Outreach programmes for health improvement of Traveller Communities: A synthesis of evidence

General health and well-being

Traveller Communities have been reported to have poorer general health and well-being than other groups. The mortality of Traveller Communities in the Republic of Ireland (ROI) was found to be three and a half times greater than that of the general population, dropping only 13% compared with a decline of 35% in the general population over the last 20 years. 25

The health status of Traveller Communities in the UK is also significantly worse than that of other socioeconomically disadvantaged or ethnic minority groups. 19 ^, 26 Traveller Communities scored poorer on measures of overall health than age–sex matched comparators [assessed using the European Quality of Life-5 Dimensions (EQ-5D) measure of health, mean difference 0.12; p = 0.001] as well as on all individual dimensions of mobility, self-care, usual activities, pain or discomfort and anxiety and depression. 19 These differences in health status between Traveller and settled communities remain even after controlling for smoking status as well as age and sex. 26 Peters et al. 26 also found Traveller Communities to have significantly poorer health than African Caribbean, Pakistani Muslim and white ethnic groups, as assessed using the EQ-5D (mean scores of 74.9, 83.5, 92.6, and 85.5, respectively; p < 0.001).

Traveller Communities reported higher levels of anxiety (mean scores of 9.0 compared with scores of 6.2 for African Caribbean and Pakistani Muslim participants, and 5.7 for white participants) and depression (mean scores of 6.3 for Traveller Communities, 4.2 for African Caribbean participants, 3.8 for Pakistani Muslim participants and 3.1 for white participants), as assessed using the Hospital Anxiety and Depression Scale (HADS). 26 Qualitative studies which found that Traveller Communities clearly identified with symptoms of mental health and distress27 ^, 28 provide further evidence in support of concerns around mental health in these groups. Furthermore, high rates of suicide are reported among Traveller Communities, with three times the rates of suicides among Irish Travellers between 2000 and 2006 compared with the general population. 29

Long-term conditions and specific illnesses

Members of Traveller Communities are more likely to have a long-term illness, health problem or disability that limits their everyday activities (42% of Traveller Communities and 31% of age–sex matched comparators; p = 0.009). 19 Traveller Community members more often reported experiencing a number of conditions, including chronic cough (49% vs. 17%), chronic sputum (46% vs. 15%), bronchitis (41% vs. 10%), asthma (65% vs. 40%) and arthritis (22% vs. 10%), than did the comparator group. 19 This study, by Parry et al. ,19 found no difference between Traveller Communities and comparator groups in the prevalence of diabetes, stroke or cancer. However, the authors report that this may be a result of premature death or a reluctance to disclose conditions such as cancer. 19 Since the publication of this study, evidence from Gypsy and Traveller Accommodation Assessments suggests a higher prevalence of diabetes among Traveller Communities (4.6% of those surveyed in Cambridge and 11% in Dorset compared with 3.5% of the general population). 30 A smaller difference was found between Traveller community and African Caribbean and Pakistani groups for health in the past year, asthma and depression after adjustment for age, sex and smoking status. However, significant differences between these groups remained for the cough and sputum items of the respiratory questionnaire. 26 The collation and review of case-management information over a 4-year period revealed a disproportionate incidence of measles among Traveller Communities of more than 100 times that found in the wider population. 31

Maternal and child health

Studies have also raised concerns around the health of Traveller Community mothers and children. A disproportionate number of Traveller Community mothers were represented in the UK maternal mortality statistics for 1997–9 according to the Confidential Enquiry into Maternal Deaths. 32 Members of Traveller Communities more often reported having experienced one or more miscarriages than the comparator group (29% and 16%, respectively; p < 0.001) and the premature death of a child (6.2% of Traveller Community women compared with none of the comparator women; p < 0.001). 19 Results from the All Ireland Traveller Health Study, which suggest that infant mortality is almost four times greater than that of the general population, corroborate these findings. 33

An increased risk of low birthweight (< 2500 g) has been reported among Roma infants in Europe. For example, 14.1% of Roma infants were born with a low birthweight compared with 3.6% of non-Roma infants in the Czech Republic, with a difference of 373 g in birthweight. 34 Similar results have been reported in Hungary, where 26.2% of Gypsy infants were of low birthweight compared with 11.0% in the national sample, and where an overall difference in mean birthweight of 377 g was found. 35 However, the average birthweight of Traveller infants in Ireland was similar to that of the general population, and the growth rate for Traveller children was found to be comparable with the general population at 9 months,33 suggesting that the evidence may be more mixed in this area.

Intragroup differences

A limited amount of evidence exists from which to establish differences between Traveller Community subgroups. Parry et al. 19 found no significant differences between Irish Travellers and English, Welsh or Scottish Gypsies, suggesting that these groups are likely to experience comparable health status. However, there is a lack of evidence on the health of non-ethnic groups, such as Showpeople and Occupational Travellers,16 who share many of the risk factors for health experienced by other Travellers.

Studies suggest a relationship between frequency of travel and health, with those who travel reporting better health status;19 ^, 36 however, causality is not clear, and this association could reflect a necessity for Traveller Community members with poorer health to settle in order to be close to services. 37

Inequalities of health appear to be particularly great among Traveller Community men. 26 Abdalla et al. 25 report the mortality rate of Traveller Community men in Ireland to be significantly higher than that for women (standard mortality rate of 469 compared with 232 respectively). Traveller Community men have been reported to be over nine times more likely than women to die by suicide, with these gender differences mirroring those found in the general population. 29

Lifestyle factors

Individual members of Traveller Communities have been found to accept ill health and normalise signs of distress. 37 ^, 39 Poor health expectations, fear about potential diagnoses and structural constraints resulting from eviction or difficulties in finding appropriate stopping places have all been suggested as factors leading to a lack of prioritisation of preventative health care and services such as screening. 39 ^, 40 In addition, the literature highlights cultural beliefs of Traveller Communities that govern the body and have a bearing on health practices and which are important for health advisors to be aware of, albeit with the proviso that cultural beliefs and practices may vary across different Traveller Communities and the individuals within them. Okely41 demonstrates the ways in which beliefs about pollution and associated rituals around washing, eating, use of space and placement of objects enacted serve to reinforce a distinction between Travellers and settled communities. For example, the outer body and skin (the interface for engagement with settled community members) is distinguished from and viewed as potentially polluting to the inner body. 41 These beliefs are embodied in practices such as the use of separate washing bowls for items used for cooking and eating from those used for washing the body, and ensuring that anything entering the body through the mouth is ‘ritually clean’. 41 Health practices such as immunisation might, therefore, be viewed as polluting because they transgress the distinction between inner and outer body. While pollution beliefs apply to both men and women, the potential for women to be polluting is greater during menstruation and childbirth as bodily waste from the lower body poses a particular threat of pollution. 41 Women’s sexuality is also potentially polluting and codes of behaviour may be evident to protect against this, for example not revealing certain body parts and women not spending time alone with men other than their husbands. Concerns relating to modesty are likely to impact on the acceptability of behaviours such as breastfeeding and have consequences for health service delivery, including the need to ensure that Traveller Community women are able to access a female health practitioner.

The literature points to a higher number of modifiable risk factors that may contribute to the poorer health of these groups. A greater proportion of Traveller Communities than the general population are current smokers (around 50% compared with around 37%, respectively). 42 Smaller numbers of Traveller Community members report drinking alcohol than the general population, but those who do consume alcohol do so more often (around 65% of male and 40% of female Travellers drink six or more alcoholic drinks on days when they are drinking alcohol compared with around 35% of men and 17% of women in the comparator population). 42

Compared with the general population, fewer Traveller Community members reported eating at least five portions of fruit and vegetables in Ireland (65% and 45%, respectively). 42 A smaller-scale study conducted in Wrexham also reported that Traveller Communities have a poorer diet and lower levels of physical activity than the Welsh and UK population, as well as residents from a deprived local area. 43 Traveller Communities more often reported high blood pressure or cholesterol in the past year (36.5% of Traveller Community members compared with 28.3% of medical card holders in the general population). 42

The literature reports a low uptake of immunisation and well-women services among Traveller Communities. 44 Only around 2.2% of Traveller mothers initiate breastfeeding compared with around 50% of those in the general population. 33

