2.1.1 The Inequalities in Health Fund
The ‘coronary heart disease: redressing the balance’ project was funded by the Welsh Assembly Government’s Inequalities in Health Fund. The fund was established to stimulate and support new local action to address inequalities in health and their contributing factors. The fund has supported 67 projects across Wales.
The aim of the Inequality in Health Fund projects is to contribute to the
implementation of the National Assembly’s National Service Framework entitled Tackling CHD in Wales: Implementing Through Evidence' 2001. This Plan seeks to:
• Empower patients to take responsibility;
• Enable health professionals to provide high quality services, which have the capacity to develop and keep pace with new evidence;
• Ensure health authorities, local health alliances, local health groups and NHS trusts deliver in partnership;
• Decrease the number o f people at risk of developing coronary heart disease and improve outcomes for people with the disease.
In recent years, inequalities in health have been recognised as a priority area for policy in Wales. Several recent documents have impacted on the current policy.
‘Better Health Better Wales’ (1998) provided a framework for national and local action. One of the key objectives is ‘bringing the level of those with the poorest health up to the level of those with the best health’. ‘Better Wales /Plan for Wales 2001’ was the National Assembly’s first strategic plan setting out three main themes: sustainable development, tackling social disadvantage, and providing equal opportunities. It set out a commitment to increase awareness of all
languages and cultural issues in service delivery, to reduce inequalities in health and to increase life expectancy especially in the most deprived communities.
‘Health in Wales’, the Chief Medical Officer’s report 2001/2002, although acknowledging the moves made to date to redress inequalities in health, also suggests that much more needs to be done. The Welsh Assembly Government’s Inequality in Health fund is attempting to contribute to addressing these
inequalities. The project ‘Coronary Heart Disease and Gypsies and Travellers:
Redressing the balance’ is one of the 67 projects funded by the Inequality in Health Fund and is the subject of this evaluation.
2.1.2 Development of the project
The development and bid for funding for the ‘Coronary Heart Disease and Gypsies and Travellers: Redressing the Balance project was a result of a health needs assessment carried out by two Health Visitors in both Wrexham and Flintshire (Roberts 2001). This assessment highlighted the poor health suffered by the Gypsies and Travellers living in the area.
One of the Health Visitors who conducted the health needs assessment, was also a member of a Multi-Agency Traveller’s Forum (MAF) in Wrexham, which was attempting to address the health and social issues of Gypsies and Travellers in the local area. MAF, at the time, consisted of workers from various agencies who had a working relationship with Gypsies and Travellers in the area. This group included representation from Social Services, Health (North East Wales Trust), Education (Traveller education), Housing (Wrexham Borough Council), Women’s Aid, Sure Start Initiative, Youth Offending Team, Police (domestic abuse) and University of Wales College of Medicine (now Cardiff University).
MAF were informed of the call for bids from the inequality in health fund by the Health Visitor who had developed the initial design of the community health initiative. The Health Visitor was assisted in developing the project bid by a
Professor in the department of General Practice at the University of Wales, College of Medicine (now Cardiff University), who is also a GP with a keen interest in
Gypsy and Traveller welfare. The project was designed to meet the perceived
set by the Inequality in Health Fund. That focus was to address the inequalities in health found in Wales in the form of the high incidence of coronary heart disease.
MAF supported the successful bid for funding of this project, and were named as the lead organisation on the project agreement, however, they were unable to be fund holders as they were not an agency as such, and did not have the
infrastructure to support holding funds and employing staff. As the project was
;
seen as primarily a ‘health’ project and Principal Investigator of the project was a Health Visitor, the then Local Area Health Authority (later to become the Local Health Board) was designated as the fund holder of the project (see figure 2.1 below). A detailed description of MAF and its involvement in the project over time can be found in Chapter 5, sections 5.2.3 and 5.3.6.
Funding relationships within the project
Local Health Board (fund holders)
Cardiff University (research & evaluation) Community Health Initiative
(service provision)
Welsh Assembly Government (funding body)
Figure 2.1
The Coronary Heart Disease and Gypsies and Travellers: Redressing the balance project was given funding initially for three years. The initial funding period was between April 2002 and April 2005 (later extended to September 2005). This became known as ‘phase one’ as further extended funding periods became
available, first, with an 18 months extension and then a further 12 months, bringing the current funding period to April 2008.
