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

A genetic predisposition to developing diabetes was a fairly common construct among the women in the inquiry. Some women felt that they had a greater propensity to developing diabetes due to their history because many of their relatives: siblings, parents, spouses, grandparents and children had the condition. Some relatives classified it as a ‘touch of sugar’ which is an expression used in the Caribbean for those with Type 2 Diabetes. In fact six women had close relatives living with diabetes. On reflection Vera realised in her story that her father and cousins may have had diabetes but never admitted it. Her father referred to it as a ‘touch of sugar’. The term ‘touch of sugar’ is also used by African Americans and other minority groups living in the United States. The problem is that as they were having ‘only a touch of sugar’ implies that diabetes is not taken seriously and may be regarded as a dangerous euphemism according to Phillips (2006). The condition is actually serious and requires attention from the health care team.

Even with a family history, certain factors potentially increased the women’s risk of diabetes such as age, being overweight, having hypertension and abnormal lipid levels. Majority of the women were overweight and three had hypertension. Jillian had been taking the weight loss drug Beretta to reduce her weight. Specific studies (Lindstrom & Tuomilehto 2003; Talmud et al. 2010) have focused on genetic models/tools to predict risk of Type 2 Diabetes which concluded that parental history and other factors such as obesity, hypertension, and impaired fasting glucose findings (but not a large waist line) remained significant predictors (Diabetes UK 2008). I felt the women could be at further risk because Tillin et al. (2012) reported astonishingly high rates of diabetes found in UK ethnic groups especially those who are middle aged among South Asian, African and African Caribbean descent when compared with White Europeans. Researchers suggested that this could possibly be due to the Western lifestyle that they may have adopted but they remained unclear why this is happening among these BME groups. Other unknown factors may have contributed to the cause (Tillin et al. 2012). Surprisingly though diabetes is also on the increase in Guyana where the women migrated from according to WHO (2010). The WHO provides evidence that Guyana falls within the low income countries where diabetes is the third leading cause of death among older Guyanese women and men (see Chapter 2). Are there other factors contributing to this increase rather than just lifestyle? Could there be a genetic predisposition due to the multiracial mix that exists among Guyanese people that is described fully in Chapter 2? Clearly this issue requires further research and discussion but this is beyond the scope of this thesis.

In the next section I explore the way in which the women self-managed Type 2 Diabetes by referring to their personal stories and PAR groups. As discussed I have grouped the constructs together: thirst for information, the use of alternative therapies, the important role that religion and faith played and management of lifestyle including complications of this long term condition because they were all associated with self-management.

Self-Management of Type 2 Diabetes

Self-management as a term is often described as the individual being actively involved in their treatment process (Elissen et al. (2013). Common assumptions have been made about the nature of self-management but Stone et al. (2006) and Khunti et al. (2012) revealed in the literature review, (see Chapter 3) that self-management emphasised compliance/adherence to directions by health care practitioners where ‘self’ in self-management has been ignored and the person has been objectified as a patient” (Koch et al. 2004:485). Koch et al. (2004) believed that “locating the ‘self’ in self-management means acknowledging that many people living with a chronic condition are already self-determining and their expertise should be acknowledged” (Koch et al. 2004:484). If not the patient abdicates responsibility and just follows instructions. This medical model of self-management was obvious within the group sessions as the women described how it felt in terms of “balancing what to eat in order to keep their blood glucose levels down”. This particular model of self-management took priority in their lives. A good example of this occurred when the majority of the questions that they asked Mary, the diabetic specialist nurse who attended two PAR group sessions (see Chapter 7) related to the medical management of their condition. Agnes asked a question about Metformin, “when to increase or decrease the dosage as it sometimes causes diarrhoea and getting cramps in fingers and toes”, Vera asked whether “statins should be taken to reduce cholesterol levels” and Pam enquired “if there was a way to check your cholesterol levels?” There may be a great deal of information available to the women but they were unsure how to use it to self-manage their condition. This was surprising because Koch et al. (2004) suggest that older people often followed the doctor’s orders and medication was taken as prescribed if not the patient might be labelled as being non-compliant. Unfortunately traditional models of diabetes rely mainly on individual compliance (Macaden & Clarke 2010) and less on the individual’s voice in making decisions about their condition.

