Maria Stuttaford
email: maria.stuttaford@st-andrews.ac.uk

Claudette Bryanston

Gillian Lewando Hundt

Myles Connor

Margaret Thorogood

Stephen Tollman

Use of applied theatre in health research dissemination and data validation: a pilot study from South Africa

Keywords: dissemination, stroke, South Africa, theatre, validation

à la diffusion de documents scientifiques de niveau recherche, publiés ou non, émanant des établissements d'enseignement et de recherche français ou étrangers, des laboratoires publics ou privés.

Introduction

The focus of this article is the use of applied theatre for the validation of data and dissemination of health research findings. The findings from a multidisciplinary study were complex and the research team was committed to communicating findings back to participants. At the same time the team wanted to check data validity by returning to respondents and presenting research material. The article begins by reviewing key literature on applied theatre and defines what is meant by applied theatre as used in this pilot study. It then provides an outline of the anthropological component of the Southern African Stroke Prevention Initiative (SASPI), the methods used and key findings that were reported through the applied theatre. The development of Xiseveseve (coming together to share) is described and impressions of the fieldworkers and 'spect-actors' (a term introduced by Augusto [START_REF] Boal | Theatre of the oppressed[END_REF] to describe directed participation by members of an audience) are presented. The article concludes with a consideration of the further use of applied theatre in data validation and health research dissemination.

Using applied theatre for research dissemination and validation

Theatre is frequently used in health promotion, education and the training of health professionals [START_REF] Fenn | Arts in Health -research findings[END_REF]Public Health News, 2003;[START_REF] Drum | The Communication Initiative[END_REF]The National Network for Arts in Health, 2004). Role-play and other drama strategies have been used to replicate the work situations of health professionals to support training and develop customer care. Specialist art therapists draw from the visual and dramatic arts focusing on participation within a therapeutic setting as a means of supporting healing. However, the focus here is actually on using theatre in the validation and dissemination of health research findings.

The research team used applied theatre in that the work was performed to an invited public audience. This work was not concerned with educational drama, often referred to as process drama. Such work takes place within a closed workshop, the participants are the only audience and the aim of the work is almost exclusively educational.

Applied theatre can be described as theatre that is created for a specific need. It usually takes place in non-theatre spaces and is motivated by a desire to generate social change. Many of the most innovative theatre health: 10(1) companies are driven by the desire to create theatre for those who might not usually attend mainstream theatres or art centres. Such theatre happens in a wide variety of settings and communities, from formal institutions such as schools, prisons and hospitals to informal spaces such as community centres in deprived urban areas and rural communities. Theatre has no borders and finds its forms in the existing cultural expression of the communities that create it. It offers the means of creating an analysis of the economic, cultural and social conditions, particularly of the very poor.

Theatre can be created for specific groups such as the elderly, pre-school children or people with physical or learning difficulties. Some of the most exciting theatre stems from the rich diversity of the multi-cultural communities working in the arts in the UK. Perhaps the most influential British work in this field has been the pioneering work of Theatre in Education. This type of theatre can be called 'applied' as it is created specifically to support the education of young people and children in schools. It was developed in England in the early 1950s. The first Theatre-in-Education company produced work from the Belgrade Theatre in Coventry and provided a free service to all the schools of the city until the early 1990s.

In recent years, the term 'applied theatre' is being used in UK academia to define theatre that is not accurately described by the umbrella term of Community Theatre or Theatre-in-Education. It has come to be the term used to describe theatre that has been created for an explicit purpose. For example, in this pilot project that purpose was to disseminate research findings in a particular place to a specific group of people. Applied theatre has a growing place in a complex world where its power as a medium that offers clarification is unique, not only using the spoken word but also the erudition of signed meaning through images and the universal language of physical theatre.

Several advantages have been put forward for using applied theatre in dissemination of research findings. The live performance of findings serves to concretize, rather than abstract, the experiences of research participants [START_REF] Paget | Performing the text[END_REF]. Applied theatre presents research in a way where there is audience engagement with research material and therefore there is greater potential for transforming social understanding than with textual presentation [START_REF] Gray | The use of research-based theatre in a project related to metastatic breast cancer[END_REF]. In this way it challenges the academic privileging of written text [START_REF] Paget | Performing the text[END_REF]. Often, but not always, the theatre is created through composites as focal points for audience members to discuss their own experiences of topics and is often used to gain access to the 'closed world' of the participants. It is 'a means to give insight into the lives of those who have become marginalised and disempowered through their relationships with health' (Mienczakowski, 1997: 163). It fits the critical social science approach that research should empower participants to change the context in which they operate or the way they behave.

The final contribution of applied theatre is towards validity. One way of assessing validity is by returning to respondents and presenting research material to them. This not only guards against researcher bias and improves credibility [START_REF] Lincoln | Naturalistic inquiry[END_REF] but also demonstrates that the researcher values their contribution. Applied theatre has an advantage over textual reporting in terms of validity because it sustains connections with emotions and the sensory experience [START_REF] Mienczakowski | Theatre of change[END_REF][START_REF] Paget | Performing the text[END_REF][START_REF] Gray | The use of research-based theatre in a project related to metastatic breast cancer[END_REF]. It can also validate data through post-performance feedback [START_REF] Gray | The use of research-based theatre in a project related to metastatic breast cancer[END_REF] Various approaches to developing an applied theatre production have been documented [START_REF] Mienczakowski | On the road to catharsis: a theoretical framework for change[END_REF][START_REF] Goldstein | Hong Kong, Canada: Playwriting as critical ethnography[END_REF][START_REF] Saldaña | Dramatizing data: A primer[END_REF]. For example, in 2003, Making Research Count commissioned a production from Geese Theatre called Trauma (Making Research Count, 2003). This production utilized material from several workshops held during 2002 with public sector and voluntary sector agencies examining research and experience of domestic violence and mental health practitioners to develop a script, which was then performed by professional actors to practitioners. An alternative approach was taken by [START_REF] Liebling | Ugandan women's experiences of violence, rape and torture during civil war years in Luwero District: Implications for health policy, welfare and human rights[END_REF] to feed back her research on Ugandan women's experiences of violence, rape and torture during the civil war in that country. A community-based drama group presented the research at a local community workshop.

Although the diversity of approaches has been documented, less has been reported on potential shortcomings. A key issue that arose in this pilot study was that of ethics. [START_REF] Saldaña | Ethical issues in an ethnographic performance text: The 'dramatic impact' of 'juicy stuff[END_REF] raises questions about who should perform the theatre and of what text to select for inclusion, avoiding simply selecting text for 'dramatic impact'. Disclosing the identity of people also requires consideration. For example, research participants may or may not perform their own data and anonymity must be protected where that has been guaranteed. [START_REF] Cornwall | Performance and participation: An overview[END_REF] points out that artistic forms need to be used with caution as they may serve to reinforce an existing order. Artistic forms may also be appropriated by the powerful and used as an instrument of oppression. Malunga (2000) explored ethnic dances on the copper mines in South Africa between 1920 and 1960 and shows how traditional dances were supported by mine management as a means of social and labour control in so far as it kept workers 'constructively' engaged at the weekends.

Adopting the principles of participatory research will assist in addressing these potential shortcomings. Cornwall (1997: 23) provides an overview of participatory uses of the arts in development and describes how participatory performance is characterized by 'working with and from people's own realities and using their own modes of expression. Local people replace outsider scriptwriters, illustrators, editors, directors and actors and become active participants in creating and exploring solutions to real-life dilemmas.' Theatre enables us to examine the human condition from the outside but close to the real experience. An audience is able to examine the world through a dramatic lens that both heightens and clarifies its issues. Theatre tells a story. If the story depicts a familiar world, the shared experience of the audience is enhanced. If the line between the audience and the players health: 10( 1) is blurred and the audience is invited to cross that line and tell his or her version of the story with the players, then the members of the audience acquire a certain authority. They are the experts. This authority is possible when the audience can draw upon their expertise relating to the presented events. Theatre presents stories as dramatic problems; these problems can be handed to the audience. Participatory theatre is often a core element in Theatre-in-Education and can take many forms. The most effective of these have been appropriated from Augusto Boal's interventionist theatre. His (1979) work developing Teatro do Oprimido (Theatre of the Oppressed), as set out in his seminal text, gained international recognition as a theoretical model of revolutionary theatre. This approach has been described also as Forum Theatre.

