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

Diabetes is considered to be the one of the most common long-term conditions (DH 2001). The WHO (2013) estimates that 347 million people worldwide have diabetes and project diabetes deaths to increase by two thirds between 2008 and 2030. The world prevalence of Type 2 Diabetes is expected to affect 285 million adults aged 20 to 79 years. This figure is 6.4 % of the total worldwide population and will increase to 7.7%, 439 million adults by 2030.

The WHO has produced a range of health policy reports (WHO 2003; 2004; 2006; 2011) showing the increase in diabetes across the world as a result of an ageing population, increasing obesity, unhealthy diets and lifestyle changes. The WHO (2003) reviewed the scientific evidence for the usefulness of screening for early detection of Type 2 Diabetes. The aim of the WHO publication (2003) was to stimulate discussion and encourage research with individuals at risk of acquiring the condition whereas the WHO (2004) was an initiative targeted at developing countries with the aim of raising awareness about diabetes and its complications. Two further reports by the WHO (2006), first concentrated on diabetic retinopathy, a complication of Type l and Type 2 Diabetes considered being the leading cause of new-onset blindness in many industrialised countries and a frequent cause of blindness elsewhere; and the guidelines for diagnosis and classification of diabetes and intermediate hyperglycaemia.

The most recent report by the WHO (2011) updated its diagnostic criteria that considered the individual who may be at risk of micro-vascular complications when the plasma glucose levels were high. The report also identified the use of HbA1c in diagnosing Type 2 Diabetes. It was an addendum to the report published in 2006 where the claim was made that the findings do not invalidate the recommendations made in 2006 but add further evidence based on a systematic review that an HbA1c of 6.5% is recommended as the cut off point for diagnosing diabetes. The report further concluded that there is currently insufficient evidence to make any recommendations on the HbA1c levels below 6.5%.

The information obtained in these policy reports (WHO 2003; 2004; 2006; 2011) is drawn mainly from meetings, consultation groups and a published systematic review. It would be interesting to know if those individuals with the long-term condition were consulted in any way and how they have influenced the evidence presented as it is not evident from reviewing the reports that the individual’s voice has been represented. The WHO statistical data are mainly estimated and do not fully consider under reporting of the condition so the true global extent of the long-term condition could be even greater than estimated.

The WHO’s actions resulting from the various reports (WHO 2003; 2004; 2006 & 2011) aim to stimulate the adoption of effective measures for surveillance, prevention and control of diabetes and its complications particularly in low and middle income countries. Guyana falls within the group of low income countries where diabetes is the third leading cause of death among older Guyanese women and men (WHO 2010). Another report by the WHO (2011) provides scientific guidelines for diabetes prevention, develop norms and standards for diabetes care and builds awareness of the global epidemic of diabetes. It partners the International Diabetes Federation in World Diabetes Day and conducts surveillance of diabetes and its risk factors. The global strategy on diet, physical activity and health complements the WHO’s diabetes work by focusing on population-wide promotion of healthy diet and regular physical activity thereby reducing the growing global problem of obesity (WHO 2011).

The WHO’s (2013) core functions are to set norms and standards, promote surveillance, raise awareness and strengthen prevention and control worldwide. The WHO’s (2011) data show that diabetes mellitus deaths in Guyana reached 537 or 9.54% of total deaths. The age adjusted death rate is 86.80 per 100,000 of population ranking Guyana fifth in the world for deaths related to diabetes. Guyana is included in these statistics because the focus of this inquiry is on Guyanese women.

The WHO’s classification sets the standard for health care services when categorising the different types of diabetes. The WHO (2013) classifies diabetes into Type 1 and Type 2 and four other types that include genetic forms, drug or chemical induced and gestational. Type 1 Diabetes results from an absolute deficiency of insulin and more commonly presents before the age of 30. Type 2 usually develops in adulthood, normally over 40 years of age and is related to relative deficiency and or insensitivity to insulin (WHO 2013). It also occurs due to obesity, lack of physical activity and unhealthy diets (Wright 2010). For the purpose of this inquiry the focus is on Guyanese women living with Type 2 Diabetes.

Diabetes UK

Within the UK, the number of people diagnosed with diabetes is on the increase. The DH (2001; 2003; 2010) estimate that there are 2.2 million people with diagnosed diabetes in England and this figure is increasing annually. It is claimed that the increase in diabetes is due to rising levels of obesity and an ageing population living unhealthy lifestyles. As diabetes becomes more common in older people, vascular, neurological and psychological complications occur that will lead to loss of independence (Gregg et al. 2002).

