FALLING THROUGH THE GAP?
COMMUNICATION AND LYME DISEASE PREVENTION
|The first study showed that 80% of people with Lyme were not fully informed about risks from ticks before they became ill, and 70% felt that their GPs were not informed about infections from ticks at that point. Little recent research exists into knowledge about ticks and the risks, or, into the tick protection methods which exist for the UK or Europe. However, that which is available indicates that actual practices may be poor, even in places where ticks are common, among groups using those areas who are exposed to ticks and where there is information is available (particularly in the UK).The second study group (most had direct experience of Lyme disease) had strong views about the need for more information about risks from ticks to be made available to the public. They suggested that a strategy for communication should be both broad (providing information in a wide range of places and using a variety of communications methods) and deep (targeting people, or places where risks are higher).
Most wanted information from GPs or other doctors (66%), however networks (local and national) also featured as important routes for information, as well as a range of other sources such as local public services, the health protection agency, and vets. Most favoured a national awareness campaign (81%), with the use of radio, television and posters and included information via local community education. The vast majority wanted information via health centres and doctors’ surgeries (86%), as well as areas that are clearly high risk, such as national parks.
However, 84% also wanted information in any areas where ticks could live, such as parks, footpaths etc. There were also a range of suggestions about more innovative methods for communicating messages about ticks, including the use of products available routinely (such as milk cartons) and the use of the Internet and social media.
A strategy for combining ‘who’, ‘how’ and ‘where’ information could be made available is discussed, that fulfils these ‘requirements’ and a table is presented that combines them together (appendix one). This can be adapted to suit local circumstances. The result is an approach that can reach deeply and widely, within reasonable use of resources, based on best use of existing channels of communication at local and national levels. As evidence suggests that people at risk of Lyme disease are not restricted to those who get bitten regularly or undertake high risk activities (e.g dog owners, allotment holders, and people with gardens in rural or semi-rural areas) this communication needs to be extensive.
Government agencies concerned with public health and disease prevention need to address the issues in light of the growing risks from ticks, and consider the needs of communities at risk. The state needs to consider a full review of its own actions to inform the public about Lyme disease risks. At the same time, organisations that have members more at risk of Lyme disease will also have an interest to educate their members about the risks, using appropriate communication methods.
The public may not distinguish between ‘tick protection’ i.e. tick protection and removal practice, as distinct from Lyme prevention, in terms of levels of knowledge and education, and disease recognition in front line services. Both areas need full consideration to ensure adequate reduction in disease via early diagnosis and treatment in the community.
Lyme ResearchUK and Ireland is a community group dedicated to engaging in research that reflects on the policy and practice of preventing, testing, diagnosing and treating tick-borne infections in the UK and Eire.
In autumn 2011, the group undertook two surveys to find out more about Lyme patients’ experiences of the health services and related issues. These projects involved patients in the design and execution of the surveys. It was based on a ‘snowball’ technique using social media and other networks to contact those who had been diagnosed with Lyme disease and other tick-borne infections (TBI’s).
The aim of this work was to put these findings into an applied policy context, but also to make links with current understanding about knowledge of tick protection. This paper examines what people think about ‘good’ or ‘appropriate’ methods of communicating information about ‘tick protection’, and the associated risks from Lyme disease, in the UK and Eire (from the point of view of those most at risk).
The policy context
Very little work has been done in Europe or in the UK to explore the issues around tick protection or Lyme prevention in a policy context. Previous work has also examined the policy issues around prevention and how this could best work in practice, including what sorts of models might operate well for different ‘communities of interest’.
These findings also provide insight for new structures with some remit for public health (such as Public Health England). It provides some ideas about how they might orientate their work around tick protection, and prevention of Lyme or TBIs, based on what the ‘communities at risk’ themselves say.
Whilst the issues around preventing people from being exposed to ticks, or enabling them to remove them more safely are important, this issue runs in ‘continuum’ with those around how well they are dealt with once they become ill. This is particularly relevant because many communities or groups of people are at constant risk of being infected and also because of the current inadequacies in the health services’ responses to people, who have tick bites, and become ill as a consequence.
‘Tick protection’ and ‘Lyme prevention’ via better recognition, are potentially synonymous in the mind of those most affected. This paper will consider both perspectives from the point of view of those who are at risk of TBI’s, with a primary focus on ‘tick protection’.
Tick protection and Lyme prevention
In our second survey (that was open to all), there were some very interesting and distinct opinions and experiences. Out of 180 people who answered the survey online the vast majority were people directly affected by Lyme disease as a patient (56%) or as a friend or family member (36%), – only 9% were not directly affected
Were they adequately informed about risks from ticks?