Social and community networks

Extended family provides an important source of social support among Traveller Communities, with family members often expected to provide care for family members who are older or unwell. 37 As such, a positive model of ageing is cited among Traveller Communities, with older Traveller Community members less likely to experience social isolation and loneliness. 45 In addition, elder members of Traveller Communities are often important sources of advice on health, with a higher number of Traveller Community members reporting being supported by parents than the general population (69.6% of Travellers compared with 38.3% of the general population). 42 However, owing to a lack of space on authorised sites, and as Traveller Community members often resort to housed accommodation in order to avoid cycles of frequent eviction, members often find themselves separated from family and community support systems. 46

Living and working conditions

General socioeconomic, cultural and environmental conditions

There is explicit racism and discrimination directed towards Traveller Communities in society, with this being regarded as the last accepted form of prejudice in England. 58 There is little recognition of the culture or heritage of Traveller Communities and an absence of positive portrayals of Traveller Community lifestyles in mainstream society. 6 A study of media coverage of Traveller Communities in Scotland found a disproportionate amount of coverage relating to these groups (an average of 1.5 articles per day), with nearly half (48%) classified as overly negative portrayals. 59 The under-representation of Traveller Community members in political activities means that they have little voice to challenge such representations. 6 Systems of health service provision contribute to the exclusion of Traveller Communities. For example, it is suggested that GP surgeries might be reluctant to register Traveller Communities due to the extra paperwork required when taking on temporary residents and perceptions that registering Traveller Community members will affect GPs’ ability to meet performance targets around immunisation. 60

How much evidence of what type is available on the different health needs of Traveller Communities?

As shown in Figure 15 , just under one-quarter (23.7%) of publications on the health of Traveller Communities concerned access to and use of services, constituting the largest proportion of articles. Taken together, the literature on general health needs and health status contributed a sizeable portion of evidence. Lifestyle factors and women’s health each accounted for around one-tenth of the sample of publications (9% and 9.4% respectively). A slightly smaller number of publications focused on the wider determinants of health (7.6%) and very few studies focused on mental health (1.4%), oral health care (1.4%) or cardiovascular disease (2.9%).

FIGURE 15.

Distribution of publications according to topic.

As shown in Table 2 , while research studies made up the majority of publications for most topics within the overall evidence base on Traveller health, over half of publications focused on access to services were anecdotal accounts. Publications on communicable diseases also contained a greater proportion of anecdotal accounts than research studies.

How much evidence from which countries is available on the different health needs of Traveller Communities?

As shown in Table 3 , a smaller proportion of research and practice in central Europe focused on access to services than in Ireland, the UK and eastern Europe. As shown above, there appear to be few publications pertaining to cardiovascular disease and cancer in Traveller Communities, with central Europe, eastern Europe and Ireland contributing all of the available evidence in this area. A greater proportion of the overall evidence in central Europe and Ireland focused on child health than did other countries. The UK had a much greater proportion of articles focused on health needs and health status of Traveller Communities, contributing the majority of articles in this area. By contrast, the proportion of evidence in the UK focusing on lifestyle factors was small, with eastern and central Europe containing the greatest proportions of evidence on this topic. All of the four publications pertaining to mental health were published in the UK and articles on oral health were contributed solely by the UK and Ireland. The proportion of publications focusing on the wider determinants of health was highest in eastern Europe and central Europe. While the USA looks to have a vastly greater proportion of background and policy documents than other countries, this is a product of multiple cultural competence guidelines produced by the same organisation on different aspects of Roma culture and health.

How much evidence by which authors is available on the different health needs of Traveller Communities?

Academic authors appear to write, for the most part, about health status and health needs, access to and use of services, lifestyle factors, women’s health, children’s health and the wider determinants of health ( Table 4 ). Little work by academic authors focused on communicable diseases, mental health and oral health care. The majority of publications by health service providers and Traveller organisations or third-sector organisations focused on access to services. Only academic authors published on cardiovascular disease and cancer. Children’s health was covered only by academic and health service providers. Health service providers and government or local authority authors were more likely to address communicable diseases. A slightly greater number of academic authors and third-sector organisations addressed the wider determinants of health than did government or health service authors.

Which health areas do reported outreach interventions target?

Those studies describing outreach covered 10 of the 12 topics included in the overall sample ( Figure 16 ). The majority of articles describing outreach interventions focused on access to services (44.9%), a much greater proportion than those that did not describe outreach interventions (16.7%). Improving access to services, therefore, seems to be a predominant focus of outreach interventions. Just over one-tenth (11.6%) of articles describing outreach focused on lifestyle factors. Few articles described outreach focused on children’s health, oral health care and mental health care, and no publications described outreach focused on cardiovascular disease or cancer, although this is perhaps unsurprising given the small amount of overall evidence on health focused in these areas.

FIGURE 16.

Distribution of publications according to topic and description of outreach.

A nomadic lifestyle

Discrimination and historical persecutions

It is widely acknowledged and documented that Traveller Communities have been subjected to persecutions, harassment and evictions from the fifteenth century onwards,168 ^, 169 with earlier episodes deemed to have been likely. 170 They were a key target of the Nazi extermination efforts in the Second World War, being referred to as the ‘Gypsy plague’, with Interior Ministry of Württemberg promulgating decrees such as the ‘Gypsy Nuisance decree’, among others. 171 Although the inclusion of Travellers in the Holocaust is disputed (with regards to whether or not Nazi efforts to eradicate them were as systematic as they were for Jewish people), it remains that they suffered considerable losses. 172 Since then, the contrast between compensatory policies and organisation after the war between those accorded to Jewish and Traveller victims has also been highlighted. 173 ^, 174

Under the communist regime in (the then) Czechoslovakia, Czech Roma were subjected to severe state policies designed to restrict their nomadic lifestyle, seen as a threat to the prevalent social and state order. Harsh measures were introduced to control ‘Gypsies and other work-shy vagabonds’. 175 In 1956, the Act on Permanent Settlement of Nomadic People was passed, forcing Travellers into settlement, and was mirrored in other communist totalitarian European states. Under these policies, Travellers’ horses were killed and caravans were destroyed, thereby much reducing their potential for independent living. 176

Discrimination continues to prevail,6 a phenomenon compounded by negative and widespread media stereotypes. 177 The media, which are often the only way in which settled people learn about Traveller culture, play a particularly important role in perpetuating stereotypes and often overlooking positive interactions between sedentary and nomadic communities. 177

Such historical persecution and discrimination may explain Traveller Communities’ reluctance to invest their trust in settled people. 42 ^, 178 Although the literature available on outreach interventions tends not to distinguish between different groups of Travellers, consultation with steering group members suggested that European Gypsies are likely to have experienced more extreme levels of racism and discrimination and, therefore, enter interactions with a greater premise of mistrust (EH1). As a result, Travellers often turn to extended family or community for health-care support or advice.

Many Gypsies and Travellers are also afraid that if they disclose having mental health problems social services will get involved and their children will be taken away. There is a reluctance to contact outside agencies for help given negative past experiences with government authorities.

Atterbury and Bruton 2011,165 p. 2

While prejudicial and discriminatory practices are often developed on the basis of the nomadic lifestyles of Traveller Communities, immobility or temporary settlement is also often faced with very public resistance. 155 Greenfields and Smith160 expose how living in hostile environments leads Travellers to rely heavily on close social ties (predominantly within their extended family/kin group) in order to maintain a sense of stability and security. This ‘inward-looking’ tendency may present a stumbling block to developing the kind of bridging social ties on which an outreach programme is likely to rely.

Exposure to assimilatory policies and practices

As exposed above, the historical relationship between European states and Travellers has been fraught, particularly owing to the cultural differences between nomadism and sedentarism. Bancroft176 highlights two practices born out of these tensions: ‘cultural suppression’, which stops Traveller Communities expressing their cultural identity, and ‘forced removal’, which constantly displaces this cultural expression. Some commentators have gone as far as suggesting that policies directed at regulating Traveller movements have amounted to a form of ‘ethnic cleansing’. 179 Across Europe, numerous pieces of legislation are based on a sedentarist logic, in an effort to control what are seen as disorderly lifestyles.

