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

The aim of this search was to identify the existing body of knowledge relevant to the research topic. The paucity of research regarding Guyanese migrants meant a wider search being undertaken to include other BME communities in the UK and minority groups living with Type 2 Diabetes in a global context. The formal literature provides empirical evidence for studies on Type 2 Diabetes and the wider term, chronic illness. Due to the limited literature and information referring to Guyana and Guyanese, the search period was extended from 1998 to 2012 and encompassed other appropriate studies. Back et al. (2012) is the only Guyanese study I located which focused on Type 2 Diabetes. It is American but the issues identified are relevant for this inquiry due to the absence of research studies relating to this group. All literature acquired was written in English. Seminal studies that were original and still influential in the field of long-term condition/diabetes have been referred to where necessary.

Research on diabetes falls into two groups: first, studies on bio-medical driven research and population health drivers that encompass diabetes complications, psychological issues and medical management, and second, studies researching alongside people with diabetes that are person centred and group driven. The first group comprises biomedical literature that positions diabetes as a medically diagnosed and treated condition. The issue of non-compliance and self-management education is emphasised within this literature. All biomedical studies are quantitative and concerned with the measurement of observable phenomena, finding links between observable and measurable phenomena and the application, the sampling techniques and the experimental design so that the research is generalisable and replicable. The aim is to ensure objectivity is maintained. Randomised controlled trials are also referred to in the review that “set out to evaluate the effects of a particular treatment in a population where an intervention is introduced, and a comparison is made of the outcome with a control group. According to Lewith and Little (2013: 242) the population must be clearly defined and selected”. The second group of literature addresses the emotional and psychological aspects of diabetes in culturally diverse groups using qualitative research approaches. This has become a distinct area of research encompassing studies that focus on the way individuals live with a chronic illness and the diverse ways they accommodate their chronic illness experience within their daily lives. The research articles by Koch and Kralik and Koch et al. selected participatory action research that concentrated on how people experience their lives and the meanings and interpretations that they give to these aspects is viewed as being fundamental.

Incidence and prevalence of diabetes

A number of studies, (Lusignan et al. 2005; Massó González et al. 2009) have shown a rise in the prevalence of diabetes but very few have examined the incidence of diabetes in the UK. Incidence as an epidemiological term is used to refer to the rate of occurrence of a particular illness and similarly prevalence is described as the number of cases of an illness in a given period. Oldroyd et al. (2005) suggest the reasons why it is important to consider incidence and prevalence of diabetes is because it can vary by ethnic group for example; Type 2 diabetes is much more common in South Asian and African Caribbean groups in the UK.

Lusignan et al. (2005) conducted a secondary computer data analysis study to examine trends in the prevalence of patients diagnosed with Type 2 Diabetes. They used data from the Doctors’ Independent Network (DIN), an anonymised computerised UK primary base comprising 74 Family Practices from 1994 – 2001 in England and Wales. The prevalence rose from 17/1000 in 1994 to 25/1000 in 2001. The researchers concluded that glycaemic control had not improved and obesity had increased but that doctors had limited power to control the weight of their patients.

Another study by Forouhi et al. (2007) identified that there is a paucity of information on diabetes incidence in the UK. They suggested that impaired glucose regulation in the non-diabetic range is predictive of an incidence of diabetes. They conducted a longitudinal study in 1999-2000 in Ely, UK with 1040 non diabetic adults aged 40-69. The data supported the recommendation that the original cut off of 6.1 mmol/l should be retained when identifying the category of impaired fasting glucose. The limitations of the study have been acknowledged by the researchers as the sample group were mainly White European origin living in an affluent area so were unable to describe the incidence in people of other ethnic groups. The sample is not generalisable to the rest of UK.