Diabetes is also on the increase among BME communities. Compared with the white population, South Asian and African Caribbean people are respectively six and three times more likely to have Type 2 Diabetes (DH 2007b). Susceptibility to cardio vascular disease, retinopathy and increased mortality is higher among BME groups (DH 2007b).

The large body of UK and global literature regarding Type 1 and Type 2 Diabetes is predominately of a biomedical or physiological perspective. Type 1 Diabetes accounts for 10% of all diagnosed cases where regular insulin needs to be taken (Kumar & Clarke 2005). The cause of the illness is a fault in the immune system, where anti bodies attack beta cells of the Islets of Langerhans in the pancreas (Payne-Jackson 1999; Nair 2007; Kumar & Clark 2005). In Type 2 Diabetes, the pancreas is not working effectively so it fails to produce the right amount of insulin to maintain a normal blood glucose level (Capaldi 2007; Page & Hall 1999). Glucose is then built up in the blood; the onset is slow and is therefore not detected in the early stages of the condition.

Type 2 accounts for 85-90% of the population diagnosed with diabetes. It is more common in middle age and normally detected during the course of routine examination or investigation for another problem (DH 2010). Without visible symptoms, individuals do not perceive that they have a serious problem (DH 2010). Symptoms such as thirst, tiredness and frequency of micturition build up gradually. This means that at diagnosis, 20% already show signs of complications such as damage to the micro vascular system leading to kidney damage and loss of vision. There is also a higher risk of heart attacks and damage to the nervous system leading to injury, infection and the onset of gangrene with subsequent limb loss (Watkins et al. 2003; Page & Hall 1999).

Type 2 Diabetes can remain undiagnosed in individuals who lack awareness of the condition (Phillips 2012). It has been described as a complex and time-consuming condition. The individual needs to consider the necessary life changes, cope with the complexities of the condition, and make self-monitoring and education central parts of self- management. When living with diabetes, the DH (E) (2007) suggests that the individual learns to self-manage to improve diabetes control and increase their knowledge of the condition. Education and learning is therefore a key feature of the self-management programme as effective education enables individuals to manage their diabetes on a day to day basis. Self-management literature is referred to and critiqued in Chapter 3.

Development of diabetic services

Diabetic services have evolved from a medical model of provision where the hospital consultant originally assumed responsibility for the individual’s care rather than the GP. This changed when the GP contract was introduced and care was delivered by the GP and the PCT. Kirby (2002) summarises these developments and highlights some of the pitfalls. Since the 1970s, primary and community health care practitioners assumed responsibility for the routine review, monitoring and management of individuals with diabetes. Prior to the 1970s, a relationship of physician/patient existed but then shared care developed which was joint participation of hospital consultants and GPs in the planned delivery of care (Kirby 2002). However with the advent of the GP contract in 1990 and payment for chronic disease management in primary care in 1993, this brought a change in focus for diabetes care (Kirby 2002).

Whilst this shared programme of care was perceived as a key development in diabetic services, Kirby (2002) identified a number of disadvantages with this approach as no specific health care practitioner took responsibility for the individual’s care. Those practitioners working in primary care were not used to performing routine follow up appointments and lacked the expertise/ specialist education to give optimal care to the individual (Daly 2012).

Meanwhile, the National Service Framework (NSF) (DH 2001) produced the first set of national standards advocating a partnership approach to care for those with Type 2 Diabetes. This new framework required the health care practitioners and the individual to work together with the emphasis on collaborative care. National Institute and Clinical Excellence (NICE 2003) also published further standards that all individuals with diabetes should be offered structured education tailored to meet their needs and accessible across different cultures and geographical areas. In addition to the standards advocated by NICE, other self-management approaches for those with diabetes were offered, DESMOND based on the principles of empowerment and a partnership approach; and the Expert Patient. The aim of these programmes (DESMOND 2004) is to enable individuals to develop skills and confidence to manage their diabetes. However, whilst these developments were presented as significant changes to diabetic services, issues like poverty, disparity of access and cultural barriers remained unchallenged. Individuals with diabetes from BME communities have not yet engaged with these developments as these have not translated into practice (Stone et al. 2006).

NICE (2009) provided further recommendations for GPs and the wider NHS for the management of Type 2 Diabetes based on evidence produced by the WHO (WHO 2011) and the QOF. These recommendations used the WHO’s definition of diabetes as a starting point and a bench mark that every health care service should use to provide for individuals with diabetes (NICE 2009). This guideline offers best practice advice that takes into account the individual perceived needs and preferences. It is expected that people with Type 2 Diabetes make informed decisions about culturally appropriate and accessible care and treatment in partnership with health care practitioners. Families and carers should have the opportunity to be involved in decisions about treatment and care and give support. NICE (2009) guidelines also advocate good communication as essential, supported by evidence-based written information tailored to meet the individual’s needs. Services were given a choice to either adopt nationally developed guidelines and adapt such guidelines to reflect their particular circumstances or choose to have neither (Diabetes UK 2010). See Appendix 1.