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The Coronary Heart Disease and Gypsies and Travellers: redressing the balance project consists of two main elements, a service element (the community health initiative) and a research element (the evaluation). In the latter case, a full-time researcher provided a study of Gypsies’ and Travellers’ culture, lifestyle, health beliefs, and experiences of healthcare, as well as a study of the cardiovascular and mental health status of Gypsies and Travellers. Both of these studies contributed to the overall evaluation of the community health initiative. A full description of the evaluation studies can be found in Chapter 3, sections 3.3 & 3.4.
2.1.3 Aims and objectives of the project
The main aim of this Inequality in Health Funded project was to improve access to health care services, specifically to coronary heart disease services for the Gypsy and Traveller communities. The objectives were as follows:
• To describe the current cardiovascular health of the Gypsy and Traveller communities compared with a matched control group and population norms.
• To better understand the cultural determinants of the cardiovascular health status of Gypsies and Travellers.
• To develop methods of impacting upon the cardiovascular health status of Gypsies and Travellers that are acceptable, enhance informed choice, and hold potential for future improvement in health status.
Following implementation, the description of the mental health status of the Gypsies and Travellers in the study was included in the objectives of the project (see Chapter 5, section 5.3.3).
2.1.4 Details of the community based initiative
One of the main aims of this Inequality in Health Fund project was to increase access to appropriate health care services to the Gypsy and Traveller populations by providing an outreach service, which consisted of a full-time Project Health Worker and a mobile health unit.
A specially adapted mobile health unit ‘health bus’ was driven onto a Gypsy and
Project Health Worker also visited housed Gypsies and Travellers and those on private land either with the ‘health bus’ or by car (depending on appropriateness and access). The Project Health Worker worked in the field of prevention and health promotion, also provided a triage facility, worked as an advocate for this community, and collected coronary and mental health data for the project.
2.2 Description of the evaluation
Evaluation is a key feature of this project. Of the 67 projects supported by the Inequality in Health Fund, this is the only project to have evaluation built into the main design. Evaluations are conducted primarily to provide decision-makers with informed options for enhancing service delivery (Wholey 1994). The evaluation study of the community health initiative was intended for two main audiences, the Welsh Assembly Government’s Inequality in Health Fund and also, potential supporters of the service at local level, post project funding. Although there was a system of reporting progress to the Inequality in Health Fund, both in quarterly reports and annual reports, this did not enable the in-depth knowledge that the evaluation study provided. By providing a rich description of the service, its
strengths and weaknesses, a template is provided of a proven service to be rolled out on a national level. It also provides the evidence that would be required to inform the decision at local level whether to adopt the service into mainstream health services.
This evaluation contains both qualitative and quantitative studies designed to provide results that give triangulating information. The scale of this evaluation and the nature of the project and its service users meant that a randomised controlled trial was not an appropriate method of evaluation in this instance. However, the evidence that was available from the evaluation studies may be strengthened by similar findings from companion studies using different methods.
The two main studies were qualitative explorations of both Gypsy/Travellers’
culture, lifestyle and health beliefs and an in depth study of the Inequality in health fund community health initiative. An ethnographic approach was used, including
the use of participant observations over a 2J4 year period and a series of interviews with both Gypsies and Travellers and service providers.
Secondly, as part of the evaluation of the initiative and to provide complementary information, a detailed quantitative assessment of the coronary health status and mental health status of Gypsy/Travellers in and around Wrexham was undertaken.
This data was compared to general population data for Wales, England and the UK where applicable.
The coronary and mental health status study provides insight into the challenges and focus of the community health initiative. Whereas, the study of
Gypsy/Travellers’ culture, lifestyle, health beliefs and health care experiences provides insight into why Gypsies and Travellers adopt the health behaviours they do and also how cultural influences and past experiences have affected how, and to what extent the community health initiative works.