A later longitudinal study by Massó González et al. (2009) examined UK trends in the prevalence and incidence of Type 1 and Type 2 Diabetes. Data were obtained from THIN – a primary care medical records data base that contained information entered by primary care physicians (PCPs) in the UK. They used the database to identify individuals aged from 10 to 79. Data were collected on treatment patterns and body mass index in the prevalence and incident cases. Incident cases were separated from the prevalent cases by date of diagnosis and patients with gestational or drug induced diabetes were excluded. Diabetes prevalence increased from 2.8% in 1996 to 4.3% in 2005. Incidence of Type l diabetes remained constant during the study period but the incidence of Type 2 Diabetes rose from 2.60 to 4.31 in 2005. Massó González et al. (2009) concluded that the prevalence and incidence of diabetes have increased in the UK over the past decade but that the increase can be mainly explained by the increase in Type 2 Diabetes and its association with obesity. This study too could be criticised for not including screening/recording information collected in primary care which could have been a cause of the increase of prevalence. It was too readily dismissed and no limitations of the study were presented.

Back et al. (2012), conducted an American study from 2004 to 2006 that focused on Indian Guyanese living in New York and noticed a high prevalence of Type 2 Diabetes among this group when comparisons were made with Caucasian, African American and Hispanic patients with diabetes. This study is relevant for the inquiry as Back et al. (2012) observed that Type 2 Diabetes was more common in younger and leaner Guyanese men and women than other ethnic groups. They identified the need for culturally appropriate strategies to prevent and control diabetes among Guyanese inhabitants in New York.

The evidence from the UK Government medical report (DH2010) estimated that 2.2 million in England are diagnosed with diabetes and the figure is increasing yearly. A newer report by Diabetes UK (2012: 4) states that “2.9 million people have been diagnosed with diabetes in the UK. By 2025, it is estimated that five million will have diabetes”. Increasing obesity levels and an ageing population are claimed as contributory factors. It is estimated that 850,000 people in the UK have undiagnosed diabetes (Diabetes UK 2012).

The UK prevalence of the long term condition is possibly five times higher in those from BME backgrounds (DH 2001, 2007). DH (2001, 2007,) and Tillin et al. (2012) also highlight that people of South Asian, African and African Caribbean descent are at greater risk of developing Type 2 Diabetes than the rest of the population. Diabetes UK (2012: 9) suggests that “compared with women in the general population diabetes is five times more likely in Pakistani women, at least three times more in Bangladeshi and Black Caribbean women and two and a half times more in Indian women”.

A large scale randomised control trial (RCT) by United Kingdom Prospective Diabetes Study (UKPDS), Turner (1998) viewed diabetes as a medical problem with specific complications. This is an influential study hence my rationale for including it in the literature review. It provided guidelines for the management of Type 2 Diabetes. This study demonstrated that tight control of hypertension reduced the risk of death from the complications of diabetes by a third and the risk of death from stroke by more than a third. In this influential study 1148 people with hypertension were randomised into two groups, one group with “tight blood pressure control” achieving a blood pressure mean of 144/82 mmHg and a group with “less tight blood pressure control” achieving 154/87 mmHg. Tighter blood pressure control in patients with Type 2 Diabetes was linked to significant reductions in stroke risk, heart failure and macro vascular and micro vascular complications. The conclusions drawn from the study showed that tight blood pressure control in patients with hypertension and Type 2 Diabetes achieved a clinically important reduction in the risks of death (Turner 1998). In reviewing this RCT, which is referred to in many diabetic research studies patients were either selected by the research team or offered to select themselves. The population was carefully selected but bias can be introduced in RCTs where the population may be selected for recruitment but does not represent the key population of interest (Lewith & Little 2013). The patients were reviewed every three months during the life of the study but in reality, patients are seen every 12 months for a diabetic review. Three monthly reviews would have had resource implications. Therefore what was achievable may not necessarily apply to all individuals with Type 2 Diabetes especially as results from RCTs are generally applied to clinical practice. The strength of the study lies in the fact that it is good example of reducing complications in those with Type 2 Diabetes but for a group of selected patients.

A ten year follow up for the 884 patients undergoing post-trial monitoring among the 1148 patients randomly assigned to tight or less-tight blood-pressure control was conducted by Holman et al. (2008). This 10-year follow-up study of the survivor cohort from the UKPDS blood-pressure – intervention trial showed that the benefits seen in patients assigned to a strategy of tight blood-pressure control were not maintained once the differences in blood pressure seen during the trial itself were lost.