For example, after being forced to settle and accept low-paid, low-skilled forms of employment during the post-war period, Roma from the Czech Republic have been segregated and ghettoised since the 1990s. This spatial exclusion has taken the form of walled areas, featuring Portakabin-type accommodation, and being placed under heavy surveillance. Towards the end of the decade, some Travellers were subsidised to leave the Czech Republic, leading to ‘Roma refugee panics’ in western European countries. 176

Shubin and Swanson155 expose the sedentarist policies and legislations that lead to a near criminalisation of nomadic lifestyles. While they focus on Scotland, their analysis of how policies have pushed many Travellers into either permanent settlement or perpetual motion applies across borders. Despite the fact that it was promulgated nearly 150 years ago and may constitute a violation of human rights, the 1865 Trespass Scotland act is still the legislation most often used to regulate Traveller movements. 155 More recent policies aiming to manage mobility include the 1959 Highways Act in England and the 1984 Roads Scotland Act, which forbid encampments anywhere on or near a road, thus granting authorities the right to displace Travellers parked near any road in the country. The 1986 Public Order Act prevents the gathering of more than 20 individuals, thereby limiting Travellers’ opportunities to maintain extended family networks.

In the UK, in 1968, Parliament passed the Caravan Sites Act that included a statement obliging local authorities to provide caravan sites for Travelling people, although the systematic translation of this act in practice has been questioned. 177 The Cripps report180 and the Government Circular (1977) expressed statements of support for the rights of Traveller Communities to live a nomadic lifestyle, and the right to live on independent sites previously discouraged under the Caravan Sites Act. 41 Nevertheless, the fact that the Caravan Sites Act did not result in Travellers giving up their nomadic lifestyle was cited as an explicit rationale for the legislation that followed in the 1992 Conservative Party Press Release. 181 ^, 182 In 1994, the UK Parliament passed the Criminal Justice and Public Order Act, which, while acknowledging the enduring shortfall of legal caravan sites, revoked the need to provide legal stopping sites, thereby in effect criminalising nomadic lifestyles. 181 ^, 182 It also stipulated that convoys of six vehicles or more travelling together could be broken up, thereby making it more difficult for Traveller families to travel together and maintain social networks.

The paragraphs above by no means present an exhaustive review of the kind of assimilatory and sedentarisation efforts that Travellers have been exposed to. It is hoped, however, that they do provide an explanatory hint of Travellers’ resistance, lack of trust in settled institutions and individuals, fear of loss of their cultural identity and over-reliance on close social ties. Traveller Community members consulted expressed an explicit concern about the attempted erosion of their culture and values through enforced settlement into housing (EH9). Understanding the impact of these lifestyle factors and environmental and historical adversities on the formation and maintenance of social networks emerged as key to understanding how outreach workers might interact with the Communities.

Social networks

Mobility is a key distinguishing factor between Traveller Communities and other disadvantaged groups. As exposed above, it is not systematically correlated to living arrangements (trailer/caravan or house). What a nomadic lifestyle does, however, is alter the morphological features of the social networks upon which Travellers rely for health care and information. This generates or curtails opportunities for outreach workers to interact with the Community in a constructive and cumulative manner, particularly when the outreach worker does not belong to the Communities. Therefore, understanding the impact of mobility on forming, maintaining and drawing on relationships within and outwith the Community is key to understanding the potential for outreach workers to develop trusting and effective relationships with a potential to impact on social capital and health. Social network theorists have, however, warned against the systematic expectation of social cohesion among a priori groups, and encourage an assessment of the structural properties of relationships between people not necessarily linked to geography of kinship. 183 This is particularly relevant here, as while mobility may impact on the ability of settled practitioners to form, maintain and develop relationships with Traveller Communities, strong social bonds clearly exist within and between nomadic groups regardless of the duration and frequency of their geographical proximity. At the same time, homogeneity and harmony must not be assumed among Traveller Communities, as conflict between families is said to be a primary motivation for movement (EH4). Thus, using singularly geographically or culturally bounded lenses (e.g. neighbourhood or ethnic group) to understand the nature of Traveller networks would greatly limit the potential for intervention effectiveness.

Barraclough 2002201

This article describes the work of a specialist health visitor situated within a primary care trust and working with the Nottingham Traveller Team. The multidisciplinary team is led by a teacher and comprises professionals with diverse backgrounds and skills. The programme delivers both health and education services for Traveller Communities and views these as interdependent. Although the article does not describe a detailed negotiation process, the intervention appears to have been responsive to the needs of individuals and families as they emerged. The health visitor offered informational and instrumental support and facilitated access to services through, for example, helping registration with services, making appointments, providing reminders and interpreting letters. This project therefore provides support for theory 4, in that a successful negotiation phase will elicit expressed needs and use opportunistic strategies for health improvement. This leads to participation, in this case in access to health services and school attendance. Examples given include a mother of six children who completed a course of dental treatment while living at seven different addresses in 3 months. Participants cited help with reading, writing and understanding health systems as being particularly beneficial.

[I]f it wasn’t for you we’d be spending 5 hours in casualty every other week.

Grandmother of mobile family group with five children under the age of 1 year – after helping them to obtain a temporary GP, p. 185

Travellers on the team highlighted that trust in health visitors would not be assumed: ‘Travellers is funny about health visitors. We know you and I trust you, but if we go on to another site, we don’t know. We lead a secret life and a free life, we’re careful’ (p. 185). Thus, while the health visitor is unlikely to have entered the Community with low trust status born out of previous negative experiences, they are likely to have a neutral trust status. The CMO configuration for Barraclough201 is represented in Figure 19 .

FIGURE 19.

Context–Mechanism–Outcome configuration for Barraclough 2002,201 Streetly 1987116 and Reid 1993. 60

The positive experiences that Travellers describe above led to the development of trust in the health visitor as someone who could be relied upon for help. This led to a conscious decision to participate in activities generated. The article reports that Travellers became ‘increasingly responsive to the team and the work they were doing’ (p. 185). This article lends support to theory 1 and theory 3, of the importance of negotiation when outreach workers do not have an established place on Traveller Community social network maps, and of the establishment of trust, in this case through demonstrating capability, integrity and predictability.

Streetly 1987116

This paper describes a programme of health care for Travellers set up and monitored by a health authority. Two health visitors were given responsibility for a site alongside a clinical medical officer. The service was delivered out of a ‘multipurpose mobile’ which had been bought by the local education project. The health visitors are likely to have started from a position of neutral trust; they worked with teachers working on the site who had built a relationship with Travellers in order to gain acceptance. The service aimed to provide preventative health services on site, as well as facilitate access to existing services. Initially, the help requested from Travellers related to more immediate concerns relating to ‘clothing, welfare, and problems with eviction’; however, once health visitors had helped to address these issues, Travellers raised concerns relating to health care. The intervention, therefore, provides substantiation for theory 4, as health visitors with a neutral trust status worked with Traveller Communities through a process of negotiation, which elicited and responded to needs articulated. In the first instance, the project focused on families with young children and offered immunisation, developmental screening, feeding advice, weighing and family planning services. It later extended its reach to all Travellers in response to concerns around a lack of access to services among men and older people, as well as to those on nearby unauthorised encampments. The outreach workers encouraged attendance at available services, sharing the names of GPs who were willing to register Travellers, booking and accompanying them to appointments with dentists and a chiropodist. Liaison with local services was also undertaken in order to enhance their sensitivity to the needs and situation of this group. Travellers were provided with cards detailing their medical records in an attempt to increase continuity in care. The article reports acceptance of some preventative services, including developmental screening and hearing and vision testing, as well as uptake of family planning facilities, dental, physiotherapy and chiropody appointments, all of which can be classified as ‘participation’. The CMO configuration for Streetly116 is represented in Figure 19 .

The project had less success in encouraging the uptake of immunisation, though this is noted to have improved as the team became more accepted. Uptake of immunisation may necessitate a greater level of engagement (i.e. cognitive engagement in which Traveller Communities invest in the idea of immunisation as opposed to behavioural engagement referring to participation in a programme), particularly given the pollution taboos described earlier relating to the importance of preserving the cleanliness of the inner body,41 and, as such, may have been difficult to achieve in the timescale.

Reid 199360

This paper describes the provision of a weekly clinic for Traveller Community members run by a full-time health visitor. A dentist and chiropodist work in the clinic and a GP practice is situated in the same building. The clinic provides well-women services, including cytology and family planning, as well as child and baby services, with a particular focus on immunisation. It focuses on instrumental support to alleviate barriers to accessing health services and to accommodate the transience of Travellers. As far as possible, the clinic acts as a one-stop service, working opportunistically to conduct immunisations and examinations immediately. In addition, health promotion videos have been produced which take into consideration high levels of illiteracy.