Whilst the women focused initially on the medical model of treatment, ‘self’ in self-management was not being acknowledged by the health care practitioners. They were trying to take control of their diabetes by acquiring information regarding the condition yet the information available to them was rather limited and fragmented. The women realised the need for more appropriate information to meet their various needs as the inquiry progressed. After all they had to make decisions every day of their lives regarding their diabetes but they perpetuated specific gaps in their knowledge, misconceptions and myths about their condition which were highlighted in the interviews and the group sessions.

Pam referred to a programme which she attended when first diagnosed that she shared with the group. Agnes who had been more recently diagnosed talked about the programme available to her but she identified the need for more information about her prescribed medication. It is important to note from the literature review in Chapter 3 that the Expert Patients Programme emerged in UK health policy (DH 2001; Donaldson 2003). It encouraged self-management education with access to information about diabetes and empowerment in order for individuals to successfully self-manage long-term conditions. Further nationally supported programmes of structured patient education, DAFNE (Dose Adjustment for Normal Eating) normally for those who have Type 1 Diabetes and on insulin and DESMOND, a course which lasts for one full day or two half days (Cradock 2005) for those newly diagnosed with Type 2 Diabetes were provided (see Chapter 3).

Knowledge and information are important in diabetes care because they help the individual to gain control over their lives. Only three women attended the Expert Patients Programme and shared the information with us yet they were still eager for more information. Considering that these programmes are widely available, it is surprising that some of the women had never attended any of them. Perhaps the women had never been encouraged by their respective health care teams yet there was an expectation when DESMOND was first developed that it would be a pathway of care for people throughout their lifetime journey with diabetes. Unfortunately some of the women developed diabetes before these programmes were implemented and only Pam, Agnes and Bea remembered attending a programme. Pam still had the information whereas the other two women did not remember what they had been taught. Stone et al. (2006) suggest that programmes such as DESMOND have not necessarily met the needs of BME groups as these types of educational approaches to diabetes need to be more collaborative and relevant for each respective community. Another problem highlighted with the DESMOND programme is that it does not cater for those with ongoing diabetes. I argue that a more collaborative and empowered approach to diabetes management with an emphasis on partnership working with the health care practitioners (Anderson & Funnell 2000; Thomas 2004) would have improved the outcomes for the women.

The women were self-managing as they drew on their own belief systems to manage and take control of their diabetes. It is recognised that when migrants come to a foreign country they bring their beliefs, values, and practices that they may hold about their respective cultures (Hjelm et al. 1998). By culture, I mean the characteristics of a particular group of people, defined by their language, religion, cuisine, social habits, music (Live Science 2012), or “a set of guidelines that an individual inherits as a member of that society that tells them how to view the world” (Helman 2007:2).

Individuals bring these practices and guidelines with them even though they may lack awareness of them or the impact these can have on their lives within the host country. Migrant communities may hold different discourses and understanding of their health and practices held by the wider population (Hjelm et al. 1998). Individuals may be reluctant to reveal details of their beliefs unless they have been specifically requested to provide this information. Responding to migrants’ beliefs and cultural practices need to be considered when they present with a long-term condition as these beliefs can vary from believing in the supernatural and the power of God to finding explanations for changes in their bodily processes (Scott 1998; Helman 2007). As previously mentioned in Chapter 2, Guyanese migrants may have had their beliefs when they migrated on the use of traditional remedies or CAM when managing their episodes of illness.

All the women reported their beliefs in alternative therapies especially herbal medicine but had not necessarily shared these beliefs with the health care practitioners. They genuinely believed that alternative therapies could help them to take control of their condition by reducing their glucose levels and dosage of oral hypoglycaemic agents to maintain their wellbeing. However it could be perceived that quite the reverse was happening as the diabetes seemed to be taking control of them. The women were still experiencing high blood glucose levels. Their experiences of self-managing their condition varied greatly within the group.