Since the publication of the UKPDS blood-pressure results, Holman et al. (2008) reported on other randomized, controlled trials that have confirmed the importance of treating hypertension in patients with Type 2 Diabetes. They believed that none of those subsequent studies have reported post-trial follow-up data, so the longevity of benefits observed during the trial is unknown. The limitations of their study were discussed but Holman et al. (2008) ultimately believed that blood-pressure control is important in reducing the risks of microvascular and macro-vascular disease in individuals with Type 2 Diabetes however this control must be maintained if the benefits are to be sustained.

The increase in Type 2 Diabetes among ethnic groups is partially attributed to changes in lifestyle and traditional diets as many refuse to change their behaviour when eating traditional foods. This evidence can be perceived as anecdotal due to the lack of empirical evidence. In my experience, Guyanese people living in the UK continue to eat their traditional dishes as a cultural link to their homeland. This diet is similar to those from the African Caribbean and Asian countries (Brown et al. 2007). The Indo Guyanese influence means Guyanese people also consume curries, dhal, rice and roti as part of the Guyanese cultural diet. The impact cultural factors can have on diet and lifestyle is explored in the next section.

The concept of culture has a range of meanings depending on the context in which it is used. Culture is defined as the symbolic and learned aspects of human society and includes characteristics such as language, custom and convention (Kleinman 1988). Helman (2007: 2) sees “culture as a set of guidelines, both implicit and explicit, that an individual inherits as a member of a particular society that tells them how to view the world through experience and how to behave in relation to others, supernatural forces or gods and the natural environment”. Helman (2007) describes culture as an inherited lens through which the individual perceives and understands the world that he inhabits and learns how to live within.

Kleinman et al. (2006) suggest that when we develop an illness, how we perceive, experience, explain and cope with it is culturally shaped specifically to the social positions we occupy and systems of meaning we employ. How we communicate health problems, present symptoms, choose when to go for care, and evaluate care are all affected and shaped by cultural beliefs. It has been shown that cultural beliefs influence disease conceptualization, adaptation and coping strategies (Kleinman et al. 2006). Making a connection and understanding how these traditions, beliefs and practices might conflict with the biomedical model of care is important and can have a major influence on the person’s management of their Type 2 Diabetes.

Smith (2012) investigates Type 2 Diabetes with African Caribbean women living in Florida using a cultural belief model. In this qualitative study Smith (2012) gave thirty women a cultural consensus beliefs questionnaire and following a cultural analysis found that the women shared a single cultural belief model about Type 2 Diabetes. The women discussed their struggles with their traditional Caribbean diet and believed in traditional Caribbean medicine such as cerasee, bitter melon bush tea and cinnamon bark to treat their diabetes. An interesting study that is a valid piece of research that outlines a theoretical framework and identifies the aim of the study linked to an existing body of knowledge about cultural beliefs. The limitations of the study are acknowledged by the researcher.

Although there may be cultural differences in a social group based around religious beliefs or social class, there may also be shared cultural beliefs and practices such as diet. There is limited research focusing on Guyanese culture, diet and diabetes in the UK. However, many Guyanese are of South Asian origin as indicated by Back et al. (2012) that focused on Indo Guyanese, the term used for Indian Guyanese. Reference is made to studies by (Chowdhury et al. 2009; Fleming et al. 2008; Lawton et al. 2008) which are relevant due to the strong Asian cultural influences on diet. Individuals from these BME groups also consume foods of high fat and sodium content and express difficulty in giving up traditional foods (Chowdhury et al. 2009). Food sharing is also a cultural tradition in some Hindu communities and Patel et al. (2001) highlight the unfortunate consequences for individuals with diabetes who feel obliged to eat differently rather than participating in the sharing. Many may refuse to acknowledge their condition resulting in being served inappropriate foods.

