A participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England

I attended a Catholic primary school until 11 years of age, transferring to secondary education at a Catholic convent school. At 17, I left school with a general certificate in education and commenced work at a Guyanese Government accounts department. The tense political situation in Guyana prompted my parents to suggest that I migrate to another country and join the exodus of young people who were leaving to go abroad to either study or take up permanent residence. Changing immigration laws in the UK, Canada and America meant it was becoming difficult to obtain visas for those countries. In the 1970s a shortage of nurses in the UK meant I was welcomed as a migrant if I trained as a nurse. I thus accepted a nurse training position in Surrey, UK.

My interest in the topic of diabetes stemmed from those members of my family living in Guyana: my sister, niece and sister-in-law, who had been diagnosed with this chronic condition several years ago. As I return to Guyana frequently, I was intrigued by their cavalier attitude towards managing their diabetes. I also queried the extent to which genetic predisposition played a part, as I had read about an increase in Type 2 Diabetes amongst Guyanese living in Guyana (Ramsammy 2011).

In the UK approximately three million people have now been diagnosed with Type 2 Diabetes (Diabetes UK, 2012). This chronic condition has become a national topic. In addition, a report by the Department of Health (DH) (2007b) suggests that there had been a significant increase in Type 2 Diabetes amongst BME communities. Guyanese people are included in these communities and are often grouped with African Caribbean people in the UK (Scott 2001; Brown et al. 2007) as they share colonial roots. Gathering data on the number of Guyanese people living in the UK has been problematic because Guyanese people comprise six races: African, Indian, Chinese, Portuguese, Amerindian and Mixed. However, UK statistics tend to categorise all people from the Caribbean as African Caribbean. Health information specifically about Guyanese people living in the UK is scarce.

One of my PhD supervisors, Professor Tina Koch from Australia, was in the UK on a Leverhulme Professorship. In late 2009 we met at a UK conference and started talking about my evolving research question. I was immediately drawn to the type of collaborative inquiry she described. I expressed a desire to give voice to Guyanese people, as I believed they had not been heard. I found that Professor Koch had a background in participatory action research (PAR) and had co-published a research text with Kralik (Koch & Kralik 2006). I later read about Koch and Kralik’s chronic illness research programme and noted that over 30 PAR studies had been completed and published by them. Their PAR approach was appealing, as not only would it provide a voice to those living with a chronic condition through storytelling, it had the potential to be sensitive to specific cultural practices. I continued to read their body of work and discovered that a researcher spent time in the field to gain an understanding of the cultural beliefs and practices. Spending time in the field was an attractive proposition, as I wanted to build relationships with Guyanese people living in the UK, hear about their social and cultural practices in terms of their health and find out ways to improve their situation though action initiated by the participants. I understood that by using a PAR methodology I could research alongside older Guyanese women. I will explain my gender choice later.

I had accumulated experiences that served to prepare me for this inquiry. I had lived in the UK as a Guyanese migrant and worked in the field of community mental health. I am an academic with a specialist interest in feminism and BME communities.

In the effort to explain the relevance of these experiences I will begin with my work as a community psychiatric nurse. In that capacity, I had adopted a range of interpersonal and therapeutic interventions that had elements of Egan’s (2007) helping relationship. Many clients shared their life stories with me; I listened, stayed connected and gave them time and space to talk. Listening skills were vitally important in those therapeutic encounters but the application of other skills was part of my practice, like enabling and encouraging individuals in order to empower them to make their own decisions and to take the necessary actions to manage their mental health problems. I had therefore gained some insight into the skills that would be required of me when researching alongside participants in this inquiry.

Secondly, I had completed a Women’s Studies Master’s degree in the 1990s using the theoretical connection with liberal feminism in the tradition of Olesen (2005). I recognised that other feminist theorists such as Oakley (1981; 1993) and Haraway (1991) had influenced my position. These feminist theorists assisted me to think about power relations, to see the importance of listening to the female voice, demonstrating the importance of identity and the need to respect the individual’s life experience in managing a chronic condition.

Thirdly, I was influenced by the work of hooks (1984), a black radical feminist, who introduced me to a type of feminism that privileged the voice of a black woman. It was a visionary piece of work that captured the political scene of that era but is still relevant in today’s society. My Master’s research study was with black women and explored the reasons why they consumed alcohol. It was guided by feminist principles; it emphasised being heard and giving a voice to participants.