These women are from a particular BME community that has a history of using herbal medicines as part of the Guyanese health care delivery system as discussed in Chapter 2. Therefore it is not uncommon in the UK or Guyana to drink particular herbal preparations and vegetables such as karela and okra which can be drunk as tea when unwell. (Scott 1998; Hunt et al. 2000; Poss et al. 2003; Manya et al. 2012) reported similar findings as this inquiry regarding the use of complementary therapies among their BME participants in England and internationally. The participants in their studies used herbs and other remedies such as bitters, fresh garlic and garlic tablets with the purpose of controlling their blood sugar alongside their biomedical treatments. This is associated with their beliefs about herbs either having curative properties which can reduce their glucose levels or improve their quality of life. The use of karela or bitter melon is a common supplement that the women in this inquiry took but there seems to be limited evidence regarding this vegetable. Yeh et al. (2003) conducted a systematic review of herbs and dietary supplements for glycaemic control in diabetes. Studies on karela - bitter melon or Momordica Charantia - grown in tropical areas including India, South America and Africa, were part of this review. They concluded that there is still insufficient evidence to draw definitive conclusions about the efficacy of individual herbs and supplements for diabetes: however they appear to be generally safe. Yeh et al. (2003:1286) referred to two specific controlled short-term metabolic trials on karela with individuals with Type 2 Diabetes which “reported acute effects on the blood glucose with Momordica Charantia fruit juice as well as subcutaneous vegetable insulin extract. Yeh et al. (2003) also referred to two other small, uncontrolled open-label trials in their review and reported positive effects on glycaemic control after long term use. No adverse effects were reported from these trials. However they felt further information in RCTs is needed.

The women did not necessarily partake in alternative therapies that consisted of very different medical systems such Ayurvedic medicine and traditional Chinese medicine. The National Library for Health (NLH) (2005) suggests that these systems provide alternative medical systems to Western biomedicine and include in their body of knowledge diagnostic systems and treatments for the full range of conditions that impact on health and wellbeing throughout the world.

Religious beliefs also played an important role in the women’s lives. The majority were Catholic with two Buddhists who prayed and chanted daily. Two international studies have focused specifically on religion, spirituality and faith and its link with diabetes. Newlin et al. (2008) believed that although religion and spirituality are prominent in the lives of BME women with Type 2 Diabetes, there is limited research on the relationships with religion and spirituality to glycaemic control in their study population. However they discovered that religion and spirituality should be addressed in diabetes care to improve glycaemic control (Newlin et al. 2008). Abdoli et al. (2011) researched stories of Iranian people with diabetes and concluded that religion, faith and empowerment were linked together therefore facilitators needed to understand the importance of cultural and religious beliefs in order to empower Iranian people to take control of their illness.

The women experienced several complications associated with diabetes which varied from heart disease and strokes to the development of nerve damage, kidney disease and foot problems. These complications are similar to the ones that Turner (1998) discovered in the UKPD study. Several of the women also reported complications possibly as a result of hypoglycaemic episodes. Hypoglycaemia may be caused by too much or incorrectly timed insulin or oral diabetic medication, too much or incorrectly timed exercise or not enough food, specifically glucose containing carbohydrates and can vary from person to person (Hill 2011). Maintaining glycaemic control was important in preventing complications such as retinopathy, neuropathy, nephropathy and the risk of cardiovascular disease (Sutton & Chapman – Novakofski 2011). The reports from the women suggest that they were not fully cognisant of these facts and that their self-management of diabetes was less than adequate. Or perhaps it was due to the progression of their disease. We can rely only on stories told and information shared in the groups. Studies by Philip et al. (2009) and Amiel et al. (2008) on hypoglycaemic episodes concur with the women’s experiences of hypoglycaemic episodes and risks of complications. Hypoglycaemia is a serious side effect of diabetes treatment that can have devastating effects on the body therefore the women needed to be made aware of the symptoms and how to manage this effectively.