Boal connects collective social narratives of everyday oppression [START_REF] Mienczakowski | Theatre of change[END_REF]. The audience in Boal's (1992: 28) theatre are known as spect-actors:

In Forum Theatre at no time should an idea be imposed. Forum Theatre does not preach, it is not dogmatic, it does not seek to manipulate people. At best, it liberates the spect-actors. At best, it stimulates them. At best, it transforms them into actors. Actor -he or she who acts. Paterson (1994: 37) presents his observations of the discovery of Boal's Forum Theatre:

The breakthrough moment came when a woman in the audience said that the wife on stage, dominated by her husband, needed to have 'a very clear' discussion with him. The woman was so upset by the actors' apparent inability to do what she imagined that she walked onto the stage and showed what she meant -beating the husband/actor with a broom until he stopped abusing his wife.

In Forum Theatre, people from the community decide what the important issues are. Either people from the community, or actors from Boal's company then enact a dramatization of the specific issue. A 'joker' -or facilitator -then reminds the spectators, as the company performs a second time, that they are encouraged to enter the action -to become spect-actors.

The term 'applied theatre' as used in this pilot study draws upon the principles and traditions of Forum Theatre [START_REF] Boal | Games for actors and non-actors[END_REF], community theatre, Theatre-for-Education, Theatre for Development (PLA Notes, 1997;[START_REF] Prentki | Must the show go on? The case for Theatre for Development[END_REF], research-based theatre [START_REF] Gray | The use of research-based theatre in a project related to metastatic breast cancer[END_REF], ethnodrama [START_REF] Mienczakowski | Theatre of change[END_REF] and performance of research findings [START_REF] Paget | Performing the text[END_REF]. The multiplicity of media that can be used for any narrative -from the simplicity of someone standing in a space and telling a story, to the use of complex technology -replicates our diverse situations and has a wide variety of possible applications. If the majority of the theatre makers are drawn from the community it serves, the semblance of the product and the integrity will be promoted. The work will not patronize but will open up a series of questions, possibilities and even solutions.

Stuttaford et al.: Applied Theatre in Health Research Dissemination

Setting and methods

The SASPI was a multidisciplinary study drawing on epidemiology, anthropology, public health, neurology, geography and psychology. Ethics permission was received from the Ethics Committee of the London School of Hygiene & Tropical Medicine, England and the Committee on Human Subjects, University of the Witwatersrand, South Africa.

The aims of the SASPI were to explore the growing problem of cardiovascular disease in rural Africa, by exploring the prevalence of strokes, the identifiable risk factors, lay understandings of stroke and its causation, and the burden of stroke on households and the wider community.

This article focuses on the dissemination and validation of findings from the anthropological part of the study focusing on health beliefs and behaviour concerning symptoms of weakness down one side of the body or stroke-like symptoms. Data was gathered through rapid ethnographic assessment (REA) and participatory methods in six villages. The fieldworkers in the study team were members of the University/Medical Research Council Rural Public Health and Health Transitions Research Unit (also known as the Agincourt Unit) of the University of the Witwatersand. The Unit carries out a regular annual census update of all vital events that have occurred in the past year. The Unit has an ongoing annual programme of community feedback meetings within which census and project-linked research findings are disseminated in a formal way. In addition to taking part in this existing programme of dissemination, the SASPI research team wanted to validate their findings and use a more interactive method of dissemination. In the six villages where the team had worked intensively with residents, it was decided to use an applied theatre approach.

The study was conducted in the rural Agincourt sub-district of Bohlabelo District, South Africa. This border region of northeastern South Africa was part of the homeland of Gazankulu during the apartheid era. The process of forced villagization occurred in the 1960s. Agincourt comprises 21 villages and has a population of some 70,000. Close to a third of the population are self-settled former Mozambican refugees who migrated to Agincourt during the civil war in Mozambique in the 1970s and 1980s. The inhabitants are largely the Shangaan people.

In the part of the SASPI study reported here, households were asked what they thought the important health issues in their villages were, their beliefs about weakness down one side of the body, their health-seeking behaviour and the impact of stroke on the household. REA and participatory diagramming and visualization were used with 105 households and with group interviews. Thirty-five stroke survivors participated in in-depth interviews.

Informed consent was requested at the community and individual levels. First the induna (headman) in each village was approached and he then called a village meeting. Three local fieldworkers (PR, RM and EM) health: 10(1) explained the study aims and requested permission to work in the village. Once permission was granted, written consent was requested from individual interviewees. These same fieldworkers participated in the development and performance of applied theatre.

The REA took place between March and October 2002. REA uses a range of ethnographic and qualitative research methods to gain a contextual understanding of community beliefs and explanations of health. It is similar in approach to rapid appraisal techniques and uses methods of ethnography -participant observation, individual interviews, and focus groups selected through snowballing.

Participatory techniques of village mapping, illness ranking and listing of sources of care were conducted at this meeting and followed by health walks with individuals around the village. Subsequently, individual and natural group interviews were held with a wide range of people. The groups included football teams, care groups, burial societies, saving societies, healers, church members and gardening groups. The individuals included older and younger women and men, prophets, inyangas (healers), pastors, shop owners and teachers. In addition, interviews were held with some private doctors and nurses at the clinics. The interviews were conducted in Shangaan and written up in extended notes in English by the fieldworkers.

The household interviews were conducted with 35 stroke sufferers and their main carers. They were identified through a screening question asked during the annual census update carried out by the Agincourt Unit, with subsequent confirmation of the diagnosis of stroke by a study physician (The SASPI Team, 2004a). The interviews were tape-recorded and translated and transcribed by the fieldworkers. All of these interviews were then analysed with the assistance of NVivo software by GLH 1 and MS. The REA material was principally coded by MS and the household interviews by GLH. The coding nodes were checked for inter-reliability by several transcripts being coded independently by both GLH and MS and then being compared.

Xiseveseve (coming together to share)

The research team decided to adopt applied theatre in order to address the following aims. First, to validate research findings. Second, to deepen understanding about where and how to get better support, care and management of stroke-like symptoms. Third, to provide local people with the opportunity to voice (as in forum theatre) possible models of community interventions.

Social context of health

In looking at community perspectives of health and illness, people were asked about what they thought their important health issues were. People related health to livelihood issues of water, electricity, food and employment. In this community, as with other rural South African communities, it was found that there is a mixed household economy of formal and informal paid work, unpaid work and social care grants. The latter -including pensions, child grants, foster care grants and disability grants -are often the most reliable income source for households. The diversified livelihood systems that influence health are gendered, generational and multi-spatial, and reflect access to political capital [START_REF] Stuttaford | Health and livelihood systems: gender, generation, space and political capital -findings from the SASPI study[END_REF].

Plural understandings of health, illness and stroke

The SASPI study also aimed to answer the questions: what are the lay understandings of strokelike symptoms and what are the health-seeking behaviours of residents in the Agincourt area? The main findings were that health and ill-health are considered to be both physical and social in origin and as a result plural healing -using both clinical and social diagnostics -are sought. Most people maintain their physical, mental and social well-being and deal with ill-health by visiting both doctors and healers, prophets and churches (The SASPI Team, 2004b, 2004c).

Who bears the burden of stroke?

The final aspect of the SASPI study to be disseminated using applied theatre looked at how households cope with the burden of disability and illness. Stroke is a sudden event that alters the lives of the stroke sufferer and their household irrevocably, and for the most vulnerable this can be catastrophic. It was found that individual and household vulnerability is ameliorated to a limited extent by accessing social and financial capital.

The impact of misfortune is also mediated by strategies that involve being cared for by family members, social networks and associations, and healers, prophets and churches. Although public clinics and hospitals, and private doctors, offer care during the acute phase immediately following the onset of stroke, the household members, healers, prophets and churches handle chronic management. Very few stroke survivors were using biomedical means of secondary prevention, such as aspirin or taking anti-hypertensive medication (The SASPI Team, 2004c).