The vast majority felt that they were not at all informed (80%). 16% felt partially informed, whilst only 3% felt fully informed. This suggests that the methods being used to ensure that people know about ticks and the risks from Lyme disease are not effective in increasing knowledge levels.
Knowledge about tick protection, may be distinguished from knowledge about the Lyme disease. However, this is an ‘academic distinction’. Knowing how to remove a tick is one set of ‘skills’, but knowing when and how to seek medical advice or a referral, and explained illness related to ticks, is yet another. However, patients, or those at most risk might not see these issues as being separate. An example of this might be, that even if patients know how to remove ticks safely, if this fails and they do not present quickly to a health professional, or that professional does not recognise the symptoms, their health is not protected.
Patients are not only concerned about ‘how’ to protect against being bitten, but also what to do if they are, or become ill. It is important to consider if educational efforts should be aimed at both of these areas. Yet, in terms of outcomes for prevention of Lyme disease, it is the combined effect of these measures that will contribute to disease reduction.
Who they wanted information from
The vast majority feel that information should be provided by the GP or another doctor (67%). Presumably those who responded were thinking about the importance of knowing about the symptoms of Lyme disease (and the association with ticks) at the initial point of contact with the medical profession.
Respondents also placed a high price or relevance on, local or national networks that targeted groups most at risk such as those engaged in outdoor pursuits etc (62%). Over half of the participants indicated they felt that local councils, the Health Protection Agency, and local public services such as libraries and pharmacies, should be involved in providing information about ticks.
Interestingly, quite a large number (43%) also felt information should be given via vets. Over one third of the population are dog owners, and people who do own dogs are likely to walk in wild spaces. New research shows that the proportion of ticks that carry infections from dogs is much higher than previously thought – so the need for information to be given out via vets now makes good sense.
Surprisingly few people felt that information should come via friends and family, or via an employer. However, this opinion may be based on the assumption that these groups of people had as little information about the risks from ticks, as the respondent themselves did when they were infected. Some participants, around one quarter, favoured information issued via other health professionals such as nurses, or other professionals such as teachers. Only one person mentioned the chief medical officer newsletter and medical journals as a source of information.
How they wanted to receive information
The vast majority wanted a national awareness scheme or campaign (81%). There was a great emphasis amongst participants on the use of radio and television (72%); notices and posters (60%); in leaflets and pamphlets (52%) or via local community education (41%). Around one in four felt this should be done via word-of-mouth or via workplace education. 40 % felt that information should come via ‘standard routine advice’ such as routine consultations with health workers.
Considerable emphasis was placed on the use of national media to get messages about tick protection out to the general population. Respondents for example, mentioned bus or tube train stations, and motorway services as places where information might be available. One person also suggested information on milk cartons. In general there was some interest in media campaigns that stretched broad and wide and deep into communities, even those that are not at ‘obvious’ risk. There was considerable support for a mass communications exercise to the wider population.
A considerable number of people mentioned the use of the Internet, and social media as a means to provide information including social network sites. One person suggested tick identification cards since Borrelia infection that causes illness, is associated with certain types of ticks.
Where people wanted information to be available
The vast majority felt information should come by health centres doctors surgeries and hospitals (86%).
In addition a large proportion of people felt that information should be targeted in high-risk areas such as national parks (67%). A number of people also mentioned targeting information to areas, where high risk groups (including those who were occupationally exposed) actually lived, worked or frequented – including outdoor shops, allotment associations, bed and breakfasts, mountaineering organisations, agricultural organisations, etc.
However, many more – (84 %) felt that information should be available in any area where ticks could live including parks and footpaths etc. More than half of the respondents wanted information via vets and even more (62%) wanted information in public service buildings such as libraries, schools and council offices.
Groups of people responding were also very keen on information and knowledge to be disseminated via schools, universities and other educational establishments. There was support for the importance of either having information in GP surgeries, or for the improved knowledge possessed by GPs.
Knowledge about ticks, risks, and tick protection, in the UK and beyond
Little is known about ‘preferred methods’ of information about the risks from ticks, specifically for the UK or Ireland, or even more widely in Europe.
Previous research, on ‘tick protection knowledge’ has focussed exclusively on the general population, or groups of people using facilities in endemic areas. There has been little attention paid to specific types of high risk groups, such as those who have occupational exposure to ticks, and/or undertake high risk activities, such as mountain climbers, hill walkers etc. In Europe, research knowledge and exposure to ticks has tended to focus on those with clear regular exposure, such as forest workers.
Studies based in America are difficult to apply to the UK or Ireland for all kinds of social/cultural, biological and environmental reasons. The media coverage of TBIs in endemic areas in North America, and the general knowledge base is potentially much higher than the UK. The ‘Lyme Wars’ have brought the issues to national attention.