In two studies, BME groups were found to attach more importance to retention of former dietary and lifestyle habits when they have Type 2 Diabetes. However, health care practitioners may fail to understand this. Scott (1998; 2001) studied lay beliefs, knowledge and practices regarding non–insulin dependent diabetes (Type 2 Diabetes) and the service user experience amongst West Indians living in the UK with the long-term condition. Importantly Scott (2001) found that health care practitioners lacked awareness of West Indian food culture so could not influence their service users’ dietary patterns. They needed to learn more about BME traditional foods so that when healthy eating advice is offered, it is culture specific. Scott (1998; 2001) generalised her findings to all West Indians including the one Guyanese participant. The participants were treated as one homogeneous group when in fact each West Indian island has its own individual beliefs, cultural differences and practices. Yet these differences are not always acknowledged in research studies or in practice. West Indians may share certain commonalities in foods that are part of the staple diet such as yams and sweet potatoes but these foods are cooked and prepared differently.

Brown et al. (2007) conducted a similar study on an African Caribbean inner city population. The authors produced similar findings to Scott’s study but could be criticised for the same reasons. Brown et al. (2007) considered their sample to be a homogenous group with similar beliefs and needs but they also discovered that health beliefs affecting people’s adherence to treatment may alter their outcomes. Unfortunately the biomedical model of managing diabetes is offered to everyone with the long-term condition regardless of the health beliefs or culture that influences how they respond to treatment. Individuals may draw on other systems as part of their own self-care model (Brown et al. 2007).

Risk factors

Age, obesity, high blood cholesterol, hypertension and ethnicity/race (Oldroyd et al. 2005; Tillin et al. 2012) are risk factors associated with diabetes. Diabetes UK (2008) suggests that groups such as ‘black’, Asian or those from BME communities plus a family member with diabetes are at a greater risk of Type 2 Diabetes and is almost 13 times higher in obese women compared with those of normal weight. This particular inquiry falls within the BME group so the identified risk factors are relevant for this study group.

Psychological distress and depression can affect a person’s motivation and ability to cope with the long-term condition (Das-Munshi et al. 2007; Gilbody et al. 2006). The existing WHO definition of depression is ‘a common mental disorder that presents with loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or appetite, low energy and poor concentration’ (WHO 2013).

Emerging literature (Lloyd 2010; Pouwer et al. 2010; Lloyd et al. 2012) into emotional and psychological aspects of diabetes in culturally diverse groups largely focuses on the prevalence of mental disorders, particularly depression. There is epidemiological evidence that suggests at least one third of people with diabetes will develop clinically relevant depressive disorders (Anderson et al. 2001, Pouwer et al. 2010) which can go unrecognised, under-reported and untreated. It has been reported that people with diabetes are two to three times more likely to be depressed than their non-diabetic counterparts (Lloyd 2010; Pouwer et al. 2010).

According to NICE (2009) recognising and managing psychological conditions can be associated with improved function and better outcomes for those with long-term diabetes. Das-Munshi et al. (2007) discovered that many people with diabetes experienced generalised anxiety or anxiety related to specific aspects of the condition such as glucose monitoring or administering injections. Gilbody et al. (2006) found that cross-sectional surveys of depression showed people also experience stress when trying to cope with the long-term condition. Whilst most literature has looked at the measurable aspects of depression and diabetes, it still remains under-diagnosed and under-treated (Katon et al. 2010).

Specific research studies focusing on emotional and psychological aspects in the UK’s BME groups are scarce but more recent studies used screening tools to measure depression (Lloyd et al. 2005; Roy et al. 2012; Lloyd et al. 2012). These studies (Wagner et al. 2007; Lloyd et al. 2012) identified depression as a common feature among the Asian population but there is limited reported research on the UK Guyanese population. A number of tools such as Beck’s Inventory and Hospital and Anxiety Depression (HAD) scale are used to measure depression with criticism being levied at some for not accurately measuring the symptoms in different cultural groups. The problems arise because the tools are developed for people from Western populations rather than BME groups who present depression with culturally bound symptoms such as somatic pains (Bhugra & Ayonrinde 2004).