An outline of the development of the applied theatre Xiseveseve

MS and GLH were based in England and were familiar with the SASPI study and setting, MS as a research fellow and GLH as a co-investigator. When it was decided to use applied theatre, CB joined the team with her expertise in applied theatre. Through CB, the research team learnt about this approach and she provided practical training and theoretical guidance. MS then visited the field site, with: the practical skills gained from CB, a health: 10(1) rough idea of several actions and an outline of the key findings the research team wanted to disseminate and validate. Over two weeks, working together in a community centre in Agincourt, MS, BN, RM, PR and EM developed and performed the actions for Xiseveseve. The local knowledge of RM, PR and EM as residents, together with what they had learnt from the data collection, as fieldworkers, was vital in working out appropriate forms of presentation of the findings.

Due to issues of confidentiality, no one particular 'typical' case was presented. Nor were direct excerpts from interview transcripts used to create a formal script. Rather, the data analysis and familiarity with the data led to the development of a composite picture of the three themes. There were several ethical questions that were debated and these were generic to this approach. These include: the extent to which direct excerpts can be used from transcripts without breaking participant confidentiality; who should develop and facilitate the theatre; and how to portray practice the researchers are concerned about re-enforcing. For example, in Xiseveseve, the SASPI research found that few people were using secondary prevention measures. This was for a multiplicity of reasons. In order to stay true to the findings this had to be depicted but with theatre often being used for health promotion purposes, the research team were concerned the spect-actors would misinterpret the portrayal as condoning such practice. This was therefore addressed in the fact sheet handed out at the end of the actions. However, the research team need not have worried: without fail, a spect-actor intervened to say that the protagonist should comply with his treatment.

The protagonist was the afflicted -the man who fell down while working in his fields and experienced stroke-like symptoms (EM), or 'dryness', 'weakness down one side'. The afflicted were also the man's immediate family who became the main carers and made decisions in a context of poverty and the loss of the household's main income earner (RM and PR). The second role was that of the 'joker' who directed questions to the audience and sought their participation (RM). Third, was the 'provider' of health care -clinic nurse, hospital doctor, inyanga and prophet (PR). Fourth, was a 'scribe' to take notes of interactions with spect-actors (BN). The role of the scribe was vital for documenting audience responses. The fifth role was the 'spect-actors', or the 'audience' -who, through the joker, became the voice of the afflicted's extended family.

The four fieldworkers were all well known by the local communities from having conducted the fieldwork and through being residents in Agincourt sub-district. They arranged times and places to perform the applied theatre through community channels established during the data collection phase of SASPI. Xiseveseve was facilitated six times to groups of various sizes (from 30 to 100 people) Group size varied because, in one village, it was performed prior to a village meeting to discuss other issues. The location was mainly outside under a tree, using minimal props. For example, PR simply wrapped different coloured cloth around his shoulders to depict his change in roles.

Once people were gathered, PR (who had always acted as the spokesperson at community meetings) briefly introduced the team; they then went into role and performed the following eight actions: prologue introducing the characters, hoeing the field, visit to clinic, visit to hospital, home, visit to inyanga, home, fetching from inyanga and going home, visit to prophet.

The spect-actors or afflicted's extended family were invited to participate by, for example, joining the carers and afflicted on the grass mats depicting a 'stage' and participated in deciding where to take the man for care and in discussions about what might have caused this to happen. The 'script' was loosely agreed and was flexible in order to be responsive to the decisions made by the extended family. The eight actions did not always happen in the same order and the spect-actors decided where the afflicted should go next. The joker would turn to the spect-actors and say: 'My family, what shall we do?' The spect-actors would then make a collective decision.

The spect-actors were spontaneously active in the theatre. For example, at one performance spect-actors assisted the afflicted into the wheelbarrow used for depicting going between sources of care (Figure 1) and, at another performance, a spect-actor got up and kicked the afflicted saying the reason he had fallen down was because he was lazy. Spect-actors also participated by singing, clapping and responding to the chants of the inyanga.

At the end of the actions, the fieldworkers returned to their researcher roles and asked the spect-actors what they thought of the portrayal of health: 10( 1 'dryness' and also if they had any ideas for future interventions. A factsheet was handed out in answer to questions about accessing the disability grant and about treatment for high blood pressure. These factsheets had been prepared in conjunction with other members of the SASPI team (MC and MT) to ensure accuracy of medical advice. If any questions arose that could not be answered by the fieldworkers, spect-actors were advised to ask at the clinic or to ask social workers.

At all six performances, the spect-actors said that the portrayal of family decision-making and plural healing was accurate. In addition to data validation and dissemination of findings, at the end of the actions, the spectactors were asked about possible future directions for similar health research. During the discussions about potential future interventions several themes emerged. First, were issues related to the wider context, for example addressing poverty. Second, strengthening the clinic-based services, for example health checkups at clinics, having a clinic in the community, buildings for respite care and education, education regarding continuation of blood pressure tablets. Third, services in the community, for example community physiotherapists, home visits and social workers to help with accessing benefits. Fourth, building on existing strategies and services as well as new ways of working; for example, hospitals and inyangas should work together, and researchers should work with the local clinics. Fifth, household and community support, for example support from family members and physical help from community groups.

On reflection the fieldworkers said:

At first I thought this was peripheral to the study. But when we began to perform, I was amazed at how passionate people were about the situations and views we acted for them. It became clear that our findings were indeed part of their lives.

(EM)

This was a different form of feedback not like a conventional presentation. People found it interesting and they became part of the story with their views and were involved. (RM)

Conclusions

The use of applied theatre for the validation and dissemination of health research findings in the SASPI project was done as a small-scale pilot to assess if this approach was feasible for validating and disseminating data and for eliciting views concerning possible next steps in the management of cardiovascular disease and its associated problems. It did not set out to achieve the targeted social change of Forum Theatre, but it did employ principles of ethnotheatre. It was also community theatre in that it used nonprofessional actors, residents of Agincourt, in a community space. It was found that for validating data and for dissemination, applied theatre worked better in smaller community groups, in that it allowed greater opportunities The aim was not that of Forum Theatre in the sense of 'liberation' as described by Boal in that the spect-actor frees him-/herself from oppression and acts for him-/herself. The aims of the theatre makers were to validate data; the heightened sense of catharsis of the audience was justification for this. Strategies of Forum Theatre were used to engage the audience and thus provide a context -that of the extended family for the participatory element. The success of the participatory outcome was embodied in the understanding that theatre and story telling within African culture brings with it an expectation of response and active engagement.

Every theatre company knowingly or unknowingly uses ideas that have been developed by other practitioners. These ideas may not be used wholesale but adapted and re-invented by theatre artists to suit particular situations. In the SASPI project it was appropriate to position the audience as the extended family of the protagonist and invite their counsel through the drama. It was important to leave the text to be improvised by the fieldworker/players within a pre-written framework in order to accommodate the suggestions from the audience. The fieldworkers and the researchers themselves made the theatre; thus the theatre can be described as ethnotheatre or ethnographic performance, though it is also community theatre as it is performed by non-professional actors in a community setting (under a tree in a central part of the village).

The use of applied theatre could be further developed in this area drawing on existing practices. There is a tradition of story telling and performance in the wider Bohlabelo District: for example, the muchongolo dance, performed mainly by male dancers and female singers who sing about AIDS/HIV, the economy of the country, religious issues, local personalities and other current or historical topics.

The applied theatre served several needs, both validating the research and empowering the community and the researchers with new and valuable insights into the project. Further research is required to develop methods for evaluating the impact of applied theatre as a method for both validating data and disseminating research findings. Theatre for Development and community theatre techniques are already sometimes used in the early stages of research and development initiatives that follow a participatory approach and this pilot has shown the usefulness for theatre in the validation and dissemination phase of research.

Note

) 40 Figure 1

 401 Figure 1 Spect-actors assist the afflicted into a wheelbarrow.

  Stuttaford et al.: Applied Theatre in Health Research Dissemination for eliciting views. It also complemented other validity checks such as prolonged engagement of the team in the setting, ongoing observation, debriefing with peers and triangulation of methods and data sources.