The health visitor conducts outreach on sites and visits those who have just moved into the area to encourage them to attend the clinic and to provide transport where required, as well as providing awareness to other health professionals about the needs of Travellers. The service does not advertise itself as Traveller specific and aims to assist Travellers in accessing mainstream health services. Health promotion advice is also offered opportunistically on site visits:

On a site visit recently we found 15 people, including five children, gathered in one trailer. The father was present so we did not get to talk about family planning, but it was a great opportunity to talk about immunisation.

Reid 1993,60 p. 29

Although the outreach worker is not likely to have started from an initial position of high trust, the responsive approach, which includes offering health advice at appropriate times and places, provides further illustration of a successful process of negotiation (theory 4) and of the relationship between initial trust and the negotiation of the intervention focus (theory 3).

The paper provides examples suggesting high levels of acceptability of the service among Travellers.

Another Traveller mother says: ‘When you can’t read and write it’s difficult to sort things out yourself. I can come here and talk about things, they are explained and I understand. It’s nice to have someone to sort things out for me, someone who understands gypsies.’

Reid 1993,60 p. 28

Communication, through both how things are said and the timing and sensitivity of the advice offered, therefore, seems a key factor in building trust in this intervention.

Barraclough,201 Streetly116 and Reid60 share the CMO configuration drawn in Figure 19 . They provide illustrations of interventions offering social support (instrumental and informational) in a context of neutral trust and negotiation of the topic, leading to behavioural engagement and participation (theory 4). These articles all describe professional or semiprofessional outreach workers who are not from the Community and use explicit strategies to build trust with the Community, through adequate communication and a demonstration of capability, integrity and predictability (theory 1). This leads Traveller Community members to have sufficient levels of trust in the workers to make the conscious decision to participate (behavioural engagement).

Austerberry 2008204

The project was targeted at young people, with an emphasis on specific ‘vulnerable’ target groups, including young people from Traveller Communities. A model of ‘hub and spoke’ was used in one locality, whereby a hub would be in a centrally located setting, serving as a resource and a point of multiagency service delivery. The spokes consisted of a range of outreach provision in different non-health settings around the borough. The evaluation found that the roles of the specialist nurses and the development workers (including a health inclusion worker for Travellers and Gypsies) were particularly key to enhancing participation. Because of the range of these roles, the level of trust that they had as they entered the Community is difficult to assess. The range of issues addressed included healthy eating, exercise, smoking, substance misuse, sexual and reproductive health (including chlamydia screening) and emotional health. The topic was therefore not negotiated, and the relevance or priority of what was on offer is difficult to assess.

A plan to have a mobile bus in an isolated rural area in Northumberland was rejected by young Travellers, who thought that a bus arriving in their site would be too visible and compromise their anonymity. This may have been a key barrier to participation, as there could have been social pressure not to engage in the intervention, particularly if its aims were unclear. Overall, the project achieved high rates of participation, but the proportion of young people from Traveller Communities accessing services remained low over the 2 years, despite early encouraging results from the work of the Traveller specialist worker.

Austerberry204 describes the kind of threat to intervention success described in theory 5, in that the intervention was delivered on an assumption of similarity between Traveller and settled youth, rather than an engagement with the Community. The intervention demonstrated a lack of understanding of the strength of social bonds within the Community, the prevalent mistrust in non-Travellers and the persistence of taboo subjects around, for example, sexual and reproductive health. There were no attempts to build trust with the Community prior to the intervention commencing, with an assumption that, if services were geographically better situated, Travellers would access them. This verifies theory 1, in that without a prior trust-building exercise, this intervention was unlikely to be successful. The combination of low to neutral trust and lack of negotiation over perceived needs verifies theories 2 and 3. The CMO configuration for Austerberry204 is represented in Figure 20 .

FIGURE 20.

Context–Mechanism–Outcome configuration for Austerberry 2008. 204

In Austerberry,204 as in the three previous studies, the services offered here are broad and consist of social support strategies. These are, however, implemented in a context where need is assumed rather than understood and the focus of the intervention is not relevant. In this context, social support strategies do not trigger a reasoning of engagement, resulting in poor attendance. Austerberry,204 therefore, substantiates the need for a favourable context (either high trust or responding to an expressed need: theories 2 and 3) in order to enable social support interventions to lead to participation in programmes.

Darby 2007202

This article describes the organisation of breast cancer screening in Hungary by organisations working for the welfare of Romani people. It is very probable that the intervention recipients knew the outreach workers, as one of the workers, at least, who is quoted in the report, was a young Romani woman from Hungary. However, the closeness of their relationship is difficult to assert with any kind of certainty from the text. The screening programme was organised and messages were sent to the Community to encourage women to attend. Given that ‘Romani women are three times more likely to succumb to the disease than non-Romani women’ (p. 1),202 screening is likely to have been seen as relevant, even though the intervention focus was not negotiated. Key elements that triggered participation are described as the fact that mammograms were provided free (a change in national policy), and that screening sites were located nearer to where Romani people live (there was also a mobile scanning unit). The biggest reported barrier to attendance was a fear of discrimination and reluctance to, potentially, being examined by a male doctor, rather than an objection to screening itself. The article describes how a young Traveller with a family history of breast cancer set about convincing other women that they should get screened. As a result, rates of mammograms among Romani women doubled from 26% in 2001–2 to 56% in 2002–3.

Therefore, the resources offered by the outreach programme are mostly in the form of social support (instrumental and appraisal), much like Barraclough,201 Streetly116 and Reid,60 above, although this time the intervention is much more focused and less opportunistic. Although mostly descriptive, the results from this study are not self-reported, suggesting there has been a real impact, at least on screening attendance. The CMO configuration for Darby202 is represented in Figure 21 . The fact that the intervention topic was not negotiated might have been offset by the high prevalence of mortality from breast cancer in the Community (it was relevant), coupled with the fact that at least some of the outreach workers were from the Community. This favourable context enables the programme strategies (free mammograms and convenient location) to trigger decisions to participate, an engagement reasoning that is at least behavioural, if not cognitive (which would involve longer-term lifestyle change and more regular proactive screening – these are described, but only anecdotally).

FIGURE 21.

Context–Mechanism–Outcome configuration for Darby 2007. 202

Dignan 2005205

This study was designed to test the relative effectiveness of an intervention delivered face to face or by telephone to urban Native American women. Most prior research on breast cancer among American Indian women has focused on reservation populations, leaving urban populations relatively understudied. The urban Native American population shares with Traveller Communities a consistent exposure to assimilatory practices and policies and mobility, as families may have a base in the city but return regularly to their reserve of origin. In addition, as they travel, many struggle to keep paying their telephone bill and regularly find the line disconnected, rendering even telephone contact difficult. Therefore, this study helps to verify theory 5 on the lack of understanding of needs and priorities as expressed by the target population.

The effectiveness of the intervention was evaluated using a design that included a pre test, a random assignment to a face-to-face or a telephone group, and a post test. Outreach workers were local Native American women (referred to as ‘Native Sisters’) but the exact nature of their relationship to the target group is difficult to assert. The study targeted a total of 929 potential participants living away from their home reserve. It is, therefore, reasonable to assume that while the researchers might have thought the intervention was building on strong community ties, this is unlikely to be the case (as the frequency and intensity of social contacts is likely to be weak). However, it is reasonable to assume that because of their ethnic origin, the Native Sisters entered the Community with a neutral (rather than low) level of trust.

Studies demonstrate that ‘the 5-year breast cancer relative survival rate for American Indian women is 48.8% compared with 75.7% for whites, 73.4% for Hispanics, 62.8% for African Americans, and 69.4% for Native Hawaiians’ (p. 29). In addition, access to mammography screening is described as particularly difficult for Native American women in the area targeted and there are economic and transportation barriers to uptake. However, survey data suggest that cancer may not be seen as a priority by this population. Therefore, the focus of the intervention was not negotiated and it is likely that it was not seen as relevant. This verifies theory 2 on the inverse role of trust and negotiation, according to which, in the absence of high trust, a higher degree of negotiation (and effort to meet perceived needs first) should happen.

The Native Sisters were trained to provide information on the importance of mammography and adherence to guidelines, strategies to overcome barriers to obtaining mammograms and follow-up care, and reinforcement for scheduling and keeping appointments. They, therefore, principally offered informational and instrumental social support. This study, however, introduces a level of negotiation over the delivery mode of the intervention (face to face or by telephone), therefore emphasising opportunities for instrumental social support.