During the period of the inquiry all the women had had to make significant changes in their lives since they were diagnosed with diabetes. They recognised that lifestyle played a huge role in managing their long-term condition however readiness meant disengaging from certain habits and behaviours. Huge attempts were made to change behaviour and lifestyles. The motivation was present among them as they faced many obstacles but learning from each other through sharing of information and reflecting on their experiences within the group sessions enabled the women to start thinking about implementing significant changes in their lives. The learning that took place is discussed later in the chapter. In the meanwhile their aim was remaining healthy whilst trying to live with diabetes.

Health and migration is not a new issue for the women. A growing body of research has focused on this topic. Lassetter and Callister (2009) conducted an extensive literature review on the impact on the health of voluntary migrants in Western societies. They reviewed a range of studies but adhered to a specific criterion that ruled out refugees who may have fled their countries for different reasons. They included migrants who may have left their homelands voluntarily. By voluntary migration, Lassetter and Callister (2009) meant those individuals who were willing to cross a cultural, geographic or political boundary with the intention of a substantial or permanent stay. Following the physical relocation, Lassetter and Callister (2009) believed that voluntary migrants often experience life transitions such as family role modifications, occupational and socio economic changes and cultural and social network alterations.

Many transitions had already taken place in the women’s lives; migration being the biggest one but coming to terms with diabetes and self-managing has been an equal challenge for them. Transition as a process has been the subject of study across several disciplines that include rituals, life span development, life stages and bereavement. Meleis (2011) described transition as a process triggered by change that is essentially positive but can have a negative effect on the individual as they move from one country to another. These movements “can put people at risk of illness, render them more vulnerable to stress and may profoundly influence health care as they cope and adjust to their new environment” (Meleis 2011:1). In terms of illness, transition may not be as easy as described because it depends on how the individual responds to the stage they are at or whether they have the desire to move on. Kralik’s (2002) study revealed the difficulties of moving on with diabetes as it cannot be assumed that everyone moves on; some of the participants living with diabetes in her study ignored self-management and did not accept their long-term condition until complications were evident. However I believe that the women having adapted to change as a result of migration, had made huge attempts at moving on and learnt skills that could be applied to living with Type 2 Diabetes but managing the condition remained a challenge for them.

Moreover there were specific problems that the women experienced as they learned to live with diabetes; for example, physical disabilities that affected their mobility therefore they were not able to exercise or walk very far resulting in them becoming housebound. Access to the relevant health care services proved to be difficult for them as they explored these issues in the group sessions, for example getting follow up care for their diabetes from their GPs; Vera had not been reviewed for eight years. The study by Hall et al. (2003) suggested that health practitioners need to understand the various obstacles that individuals face when trying to make a behaviour change. Changing their lifestyle was initially achieved with limited success but the women showed tremendous improvement in the group sessions with support from each other and made specific lifestyle changes in terms of diet and exercise.

As the inquiry progressed, the women modified their diets, took more regular exercise, kept a check on their glucose levels and eventually insisted on regular check-ups from their GPs. For example, they were surprised when they saw the portion sizes of food that they should be eating. They reflected on the larger quantities of food high in fats and carbohydrates that they needed to avoid. In the group sessions they shared information regarding types of food they should be eating, made great attempts to modify this but recognised the dilemma when faced with their favourite Guyanese foods. Studies by Brown et al. (2007) and Scott (1998) highlighted that African Caribbean participants preferred and ate a diet of traditional Caribbean food and Chowdhury et al. (2000) who studied food beliefs among British Bangladeshis with diabetes produced similar findings regarding food choices which did not necessarily incorporate many Western foods. Chowdhury et al. (2000) discovered that their participants preferred quantities of Bangladeshi foods; meat and traditional sweets. Foods were not classified or selected in terms of protein, carbohydrate but within their own cultural classification. They suggest that dietary advice should reflect ethnic customs and the different cultural meaning of particular foods while also acknowledging the individual’s ability to exercise choice (Chowdhury et al. 2000).