Authorship contributions. The co-applicants of this multidisciplinary study, led by Margaret Thorogood, worked closely in the overall management of the SASPI Study. Gillian Lewando Hundt managed the anthropological components. Maria Stuttaford drafted this article, developed the participatory

CLAUDETTE BRYANSTON is co-artistic director of Classworks Theatre, Cambridge, and holds a part-time Fellowship in Applied Theatre at the Institute of Health, University of Warwick. GILLIAN LEWANDO HUNDT is Professor of Social Sciences and Director of the Institute of Health in the School of Health and Social Studies at the University of Warwick. MYLES CONNOR is a senior lecturer in Neurology at the Medical School of the University of the Witwatersrand and Director of Neurology at Baragwanath Hospital, Soweto, Johannesburg. MARGARET THOROGOOD is Professor of Epidemiology at the Warwick Medical School, University of Warwick. STEPHEN TOLLMAN is Professor of Public Health, at the School of Public Health, University of the Witwatersrand.

The study took The research was undertaken with support from a Wellcome Trust grant (Ref 06476/Z/01/Z). The study would not have been possible without the co-operation of the many respondents that agreed to

methodology and initiated the idea of using applied theatre, trained the field team in the participatory techniques and applied theatre, co-developed Xiseveseve and helped supervise data collection and carried out data analysis of the REA. Gillian Lewando Hundt developed the anthropological components of the study, trained and supervised the field team and analysed data and further developed the idea of using applied theatre and of Xiseveseve and contributed to the paper. Claudette Bryanston provided theoretical and practical guidance on the use of applied theatre, trained Stuttaford and Lewando Hundt and wrote parts of this paper. Bulelwa Ngoma managed the fieldwork and assisted in the performance of Xiseveseve. Regina Mathumbu and Patrick Rikhotso collected the data on which this paper is based and they, together with Elly Mokoena, co-developed and performed Xiseveseve. Margaret Thorogood, Stephen Tollman and Myles Connor have commented on earlier drafts of this manuscript and supported the piloting of this method of data validation and dissemination.

The SASPI team for this part of the study were (including their abbreviations as used in the body of the paper: health: 10(1)


Paul Ward
email: paul.ward@flinders.edu.au

Anna Coates

'We shed tears, but there is no one there to wipe them up for us': narratives of (mis)trust in a materially deprived community

Keywords: dependence, inter-personal trust, materially deprived communities, social inclusion/exclusion, systems-based trust

This article reports on a qualitative study in a materially deprived locality in northern England, which originally aimed to explore local residents' views of proposed changes to local health care provision. However, participants also quickly moved the research agenda onto widespread discussions of (mis)trust. Unlike much sociological literature that defines trust as operating on two levels (inter-personal and system-based), their narratives of trust were constructed on several inter-connected levels. We explore mistrust in local general practitioners (GPs) as a factor of mistrust of a number of local and national organizations and social systems, rather than solely related to the medical system. Widespread mistrust of 'authority' was narrated through a shared history of disinvestment and loss of services in the locality and 'broken promises' by a range of institutions, which precipitated feelings of social exclusion and disembeddedness.

capacity of experts to deliver to us control over our bodies [START_REF] Beck | Risk society: Towards a new modernity[END_REF]. Indeed, Crawford suggests that 'When the life-world is colonized by medical insecurity, medicalized subjects come to suspect the messenger and the knowledge they bear ' (2004: 524). On a more immediate temporal and geographical scale, recent scandals in the UK over illegal removal of organs, the Harold Shipman case, the Bristol doctors, MMR [START_REF] Brownlie | Leaps of faith' and MMR: An empirical study of trust[END_REF] and BSE [START_REF] Irwin | Science, social theory and public knowledge[END_REF] have fuelled public scepticism and lack of trust in science, medical authorities and individual medical practitioners. The purpose of this article is to explore notions of trust in a materially deprived locality, as they relate to trust in general practitioners (GPs), the health care system in a context of social exclusion and the wider institutions of the state in an era of disorganized capitalism [START_REF] Scambler | Health and social change: A critical theory[END_REF].

The study we report on here did not set out to explore the notion of trust. The study's original objective was exploratory, rather than specifically focused, with the aim of investigating user perspectives of the health care needs of Pakistani and 'white' 1 people in a materially deprived locality in northern England. The study was commissioned by the local primary care trust (PCT), which was undergoing organizational changes and considering reconfiguring the provision of primary care services. In particular, the PCT was considering reducing the number of GPs in the local area -namely closing down a GP surgery. Therefore, within an approach akin to a public consultation, the PCT was interested in the views of local residents regarding current health care provision and suggestions for how these services could be reconfigured in ways most appropriate to expressed needs.

During the study, it became acutely apparent that the over-riding narrative was one of mistrust expressed in a variety of complex ways and with inconsistent targets. Therefore, this mistrust could not be neatly levelled at a particular person, organization, institution or system. Personal experiences of the local residents over many years had led to a mistrust of most organizations and those working within them. Therefore, this article seeks to perform two main tasks. The first is to highlight and explore the narratives of mistrust within the community, and the reason for the mistrust (in particular, links with social exclusion were revealed as important). Second, mistrust was constructed and operationalized at a number of levels, and therefore we wish to add to the theoretical development of the sociology of trust by suggesting that rather than trust being on two levels (i.e. inter-personal and system-based), it is more like the layers of an onion -it is and can be on multiple levels, and related to multiple social systems [START_REF] Luhmann | Trust and power[END_REF].

Literature on the concept of trust

It is not intended to provide an in-depth review of the concept of trust here, since this has been done admirably elsewhere [START_REF] Gambetta | Trust: Making and breaking co-operative relations[END_REF][START_REF] Luhmann | Trust and power[END_REF][START_REF] Giddens | The consequences of modernity[END_REF][START_REF] Giddens | Modernity and self identity[END_REF][START_REF] Giddens | Living in post-traditional society[END_REF][START_REF] Simmel | The philosophy of money[END_REF][START_REF] Misztal | Trust in modern societies[END_REF]Mollering, health: 10(3) 2001; [START_REF] Gilson | Trust and the development of health care as a social institution[END_REF][START_REF] Goudge | How can trust be investigated? Drawing lessons from past experience[END_REF]. Most theorists suggest that trust is operationalized at two inter-related levels: inter-personal trust and system-based trust (also called generalized trust, institutional trust or trust in abstract systems). In terms of trust in health care professionals, interpersonal trust has been defined by Russell as being 'built, sustained or damaged through face-to-face encounters with health providers and is more likely to increase with long-term doctor-patient relationships ' (2005: 1397). Trust in systems is based around the belief that the health system and medical profession will operate in the best interests of the patient. Luhmann (1989) also talks of trust in multiple (social) systems, which may include the medical system, but also includes other systems such as economic, political and legal systems. The resonance of Luhmann's ideas will be outlined in this article.

While both of these levels (personal and system-based) of trust involve 'leaps of faith' (Simmel, 1990: 179) or are in some way 'quasi religious' (Giddens, 1990: 26-7), the trust that people have in systems is more abstract. Indeed, [START_REF] Giddens | The consequences of modernity[END_REF] usefully distinguishes between 'facework commitment' (inter-personal trust) and 'faceless commitment' (system-based trust).

The two levels of trust are inter-related in that the GP, for example, is the public face of the health care system, and therefore in some way will influence levels of trust in the system. Nevertheless, the theory suggests that an individual may have trust in their GP due to personal experience, although have mistrust in the medical system or NHS (e.g. due to media reporting). They may feel that their GP is doing everything for them, within the restraints of a system that is unhelpful or inequitable. Conversely, an individual may have complete mistrust of their GP, while still retaining trust in the system.

Importance of (mis)trust in late modern society [START_REF] Giddens | Modernity and self identity[END_REF] argues that public mistrust in systems is a core dimension of the character of life in late modernity. 2 Giddens (1994) argues that we look towards expert systems (e.g. medical system) to anticipate, predict and control the future and are therefore ever more reliant upon such systems. However, the medical system cannot adequately predict the future, which has lead to public mistrust [START_REF] Wynne | May the sheep safely graze? A reflexive view of the expert-lay knowledge divide[END_REF][START_REF] Crawford | Risk ritual and the management of control and anxiety in medical culture[END_REF]. Indeed, [START_REF] Crawford | Risk ritual and the management of control and anxiety in medical culture[END_REF] provides evidence for the emergence of a 'culture of anxiety', which has also been termed an 'era of insecurity' [START_REF] Bauman | search of politics[END_REF], 'ontological insecurity' [START_REF] Giddens | The consequences of modernity[END_REF] and 'existential anxiety' [START_REF] Giddens | Modernity and self identity[END_REF], in which 'stasis' becomes the norm, and individuals and groups constantly reflect upon their place in society and the role of traditional institutions.