I believed I could build on these experiences when researching alongside women from a BME community, who are a hard to reach group. I also shared the same cultural characteristics in being a black migrant woman. Based on my background experiences, I wanted to continue this PhD inquiry with Guyanese women rather than men. The participants were more likely to be older women because Type 2 Diabetes normally occurs in an older age group.

Professor Helen Allan, my other supervisor, has a wide experience in feminist research approaches. I quickly realised that there is a strong link between the principles guiding both of my supervisors’ work. These principles complement my participative worldview focusing on social justice, social equity and freedom of speech. I would bring to the inquiry a strong awareness of human rights that encouraged a democratic and collaborative approach to research. It would be an approach that would equitably involve all persons (facilitators/researchers and participants) in the research process.

As discussed, there is a connection between the principles guiding feminist and PAR approaches that include the building of partnerships and the potential to create new forms of knowledge in women’s health (Ponic et al. 2010). The principles guiding this inquiry will be discussed in more detail in Chapter 4 and I will further explain why this connection contributed to my decision to research alongside Guyanese women living with Type 2 Diabetes.


Why this inquiry is important

This inquiry gives Guyanese women a voice and provides insights into the way they manage their condition. I anticipate that listening to their stories will allow them to provide an overview of their life since migration to the UK and that it might reveal cultural understandings about living with and self-managing Type 2 Diabetes. At the same time, I recognise that using PAR requires not just listening skills but also skills in building sustainable relationships. In this type of collaborative research it is expected that the researcher will be a co-participant in the process and, like the participants of the inquiry, will bring a particular set of skills and knowledge to the group. The idea is that together ‘we’ will explore ways in which the women would like to improve their lives through action and reform (Koch & Kralik 2006).

This inquiry has the potential to deliver some understanding of the issues beyond ill health facing this BME group of women. As a Guyanese woman I expect we will share our experiences about migration and the impact of being the ‘other’ living in the UK: I refer to being challenged by racism and dealing with discrimination. Although I travel to Guyana regularly and keep in touch with my family, on a personal level, I had lost touch with my Guyanese connections in the UK. This inquiry provided an opportunity to reconnect with them in an objective manner.

I want this inquiry to make a difference. Koch and Kralik’s (2006) work shows that the PAR process often initiates change and reform, both at individual and community levels. Doing a research project with the Guyanese women appears to be a good way to bring about reform.

Harriss and Salway (2008) identify the need to gather more information on BME groups’ experiences of long-term ill health as they are marginalised from support services. Guyanese women living in the UK have not had a voice to talk about their lives as migrants or living with a chronic condition. This inquiry provides them with such a voice and enables beneficial agency because the PAR process creates a platform on which participants can express themselves with the potential to lead to self-initiated action to improve their situation.

Research question and objectives

My research question is: “How do Guyanese women living in the UK learn to live with Type 2 Diabetes?”

The aim of the study is to explore with Guyanese women in the UK their experience of living with Type 2 Diabetes.

The objectives of the study are to:

Give voice to the stories of Guyanese women

Explore their experiences as Guyanese women living with Type 2 Diabetes

Facilitate a participatory action research (PAR) group and in collaboration with participating women, explore self-care Type 2 Diabetes trajectories

Consider ways ‘we’ (women and researcher) can initiate health care reform at an individual level and/or within the Guyanese community living in the UK.

I selected Koch and Kralik’s (2006) PAR as the most suitable tool for answering my research question because it involves both listening to people living with chronic conditions and stimulating action toward reform. I share with these researchers a participatory worldview that resonates with my principles, beliefs, interests and values. The PAR approach is appealing precisely because its storytelling and PAR group components can be used interchangeably. Cultural cohesions and differences can be explored.

I will provide reasons for this methodological choice in subsequent chapters however in summary core elements of this research process are:

It takes place in collaboration with participants

Participants determine the agenda

Participants drive the research

Participants decide on actions

Ethics approval

Ethical approval was obtained from University of Surrey in 2010 and will be discussed in more detail in Chapter 5. The next section of this introduction gives an overview of each chapter within this inquiry.