However the women in this inquiry developed knowledge and understanding that their preferred Guyanese diet may not necessarily be appropriate for their needs. They displayed a readiness to change their cultural diet to a more varied one which resulted in a change in their behaviour. This occurred as a result of the collaborative interactions and support offered to each other in the PAR groups.

To summarise, I believe that the women took alternative therapies to adopt a more holistic approach to manage their Type 2 Diabetes as they considered that other aspects of their lives were being neglected by the biomedical model of treatment for their condition. Whilst the biomedical model is useful for treating diabetes as it can develop an individual’s understanding regarding what has gone wrong with the physical body and appropriate treatment provided, it fails to consider other aspects of an individual’s thinking and way of life that can impact on a person’s wellbeing.

Learning to live with diabetes and its many complications caused the women to experience variations in mood and feeling depressed. This variation in mood is a recognised feature of Type 2 Diabetes which warrants further discussion in the next section.

Psychological Issues

Complaints of feeling depressed or just feeling low was a common feature for the women in the inquiry although this was not often vocalised as depression but rather as feelings of loss and sadness or a “low unexplained feeling” were some of the words used by one woman. However none of the women had seen their GPs to gain a firm diagnosis. They were merely describing how they felt. In order to be given a diagnosis the women needed to be screened for depression. Research studies regarding emotional and psychological conditions in BME groups in the UK have been scarce but more recent studies used screening tools to measure depression (Lloyd et al. 2005; Roy et al. 2012; Lloyd et al. 2012) in those with diabetes.

Studies by (Anderson et al. (2001; Kumar et al. 2009; Gendelman et al. 2009) have shown that there may be a link with depression and diabetes but it is still debateable whether depression increases the risk of diabetes or diabetes increases the risk of depression, especially when depression can be unrecognised, is under reported and not treated. Prevalence of depression in people with diabetes is significantly higher than the general population, as with people with diabetes are two to three times more likely to be depressed than their non-diabetic counterparts (Lloyd 2010; Pouwer et al. 2010).

The physical symptoms of diabetes once diagnosed tend to be prioritised by the GP but recognising and managing psychological conditions such as depression is difficult because some of the symptoms experienced in depression can overlap with some of diabetes especially somatic ones. These somatic symptoms are for example unexplained physical pain, lack of energy, sleep disturbance and appetite changes which individuals may not recognise as depressive symptoms or lack confidence in reporting (Katon et al. 2010).

Stress and anxiety are two other psychological issues that the women experienced. Gilbody et al. (2006) found similar findings as this inquiry in cross-sectional surveys of depression. People also experience stress when trying to cope with Type 2 Diabetes. Stress can affect the individual’s blood sugar levels leading to an increase in them. The women in this inquiry experienced stress too as highlighted by Gilbody et al. (2006) but they wondered if stress caused their diabetes. They commented on whether stress associated with their different jobs could have been a trigger for their condition. Eriksson et al.’s (2013) recent study highlighted that work stress may contribute to Type 2 Diabetes particularly in women. However the researchers were unsure whether it was due mainly to the work situation or to a combination of stress at work and at home. Stress at work was identified by Eriksson et al. (2013) as a risk factor of which GPs should be aware. One of the women acknowledged that she had made a serious attempt to lead a healthy life yet she developed diabetes. Therefore she felt “stress may have been one of the triggers for her long-term condition. Pouwer et al. (2010) suggested that emotional stress plays a role in the cause of diabetes but failed to identify if work stress did. Das-Munshi et al. (2007) discovered that many people with diabetes experience generalised anxiety or anxiety that related to specific aspects of the condition such as diabetes.

As the women talked about their psychological problems within the group sessions, they felt listened to and appreciated by the group as support was offered to each other during the inquiry and afterwards as they continued to meet on a fairly regular basis. They have also kept in contact with me and each other by telephone. A quote by one of the women summed up how the women felt as a group: “as Guyanese living in England we tend to stick together” and offer support when it is needed.