The study compared face-to-face delivery of the intervention with delivery by telephone and a control group. The increase in the proportion of women who reported receiving a mammogram within the past 12 months from pre test to post test was statistically significant (42% for the telephone intervention and 31% for the face-to-face intervention), but there were no significant differences between the intervention and the comparison group. Only 157 out of a potential 929 participants took part in the study and one-third of those participating were lost to follow-up.

This article offers an interesting comparison with the Traveller Community study described by Darby. 202 Both target breast screening, an intervention that requires behavioural engagement only (rather than, necessarily, a longer-term behaviour change) and both sets of outreach workers are likely to have entered the Community with a neutral trust status. The key difference is that in Darby202 the intervention focus is likely to be seen as relevant and instrumental barriers are most likely to explain lack of access. In Darby,202 the intervention also took place near Traveller settlements, so that the influencing potential of strong social ties among women attending could be maximised as a result of the intervention. Dignan,205 on the other hand, reproduces the pattern observed in Austerberry,204 in including a poor understanding of perceived need and a poor appreciation of the importance of strong social ties and the necessity to build, rather than assume, trust in the outreach worker before an intervention can bear fruit. The CMO configuration for Dignan205 is represented in Figure 22 .

FIGURE 22.

Context–Mechanism–Outcome configuration for Dignan 2005. 205

Fitzpatrick 199764

This study was based on a previous one which had been successful in settled mothers, and which had involved lay volunteer community mothers delivering a child development programme to disadvantaged first-time mothers. 207 Given the success of this first trial, this article described the effort to apply the model to Traveller mothers. Outreach workers were experienced settled community mothers who were given additional training to heighten their awareness of and sensitivity to the needs of the Traveller parents. They were not part of the Community and had had no prior contact with it. It is therefore reasonable to assume that they entered the Community with a low trust status.

All travelling mothers giving birth within the area (Dublin) or entering the region within 4 months of delivery were offered the help and support of a settled community mother. However, the intervention did not seem to take into account the fact that Travellers are a very tight-knit community with definite views about childcare, and that mothers are more likely to seek one another’s advice rather than turn to settled mothers who might have different values [as corroborated by expert hearing findings that Traveller Community members expressed concerns about their children mixing with settled children (EH9)]. Therefore, the intervention was not negotiated, and was unlikely to respond to a perceived parenting need (theory 3). However, the authors report behavioural engagement, with better rates of immunisation, maternal well-being and nutrition, and reduced hospitalisations. The programme is also reported to have been well accepted by Traveller mothers.

However, this study establishes the significance of the results against a control group of settled mothers, which makes the significance of the results difficult to establish. Given Traveller mothers’ likely weariness of settled outreach workers, it is likely that they participated in order to be seen to co-operate rather than as a manifestation of belief in the value of advice provided.

The theory refinement process described on p. 38 highlighted a legacy of historical discrimination and persecution, which included the removal of Traveller children from their families. 165 This may lead Travellers to be suspicious of interventions and to fear being perceived as not coping with parenting, as also exposed in Cemlyn. 188 In addition, research highlights that Travellers often prefer not to talk about mental health owing to the fact that it is stigmatised in the Community,39 casting doubts over the validity of self-reported maternal well-being in this study.

This study differs from Darby,202 in that the need addressed is assumed by the intervention organisers rather than assessed or negotiated. While the CMO configuration features the same pattern on the face of it, it is likely that the motivational factors that led to participation and report of acceptability were more linked to the historical legacy of Travellers than to the intervention. The decision to participate is thus likely to be informed by a protectionist attitude, rather than an open engagement with the intervention. This provides a verification of theory 5, as reports of well-being and acceptability may be unreliable when interpreted without awareness of the nature and strength of Traveller networks. In the long term, it seems reasonable to expect that this kind of intervention (based on low trust, low negotiation and poor understanding of the nature of Traveller bonds) may lead to further entrenched disengagement. The CMO configuration for Fitzpatrick64 is represented in Figure 23 .

FIGURE 23.

Context–Mechanism–Outcome configuration for Fitzpatrick 1997. 64

Leeds GATE 2007192

Leeds GATE was formed in 2003 as a charitable organisation by Gypsy and Irish Travellers to improve the quality of life for their Communities. It is a high-profile organisation within the UK and jointly leads on a National Gypsy and Traveller Health Inclusion project with the Department of Health.

This report describes a project conducted in the UK which aimed to provide opportunities for discussion about domestic violence among Travellers; to increase the self-esteem and confidence of Traveller women to keep themselves safe; and to increase access to available services offering support for those experiencing domestic violence. Much like Pavee Point, the work of Leeds GATE is continuous and the project on domestic violence occurred in the context of many other initiatives focusing on accommodation, health, education and employment, and social inclusion. The project was initiated by a Traveller Community member (who also worked as a youth inclusion worker), following her participation in training on domestic violence and in response to an observed need within the Community. Domestic violence is noted to be a hidden and stigmatised issue within Traveller Communities, and the outreach worker identified a lack of recognition among Community members that domestic violence may involve forms of abuse other than those that are physical: ‘Lots of our women don’t know what domestic violence is, they think it is all based on a good hiding and believe if you don’t get hit then you are not suffering’ (p. 2). 192 The decision around the intervention topic, therefore, responded to a need identified by a Community member; however, it was not negotiated with the wider Community as in the Health Service Executive report128 discussed below. As such, this report provides support for the inverse relationship of trust and negotiation described in theory 2, because the outreach worker’s position as a known and trusted member of the Community enabled the discussion of domestic violence within the Community, despite it being considered a ‘taboo’ topic. The outreach worker herself notes initial concerns about the potential responses of members of her own Community to the project: ‘I didn’t know which way my Community was going to react to it’ (p. 12). This project, therefore, built on the outreach worker’s relationships within the Community in order to initiate discussion and influence social norms around domestic violence (theory 6). The outreach worker spoke informally while spending time with families with whom she was connected, in order to begin ‘sounding out women in her community as to their receptivity to speaking about domestic violence’ (p. 4). The report explicitly states that the outreach worker’s ‘knowledge of the particular sensitivities and context within Gypsy and Irish Traveller families and use of familiar language and concepts are critical to the achievement of shifts of understanding and viewpoint and to the sustainability of change’ (p. 7). The outreach worker describes her own reactions of feeling shocked when learning about what is considered domestic violence and may have been able to draw on this experience to identify with Community members when talking about the issues.

Initially, the outreach worker focused on five women, but she increasingly found that others sought her out to discuss issues relating to domestic violence. Gradually she opened up discussions, when appropriate, and highlighted opportunities to attend further training. In addition, three women known to suffer domestic violence were taken for a meal at a venue where they felt comfortable. They discussed their experiences and highlighted a need to raise awareness of organisations that could help.

As a result of the project, five women attended training on domestic violence and three others attended child protection awareness training. In addition, the project reports an increase in women’s confidence in discussing and addressing domestic violence. Assistance was provided to six women to escape a violent home environment and evidence was found of changing attitudes towards women and a greater consideration of responsibilities for power sharing among men.

A huge outcome for us was a worker witnessing one of the women, two weeks after a full conversation with GATE staff, bringing up the subject of domestic violence in front of her husband . . . informally from the community we have heard that she is more empowered and suffers less violence.

Leeds GATE 2007,192 p. 9

The project reports changed behaviour among Traveller Community members; as a result of learning about the impact of domestic violence on children, one young woman removed her sister’s children during a row. Women shared their understanding and offered support to others:

The worker prompted but it was mainly the two women who had been at the meal telling the other two women that they can go to GATE for help and that they shouldn’t put up with it. This was a long discussion that lasted over 45 minutes and was quite emotional.

Leeds GATE 2007,192 p. 11

The combination of a highly trusted member of the Community who tackles a subject that has resonance in other Traveller women’s lives provided a fertile context within which the discussions (sometimes away from the Community, in a neutral environment) could happen and have an impact on the participants knowledge, attitudes and behaviours surrounding domestic violence (theory 6). It is likely these outcomes happened because the information received triggered a willingness to engage with the subject and gave women the confidence to question the status quo. Cognitive engagement happened because the topic had resonance and the information was delivered in a safe environment, which led to the outcomes observed. The CMO configuration for Leeds GATE is represented in Figure 24 .

FIGURE 24.