Some may suggest that the medical system has actually never been able to predict the future, and the difference in contemporary society has been

Ward & Coates: Narratives of (Mis)trust the shift from 'productivism' to 'consumerism' [START_REF] Bauman | Life in fragments[END_REF][START_REF] Scambler | System, lifeworld and doctor-patient interaction: Issues of trust in a changing world[END_REF]. This shift in emphasis, which is accompanied by a mushrooming provision of different forms of health care (belonging to biomedical and other 'alternative' paradigms) has meant that members of society are encouraged to 'shop around' for health, which has resulted in so-called 'reflexive actors' [START_REF] Giddens | Modernity and self identity[END_REF], who may indulge in pragmatic 'healer hopping' [START_REF] Ernst | Historical and contemporary perspectives: Views from below and from above[END_REF]. In this way, trust in the medical system can no longer be simply taken for granted or expected, 'it has continually to be "won"' (Giddens, 1994: 90) and 'is therefore being constantly renegotiated with lay audiences' (Bissell et al., 2001: 9). Indeed, such a process of negotiation and lack of guaranteed trust for lay audiences may represent a loss of status by the medical establishment and a deconstruction of the formally perceived dichotomy between 'lay' and 'expert' as, in the process, this distinction becomes increasingly meaningless and subjective.

Mechanic and Meyer state that 'trust is fundamental to effective interpersonal relationships and community living ' (2000: 657), and therefore a decline in trust may lead to continuous vigilance and anxiety within society. One reason for the decreasing levels of trust in the medical system is bound up in contested and divergent epistemological claims about the validity of knowledge. The popular media (including the Internet) is awash with multiple and conflicting claims to medical 'truths' [START_REF] Williams | Modern medicine: Lay perspectives and experiences[END_REF], which has lead to a burgeoning academic literature around the development of 'lay knowledge' [START_REF] Phillimore | Discounted knowledge: Local experience, environmental pollution and health[END_REF]Williams andPopay, 1994, 2001;[START_REF] Popay | Theorising inequalities in health: The place of lay knowledge[END_REF] and 'lay expertise' [START_REF] Lupton | Consumerism, reflexivity and the medical encounter[END_REF][START_REF] Hardey | Doctor in the house: The Internet as a source of lay health knowledge and the challenge to expertise[END_REF][START_REF] Ward | Insights into the uncertain world of the consumer: Reflections on the risks of non-prescription medicines[END_REF]. Claims to 'expertise' around health, illness and medicines are no longer the sole provenance of medical practitioners, and Williams and Calnan argue that there is evidence of a 'critical distance' opening up between the lay populace and modern medicine: 'all knowledge is tentative, corrigible and therefore open to subsequent revision or abandonment . . . Systems of expertise come to represent multiple sources of authority that are frequently contested and divergent in their implications ' (1996: 262). This contestation and divergence effectively challenges not only the epistemological superiority historically claimed by biomedical science but also the coherent authenticity of its underlying paradigm, as users actively select components of health care from multiple sources. As such, the medical system becomes not only contested but also locally determined by the same users [START_REF] Ernst | Historical and contemporary perspectives: Views from below and from above[END_REF]. Furthermore, [START_REF] Scambler | System, lifeworld and doctor-patient interaction: Issues of trust in a changing world[END_REF] state that medical doctors have experienced a change in their status from 'legislators' to 'interpreters' [START_REF] Bauman | Legislators and interpreters: On modernity, postmodernity and intellectuals[END_REF], who are no longer able to be 'unchallenged to prognosticate on matters of health' (Scambler and Britten, 2001: 62).

The multiple truth claims and contested nature of medical expertise has led many theorists to suggest that we are all in a state of liminality ('no man's land') (Armstrong, 1993: 409); in 'non-health' (Gifford, 2002: 217); 'betwixt and between health' (Crawford, 2004: 521). Although there are health: 10(3) arguably increased spaces for empowerment of lay people, the latter is left on uncertain ground from which to act on their improved possibilities for agency. The consequences of such liminality are that lay people begin to question the validity of medical knowledge and hence the 'trustfulness' of both medical practitioners and the system on which their knowledge is based. Indeed, Crawford elegantly suggests that:

People are left wondering about the efficacy of medical advice: as the map of danger is filled in, safe passage appears all the more difficult; but as the map of safe passage becomes illegible, people do not know what to believe or how to act in order to be safe. (2004: 511) All of this literature highlights the centrality of 'trust' in contemporary society, specifically as it relates to health care [START_REF] Scambler | Habermas, critical theory and health[END_REF][START_REF] Scambler | System, lifeworld and doctor-patient interaction: Issues of trust in a changing world[END_REF]. There have been a number of empirical studies which have explored the issue of trust in health care professionals [START_REF] Birungi | Injections and self-help: Risk and trust in Ugandan health care[END_REF][START_REF] Mechanic | Concepts of trust among patients with serious illness[END_REF] or the health care system more generally [START_REF] Straten | Public trust in Dutch health care[END_REF][START_REF] Gilson | Trust and health worker performance: Exploring a conceptual framework using South African evidence[END_REF][START_REF] Russell | Treatment-seeking behaviour in urban Sri Lanka: Trusting the state, trusting private providers[END_REF]. However, this article will add to, and extend this literature by showing the inter-connectedness of mistrust in GPs, mistrust in the health care system and also general levels of mistrust in wider institutions and systems. Previous research tends to focus its radar on health care professionals and the health care system, while ignoring the importance of wider instruments of the state and the capitalist system. The study presented in this article will argue that 'trust' in GPs, primary care trusts (PCTs) or the health care system cannot be disentangled from 'trust' in systems related to employment, the environment, education or the institution of the government (in a similar vein to Luhmann) and the relative positioning of individuals in relation to these institutions.

Research method and analysis

The study was undertaken in 2003 in a materially deprived locality in northern England. The locality has suffered from dis-investment in services over many years and had chronic unemployment. It is an ethnically mixed area, with approximately 20 per cent of the population being of Pakistani origin.

Given the PCT's requirement for both a depth of understanding and statistical generalizability to reflect perceptions of needs and suggestions for future services, we undertook a mixed method approach. First, we conducted five focus groups with members of the local community. Second, we undertook a community survey with a 10 per cent random sample of the community. This article focuses specifically on the findings from the focus groups.

Ward & Coates: Narratives of (Mis)trust

Choice of research method

The use of focus groups allowed for explorations and discussions of relevant events in people's lives, in addition to creating a flexible atmosphere conducive to an open and uninhibited flow of conversation between participants [START_REF] Silverman | Interpreting qualitative data: Methods for analysing talk, text and interaction[END_REF] whose potential diversity is recognized [START_REF] Kitzinger | The methodology of focus groups: The importance of interaction between research participants[END_REF]. Focus groups may be seen as a way of 'prospecting' for the respondent's feelings and points of view [START_REF] Holstein | Inside interviewing: New lenses, new concerns[END_REF][START_REF] Seale | Analysing qualitative data[END_REF]. However, they also allow for knowledge creation through interaction, since the respondents are not seen as passive vessels from which 'facts' can be extracted but as participants who 'actively and communicatively' construct meanings in the group context of a social encounter (Holstein and Gubrium, 1997: 114). By listening to the views and concerns of the participants in this way, the research process is shaped as far as possible by the respondents' (not the researchers') views.

Recruiting participants and developing topic guides for focus groups

The recruitment of participants for the focus groups and the development of the topic guides were undertaken with the local community forum (a voluntary organization which aims to represent the views and needs of local people). The community forum constitutes members of the local community who meet on a monthly basis and represent the 'voice' of the local community within the local council and the PCT.

