Maggie Mort, Ian Convery, Josephine Baxter, Cathy Bailey
Objectives To understand the health and social consequences of the 2001 foot and mouth disease epidemic for a rural population. Design Longitudinal qualitative analysis. Setting North Cumbria, the worst affected area in Britain. Sample Purposive sample of 54 respondents divided in six demographically balanced rural occupational and population groups. Main outcome measures 3071 weekly diaries contributed over 18 months; 72 semistructured interviews (with the 54 diarists and 18 others); 12 group discussions with diarists Results The disease epidemic was a human tragedy, not just an animal one. Respondents’ reports showed that life after the foot and mouth disease epidemic was accompanied by distress, feelings of bereavement, fear of a new disaster, loss of trust in authority and systems of control, and the undermining of the value of local knowledge. Distress was experienced across diverse groups well beyond the farming community. Many of these effects continued to feature in the diaries throughout the 18 month period. Conclusions The use of a rural citizens’ panel allowed data capture from a wide spectrum of the rural population and showed that a greater number of workers and residents had traumatic experiences than has previously been reported. Recommendations for future disaster management include joint service reviews of what counts as a disaster, regular NHS and voluntary sector sharing of intelligence, debriefing and peer support for front line workers, increased community involvement in disposal site or disaster management, and wider, more flexible access to regeneration funding and rural health outreach work.
The United Kingdom’s foot and mouth disease epidemic in 2001 has been described as the most serious ever to occur in a country previously free of the disease1 and “a traumatic and devastating experience for all those who were affected by it . . . a national crisis . . . probably one of the greatest social upheavals since the war.”2 Between 6.5 million and 10 million animals were slaughtered across the UK, and in north Cumbria 893 farms had confirmed infected cases, with a further 1934 having complete or partial culls of livestock, representing 70% of farms.34 Restrictions on public rights of way and advice to stay away from the countryside led to a collapse in tourist numbers and loss of recreational use of the landscape for a year.5
In the spring of 2001, the BMJ asked how health services were responding to the crisis.6 Immediate concerns centred on zoonosis,7 and public health clinicians raised concerns about the use of large pyres and mass burials for animal carcass disposal.8 Some contributors called for examination of the anxiety, stress, and other mental health consequences which they believed must follow:9 “at best, major stress and anxiety states; at worst, suicide and its consequences for families. Are these not ‘human consequences’, and indeed public health matters?”10 One correspondent reported that the (then) health authority in the worst affected area had been only “peripherally involved,” and called for a greater public health role in managing the disaster.11
Crucially, because the epidemic was treated as an animal problem, managed by the Ministry of Agriculture, Fisheries, and Food (later Department for Environment, Food, and Rural Affairs, DEFRA), the human tragedy was not accounted for or understood. The epidemic was held to be something affecting farmers, ignoring the large numbers of other occupations and residents drawn into the crisis. For those health practitioners working in the worst affected areas, there was the familiar problem of lack of evidence. Healthcare services in north Cumbria and other severely affected areas did not record any significant increase in demand during the epidemic and subsequent months, which was taken to mean that the health and social effects of the disaster were not significant (although a retrospective study of diabetes service activity has found a possible deterioration of blood glucose control over the duration of the crisis among those affected; final results are awaited12).
Yet what counts as evidence in health research goes beyond the pathological and the statistical. In contrast with the NHS experience, voluntary local helplines and rural support groups were besieged with appeals for help: “health” during the crisis was more about survival and practical support than medical interventions. This apparent contradiction called for a qualitative study that could capture evidence about the impact of the disaster and processes of recovery from “on the ground” accounts collected over time.13
This large qualitative ethnographic study was underpinned by theories of expertise that distinguish between first hand, experiential, informal knowledge and the distal aggregated or formal knowledge.14 15 While the three official inquiries into the disease outbreak (by Anderson, the European Union, and the Royal
Details of the study’s multi-agency steering group, respondents, and development of the major analytical themes appear on bmj.com
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|Table 1 Occupational and residential groups included in the rural citizens’ panel, and their study data|
|Group No||Members||Group discussions||Interviews||Weekly diaries|
|1||Farmers, farm workers, and their families||2||9||601|
|2||Small businesses, to include tourism, arts and crafts, retail, and others||2||8||394|
|3||Related agricultural workers, to include livestock hauliers, agricultural contractors, and auction market staff||2||9||576|
|4||Front line clean-up workers and managers (from DEFRA or Environment Agency), slaughter teams (temporary,||2||7||380|
|seconded, and permanent staff)|
|5||Community, such as teachers, clergy, residents near disposal sites||2||9||533|
|6||Health professionals, such as general practitioners, community nurses, and vets||2||9||587|
DEFRA=Department for Environment, Food and Rural Affairs.