Context–Mechanism–Outcome configuration for Leeds GATE. 192

Kelly et al. 2006133

This study took place in one of Bulgaria’s largest Roma communities and was prefaced by an extensive ethnographic phase, which aimed to map out significant networks within the Traveller Community. Workers who were well known from the Community carried out observations in order to identify the presence of ‘social circles’ and the person at their social and affective core. These people were referred to as indexes and became the entry points to access and recruit social networks. Each index provided the research team with a list of network members, who in turn were asked to indicate who on the list they most and least preferred in five domains (including spending time together, trusted for advice, and discussion of important matters). A sociometric analysis was undertaken from this to identify the network lead. Leaders were then provided with training on how to counsel and advise other members of the network on reducing HIV infection risk behaviour. This study, therefore, features an explicit effort to build on close social ties and use them as levers for health promotion, testing the correlate of theory 1 – that interventions are more likely to be successful if they build on existing relationships of trust. The study, however, provided no opportunity for the Community to shape its focus (in terms of ensuring best fit between provision and expressed need). In this, it provides a test of theory 2 on the inverse rule of trust and negotiation. In fact, it provides a significant test, as we know from other studies that sexual behaviour tends to be considered a taboo subject among Traveller Communities, not only in the UK but also in Bulgaria. 167 ^, 208 So, while Roma groups in eastern Europe are thought to be at increased risk of HIV infection or acquired immunodeficiency syndrome (AIDS), it is unlikely that members of the Community would have highlighted it as an issue to be tackled by an intervention. 209

The programme capitalises on opportunities available to group leaders to exert social influence, leading Community members to alter their behavioural patterns (verifying theory 6). At the core of the intervention was the idea that within Communities with a large degree of distrust of outsiders, ‘advice and recommendations coming from personally known network members . . . carry credibility and influence’ (p. 1101). The study attributes the greater robustness of outcomes reported at 12 months than of those at 3 months to changes in social norms over time. Members of social networks appear to have become cognitively engaged with the intervention as they report a change in behaviour corroborated by a reduction in the incidence of biologically assessed gonorrhoea. The study reports a significantly greater reduction in the prevalence of reported unprotected intercourse (p  =  0.01) and significantly increased knowledge of the risk of AIDS, positive attitudes to condoms and strength of intentions to reduce risk behaviours in the intervention group when compared with the control group. The intervention was reportedly most effective for those with casual partners, who were most at risk. This group knew and trusted the leader and it is possible that they viewed the intervention as more relevant given their greater engagement in risky behaviour, or that they experienced greater social pressure to conform, as their behaviour would be furthest from the safer emerging social norm. It therefore seems highly plausible that the underlying mechanism that led to the intervention success was cognitive engagement from the individual risk-takers, and their observed change in behaviour. The CMO configuration for Kelly et al. 133 is represented in Figure 25 .

FIGURE 25.

Context–Mechanism–Outcome configuration for Kelly et al. 2006. 133

Rather like Leeds GATE,192 this project had a very tight focus and built on strong social ties. 133 The key difference is in the negotiation of the topic, which came from a Community member who then ‘sounded out’ members of her network for their reaction to a sensitive topic in Leeds GATE, but was inexistent in this case. One might wonder why, despite the difference in negotiation, the same strategy of opportunistic conversations triggered cognitive engagement. This may be because while the outreach worker was a trusted member of the Community in Leeds GATE, the authors in Kelly et al. 133 purposefully sought a Community member with pre-existing influence. Thus, the profile of the indexes in Kelly et al. 133 was sufficiently high in the Community to allow for engagement to happen in spite of the fact that the topic was not negotiated and would have been unlikely to be selected. The influential position of index members is likely to have initiated a process whereby talking about risky sexual behaviours, and engaging less in them, became more socially desirable. This leads to participants making the conscious decision to engage with the issue and act upon it. The two studies thus share another common ground, in that they both tackled sensitive subjects within the Community which would have been unlikely to be highlighted as an area of need to members from outside the network.

Chiriac 2007203

This study was conducted in Bucharest, Romania, in a neighbourhood where a majority of the Roma population lives. Living conditions are poor as a result of poverty, lack of education and a lack of initiatives aiming to improve living conditions. The study describes the role of a sanitary mediator working as part of a tuberculosis (TB) prevention and treatment campaign. Mediators were trained members of the local Roma Community, and so while it is plausible that they were known to the group receiving the intervention, the extent to which they were known and trusted is not reported in detail. The article reports barriers to receiving treatment for TB stemming from a lack of knowledge, a lack of awareness that TB treatment is free and the stigmatised nature of TB within the Community as a ‘disease of the poor’, in spite of its prevalence. Thus, the intervention focus was not negotiated but potentially relevant. The programme consisted of an information campaign and home visits to encourage screening and treatment adherence: ‘I finally managed to persuade him to think of himself and the children first and stop being ashamed of his disease . . . At first I would visit him and check if he had taken his medicine. I did that for one year. Finally he understood he had to take care of himself’ (p. 2). 203 Instrumental support was also offered in terms of accompanying people suspected of having TB into medical centres and helping Roma obtain ID (identification) cards or birth certificates so that they could access services. Thus, this programme provides instrumental support in a context of trust which seems to trigger cognitive engagement and behaviour change (acceptance of and adherence to TB treatment – theory 6). The article reports an improvement in the health of this individual and a change in attitude of the Community towards TB, with many people from the local Community attending a caravan in order to be examined by a doctor and approaching the mediator with possible symptoms of TB. Five further cases of TB were identified by the mediator following her work in the Community.

The long-term engagement of the outreach worker is likely to have enabled the development of a trusting relationship, through a demonstration of benevolence, integrity and reliability. Over time, this formed a favourable context for the social support strategies offered by the intervention, leading to a change of attitude towards, and awareness about, TB symptoms and its treatment. Chiriac thus offers a third example of interventions, which, through the use of trusted Community members delivering a range of informational or instrumental support, trigger cognitive engagement with topics that are culturally sensitive. The CMO configuration for Chiriac203 is represented in Figure 26 .

FIGURE 26.

Context–Mechanism–Outcome configuration for Chiriac 2007. 203

Health Service Executive 2007128

This report describes an intervention associated with Pavee Point, promoting oral health for Travellers in Ireland. A needs assessment and consultation with Traveller Community members was undertaken to elicit their specific dental health needs and the results were used to inform the development of the programme. The intervention focus was, therefore, negotiated and relevant. The outreach workers were Traveller Community members. They had completed a 4-year training programme as part of the Primary Health Care Project and undertook the needs assessment questionnaire. The resulting intervention consisted of two strands. The first trained the outreach workers further in dental health entitlements and available services, oral hygiene, fluoride and its uses, diet and label interpretation, smoking and oral health, trauma to teeth, and fear. This was in the hope that they would then disseminate this knowledge through their Community networks. Five related presentations were also given to the wider Community. Given their previous work as part of the Primary Health Care Project, it is likely that the outreach workers had an established relationship of trust with their target group. This strand of the project was evaluated through pre and post questionnaires.

The second strand was a clinical audit, with all Traveller children under 16 years of age called for a dental assessment and, with consent, added to a register of children entitled to free dental care within the county. These children were then allocated to their nearest dental clinic, which called them in for dental examination and treatment or referral where required. In addition, all dental staff in the area attended a cultural awareness day outlining the need for the programme and providing education on Traveller culture. Procedures were developed in conjunction with the outreach workers in order to ensure that the services were culturally appropriate. This strand was evaluated through questions in the post questionnaire.

Limitations in the evaluation design suggest that findings should be interpreted with care, as results are self-reported. However, the first strand of the programme is reported to have resulted in some improvements in oral hygiene behaviours. The adults questionnaire results showed a 5% increase in respondents reporting brushing their teeth twice a day and a 10% reduction in the use of abrasive toothpastes. Improvements in dietary behaviour are also reported, including a decrease of 15% in the percentage of respondents reporting taking sugar in their tea and a 12% decrease in respondents reporting smoking. A 10% decrease was found in adults reporting feeling nervous when attending the dentist. The mothers’ questionnaire also reported improvements in oral hygiene post intervention, including a 13% increase in use of fluoridated toothpaste among mothers and a 10% increase in the number of mothers who reported their children brushing their teeth twice a day. It also indicated an increase of 17% of respondents reporting that their children were not nervous about attending the dentist. A 31% increase was found in the percentage of mothers reportedly adding fruit to their children’s lunchboxes post intervention, along with a 9% reduction in the use of diluted juice in babies’ bottles. However, the second strand of the programme was less successful, with poor adherence to the service delivery procedures and data collection by dental services.