The topic guide for the focus groups was initially developed by the researchers (PW and AC) in conjunction with the PCT. However, the community forum spent a number of meetings refining and redeveloping the topic guides so that the issues covered were those deemed important to the local community. The original topic guide was focused on a medical model of health, whereas the community forum worked with a more holistic, social model of health, and therefore widened the variety of topics to include their physical environment (e.g. parks, streets), pollution (visible and non-visible), education, employment and other services. Both researchers tried to cover the topics during the focus groups, while also allowing latitude for participants to discuss issues important to them. This approach allowed for the centrality of 'trust' to emerge within the focus groups.

The community forum also helped us to gain access to members of the community, many of whom would be seen as 'hard to reach' (e.g. older Pakistani men and women) and advised on the constituent members of each group. While agreeing with our intention to undertake separate focus groups with 'white' and Pakistani participants, they also suggested that we needed to subdivide the focus groups by gender, and by age for the Pakistani women. The suggestion was that these groups would have health: 10(3) different experiences of services (particularly in relation to consulting services for children); that Pakistani women needed the space to discuss issues pertinent to them; that first generation Pakistani women would differ in views from younger women; and that the latter may feel restricted (particularly in relation to sexual health) in the company of older women from the same local community. Therefore, our 5 focus groups were as follows: white men (n = 9); white women (n = 10); Pakistani men (n = 9); younger (under 30 years) Pakistani women (n = 10); and older (over 30 years) Pakistani women (n = 8).

Participants for the focus groups were recruited through a local newspaper announcement (in English, Urdu and Punjabi) and by snowball sampling through members of the community forum. All focus groups were conducted at a local community centre, lasted between one and one and a half hours and a corresponding male or female facilitator was used for the women's and men's groups. Although sometimes problematic (with multiple conversations occasionally occurring simultaneously), the use of an interpreter for the three groups with Asian participants was important to allow those who did not speak English to participate. Local NHS research ethics committee approval was granted for the study.

Data analysis

All focus groups were tape-recorded and transcribed verbatim. All transcripts were analysed separately by both PW and AC, but the codes and categories were refined together using an interpretative analysis approach [START_REF] Seale | Analysing qualitative data[END_REF], based upon open coding and categorization (Strauss andCorbin, 1990, 2004) through close examination of the data. Thus we were able to compare categories within and between transcripts and look for similarities and differences (i.e. between and within different focus groups or even within the narratives of individuals themselves).

The main themes were fed back to the participants and to the community forum to ensure that they accurately reflected the complexities of their views and interpretations of experiences. This was a successful process, albeit the key themes identified by different analysts, and indeed by participants, may not always concur because of differing assumptions brought to the interpretation [START_REF] Stacey | Can there be a feminist ethnography[END_REF][START_REF] Opie | Qualitative research, appropriation of the 'Other' and empowerment[END_REF][START_REF] Ramazanoglu | Feminist methodology: Challenges and choices[END_REF]. However, it was recognized that gaps and contradictions in the data and identified themes can be viewed as enriching and illuminating, rather than necessarily problematic, as they highlight the complexities of social research and the world it investigates.

Main findings

The findings from the study are presented in two main sections. First, we present narratives which relate to inter-personal trust, and specifically focus Ward & Coates: Narratives of (Mis)trust on the lack of trust afforded to local GPs. Second, we present narratives which relate to system-based trust, which focuses not only on health care organizations, but also on wider institutions of local and national governance.

One of the criticisms levelled at the reporting of findings from focus groups has been that the interaction and discussion is often neglected; indeed, Kitzinger stated that 'reading some reports it is hard to believe there was ever more than one person in the room at the same time ' (1994: 104). Therefore, we endeavour to retain some of the discussion in the use of our direct quotations, which means that these are often fairly lengthy, although we have kept this to a minimum for the benefit of the readers.

Inter-personal trust -lack of trust in their GP

Participants in all of the focus groups had witnessed what they saw as a disinvestment in primary health care services in their locality. This had led to perceived poor quality infrastructure (in terms of number of GP surgeries and their state of repair) and a resultant unwillingness for GPs to stay in the locality. Therefore, many of the surgeries were staffed by locum GPs, with whom it was difficult to develop a long-term relationship. Participants complained strongly that all doctors were locums and that they usually did not see the same doctor on more than one occasion. Participants stated that the development of a long-term relationship was a prerequisite of developing trust in the GP, and therefore participants felt a lack of trust in their locum GPs. In the following excerpt (younger, Pakistani women), one participant responds to another's complaint about locums by relating the problem directly to a lack of trust in the doctor's ability to know about their individual medical history, as well the discomfort experienced in the patient-doctor encounter: For many participants, trust was directly linked to familiarity with personal circumstances as well as with medical histories. These points were most vociferously stated in the three female focus groups, no doubt because of their more frequent uptake of GP services for consultations regarding their children's health. In particular, many of the white and some of the younger Pakistani women made comparisons to experiences earlier in their lives when they had 'a family doctor' in whom they had trust. The health: 10(3) following excerpt from the white, female focus group highlights the changing nature of the GP over one participant's lifetime:

When I was younger, when our family, I mean I'm the eldest of five and we weren't the only family he looked after, soon as he came through the door, he knew you . . . He knew everything about us and it was the same with every other child in the road. And now, I mean, he probably doesn't even know where half the people live, or like what road they live on. (female, white FG)

The lack of an 'old-fashioned family' doctor is significant not only because it contributes to lack of trust in the GP, but it has connotations for trust in the GP's advice, diagnosis and prescriptions. In short, participants, particularly in the female focus groups, spoke of their ambivalence at accepting the advice of the locum GPs and their lack of 'compliance' with their recommendations. This can be seen in the following dialogue that took place in the focus group with white females: It is clear, therefore, that the combination of irregular doctors and the pressured nature of the consultation (because of time constraints) results in the alienation of patients from the consultation experience. This alienation heightened the issue of trust (or mistrust) for participants in the focus groups, who suggested the need to develop a positive inter-personal relationship before trust can be gained. Pakistani men also expressed less trust in the expertise of their GP services. In a similar strategy to that of white women's comparisons with the past, unfavourable comparison was made to the health service and general health status in Pakistan. While such comparisons may reflect idealized nostalgia for both white women and Pakistani men, the existence of such negative comparisons indicates a general dissatisfaction with services which is likely only to be dissipated by improvements in regular GP services and, subsequently, increased levels of trust in the adequacy of current provision.

However, there was a significant gender difference in the specific emphasis given to aspects of, and interpretation of trust within, the GP relationship. For men, the existence of a regular GP was also important.

Ward & Coates: Narratives of (Mis)trust

However, the relationship of trust was judged to be based more upon knowledge of medical history and perception of expertise rather than upon a personal relationship. Indeed, some white men dismissed the latter, stating it to be irrelevant to the quality of the GP service and one man remarked of a specific doctor that: 'It's just he's a bit on the brusque side that's all, he's fantastic' (white, male FG). Despite this lack of emphasis on personal characteristics, however, knowledge of medical history was seen as crucial to developing trust in the advice given. One male respondent had a particular experience whereby he had consulted a number of different locum GPs, which had subsequently led to confusion about his medication history at the hospital. He needed to complete a medication history sheet for the hospital, and a locum GP had not included all of the medicines he currently takes. He suggested that if he had a specific GP who knew him and his medical history, this problem would not have occurred.

Whether on the basis of medical or personal knowledge, then, the overriding narrative of participants in this study was one of a lack of trust in local GPs, primarily because they were generally locums with whom participants could not build up a shared history. This fits in very much with both Simmel and Giddens, who state that inter-personal trust can only be built up over time. In addition, it was also stated that a lack of trust in their GP had led some participants to be less confident about their diagnosis, less confident about taking their prescribed medicines and, in some cases, to not even get their prescriptions dispensed.