Diabetes UK (2010) added advice to the NICE guidelines and identified specific issues that should be addressed in any GP practice guidelines. This included:

Prevention of Type 2 Diabetes

Identification and diagnosis of people with diabetes

Initial assessment and care at diagnosis

Initial and ongoing diabetes education

Provision of dietary advice

Continuing review of care

A newer report by the DH (2011) and Diabetes UK provided further guidance called Year of Care (YOC 2011) again emphasising shared care for those with diabetes. Kirby (2002) had previously discussed shared care developments during the 1990s however this form of collaborative working emerged again as YOC in a different guise. DH (2011) envisaged the YOC programme as a three year pilot setting out a diabetic pathway aimed to make consultation between people and clinicians a more collaborative process through personalised care planning and co-ordination. Care plans were intended to give the individual greater ownership of the management of their diabetes through joint decision making with health care practitioners. Whilst key achievements have been documented since this model was implemented in the north of England, there is no evidence to suggest that it has been implemented in the rest of the UK or the London area where this inquiry is situated.

In summary the majority of people with Type 2 Diabetes are treated by the GP and PCT (BMA 2012). The team agree the practice guidelines for the management of diabetes which clearly define the roles of each member. The practice nurse provides diabetes care but other available practitioners such as the diabetes specialist nurse, and podiatrists play an equally important role in working collaboratively with the individual. Within any diabetic service the integrated care pathway is the preferred model of care for those with diabetes clearly identifying that the individual is likely to need a wide variety of services during their lifetime (Young 2010).

Services now available to individuals with diabetes include quality initiatives which make services more responsive. A visit to a diabetic service in my local area reassured me that services have adopted the newer NICE (2011) care pathway guidelines (see Appendix 2.) with multi-disciplinary working, holistic assessment of need, information and advice and personalised care planning being provided. However, there is limited evidence that these local services meet the needs of BME communities presenting with their own cultural and health beliefs.

Cultural and health beliefs affect an individual, (Smith 2012; Greenhalgh et al. 1998) but cultural sensitivities may be overlooked by health care practitioners. Brown et al. (2007) discussed how the biomedical model of managing diabetes is still offered to everyone with diabetes regardless of health beliefs or culture. As previously mentioned, the model is based on an assumption that the body can be repaired like a machine (Nettleton 2006). Other social factors that impact on the person’s life are not always considered. Individuals may draw on other systems to help cope with their condition as part of their self-care model (Brown et al. 2007). Holdich (2009) believes that developing awareness is important in older people as they need to have a good understanding of their long-term condition to be sufficiently motivated to make decisions about their health. This can only occur if: health care practitioners are clear about their roles, regular contact is maintained, education is offered and care planning fits the local pathway/model of care (Holdich 2009).

This chapter has set the contextual background and rationale for why older Guyanese women who had migrated to the UK were selected for this inquiry. These women are a racially mixed group of individuals comprising East Indian, African, Portuguese, Chinese, Mixed and Amerindian about whom we know very little. Within official statistics, this diverse group of women is hidden among the African Caribbean community. The specific interest in them stemmed from reports that Type 2 Diabetes is a serious concern in Guyana plus female family members living with the long-term condition. These individuals who are living in the UK are ageing and Type 2 Diabetes occurs in an ageing population whose health care needs could become complex and difficult to manage. Official census data do not give either a realistic picture or the extent of diabetes within this BME sub-population group. This inquiry therefore seemed to be the ideal opportunity to give the women space and time to give voice to their experiences of living in the UK especially as there is a paucity of research regarding them and more specifically living with a long-term condition. However Diabetes UK (2012) suggests that there is a greater prevalence of diabetes in women from BME groups for example; diabetes is three times more likely in Black Caribbean women and two and a half times in Indian women when compared with women in the general population. This reinforces my rationale for why the diverse group of Guyanese women rather than men are chosen for this inquiry due to the high incidence of diabetes among BME women.

The WHO has influenced the direction of UK services, which DH health policies and NICE (2009; 2011) guidelines have built on to focus on the needs of individuals with long-term conditions and specifically Type 2 Diabetes. Whether these services are accessible to all, especially those from BME communities, is questionable and there are far reaching implications for health care practitioners adopting the suggested strategies for a partnership approach, sensitive to the individual’s needs, culture and beliefs, and willingness to change their lifestyle.