Although the validity of self-reported outcomes in a context where social desirability is likely to impact on responses has to be interpreted with caution, some learning can nevertheless be drawn from this study. Indeed, informational support alone as a mechanism would have been very unlikely to lead to engagement if the context had been less favourable. The combination of a high trust status and a negotiation phase (meaning that the need targeted by the intervention was also felt and expressed by the Community) may have provided a sufficiently strong basis for people to act on the information provided (theory 6). This is a counter example of theory 2, in that if the only programme strategy is the provision of information, then negotiation may be needed as well as high trust. Cognitive engagement seems to have been activated. The putative CMO configuration for Health Service Executive128 is represented in Figure 27 . Because of the poor design of the study, we can only hypothesise that, were the reported outcome a reality, these mechanisms might have explained them. It has utility here, because it comes to complement Kelly et al. 133 and Leeds GATE192 in explaining how behavioural change may be achieved. The following study (Rowley 2000)210 was sought in order to find somewhat more robust evidence that in a trusting context whereby the focus of the intervention responds to a need identified by the Community, social support resources may be sufficient to trigger behaviour change (through cognitive engagement).

FIGURE 27.

Context–Mechanism–Outcome configuration for Health Service Executive 2007. 128

Rowley 2000210

This study took place in the Looma Arboriginal Community in north-west Australia, which was originally built as accommodation for aboriginal stockmen and their families in 1973 (www.loomastore.com.au/community.php). It has an approximate indigenous population of up to 500 people, featuring large, inter-related, extended families who have a cultural bond to that area. Culture and religion are said to link the people, the land and nature through ancestral beings, the pre-existence and reincarnation of spirits, totemism, mythology and ritual. They have a community management team, which in collaboration with the Community council, delivers infrastructure, essential services, employment and training to Community members. They share with Traveller Communities a long history of segregation and assimilation and a strong sense of cultural identity. They are, however, not mobile and are much smaller in number with, it seems, a sense of social capital that can perhaps be best compared with the one described in Pavee Point.

Indeed, the initiative was initiated by the Community itself, who were concerned about high morbidity and mortality from diabetes; the topic is, therefore, highly relevant. Initially, a diabetes nurse educator was employed ‘to assist Looma Community members in the design and implementation of appropriate and potentially sustainable physical activity and dietary modifications’ (p. 137),210 and then Aboriginal health workers were employed and became responsible for running the programme on a day-to-day basis. Therefore, it is reasonable to assume that outreach workers are known (building on close social ties, given the small size of the Community) and trusted members of Looma, although little detail is provided about them.

The intervention was initially implemented in those considered at high risk, for example people who were over-weight or had previously been diagnosed with diabetes, before being implemented with the wider Community. It featured a range of negotiated strategies such as formal and informal education sessions; cooking classes and store tours to help people to identify healthy food choices; physical activity groups such as the organisation of regular hunting trips, two to three basketball or football sport sessions per week and regular walking groups; and weekly body weight and blood glucose checks for those who requested them. When the intervention was implemented in the wider Community, a strong emphasis was placed on the ‘dissemination of messages about diet and physical activity to family members by those persons taking part in the high-risk intervention program’ (p. 137). 210 There is, therefore, an explicit aim to build on trusting strong social ties and activate levers for behaviour change.

This was alongside the invitation of all Community members to the intervention activities implemented initially in order to ‘initiate normative change and enabling conditions’ (p. 137). 210 This included facilitating access to resources needed for changing diet and physical activity (instrumental support). For example, a Community member was appointed to manage the Community store with a mandate to increase sales of fruit and vegetables and reduce the sales of high-fat and high-sugar items.

The Looma Healthy Lifestyle program was associated with sustained, if modest, improvements in biochemical and behavioural risk factors for diabetes and cardiovascular disease, even if it failed to achieve long-term weight loss. There was, however, a marked and sustained increase in the proportion of older Community members reporting regular physical activity and attempts to reduce their intake of fat and sugar. Prior to intervention, few persons reported attempting dietary strategies to reduce their intake of sugar and/or fat. At the 2-year follow-up, there were significantly fewer persons reporting no attempts to lower their intake of fat and/or sugar (χ² = 42.0, p < 0.001) and this trend was still apparent at 4 years (χ² = 17.1, p < 0.001). Before intervention, more than 60% of participants reported undertaking no form of regular physical activity. This proportion was significantly lower at 2 years (χ² = 4.0, p = 0.046) and 4 years (χ² = 8.1, p = 0.004) compared with baseline. Several family groups also began regular walking independently of the programme, suggesting evidence of cognitive engagement with the idea of healthy eating and physical activity.

The authors attribute the sustainability of impact to the role of Community members in the programme. This study therefore offers the opportunity to verify the correlate of theory 1, in that using strong family ties was an effective way to disseminate a health message. Similar to the Health Service Executive study,128 instrumental support on its own would have been unlikely to produce significant changes, but in conjunction with social influence, it is likely to have contributed to the results. In terms of causal chain, it is likely that social influence opportunities would have been more active within families (as exemplified by family groups undertaking physical activity outside the programme), whereas instrumental support (such as that provided by the Community store) is more likely to have had a lower level of impact (i.e. in itself it would not have been sufficient to change behaviour) but reached a wider group of people. Although results are mostly self-reported in a context where social desirability is likely to influence people, the longitudinality of the study is not matched in the Traveller Community literature, and seems to indicate change. The CMO configuration for Rowley210 is represented in Figure 28 .

FIGURE 28.

Context–mechanism–outcome configuration for Rowley 2000. 210

Pavee Point124 ^, 157 ^, 211

Pavee Point is a voluntary organisation dedicated to promoting the rights of Irish Travellers. It comprises members from both Traveller and settled communities and has reported and published aspects of its work since its establishment in the early 1980s. Therefore, the publications discussed below are describing not discrete research projects, but rather a multitude of small-scale interventions that amount to a programme of work. This is quite unique in the Traveller literature and offers insight into the place of voluntary organisations in operationalising the bridging function of outreach. This project features a high level of trust between the outreach workers and the Community. One of the workers reported: ‘When we were starting off, it was a bit overwhelming, we had a big fear of not being accepted. We were very nervous but we needn’t have worried. They accepted us because we were one of their own and we gave them feedback’ (p. 13). Similarly to Kelly et al. ,133 then, this intervention features an explicit effort to build on close social ties, through the use of (in this case self-selected) indexes.

Interventions included facilitating access to dental health services (e.g. two Traveller-specific evening dental clinics were opened and block bookings were organised), thus offering a range of instrumental support and testing theory 4 – the fact that negotiation tends to lead to a demand for instrumental support, which proved successful as the attendance at a dental clinic rose from 0% to 80%.

Traveller families are informed by CHWs of the date of the [specialist audiology] clinic and the benefits of attending with their children. Where necessary, transport is organised. The audiology service continues to be well subscribed . . . many parents book their own appointments and attend the clinic independently.

McCabe and Keyes 2005,157 p. 25

This, thus, denotes a behaviour change vis-à-vis accessing a service, and tests theory 6.

Overall, this aspect of Pavee Point offers evidence of change happening as a result of negotiations to set up health priorities and engineering a range of corresponding participation opportunities. The fact that the outreach workers had close social ties with the Community, but still negotiated the focus of the intervention, fits into the philosophy of Pavee Point of promoting long-term engagement. This does not necessarily, then, contradict theory 2, but capitalises on participation potential (as a result of high trust) to ensure long-term social capital development (theory 7).

A large proportion of the Pavee Point reporting concerns the voluntary organisation’s developing relationship with 16 key Traveller women, who were living in the area targeted in Ireland and employed to work on the project. This further aspect of Pavee Point and its potential to test our theories of outreach is explored below. A key difference from the Kelly et al. 133 study is the longitudinality of the intervention, as it spans 10 years of continuous engagement between the organisation and the outreach workers. This intervention tests theory 7, as longitudinality of engagement leads to the development of trusting relationships, which can foster successive engagement cycles. This has been corroborated by our expert hearings (EH5).