Institutional or systems-based trust

In all of the focus groups, participants talked lucidly about what it was like to live in their locality and their experiences of under-investment and disinvestment in the area. Talk often centred on the depletion of local services (schools, job centres, community centres, advice centres and health care services) and 'broken promises' by agencies that offered to increase local jobs and decrease local pollution. While at first this did not seem entirely relevant to the discussion, it soon became clear that participants interpreted 'health' as a holistic issue and, therefore, directly associated it with other issues in their social environment. It was also evident that local people felt disillusioned, socially excluded and disembedded from what they saw as 'mainstream society' and that they were relating their experiences and perceptions of health services to this more generalized feeling. Therefore, any suggestion by the PCT of 'reconfiguring' health care services was seen with suspicion and distrust and was often regarded as a metaphor for 'cutting services'. As a direct result of the depletion of local services over the years, participants had developed widespread negative attitudes and a general lack of trust towards policy makers, government departments and statutory sector organizations. The following dialogue in the focus group with white men clearly reveals that lack of trust in health services has not health: 10(3) developed in isolation but is rather configured within a context of a general lack of trust in social services and in the politicians who are directly charged with their provision:

Participant A: We've had a school in [name of locality] close down . . . Err, we've had the [name of locality] Advice Service, which again is a valuable thing to a lot of people in [name of locality], that closed down. Participant B: Yes, it's just opened again but it's not opened like it was before . . . But again, when it was being closed, we had all the politicians down, all promise, yes, we'll do something, we'll back this and we'll do this. As soon as the election had gone . . . Participant C: Well, yep, but since then Labour's got in and it didn't get reopened to how it was before, but we've seen a lot of other things, other organizations come into [name of locality], have funding to do a specific job, run the course and then leave and [name of locality] been no better than when they came other than something's been looked at going to be done and hasn't been . . . Everything seems to have been like a carrot being put in front of you.

This dialogue highlights the negative experiences of social services by participants and, thus, may underline the reasoning behind their general and enduring levels of distrust, which are likely to translate to the local health services. In addition, it also highlights the importance of understanding the different domains within system-based trust, and its interrelatedness with inter-personal trust. The lack of trust in locum GPs may be understood in terms of general lack of trust in systems and institutions, rather than solely a factor of a lack of trust in the medical system per se.

While the PCT may have 'rational' reasons for reconfiguring local health care services, respondents suggested that local people have developed a widespread level of 'mistrust' which is based on their past experiences of dis-investment. While this mistrust is not specifically directed towards the PCT, there may be a need for the PCT to expend efforts on developing trust within the community. One element of this distrust manifested itself in terms of negative or fatalistic attitudes about the provision of health services promised for the future. Respondents suggested that they have been promised improved and/or new services in the past, only to find that they do not materialize in reality. This difference between rhetoric and reality was encapsulated in the following quotation:

The meeting I went to, they were talking about having a dentist here, they were talking about having some kind of a chemist . . . they are talking about bringing other services in and it all sounds great in theory but the downside is, which as we've found out before, it usually finishes up being one less person than what we thought we were going to get. (male, white FG) This person went on to suggest that while the PCT may promise new health services, facilities and personnel in the locality, local people are likely to

Ward & Coates: Narratives of (Mis)trust view these promises with suspicion and mistrust, given their negative experiences in the past. Participants were also ambivalent (and sometimes rather negative) about the actual impact on their health of reconfiguring health care services. This was particularly the case because of the holistic theory of health held by many participants, especially from the Pakistani community. A number of respondents suggested that attaining health was much more than simply taking their prescribed medicines or following medical advice. We have reported elsewhere [START_REF] Ward | Health and happiness in a materially deprived, ethnically mixed locality[END_REF] on the relationship between 'health' and 'happiness' in our study group. Therefore, in order to be healthy, respondents talked about the need for a cleaner physical environment (e.g. clean streets, parks and other public spaces), reduced traffic noise and pollution, reduced industrial pollution, more jobs and better local services (e.g. schools and advice centres in addition to health care services). In this way, respondents were referring to the primacy of a social (as opposed to purely biomedical) model of health. The observation of a lack of improvements to other services related to this model of health meant that trust in the combined efforts of all such services to deliver good health, whatever the configuration of health services specifically, was limited.

Therefore, while respondents talked about the current and future configurations of health care services in the area, there was a recognition that any future primary care services should be seen in this wider context. Indeed, given the importance of wider influences on health, it was suggested in the Pakistani male group that changing the configuration of health care services alone may have little affect on the health of residents: So, basically, if the Primary Care Trust can't change the environment, I mean, to me personally, this is a waste of time because I will live in the environment for so long and then I will have to run away from it. If the environment is killing us slowly, then there's no point me personally being here talking to you saying I want a good doctor. A good doctor will give us medication, help us to die slowly but will not increase our lifestyle. Correct! (male, Pakistani FG)

Discussion

The notion of trust 'existing' at different levels was partially substantiated in this study. Participants talked about the importance of both interpersonal trust (and mistrust) and trust in more 'abstract' systems. However, the trust that people developed (or lacked) in systems could not be conceptualized in a one-dimensional manner (it was more like the layers of an onion or in Luhmann's terms, related to multiple social systems). Participants had developed distrust of institutions and organizations at all levels of state bureaucracy (from local PCT, to Local Education Authority and the City Council, to the Environment Agency, the Labour government and the capitalist system in general). Therefore, we need to reconsider the twolayer conceptualization of trust.

health: 10(3)

In addition, Giddens (1990: 27-8) suggests that our trust in individuals lies in the authenticity of the expert knowledge they apply. Therefore, trust in GPs in this study would merely be a factor of participants' trust in medical knowledge, the medical system or even medical science. This was obviously not the case. Trust (or lack of it) in GPs was bound up in a wider sense of mistrust of local and national government organizations, in part related to a sense of lack of personal attachment, in addition to political and economic systems in which they are seen to be based.

We wish now to turn to wider debates about the relationship between trust and reflexivity, given its contemporary importance in academic debates. We wish to temper the trust-reflexivity dyad with the notion of dependence. In our view, and the view of others [START_REF] Lupton | Consumerism, reflexivity and the medical encounter[END_REF], dependence on medicine and medical practitioners acts as an intervening or confounding factor on the way in which reflexivity and reflexive modernization affect trust.

Trust, reflexivity and dependence

While this study highlights the reduced levels of trust in GPs, the medical system and wider institutions of government, this does not necessarily result in widespread rejection of medical knowledge or in patients no longer consulting GPs. Participants in the study still consulted their GPs, even if they did not always follow their advice. This 'dependence' on GPs (and the medical system which underpins them) may be seen as an antidote to the wholesale adoption of 'reflexive actors' who are willing and able to challenge the dominant expert authority. We draw here on the work of [START_REF] Lupton | Consumerism, reflexivity and the medical encounter[END_REF] who eloquently critiques both Beck and Giddens in terms of their over-privileging of the notion of reflexivity. Lupton suggests that both Beck and Giddens do not fully acknowledge the 'dependence [that] patients may have upon doctors ' (1997: 380) and that the reflexivity (in terms of process and outcome) may lead to 'undermining the very trust and faith that very ill people seek in the medical encounter ' (1997: 380). Lupton raises a number of extremely pertinent points, which require elaboration in the context of the current article.

First, Lupton highlights the potentially asymmetric relationships between trust, dependency and reflexivity. While Giddens suggests that as individuals have become more reflexive, they have begun to question their trust in individuals and institutions. As such, Giddens argues, we have seen a reduction in the levels of trust throughout society. However, as stated earlier, this does not take into account the dependency that people have on their GPs and the medical system at large. In terms of dependence on GPs, the notion of being a 'good', 'compliant' patient seems important. [START_REF] Ehrenreich | Medicine and social control[END_REF] discuss the importance of being a 'good' patient, who does not question the knowledge or authority of the doctor, and if they attempt to do so, Ehrenreich and Ehrenreich found that they may receive comments such as 'Where did you go to medical school?' or 'You'll have to find another Ward & Coates: Narratives of (Mis)trust doctor'. While their work is more than 25 years old and we have seen an upsurge in consumerist publications and policy documents, it is unlikely that the following statement is wide of the current mark: 'it is a manifestly benevolent relationship [between patient and doctor]: disobeying a teacher or boss might be seen as gutsy, but disobeying a doctor can only be construed as irrational' (Ehrenreich and Ehrenreich, 1978: 60).