In Chapter 3, increasing trends of an ageing population, obesity, unhealthy diets and lifestyle changes that impact on an individual’s life are noted. There is a paucity of research regarding the participants of this inquiry placing reliance on international and UK research studies. This chosen literature provides an overview of the incidence, prevalence and risk factors of diabetes among BME communities.

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  incidence and prevalence,
  
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  diabetes complications,
  
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  cultural factors,
  
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  risk factors,
  
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  psychological issues,
  
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  living with chronic illness including diabetes and other long-term conditions such as arthritis, self-management,
  
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  compliance and non-compliance,
  
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  use of complementary and alternative medicine.
  

Search strategy and terms

The following databases were included in the search, BNI, Medline, Science Direct, Scopus, CINAHL. I commenced my inquiry in January 2010 and considered research articles from 1998 because I wanted to review a wide scope of literature due to the paucity of research on Guyanese people with Type 2 Diabetes. My initial search was on the general term diabetes. My initial hit when I selected diabetes revealed about 80, 000 articles on CINAHL. Then I narrowed it down to the UK but still obtained several thousand articles. I decided to refocus the search on Type 2 Diabetes and followed by diabetes and Guyanese people and UK. There were several thousand articles on Type 2 Diabetes but none on the combined search. I then restricted the dates to 2012 and added the search terms, Black and Minority Ethnic (BME) communities combined with Type 2 Diabetes. My rationale for extending the date was due to the limited research articles that studied Guyanese people with Type 2 Diabetes in the UK. Instead I located Scot (1998; 2001) and Brown et al. (2007) who studied African Caribbean people and Type 2 Diabetes; these were considered to be relevant for the inquiry because Guyanese living in the UK are linked with this specific BME community. In my later searches that concentrated on international studies on BME groups with Type 2 Diabetes, I discovered Back et al.’s (2012) study that focused on Guyanese people with Type 2 Diabetes living in New York. I decided to refocus my search to include Type 2 Diabetes and complications along with original terms such as BME groups; this showed 140 published articles but not all of them were research studies. I reviewed (Lusignan et al. 2005; Forouhi et al. 2007; Massó González et al. 2009) from these later selected articles that discussed incidence and prevalence of diabetes because the Department of Health literature and Diabetes UK commented on the increase in Type 2 Diabetes among the BME communities. (Refer to Table 1 on page 41)

The search was subsequently narrowed down to literature on Type 2 Diabetes in BME communities in the UK. Other databases were used to access further research articles. The OU one stop search identified 10,771 articles but many of them were American and international studies. At that stage I was more interested in the research studies conducted in the UK but took the decision to include BME studies on diabetes in the rest of the world. Other key words were then used for example, Type 2 Diabetes and health beliefs; psychological issues including; depression, use of complementary and alternative medicine and self-management. The emerging literature on diabetes from (Lloyd 2010; Pouwer et al. 2010; Lloyd et al. 2012) showed a prevalence of mental disorders particularly depression. Lorig’s work on self-management is referred to because she has contributed to a large body of knowledge on self-management of arthritis but the individual’s voice was missing from her material. To capture the missing voice, I examined Koch and Kralik’s chronic illness research programmes who researched alongside women and men living with long-term conditions mainly in Australia. I was interested in PAR and their application of that approach to those with long-term conditions as discussed in Chapter 1.

In addition to these sources, I explored grey literature including Government publications on diabetes and consulted with experts in the field regarding action research who attended the ALARA (Action Research Congress) in Melbourne in September 2010. Other sources accessed included Diabetes UK and internet search engines including Google Advanced Scholar. Following analysis of the primary data, additional searches were undertaken to help contextualise the emerging findings. I also searched the reference lists at the back of journals and reviewed the content of the diabetes journals such as Diabetes Care, The Diabetes Educator and Patient Education and Counselling to obtain relevant research articles for the inquiry. The table below summarises the searches that I undertook.
Table 1: Summary of the terms

Search Engines	Key Words	Number of papers	Selected papers reviewed	Included in review
CINAHL	Diabetes	80,088	140 (Type 2 Diabetes)	13
OU one stop search	Type 2 Diabetes and Minority groups and UK	10,771	20	4
CINAHL	Type 2 Diabetes and depression	19,438	13	11
OU one stop search	Type 2 Diabetes and African Caribbean and UK	52	6	4
British Nursing Index	Type 2 Diabetes and BME groups and UK	20	4	4
British Nursing Index	Type 2 Diabetes and self-management	56	27	21
Scopus	Type 2 Diabetes and lay beliefs	82	10	8
Google Scholar	Type 2 Diabetes, ethnic minority and CAM	6320	10	7
Google Scholar	PAR and chronic illness and women	17,100	30	11
Total			260	83