Overview of Chapters

Chapter 2 provides the context for this inquiry and locates government reports, social policy and historical and cultural documents. These are not necessarily research studies because there is a lack of empirical investigation into this area of interest. I briefly describe Guyana’s colonial past, including the political and socio- economic circumstances and the diversity of its population. Evidence is provided on the reasons why diabetes constitutes a major health problem in Guyana. The reasons why Guyanese people migrated to the UK, especially those from the middle class, are explained. Guyanese tradition and culture are discussed. I then describe the global chronic illness framework, the direction of the World Health Organisation (WHO) with respect to the provision of health care services and its influence on UK health services. Other health care delivery frameworks for long-term conditions adopted by the UK will be presented. The provision of health services for people diagnosed with diabetes is debated, including the philosophy and evaluation underpinning the adopted direction. Relevant literature from UK Government reports and Diabetes UK are discussed.

Chapter 3 presents the literature review of the pertinent research that has thus far been undertaken in this field of study. I focus on the topic of Type 2 Diabetes, providing an overview of medical research on the incidence, prevalence and risk factors of diabetes, obesity and the unhealthy diets and lifestyle changes that have an impact on an individual’s life. There is however paucity of research on/with people living with Type 2 Diabetes in BME communities in the UK or internationally.

Reviewed also are research studies that are participant driven and rely on the experiences of people living with long-term conditions for example, chronic illness conditions such as multiple sclerosis, asthma and arthritis as well as diabetes. These studies give an insight into how individuals manage long-term conditions and have given voice to their experiences. Research on various courses of self-management of illnesses, such as the Expert Patients Programme and DESMOND (Diabetes Education and Self-Management for Ongoing and Newly Diagnosed) (Cradock 2005; Fleming et al. 2008; Khunti et al. 2012) are critically reviewed. From my mental health background, I know that individuals with Type 2 Diabetes can experience psychological issues so it was important to cover those research studies as well. Alongside this literature, I assess whether psychological issues occur within BME diabetic communities. In this section on research studies I also turn to the literature on service delivery and explore the role health care practitioners can play in helping their clients. I pay particular attention to the way in which individuals from BME communities cope with long-term conditions. I review studies on health care practitioners’ work as they attempt to form partnerships with those from BME communities. Of interest to me in this inquiry are the health beliefs and practices of BME groups when managing long-term conditions. I suspected from the outset that alternative health care practices would be the choice of some participants, so I reviewed this literature in anticipation.

Chapter 4 explores the principles of this PAR inquiry. I argue for the guiding principles to be aligned with social justice, social equity, freedom of speech and human rights. I identify Reid’s (2004) principles of inclusiveness, collaboration, fostering collective action toward social change and being aware of power distribution and adhere to these throughout the inquiry. I will also pay attention to researcher reflexivity that advocates openness and transparency regarding the choices made throughout the study. Another valued aspect that is covered is community participation, which involves being responsive to participants’ needs and designing services to meet those identified needs. These principles resonate with PAR principles. I share Koch and Kralik’s (2006) participatory worldview and argue that it is important to listen to Guyanese women whose lives have been interrupted by diabetes and who, so far, have been voiceless. I argue here that collecting data through storytelling is appealing precisely because it will enable me to listen to Guyanese women’s voices. I discuss the importance of evaluation in this type of co-operative inquiry, as it provides rigour criteria and shows that the inquiry is trustworthy and believable. I also provide the rationale for selecting Koch and Kralik’s PAR methodology.

Chapter 5 gives a full description of this PAR process for visiting the Guyanese women at their homes (the research setting), gaining ethics approval, ethical and methodological considerations, recruiting participants to the inquiry, maintaining a self-reflective journal, generating data and analysing that data. I was an apprentice in the methodology and practiced one-to-one interviews and several group sessions under the guidance of both PhD supervisors. Four women were recruited for my apprenticeship. I then recruited another four Guyanese women living in the UK to take the total number of participants up to eight. Both storytelling and PAR group processes are discussed in this chapter, and the principles guiding this inquiry are reiterated.

Chapter 6 focuses on the one-to-one story telling interviews. The participants had the opportunity to tell their story in their own time within a safe environment, usually their own home. I researched alongside these eight participants from March 2010 to September 2012. During this time the women took control of their own stories and it is these eight storylines that are presented in this chapter. Using Koch and Kralik’s (2006) ‘look, think and act’ cyclical analysis framework, eight stories were analysed and constructs were identified to represent commonalities in experiences. An example of how each story has been analysed is found in the appendices.

Chapter 7 outlines what happened in the PAR group sessions and resultant actions. We held 14 PAR group sessions over a period of 18 months with six participants. Here, I talk about the cyclical process of analysis whilst facilitating the group process. Some of the common constructs were discussed collaboratively with the women and the PAR group process and actions taken by ‘us’ (researcher and the co-participants) are documented to illustrate this collaborative approach to researching alongside the participants.