As discussed the literature has focused predominantly on the biomedical model of diabetes that considers the physical aspects of the condition. Studies have either been systematic reviews or epidemiological in nature. Few studies have concentrated on the lived experience of researching alongside those with a long-term condition. The lived experience is an important and relevant section of this inquiry because it gives the participants the opportunity to voice their feelings about the impact diabetes has on their lives.

Living with Diabetes

Early research from Bury (1982; 1991) described chronic illness as a biographical disruption which encompasses a reassessment of a person’s self-perception, personal biography and life trajectory including personal relationships and questioning set assumptions. Bury (1997) further explained how chronic illness affected the individual in wider social contexts when people become preoccupied with managing the symptoms.

Whilst Bury’s work has been important and gives prominence to the layperson’s voice, Williams (2003) critiques Bury’s concept of biographical disruption as a biomedical approach couched in terms of an impaired body causing a disruption. Faircloth et al. (2004) are also critical of Bury’s claims. They investigated sudden illness and biographical flow in narratives of stroke recovery in a sample group of middle aged male survivors from Non-Hispanic White, African American and Puerto Rican backgrounds. Faircloth et al. (2004) argued that sudden illness can develop into an enduring chronic illness narrative. They suggested that rather than focusing on biographical disruption, narratives are a more useful way for people to talk about their illness experience. Stamm et al. (2008) explored the narrative life stories of ten individuals with rheumatoid arthritis. Participants were given the opportunity to give meaning to their experiences of living with a long-term condition. The researchers stressed the importance of the individuals being encouraged to be self-responsible and showed that narratives gave voice to suffering and feelings beyond the domain of the biomedical voice (Stamm et al. 2008).

Koch and Kralik researched alongside adult men and women who talked about their experiences of living with chronic/long-term conditions (Koch 1998; Koch et al. 1999; Koch & Kelly 1999; Koch & Kralik 2001; Koch et al. 2002; Koch et al. 2004; Koch et al. 2005; Visentin et al. 2006). These conditions covered a broad range including multiple and complex diagnoses such as cancers, Crohn’s disease, multiple sclerosis, asthma, arthritis, schizophrenia, HIV and diabetes. By allowing the voices to be heard, these studies have provided greater insight and understanding into the lives of individuals with a chronic illness.

Koch and Kralik (2006) consolidated a chronic illness research programme by continually revising and validating the emerging constructs evolving from participants’ stories. Two major constructs have emerged which are: Extraordinariness and Ordinariness (Kralik 2002). Movement from preoccupation with the self (extraordinary phase) to adaption of chronic illness symptoms into one’s life (toward being ordinary) has been termed transition. Originally transition was defined as a process of learning to take the consequences of living with a chronic illness into one’s life and moving on. It cannot be assumed that everyone moves on as some of the participants living with diabetes ignore diabetes self-management, and a few studies show that people occasionally do not accept their long-term condition until complications are evident (Kralik 2002).

Additionally Koch et al. (1999) conducted a PAR study with women living with Type 2 Diabetes. The aim of their study was to facilitate those voices being clearly heard in relation to their health, to highlight people’s strengths in living with a chronic illness and enable professionals to provide more responsive and consumer-focused services. This particular PAR study by Koch et al. (1999) highlighted the appropriateness of PAR when exploring the lived experiences of participants with Type 2 Diabetes which is the focus of this inquiry. These authors argued that biographical storytelling celebrated a mode of self-expression and individualised versions of experience. The telling of one’s story as an intervention enables participants to reflect, and learn to incorporate the consequences of living with a long-term condition into their lives.

Living with a long-term condition is not easy for an individual because they need to learn how to self-manage and increase their knowledge of the condition. Within the context of diabetes, a key feature of the self-management programme is to enable individuals to manage their diabetes on a day to day basis through effective education (DH 2005). However individuals with diabetes need more than just adequate knowledge. They need to feel empowered and in readiness to take on board the information presented to them.