2.2.1 Culture, lifestyle, health beliefs and experiences of health care study This study was an in-depth qualitative study using participant observation and in- depth semi-structured interviews (both described in full in chapter 3, sections 3.3.1 and 3.3.2) with Gypsies and Travellers to explore their culture, lifestyle,
experiences of healthcare and health beliefs. The study provides a knowledge base of those aspects of Gypsy and Traveller culture, lifestyle, experiences and beliefs that impact on Gypsy and Traveller health and well being and also impact on how they engage with mainstream services and the new community initiative. It is hoped that the results of this study may also be used as a resource to inform health professionals, providing them with an increased depth of understanding of Gypsies’ and Travellers’ culture in relation to health care provision.
2.2.2 Study of Coronary Heart Disease and Mental Health status
A quantitative detailed assessment of the coronary heart disease (CHD) health
Gypsies’ and Travellers’ CHD risk factors, lifestyle and health status to that of the general population. As this community’s health status has been subjected to little research to date, this descriptive study was necessary to identify the health needs of this community. This information has been used to inform the initiative and is an integral part of the evaluation. It feeds into the overall evaluation of the initiative alongside the cultural findings providing an insight into the levels of morbidity and high health risk behaviours engaged in by Gypsies and Travellers.
2.2.3 Process evaluation of the community initiative
A qualitative study of the process of the community initiative was undertaken, using both participant observation and in-depth semi-structured interviews with both the Gypsy and Traveller communities involved with the initiative and professionals who were connected to the initiative, either as service providers or as those who had contact with the initiative in their professional roles. This enabled the exploration of the perspectives of both the service providers and service users. Descriptions of participants are provided, and the process involved in the initiative, outcomes and the continuation of the initiative are explored in depth, providing both service users’
and providers’ perspectives.
The results of these three studies is brought together, where their combination and interaction has provided an overall understanding of the initiative and enabled an overall evaluation of the initiative.
2.3 Unique contribution
There have been no in-depth quantitative studies describing Gypsies and Travellers’ coronary and mental health status in Wales to date. There has also been no intervention in Wales, which has attempted to increase access to health care services by providing a dedicated Health Worker and taking a mobile unit onto a Gypsy/Traveller site. This has been a unique opportunity to evaluate a multi
disciplinary project that attempts to assess, understand, and potentially improve Gypsies’ and Travellers’ health status, in particular coronary and mental health status.
Furthermore, very few in-depth studies have been carried out that focus on the culture, lifestyle, health beliefs and experiences of healthcare of Gypsies and
Travellers. This study provides a deeper understanding of the cultural determinants of health of this group and provides an exploration of how these factors impact on their engagement with health care services in general and the community health initiative in particular. It is important to bring cultural differences to the attention of the medical profession to increase understanding and therefore tolerance of this disadvantaged and hard to reach group of people.
2.4 Research questions
There are two main objectives of this PhD study. The first is to evaluate a
community initiative designed to improve the quality of health care of Gypsies and Travellers Wrexham. The second is to understand the cultural determinants of the health status of this group by gaining insight into their culture, lifestyle and health beliefs. Whilst the community initiative to improve the quality of health care is posited on and driven by an outsider understanding of the community and its health needs, the second is posited on achieving, through an ethnographic approach, an insider, i.e. Gypsy/Traveller, perception of health, illness and health care (see Chapter 3 section 3.1 for a discussion of insider/outsider perspectives in research).
These two objectives will be brought together in a third, which is their combination and interaction out of which an overall understanding or synthesis is achieved.
Insight and motivation, through this approach, is revealed and the comprehension, which enables a judgement of the initiative to be made, will be obtained.
From the objectives described, the following research questions are posited in this thesis:
Primary research questions:
• Does placing a mobile health unit on a Gypsy/Traveller’s site increase
appropriateness, accessibility and patient centredness of UK style health care services?
• How are the culture, health beliefs, lifestyle and experiences of health care of the Gypsy and Traveller communities relevant to this initiative?
Secondary research questions:
• How does having access to a health worker and therefore health promotion impact on Gypsies’ and Travellers’ general views of health and coronary heart disease in particular?
• How does this three-year community project impact on both the Gypsies and Travellers and the other key players’ views of each other?
• What lessons are to be learnt from multidisciplinary initiatives, what are their strengths and weaknesses?
• What is the detailed coronary health status, and determinants of coronary risk of Gypsies and Travellers in Wrexham?
• What is the mental health status of the Gypsies and Travellers in Wrexham?