Being Guyanese

The women spoke with pride about their home country and what it was like to be Guyanese in the inquiry. They all missed their country, the sun and way of life, friends and lovely homes. It is important to remember that people romanticise about their earlier experiences but these were good memories. Although they had left Guyana many years ago, they retained their identity as they grappled with living in the UK with Type 2 Diabetes. They admitted in the group sessions that they loved their traditional food and maintained cultural cohesion as they stayed connected with the Guyanese diaspora within the UK and overseas.

As previously mentioned, the women had experienced a reversal of class when they migrated to the UK and for the first time experienced themselves as women from a BME community. I am particularly aware of the struggles some of them faced when they came in the 1950s and 1960s especially Bea and Vera who spoke openly about their experiences in the group sessions. As Bea said “One notice on the door said coloured people and dogs were not welcome”. Others found it difficult to cope with life in the UK even though they had acquired very responsible positions. Vera talked about the problems she encountered at work and said “I could have put my coat on and walked out and never looked back, but I kept at it”. Bea discussed the racism that she faced as a midwife but said that she and her friend were trail blazers in midwifery as they were the first ‘coloured’ midwives to visit English people in their homes to deliver babies. They felt it was important to know your place in the social structure and the difficulties experienced if you tried to move away from that structure. Back (2005) postulates that racism is normally defined as a form of spatial and territorial form of power that aims to secure a particular territory which the other claim as their own. Back (2005) claims people develop a map of belonging in order to make that territory their home even though risks are involved as they cross boundaries. Being ‘Black’ in a white society signifies only ‘whiteness’ according to (Alleyne 2002) as Black people aim to seek recognition of their value and dignity and oppose racial stereotypes. These women had to learn how to transcend racism in those early days which is another possible explanation why their cultural practices were so important to them and offer them emancipatory possibilities beyond racism (Alleyne 2002).

Most of the stories told in the group sessions related to the preoccupation of food and their relationship with Guyanese food which I felt gave the women a sense of identity. It seemed hard to give up. In Chapter 2, the various ethnic foods are described in some detail but not all the foods were available to them. They talked about these foods and claimed moderations in quantity and frequency but it was foremost in their minds. Changing their lifestyle and their diet appeared to be a huge challenge to them. The food though gave them a group identity within this context and to some extent preserved their cultural roots and heritage (Liburd 2003).

When considering food within a cultural context, anthropologists have given explanations as to why people eat certain foods within their culture which either gives them a group or individual identity. Food is used to either unite members in a group or to distinguish them from other groups. Liburd (2003) believe that dietary practices are deeply rooted in culture and claims that anthropologists have long recognised that food choices and modes of eating reflect many symbolic, affective, familial and gender specific associations. In her study on African-American women she suggested the women found modifying their patterns particularly challenging in light of their ritualised nature of eating and food selection and the meanings encoded in foods. Liburd (2003) proposes that health care providers need to understand the historical and social shaping of food patterns in order to work in partnership with people with Type 2 Diabetes. This way of working should help to shift cultural norms towards healthy eating. It is therefore easy to understand how the link between society and food, and thus food and societal identity becomes important in diasporas in general and in the lives of these women in particular as they sought comfort in each other’s company and enjoyed their traditional foods.

Studies by (Brown et al. 2007 and Scott 1998; 2001) captured some of the similar issues as this inquiry. Brown et al. (2007:464) discovered that their African Caribbean “participants found it difficult to incorporate dietary advice when treating diabetes with their traditional diet and doubted the advice that was at odds with beliefs about natural foods being wholesome and good for you”. Many of the participants in these studies felt that health professionals did not take dietary preferences into account when giving advice and they believed that it would take three generations before African Caribbean people would change their eating habits. Scott’s (1998; 2001) studies also emphasised the need for health professionals to develop more awareness of West Indian food culture so that they could influence their patients’ dietary patterns. They needed to learn more about BME traditional foods so that when healthy eating advice is offered, it is culture-specific.