Herrington (2004) found 40% of inhabitants in 48 states had taken tick-protection measures, and being concerned about being bitten was associated, such that;
‘being concerned about being bitten, perceiving insect repellents to be effective, having heard about LD, and knowing someone who had LD are the factors most predictive of specific tick-bite preventive behaviours.’
Less than half of school students living in an endemic area of Connecticut, reported practising protection methods, in 1989. Another early study in 1993 found students and pregnant women and mothers, to have misconceptions about, or lack of knowledge of, Lyme disease and its transmission.
In some European studies, the level of knowledge in certain areas, or countries appears higher than it is in the UK, potentially because public educational efforts are greater, and Lyme disease is more common, so communities get to hear about it.
A study of Dutch parents in an endemic area, distinguished between those who did, and did not regularly inspect their children. They called for more education, including children themselves, and noted that there was a need to ‘induce positive norms towards inspecting others’, and the need to ‘stimulate openness about inspection behaviours… modelling examples of… relatives and friends’.  It was found that, Dutch parents were more likely to undertake inspections, if everyone else they knew did, so making it a process of ‘normalisation’.
In 1998, in the Czech Republic in a small study, knowledge about ticks was high (88% knew about them) exposure to ticks was high (87% reported a tick), only 11% did not know about Lyme disease. Despite this;
‘theoretical knowledge of the problem is extensive, practical experience is different. Unfortunately, unsuitable habits in removal of ticks persist, and this increases the risk of transmission ‘.
In Scandinavia in 2005, a high proportion of the population (70%) in an endemic area had been vaccinated for another tick borne infection; TBE – a serious virus. In accordance, people practised regular tick protection. Awareness of risks was associated with prevention and protection behaviour, as could be expected.
The only study in the UK looking at similar issues was as long ago as 1998. This involved visitors to a forest area that was heavily infested with ticks, and where leaflets were available to outline the risks. Whilst most respondents were aware that ticks could carry diseases (70%), only 43% knew this included Lyme disease. 67% did not take measures to avoid ticks, and tick removal methods were very poor, with a considerable number using methods that would likely increase the likelihood of the transmission of infection. A quarter had been bitten by ticks before, so prior tick exposure or general knowledge about risks from ticks, for this group of people, did not appear to influence tick protection behaviour . No research of this kind has been done since in the UK .There are potentially different levels of knowledge of risks from ticks between those people in the general population, and those who become ill.
Whilst a small number of studies suggest that ‘normalising’ a culture in communities around good tick protection behaviour is possible and desirable, the link with actual good practice (and consequential prevention of Lyme) may not be so clear cut. Another set of questions arise in relation to what the best methods of communication or education are. We need to choose methods that ensure the best tick protection practices are understood, and put into practice.
Almost nothing is known about health professionals and doctors’ knowledge about risk from ticks, tick protection or removal techniques, or Lyme disease in the UK or in Europe. There is no published research in this area to date for Europe, and only one article, which shows poor levels of knowledge of tick removal in GPs . Our recent survey showed that 70% of people affected by Lyme disease, felt their GP’s were not informed about infections from ticks, when they became ill. This dimension appears to have been neglected in research and adds to the problems around how best to prevent actual illness from Lyme and other tick-borne infections. Clearly GP and health professional education should feature in a planned prevention programme.
Preferred methods of communication about risks from ticks
Clearly there are issues about the best ways of providing information about the risks from ticks, and the best ways of ensuring protection from infection. The need to ‘normalise’ tick protection behaviour need not necessarily be in complete conflict with the use of high risk areas for work or for leisure, however, this is an area that is subject to debate. It is not surprising that those most affected by Lyme disease, are likely to have a particularly ‘strong’ view of the issues, and different views from professionals or those who have not become ill, compared to those who have, or know someone who is.
This study examines the perspective of those who have had Lyme disease in the UK or Ireland or knew someone who had (only 9% of respondents were outside of this group). The levels of (prior) knowledge about the risks from ticks, were low (80% of the study sample felt that they were not at all adequately informed).
People who have contracted Lyme disease, understandably, have strong views about the need for more information to be made available to the public at risk. As a group, they suggest a strategy for communication that is both broad (providing information in a wide range of places and using a variety of communication methods) and deep (targeting people, or places where risks are higher).
Most wanted information from GPs or other doctors (66%) however networks (local and national) also featured as important routes for information, as well as a range of other sources such as local public services, the health protection agency, and vets. Most favoured a national awareness campaign (81%) with the use of radio, television and posters and included information via local community education. The vast majority wanted information via health centres and doctors’ surgeries (86%), as well as areas that are clearly high risk, such as national parks.
However, 84% also wanted information in any areas where ticks could live, such as parks, footpaths etc. There were also a range of suggestions about more innovative methods for communicating messages about ticks, including the use of products available routinely (such as milk cartons) and the use of the internet and social media.