While participants may well talk about lack of trust during focus groups, this did not necessarily bear relationship to their actions when they become ill (or one of the friends or family become ill). For example, participants still consulted with their GPs and did not actually talk about particular instances where they actively 'challenged' their GP. Participants often recounted occasions when they questioned the views of the GP (although they rarely did this during the clinical encounter), did not take their medicines as prescribed or even did not get their prescriptions dispensed, but these may be seen as forms of passive challenge. One may expect that a lack of trust in the advice of GPs would lead to active challenges to their authority, and that participants would recount these during focus groups. However, we need to bear in mind the disenfranchised, disempowered nature of the participants in this study. Indeed, it has been suggested [START_REF] Lupton | Medicine as culture[END_REF] that social class may influence patients' motivations to challenge their doctors and resist medical dominance: 'those who are socio-economically disadvantaged have less access to education, resources and such publications as consumer guides compared with people of greater socio-economic advantage ' (2003: 125). In this way, Lupton argues that disempowered individuals, such as those in this study, may be less likely to challenge their GPs, even though they may have little trust in them.

In addition, the notion of reflexivity may well be socially patterned, whereby certain members of society may have access to wider forms of information or possess certain forms of capital (in Bourdieu's terms) to enable the space for reflexivity. The move to late modern society has been accompanied by an information explosion, with some commentators suggesting that we now live in an 'information society' [START_REF] Webster | Theories of the information society[END_REF]. The Internet allows people to traverse boundaries between different knowledges, professions and practices, and provides a medium for the new 'medical pluralism' [START_REF] Cant | The state and complementary medicine: A changing relationship[END_REF]. Studies have shown how the use of the Internet has increased patients' knowledge about health, illness and medicine [START_REF] Hardey | Doctor in the house: The Internet as a source of lay health knowledge and the challenge to expertise[END_REF] and may impact on the doctor-patient relationship [START_REF] Broom | Medical specialists' accounts of the impact of the Internet on the doctor/patient relationship[END_REF]. However, even if access to information on health is democratically increased throughout society, the effects of its access are unlikely to be socially neutral. Reams of sociological writings have shown how health beliefs/knowledges/experiences are socially patterned, and new sources of health information are unlikely to ameliorate these long-standing effects. Indeed, [START_REF] Shilling | Culture, the 'sick role' and the consumption of health[END_REF] draws on the work of others [START_REF] Bourdieu | Distinction: A social critique of the judgement of taste[END_REF] to state that 'different patterns of socialization health: 10(3) result in class-based orientations towards symbolic knowledge which affect the degree to which the social world is seen as open to individual intervention' (Shilling, 2002: 634). In addition, it has also been suggested that 'knowledge does not empower to the same extent everyone who possesses it, while the organisational power of the medical professional also means that many individuals experience themselves as being on the receiving end of "knowledge transfer" from health professionals' (Fuller, 2000: 28). Therefore, the whole notion of the 'body project', 'lay re-skilling' or the 'project of the self' needs to be seen in this class-based analysis, whereby it may only be those with the financial resources, time and cultural capital who are most likely to 'act' on their mistrust by challenging medical authority.

Conclusion

Findings from our study in a materially deprived locality highlight the centrality of a discourse of mistrust, which was presented at a number of inextricably linked levels and related to multiple social systems. While participants talked about their lack of trust in local GPs, this could not be disentangled from their mistrust of the local and national health care system or wider social systems. This fits neatly with Giddens' ideas of the links between the local and the global: 'the local community is not a saturated environment of familiar, taken-for-granted meanings, but in some part a locally-situated expression of distanciated relations ' (1990: 109). This was very much the case for the community in this study.

Our study included a mix of 'white' and Pakistani participants, although we did not find any major differences in terms of (mis)trust of authority. While we thought this may have been the case, with hindsight, it is not entirely unexpected, given their shared histories of living in the same locality over many years. The disinvestment, loss of services and 'broken promises' have affected everyone in the locality, rather than having differential impacts. However, this may not be the case in other localities, where policies and actions may have differential effects. We did find some differences in terms of gender, although any conclusions would be difficult from this study. Therefore, we would suggest the need for further research into the relative influences of ethnicity and gender on (mis)trust.

At the level of inter-personal trust, participants talked about the necessity of developing a relationship with a GP in order for trust to be 'built'. This 'relationship' would necessarily mean that the GP had a good understanding of the health, family and social history of their patients. Participants often juxtaposed their current GPs with 'old-style family GPs', although this may be a nostalgic representation rather than 'reality'. Nevertheless, in this locality, many of the GPs were locums with whom a relationship, and hence trust, could not be built. This lack of trust in their GPs had led many participants to question the validity of GP decision making, in terms of diagnoses, management plans and prescriptions. In addition, a number of Ward & Coates: Narratives of (Mis)trust participants recounted occasions where problems were encountered as a result of the locum GP not knowing their medical histories.

On its own, the lack of trust in locum GPs may have a fairly simple remedy: the PCT could seek to employ salaried GPs with whom local residents could begin to develop relationships. However, participants talked about lack of trust and distrust in organizations, systems and institutions which have remits and roles much wider than individual GPs, local PCTs or even the health care system as a whole. Participants had experienced a shared history of disinvestment in the locality, loss of services and of 'broken promises' by a range of organizations and institutions, which led to a general scepticism and distrust. This was not aimed at any specific individual or organization, but seemed more like a pervading dimension of life in the locality. Feelings of social exclusion and disembededness went hand-inhand with feelings of mistrust. To compound this, participants felt that their voices are not heard and have not been taken seriously in the past: 'we shed tears, but there's no one to wipe them up for us' (male, Pakistani FG).

On one level, our findings may be interpreted as being rather pessimistic for the future. It seems that in order for local residents to gain trust in GPs, the medical system and in authority in general, joined-up action is required involving a number of local and national agencies. This may be a long-term, and rather utopian view. However, in the shorter term, one way of fostering more trust within the local community would be for the PCT to act as advocate for the local community, which may also develop feelings of social inclusion.

Notes

1. The terms 'Pakistani' and 'white' are used throughout this article -it is recognized that Pakistani refers to a place of origin, whereas 'white' refers to a racial group. Both authors are fully aware of the difficulties of using these mixed terminologies and also of using a term that refers to race rather than ethnic group, although they are used in this article to reduce complexity in the text. 2. The authors recognize that the term 'modernity' (in relation to descriptions of societies in the industrialized world) is by no means an undisputed term. However, we employ it here because of its wide usage in the theoretical literatures to which we refer.

  Participant A: People at my clinic have no idea who the doctors are. Today there is somebody else, tomorrow is somebody, there is no continuity. Participant B: No, 'cos if it's a locum doctor, you're not going to know him are you? If it's just your normal doctor who see regularly then yes, you should be more comfortable yeah, because they know you, saying about what problems you've had before, but if it's a locum doctor, he can just read the notes, they're not going to, you're not going expect him to talk to you much.

  Participant A: Never seen him before, never seen him before at all. Explained to him a little bit about what happened and he went, no word of a lie, 'what antibiotics do you want me to give you?' [raised voice] What antibiotics I wanted him to give me? . . . Participant B: Well if I feel that I can trust the doctor to diagnose and treat whatever I have got or my daughters then I will be more inclined to do what he asks and take the medicine. If I don't trust what the doctor says then I will be more inclined not to take the medicine because I don't think it will make me better. Participant C: They prescribed antibiotics and I said to 'em you can give them me but I'm not taking them. She gave me the prescription and I didn't even go the chemist to go and fetch them.

Author biographies

PAUL WARD is Associate Professor of Public Health at Flinders University in Australia, although when the research was carried out, he was Senior Lecturer in Sociology at Sheffield Hallam University in the UK. He is a social scientist with a wealth of experience of undertaking both qualitative and quantitative research in the broad field of medical sociology. His main research and teaching interests are around inequities in health and health care and around lay and professional understandings of medicines, health and risk.

ANNA COATES is Research Fellow in Social Science for the IMMPACT project (Initiative for Maternal Mortality Programme Assessment), based at the University of Aberdeen. Her recent and current research interests include: social/cultural constructions of health and illness; access to health care (currently maternal health care); feminist epistemologies and methodologies; gender and health policy/health care; safe motherhood policy making in the developing world.

Ward & Coates: Narratives of (Mis)trust