There was a demand for informational support from the outreach workers, and the intervention provided an array of training opportunities in response to their suggestions. The outreach workers ended up acting as Traveller representatives on a range of regional and national committees – demonstrating improved self-efficacy and emotional engagement with the idea of improving the lives of Travellers more broadly. They attended training opportunities and asked for more, also demonstrating engagement in learning. Exposure visits were organised to introduce them to a variety of health services such as the local health centre. Here, Pavee Point operationalised a very clear bridging function of outreach, by enabling the outreach workers to familiarise themselves with statutory health services so that this familiarisation could ‘trickle’ into the Community. ‘One of the best things is that this course happened for Travellers . . . because of Pavee Point we have learned to sit down and talk with the settled people’ (p. 14). 211

The outreach workers were trained to develop, pilot and undertake a survey of Traveller needs in the targeted sites. Survey results were fed back to the Community so that a prioritisation of needs could be drawn up and implemented by the outreach workers, with organisational support, in the form of a formalised collaboration between Pavee Point and the local Health Board. ‘This . . . facilitated the participation of the Community in defining needs, setting priorities and outlining interventions . . . [they] felt this empowered them as they now felt they had control over what was happening to them, as they were involved in an ongoing process which they could feed into’ (p. 18). 157 This level of partnership and negotiation triggered the emotional engagement necessary for the outreach workers to invest themselves in the betterment of their Community as a whole in the long term. The CMO configuration for Pavee Point124 is represented in Figure 29 .

FIGURE 29.

Context–Mechanism–Outcome configuration for Pavee Point. 124,157,211

Friends, Families and Travellers165

Friends, Families and Travellers is a charitable organisation promoting equality for Traveller Communities, seeking to end discrimination against them and protect the rights of these groups to live a nomadic lifestyle. This publication describes the Friends, Families and Travellers Sussex Travellers Health Project. Like those models of outreach described by Pavee Point and Leeds GATE, this project refers to a sustained programme of work encompassing many different initiatives to improve Traveller health. It is reported to have taken around 9 years to establish the project and build the trust and confidence of Community members to engage with services. While Traveller Community members did not attend arranged sessions at first, through demonstrating commitment and attending weekly at a set date and time the outreach workers began to see participants attending. Initial attempts to discuss health were rejected by Traveller Community members until trust had been developed through participation in broader activities (theory 1).

We asked about health needs and were told there weren’t any. So we started working with some safer subjects. Women worked on creating individual panels for banners, expressing their own views about what health meant to them.

Atterbury and Bruton 2011,165 p. 4

Following engagement in activities such as collecting traditional recipes to publish a recipe book and cooking and eating together, Traveller women felt comfortable discussing health issues such as domestic and mental health problems and requested further information on drug issues, baby massage and reflexology. Thus, while Traveller Communities clearly regarded outreach workers with suspicion initially, negotiating the focus of outreach and responding to identified issues as they arose led to positive cycles of engagement (validating theory 7). Given the opportunistic approach taken, the outreach project responded to a diverse range of needs and offered a number of forms of social support. A key aim of the outreach project was to facilitate access to existing services, thereby offering instrumental support. The project also provided informational support around available services, and worked with Community members to develop understandable and culturally appropriate ‘food and mood’ booklets, well-being CDs and well-being information flyers, as well as a ‘Know Your Rights and Responsibilities within the NHS’ flyer. This was reported to result in improved knowledge of and access to available health services. The project also involved Traveller Community members in conducting cultural awareness sessions with service providers in order to improve the experiences with services. The opportunity for direct engagement with Community members was felt to have contributed to challenging myths and prejudices about Travellers and to have broken down barriers between service providers and the Community.

In addition to offering informational and instrumental support, the project aimed to empower Community members to develop their own solutions to health issues and provided opportunities for social engagement. The CMO configuration is thus the same as for Pavee Point. Traveller Community women were supported to share positive representations of their culture at the launch of the recipe book, to which significant members of the local Community were invited to attend, and to take a representative role in communicating their needs to commissioners and policy makers. This therefore provides an example of the achievement of emotional engagement leading to the development of social capital in support of theory 7. The CMO configuration for Friends, Families and Travellers is represented in Figure 30 .

FIGURE 30.

Context–Mechanism–Outcome configuration for Friends, Families and Travellers. 165

Reflection on the process

The size of the research team is an issue worthy of comment. In contrast to many reported realist syntheses, this research was undertaken by a very small core research team, supplemented by expert hearings. This impacted on our ability to debate issues around the generative causation of certain mechanisms, or indeed whether or not constructs should be classified as, for example, contexts or mechanisms. These are acknowledged difficulties in realist syntheses,216 which were compounded by our small team size. The correlate to this, however, was our ability to communicate very effectively throughout the project and ensure the timely inclusion of a range of perspectives as the analysis developed. The core team conferred during weekly half-day meetings, ensuring consistency of interpretations and recording the outcomes in a decision trail file on a shared computer drive, which could be consulted and commented on by the wider team, thereby enhancing the validity of our analysis. Pawson85 describes the necessity of engaging with theory at various levels during a realist review. This is so that candidate theories with explanatory potential can be found, applied, discounted or modified as necessary, until a suitable explanation is found for why certain outcomes are reported. With our heterogeneous data set, the tendency was to go higher in theorisation, in order to reach maximum explanatory potential. Retaining the balance between explanatory potential and what could reasonably be inferred from the studies was a challenge, and resulted in multiple draft iterations of the final report. For example, we initially framed the results section around Berkman and Glass’183 causal model between social networks and health. This, however, proved too far removed from the pragmatics described in our studies and was subsequently mentioned only in this discussion.

Study selection process in a conceptually heterogeneous data set

We have described how the Traveller literature is comparatively rich in statements of cultural distinctiveness and needs, which provided us with a vast amount of contextual information. In contrast, the literature on outreach is generally undertheorised and lacks process detail and outcomes measurement. Jagosh et al. 216 describe how, for their realist review on participatory research, the process of refinement of the research question was a key step in defining study inclusion criteria. In order to increase the homogeneity of our data set, we could have undertaken a similar process of refining the parameters of the review. This could have taken the shape, for example, of focusing on outreach intervention strategies leading to behaviour change only. However, our brief was not on outreach, but specifically on outreach in Traveller Communities.

Our initial scope was thus broad and ill-defined and we considered that too early a narrowing of our criteria might have restricted our learning potential quite significantly. We countered this putting particular emphasis on expert hearings and explicitly incorporating them into both our analysis and the report. This enabled the focus on trust and negotiation to emerge over time and in response to our immersion in the whole breadth of the evidence base available. The broad literature base also meant that, as mentioned above, we needed to engage in sufficient theorisation to accommodate the breadth of the evidence base while still retaining explanatory potential. This fits into the kind of methodological customisation recently described in the literature. 216

Selecting theories

Realist reviews are driven by theories, in that theory identification is meant to occur early in the process and to guide the study selection and data extraction protocol so that the adequate evidence can be captured. 85 We did not begin the study with a ‘ready made’ middle-range theory, but rather with our knowledge of the dimensions of peer and lay interventions, from which the initial (‘to whom’, ‘by whom’, ‘how’, ‘what for’) framework emerged. Neufeld’s190 cycle of engagement provided an overarching theoretical framework, which could be considered a middle-range theory; it was not so theoretical that it could not be tested with the evidence at hand, and not so pragmatic that it explained only single occurrences. We therefore tested the three phases of negotiation, participation and evaluation with our studies. The first emerged as key, but only in conjunction with trust, and these became the key contextual ingredients – therefore marking a departure from Traveller-focused literature to maximise translation potential to other groups. Participation was described in a great majority of studies, but did not explain the reasoning which led people to engage to different degrees – this was therefore combined with Fredricks et al. ’s200 model, explaining the kind of engagement decision-making that participants may be going through. Therefore, no single existing theoretical framework could explain the breadth of the literature and we combined three models of engagement and trust in order to obtain maximum explanatory potential.

Linked to this is the existence of ‘layers of mechanisms’ in our analysis. For example, in Fitzpatrick,64 our CMO analysis shows that the underlying mechanism leading to participation was behavioural engagement, because participants made the conscious decision to take part in the intervention and report its high acceptability. However, our understanding of the context leads us to the conclusion that this decision was driven by a protectionist attitude rather than either a trusting relationship with the outreach worker or an intervention that responds to an expressed need. Thus, we could identify different layers, which, combined, could all contribute to explaining reported outcomes. While we initially used Neufeld’s cycle of engagement as an outreach process mechanism, within which cultural and social influencers operated to impact on individual decision-making, engagement was also a key mechanism to making outreach ‘work’. Articulating how these different mechanisms could operate simultaneously, but at various levels (the individual, the group, the intervention, etc.), was a key challenge in formulating our findings.