Society) had recruited established professional experts, our study recruited “lay experts” whose experiential contribution to knowledge is often overlooked.16–18
With the help of a multi-agency steering group (see appendix on bmj.com), we drew up a rural citizens’ panel with a demographic and occupational sampling frame. The panel of 54 respondents was purposively sampled from six groupings identified by the steering group as affected in a range of ways in the disease outbreak (see table 1).
We developed detailed group descriptors based on age, sex, location, and occupational subsector, and forwarded these to an independent professional recruiter. Respondents’ identities were released to the research team only once we were satisfied that the descriptors had been matched. The primary means of data collection was a diary designed for the purpose, which began with simple questions about health and quality of life followed by a space for free text entries of any length. This latter section became the most frequently and fully used space, with respondents writing between half a page and six pages each week. No explicit questions were asked about the disease outbreak in the diary as it was important for accounts to be led by respondents. A major advantage of diary studies is that they bring the task of data collection into the respondents’ everyday world.19 20 They offer the opportunity to study change over time and provide insight, in a direct manner, into diarists’ experiences and how they perceive them.21
Initially, six group meetings were held to explain the purpose of the study and obtain respondents’ signed consent to participate. Each respondent also gave an in depth interview around this time. Group meetings were reconvened at the close of diary writing, to offer feedback and gain validation of the emerging analysis (table 1).
The panel of 54 respondents was recruited between October and November 2001 (for details, see table A in appendix on bmj.com), with the first group meeting held in December, before the declaration of virus-free status and lifting of movement restrictions. All first round meetings were highly charged; for example, many of those in group 1 had hardly left their farms or workplaces for nine months, and, though they made many harrowing contributions, they were clearly relieved to meet, talk, and listen to their peers.
Diary writing began in the week of 21 December and continued over the next 18 months, during which time just three respondents chose to discontinue. Periods of “holiday” from diary writing were negotiated, and the total number of weekly diaries collected (at monthly visits to the diarists) was 3071. In recognition of respondents’ time and expertise, a small fee was paid on collection of the diaries. Respondents showed strong commitment to the research, generating a unique longitudinal dataset (anonymised) for which we are negotiating consent for a public electronic archive.
All interviews and group meetings were transcribed from audiotape; diaries were transcribed from the original (usually hand written) format. After individual researchers had read and annotated the material, all four researchers held eight “data clinics” to identify emerging themes, using a constant comparative approach.22–24 This entailed examining, comparing, and categorising data until no new categories emerged. Underpinning our analysis of the categories by the theories of knowledge mentioned above, we developed four major analytical themes. We then entered codes, categories, and themes into Atlas Ti software, where the anonymised data are held. Respondent validation of codes and themes was carried out at six subsequent group meetings.
We identified four major analytical themes (altered lifescapes, trauma and recovery, trust in governance, and knowledge and place) (see table B on bmj.com for details of their supporting categories and codes). Table 2 outlines the health and social consequences identified from the data. These medium to long term health and social impacts were neither discrete nor mutually exclusive, and many respondents experienced complex, synergistic interactions of these consequences.
Altered lifescapes represents the cluster of responses that concern the disturbed relation between health and place; the changed significance of everyday places and spaces previously taken for granted in respondents’ lives. Such places were radically altered during the disease crisis (see box 1)
Table 2 Process of analysis (medium and long term effects developed from the codes)
Medium Deterioration in chronic conditions and Loss of amenity and recreation term diseases due to disruption in personal Tensions and conflict within routines and access to health services communities
Sleep disruption, flashbacks, nightmares, Increased social isolation uncontrollable emotion, loss of concentration
Reported effects of pyres—headaches, respiratory problems, nausea, loss of physical exercise and recreation for a year
Longer Sharp increase in anxiety across different Communities experiencing term occupational groups permanent changes in land use
Loss of confidence leading to longer term Loss of confidence in ability of stress organisations to control crises
Ongoing health fears of residents living near Loss of trust in governance and carcass disposal sites decision making bodies
Increased number of injuries relating to Uncertainty, confusion, and lack handling new livestock of continuity in public life
Workplace health: risks and hazards (short Bitterness (collective and term) plus change and uncertainty (longer individual) linked to lack of term) leading to increased number of injuries resolution of pain and suffering
Increased sense of fragility in
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Trauma and recovery groups the large body of data referring to distress, anguish, horror, and re-traumatisation but also endurance and sources of support articulated by respondents. Our definition of trauma within this context encompasses both the events and how those events were experienced by individuals and communities. Trauma is associated with the inability to fight or flee—that is, being trapped in the stressful environment and unable to take control over one’s place relative to events (box 2).