Chapter 8 holds the discussion and incorporates data from the one-to-one interviews, the PAR group sessions and relevant literature. Here, I reiterate the main constructs derived from both sets of data. I explore the women’s experiences and the diabetic services provided for them, their cultural beliefs and values, and the effect these have on their long-term condition. In this chapter I present our (mine and the women’s) discussions about the way in which health care practitioners can meet the needs of ‘our’ BME community. As a researcher I reflect on how this Guyanese community learnt to maintain their Guyanese connections locally and overseas and explore these connections as forms of support. Additionally, I bring aspects of the inquiry together and present my main thesis.

Chapter 9, the conclusion chapter, provides an overview of the inquiry. I answer the research question and assess whether my aim and objectives have been achieved. I consider what can be done for the wider Guyanese community and draw together key constructs emerging from the inquiry. I evaluate the entire research process. The actions taken by the women and the overall group action are reviewed to identify what further research is needed. I argue that this study is believable and has complied with the rigour criteria. I also present the strengths and limitations of the PAR approach and consider the implications for practice for commissioners and practitioners, education and research. The key contributions made by this inquiry are also included in this chapter.

Conclusion

In conclusion, my background in nursing and education has shaped the way I see the world and interact with people. It has also provided me with a range of transferrable skills that I could then apply to this inquiry. I feel uniquely privileged to have been able to research collaboratively with this group of women in a process that is built on sharing, listening to and reconstructing stories, and enabling a previously voiceless group to be heard for the first time.

My background and experiences prepared me for undertaking this journey and provided me with the rationale for choosing Guyanese women living with Type 2 Diabetes for this inquiry. The paucity of research on the needs of this specific BME group is evident and the storytelling approach of PAR is important for drawing out underlying factors absent in official data and the wider research literature. ‘Giving voice’ to women, I argue, will provide an insight into their management of Type 2 Diabetes and may generate new knowledge about the context of Guyanese people living in the UK.

Chapter 2

Context
Map showing where Guyana is situated within South America

(Green and Emanuel 2000)

In this chapter I describe the Guyanese culture and consider the economic reasons for Guyanese migration to the UK. It is important to note that the terms migration and immigration are used interchangeably in the literature and this is reflected in this inquiry. The incidence of diabetes is discussed and the rationale behind the selection of Guyanese women rather than men for this inquiry is presented.

The final section discusses how the World Health Organisation (WHO) has influenced the direction of UK health services within the chronic illness framework. Other UK health care delivery frameworks for long-term conditions are also considered. This appears to be medically driven with scarce resources for those with long-term conditions. The development of the Expert Patient approach may seem to be a ‘Do it yourself model’ lacking the guidance, support and supervision that those living with Type 2 Diabetes require.
Guyanese women

Very little is known about Guyanese women living in the UK. They are a racially mixed group of individuals comprising East Indian, African, Portuguese, Chinese, Mixed and Amerindian heritages. This diverse group of individuals is not reflected in the UK Census (ONS) (2001; 2011) but are categorised within the African Caribbean group. The assumption is made that they may be working class and face higher rates of poverty and deprivation. Beechey (1986) agrees that women from BME communities are perceived as occupying the lower levels of class and power structures within the UK. Nandi and Platt (2010) identify in a more recent study that there are BME women who experience inequalities in terms of poverty and disadvantage but that these women have very diverse experiences which need to be explored. The intention of my inquiry is to challenge the assumption that Guyanese women and the families who migrated to the UK between the 1950s and the 1970s were from the lower socio-economic classes usually associated with migration from the Caribbean.

UK Context

Many Guyanese migrated to the UK as a result of the British Nationality Act of 1948 that extended British citizenship to all members of the Empire. However, it was not until the middle of the 1950s that migration started to assume significant proportions (White 2006). Migration intensified during the 1960s and 1970s across all racial groups and especially among those who could afford to leave Guyana. Ahmad (2005:43) refers to the “push” and “pull” factors that lead to migration. One “push” factor that may explain the exodus from Guyana is the race riots that took place between the African and Indian Guyanese during the 1960s (Trotz 2006). The “pull” factors may have been related to personal reasons, such as professional development and access to greater economic opportunities.