The methods suggested by this wider group of people, perhaps reflects the fact that few patients with Lyme disease were being bitten regularly (24%) at the time when they were infected and became ill. Some known Lyme disease patients, were exposed to ticks in less than ‘traditional’ endemic areas, and not just during ‘high’ risk activities (approximately one in five were bitten in a garden, park or allotment).5
The risk of getting ill with Lyme disease, does not necessarily, easily or directly, equate to ‘known’ high exposure to ticks5. Those that do not ‘get bitten regularly’, or do not frequent endemic areas or habitats, are also at risk of this illness (55% were not being bitten regularly; 30% of those who were or are being bitten regularly, were being exposed to ticks as a result of where they lived such as gardens, and the same proportion from exposure to pets5). This has considerable implications for tick protection communication messages, and how and where they are targeted.
Strategies which only target traditional ‘high risk groups’ could fall short of being effective for Lyme disease prevention. People exposed to Lyme disease expressed the need for a broader and deeper spread of communication messages.
Government agencies concerned with public health and disease prevention need to address the issues in light of the growing risks from ticks, and take into consideration the needs of communities at risk of these illnesses. The state needs to consider undertaking a full review of its own actions, to inform the public about Lyme disease risks. At the same time, organisations that have members more at risk of Lyme disease, will also have concerns to educate their members about the risks, using communication methods that might be most appropriate to them.
Low levels of knowledge, amongst those who have contracted Lyme disease suggest that much more needs to be done to make information available, and to ‘normalise’ good tick protection behaviour, as well as provide information on ‘front line’ health services. In particular the knowledge by front line health staff such as doctors, nurses and other professionals, needs to be considered as another very important factor in the prevention of Lyme disease and other tick-borne infections. This is an area that is under-researched, and a perspective on Lyme prevention that has been neglected.
It may be easier in organisational and communication terms, to target professionals, than to prevent Lyme disease or other TBIs, purely by changing individuals’ ‘tick protection’ behaviour. It will be important to find out in the future, what impact improving the knowledge levels about Lyme disease as an illness, in itself, would contribute to preventing illness, including the more complex, chronic or disseminated forms. Focussing on good tick protection methods is only ‘one half’ of the solution to preventing tick-borne infections in the community.
|Methods of communicating risks from ticks||
High risk areas
Any areas where ticks live
|Public services buildings eg libraries, schools etc||Health centres, hospitals , pharmacies, etc||
|Friends and family||Word of mouth, community groups, local schools, leaflets websites, social media etc||Word of mouth, community groups, local schools, leaflets websites, social media etc|
|Networks local and national e.g. outdoor groups etc||Local networks via local councils, local business’, community groups, social media etc||National networks, radio, television, websites, social media etc||Leaflets, posters, websites, educational events etc||Leaflets, websites, doctors advice, training for staff etc||Leaflets information to customers and staff (occupational exposure)|
|Local councils e.g. Environmental Health Officers||Local networks via local councils, local business’, community groups etc. Training and updating, involved in local planning/ co-ordination, advice etc – local hotspots||Leaflets, posters, websites, educational events. Local networks, radio, television, websites etc.||Leaflets, posters, websites, educational events etc||Leaflets, posters, websites, educational events etc|
|Employer’s||Leaflets advice, and testing of a staff. Training and updating, involved in local planning/ co-ordination, advice etc – local hotspots||Leaflets advice, and testing of staff. Local networks, radio, television, websites etc||Leaflets advice, and testing of a staff|
|GP/doctor||Training and updating, involved in local planning/ co-ordination, advice etc – local hotspots||National networks, radio, television, websites etc||Leaflets, posters, websites, educational events etc|
|Other health professionals||Leaflets, posters, websites, educational events etc||Leaflets, posters, websites, educational events etc||Leaflets, posters, websites, educational events etc|
|Other professionals e.g. teachers, businesses||Training and updating local hotspots, letter to parents etc||Leaflets, posters, websites, educational events etc||Leaflets, posters, websites, educational events etc|
|Health Protection Agency? OR Public Health England||Planning and co-ordination of national programme of education and information||Planning and co-ordination of national programme of education and information||Training and updating, involved in local planning/ co-ordination, advice etc – local hotspots||Training and updating, involved in local planning/ co-ordination, advice etc – local hotspots||Training and updating, involved in local planning/ co-ordination, advice etc – local hotspots|
|Local public services e.g. libraries Pharmacies||Leaflets, posters, websites, educational events, social media etc|
|Vets||Leaflets, posters, websites, educational events etc|
Kate Bloor April 2012 LymeResearchUk – email firstname.lastname@example.org
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