Trust in governance reflects the data relating to chaos, loss of personal security, and powerlessness in the face of conflicting advice (box 3).
Knowledge and place covers the body of material concerning a “gap” between different kinds of knowledge—proximal knowledge derived from local experience and centralised or distal knowledge. For example, organisational directives were per-ceived to be stripped of context, unable to adapt to what was happening “on the ground” and unable to mobilise stocks of local expertise. This theme also includes disruption and loss of participation in important life events such as funerals or births (box 4).
The study shows that life after the foot and mouth disease epidemic has been accompanied by distress, feelings of bereavement, fear of a new disaster, loss of trust in authority and systems of control, and by the undermining of the value of local knowledge. Diary accounts show how reactions among those caught up in the epidemic were exacerbated by diverse factors— influence of location on business recovery, the burden of dealing with new regulations that demanded cultural change, fear of the epidemic returning, and the stress of living with uncertainty. But suffering was also alleviated by the sources of strength such as support networks (formal and informal) drawn on to cope with both traumatic experience and severe practical difficulties. This ambiguity is supported by other studies of disasters in sociology25 26 and psychology,27 28 and implies that statutory and voluntary organisations have a more complex and enduring role after a disaster than has been understood. People who have experienced a disaster may not be sick as a result, but they need careful and appropriate support to rebuild lives and regain confidence (box 5).
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A defining feature of the foot and mouth disease epidemic was its long duration. Many respondents were exposed to repeated traumatic experience, such as slaughter or cleaning up after culls, for longer than in many other disasters. In north Cumbria the “event” lasted 12 months, to be followed, as in other affected rural areas, by distressing anniversaries ever since. The figure shows an example of how we “mapped” a respondent’s reports of health and quality of life with his free text accounts of everyday events over the 18 months that he kept a diary (movement restrictions still in place during weeks 1-5).
The distress caused by the epidemic shapes the context in which many rural health practitioners in the UK now work. Distress is not a medical problem, however, unless it becomes pathological, when it is re-categorised as depression or post-traumatic stress disorder. If it is treated it is counted. Otherwise those who are suffering are expected to recover using their own resources and networks.29 Our results imply recommendations for change mostly in attitude and emphasis, rather than the creation of new bodies or yet more specific targets and protocols.
We argue for more flexibility in disaster planning and organisational emergency plans (such as less tightly prescribed steps and invariant sequences in planning), since such plans themselves carry further risks.30 Not all our study findings translate neatly into recommendations for operational change. However, we urge the authorities and agencies involved in disaster management, care, and recovery to recognise the interrelationship between traumatic experience and agency responses, undertake joint service reviews of what counts as a disaster, facilitate sharing of intelligence between the statutory health and voluntary sectors, introduce opportunities for debriefing and peer support for front line workers, make rural health outreach initiatives eligible for regeneration funding, and increase community involvement in disposal site management.
Example of a respondent’s (a farm worker) diary data “mapped” from December 2001 to May 2003
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We thank all the study respondents for their commitment and contributions, the project steering group members for invaluable guidance throughout the study, Tony Gatrell and Peter Tiplady for their helpful advice at the outset, Kai Erikson for his advice and support during the analysis phase, and Carl May and Tim Burnett for comments on earlier drafts of this paper.
Contributors: MM and IC conceived and designed the study; CB, IC, and JB led the fieldwork, and all authors contributed to the analysis. MM and IC drafted the paper and all authors contributed to revision and approved final version. MM is study guarantor.
Funding: This study was undertaken by the Institute for Health Research, Lancaster University, which received funding from the Department of Health. The views expressed in the study are those of the authors and not necessarily those of the Department of Health.
Competing interests: None declared. Ethical approval: The study was approved by both East and West Cumbria Local Research Ethics Committees.
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(Accepted 11 August 2005)
Institute for Health Research, Lancaster University, Lancaster LA1 4YT Maggie Mort senior lecturer Josephine Baxter research associate
University of Central Lancashire Ian Convery lecturer in human geography
International Centre for the Uplands, Lancaster University Cathy Bailey research officer Correspondence to: M Mort email@example.com
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