Most Guyanese women who migrated to Britain entered nursing (Beishon et al. 1995), teaching, secretarial work or became students (Roopnarine 2013). During the 1950s and 1960s there was a shortage of nurses in the UK, so Britain recruited individuals extensively from 16 British colonies, including British Guiana, the previous name for Guyana (Beishon et al. 1995). British colonisation meant that the UK was the favourite option for Guyanese migrants because Guyana’s educational system was modelled on the British System, and consequently individuals spoke English and had the entry qualifications for university study or employment.

Nearly half of all ethnic minorities in Great Britain live in Greater London, (Arai & Harding 2004). The 2001 Census (ONS 2001) recorded 20, 872 Guyanese living in England but mainly in London; however, the 2011 Census (ONS 2011) failed to disclose the exact number of Guyanese. Unfortunately the 2001 figure does not account for Guyanese who are from different racial groups living in UK because the data classify Guyanese as African Caribbean. Asians living in the UK are classified as one of the three groups: Indian, Pakistani or Bangladeshi according to ONS (2001), therefore Indo Guyanese have been virtually ignored in the Census information unless they have been classified as ‘Other – Asian’. It is therefore difficult to provide an accurate figure of the number of Guyanese living in the UK as the Census data have a tendency to create homogeneous BME groups.

The British Census of 2001 (ONS 2001) shows BME groups having a younger age profile than the white UK born population. A large proportion of African Caribbean people are in the 30 – 44 age group. As previously mentioned, the profile of African Guyanese is broadly similar to the African Caribbean group in the UK but this age profile does not fully capture the multiracial nature of Guyanese living in the UK.

Personal evidence and networks indicate that many Guyanese live in the south-west of London such as Balham, Streatham, Brixton, Tooting and Clapham. The concentration of BME groups in particular areas has been explained by ‘choice’ and ‘constraint’ theories (Lakey 1997). Choice theory argues that ethnic minorities prefer to live within their own group for social support and shared linguistic, cultural and religious traditions. Constraint theory argues that ethnic minority groups are prevented from moving outside certain geographical areas by their economic position, limited knowledge of housing opportunities and fear of discrimination. Rich (1986) considers the difficulties due to racism and other prejudices affecting settlers from the West Indies who came to England from 1945 – 62; and results in a high concentration of BME communities in specific areas such as London.

Oldroyd et al. (2005) suggest that migrants establish a western lifestyle once in the UK, but that is not necessarily true because migrants bring their beliefs, values and practices from their respective cultures and may either lack awareness of or not recognise the impact these beliefs and practices have on their lives within the host country. It is therefore important to consider the health needs of these migrant communities because they hold different discourses and understanding of their health issues. These traditional beliefs can cause tensions or conflict with the health beliefs and practices of the wider population. Individuals may be reluctant to reveal details of their beliefs unless specifically asked. A study conducted by Hjelm et al. (1998) has shown the importance of understanding the ways in which migrant individuals choose to manage their health beliefs and cope with long-term conditions in their host country. Although fourteen years old, this study has some relevance for the inquiry that is being undertaken today in terms of health practitioners’ perceptions of migrants’ health beliefs and the impact those have on managing their long-term condition.

Studies on migration and health beliefs (Williams 1993; Lassetter & Callister 2009) have shown the positive and negative effects that migration can have on the physical and mental health of the individual. Guyanese women are now part of an ageing population that is more likely to live longer and therefore be more susceptible to long-term conditions and the complexities of care (Phillips 2012). It seems pertinent at this point to give an overview of Guyana in order to gain some insight into the women’s culture, values and lifestyle factors as well as the health care system that they left behind. The beliefs and traditional practices of Guyanese that may influence their health will be discussed later in this chapter.

Guyana

Guyana is the only English-speaking country in South America. Comprised mainly of rain forest, it is situated between Suriname and Venezuela on the Northern Atlantic coast (see map for location on page 20). About 90% of its population live along the coastal belt; the remainder of the country is largely uninhabited with mountain ranges and dense equatorial forests where Amerindian tribes live (Green and Samuel 2000). About 250,000 people live in and around the capital city of Georgetown within the Demerara region, plus there are other smaller villages and towns in Essequibo and Berbice regions (World Factbook 2013).

Guyana is linked with the English-speaking Caribbean due to its legacy of British, French and Dutch colonisation rather than to South and Central America which have a predominantly Spanish and Portuguese legacy (World Factbook 2013). Nonetheless Guyana has its own culture and traditions due to its diverse population. A vast majority of the people speak a Creole form of English and the indigenous population (Amerindian) communicate using a range of dialects.