research interview

1. Life History

I would like to start by asking you a few questions about your past life history.

2. Finding out about your life following your stroke

I would like to ask you first about your feelings initially after having had a stroke.

I would like to ask you a bit more about the stroke as it effects you now.

3. Life with your illness

I would like to ask you about your life with your stroke day-to-day.

5. Explore additional issues raised by people with stroke and their families

i. Are there any issues or ideas that you would like to raise that we haven’t discussed so far?

ii. Are there any issues or ideas that we have mentioned before/earlier that you would like to

discuss again?

Thank the person for their time and contribution

30

31

Appendix 4

Courtesy letter to GP

32

Specimen letter to be used to inform GP of subject recruitment. Letter to be sent once agreement to participate

has been confirmed and interview details established.

Dear Dr. ..............................

re: Advanced Notification Of One Of Your Patients Taking Part in a Research Study

VISIT TO: Mr. X

ADDRESS:

D.O.B:

Date of First Visit:

Mr. X has given me permission to inform you that he is being part of a research study that is being co-

ordinated through the Stroke Clinic in the{name}. I have enclosed a brief summary of the study that seeks to

collect the testimonies of people living with stroke (see enclosure).

The research involves (at least) monthly visits by me to his/her home to listen to his experiences of living with

stroke and ways of managing his/her experience. It is longitudinal and will involve a series of visits over a 6

month period.

The research has been approved by the {name}Central Research Ethics Committee and Dr.{name},

Consultant Physician at the{name}. If, prior to my visit, or during the course of the research work you have

any questions please do not hesitate to contact me at the above address.

Yours sincerely

Dr. Sion Williams