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

Shirley spoke at length about life in Guyana, coping with diabetes, work and the service received from the GP. She is an articulate middle class woman with two adult children, a son living with her and a daughter with her own flat. Shirley was head of department at a local school before she retired. During her interview she disclosed a significant amount of personal information regarding the relationship with the husband she divorced.

When I explained about involvement in the PAR group, Shirley expressed reluctance because she had many hospital appointments and helped with another group, genuinely feeling she could not contribute much. I left it as an option and explained the transcript will arrive by post for her comments. We agreed for me to contact her in a few days.

During a long telephone conversation, she felt her transcript was a true record of the interview. I followed up with her storyline on the phone in which she showed strengths in managing her condition ensuring regular check-ups at the GP and accepted her responsibility to get them. Before diagnosis her eating was erratic but has a regular diet now. Shirley acquired a lot of knowledge about her condition through literature. Religion and prayer plays a significant role in her life. Exercise has been an issue due to her sciatica but she managed to walk regularly as a result of a physiotherapy session.

Shirley decided she no longer wanted further telephone contact but gave permission for her interview to be used in the inquiry.

Reflection

I felt more confident in this interview with an assertive lady leading a busy life. Shirley responded warmly sharing a lot of personal information. I asked more exploratory questions which elicited more expansive answers. It was clear she was managing her diabetes. When telling her about the PAR group she became hesitant and responded saying “she is busy and had many hospital appointments”. I did not put any pressure on her respecting her right to refuse and brought the meeting to a close by encouraging her to ask any further questions.

Rather than spending time encouraging Shirley to attend the group, I maintained contact until it was clear she was not interested and decided to walk away. It was a reminder that not everyone is interested in joining certain groups even with the same cultural background. I have had to reassess assumptions made during this inquiry but my experience with Jane prepared me to walk away sooner.

Agnes’s storyline

The day I arrived to interview Agnes, a pleasant, charismatic lady who received me warmly, she commented that it was the first anniversary of her husband’s death and was very tearful. She spoke at length about this as she missed him greatly. Her son has Type 1 and husband had Type 2 Diabetes. Agnes believed she should have noticed her symptoms so her diagnosis was a shock. Agnes said that she received good care from her GP clinic, the practitioners were attentive but she needs more information about managing diabetes. She has read about it and had an induction course. Agnes showed self-management strengths; eating a healthy diet, taking medication regularly, using herbs and contacting the diabetic specialist nurse with any problems. When I talked about the group Agnes was attracted to the idea of sharing information with like-minded women and believed she had much to contribute to the sessions.

She did not suggest any changes to her transcript. Due to her spending time abroad we had several telephone conversations rather than home visits. Agnes talked about life in Guyana working for Prime Minister Burnham during the late 1960s and 1970s which she thoroughly enjoyed before marriage and coming to England. She recalled positive experiences working with the council in London until retirement three years ago. She missed her colleagues who still visit her occasionally. Agnes is very involved with the London Guyanese community playing a key role in organising activities. Her health suffered since her husband died and she was admitted to hospital for an angiogram and heart related issues. She sustained a needle stick injury which would not heal so was referred to the physiotherapist for further treatment to encourage movement in the finger. Asthma too became a problem so she was prescribed an inhaler.

Agnes was away in Guyana and America for several months during the inquiry to arrange her husband’s affairs and visit her twin sister who also has diabetes. We communicated again on her return in February 2012. She had had frequent falls whilst abroad which her GP felt may be linked to a hearing problem affecting her balance. She said the diabetes was stable but the GP had increased her Metformin and advised the same diet.

During an in depth conversation a month later Agnes highlighted more physical problems. She was walking with a stick, has glaucoma in both eyes with no vision in the left and an eye injury from walking into walls. She arranged to see the diabetic specialist nurse about weight fluctuation and the GP will investigate her physical deterioration.

Despite the complications, Agnes continues to self-manage her condition which she states is under control, and remains active with the Guyanese community.

During the interview and seven conversations with Agnes few questions needed to be asked. She spoke openly about her problems and the loneliness following the death of her husband despite a busy lifestyle. I felt more confident with the PAR process so could reflect more. Occasionally I slipped into a counselling role when an individual was upset but realised empathy was required to develop the relationship.

Agnes made every effort to manage her condition in spite of her issues and complications but needed more knowledge and information, some of which she got from PAR group sessions and I sent her information when she could not attend. I recommended ‘Balance’ magazine which the other women subscribed to for articles and current information on diabetes.

Jillian’s storyline

Jillian was keen to talk about her life even before I turned on the recorder so I did not need to ask any questions. In her home setting this middle class lady wanted to share her innermost thoughts and experiences with me, developing a trusting relationship from our initial meeting. Jillian lived a diplomatic life for several years, some in Guyana but mainly in England. When her husband travelled alone to assignments she mostly remained in England with their four children, twin girls and two boys who keep in regular contact with her

Jillian married in 1961 in Guyana but after the first year realised her husband wanted to control her which resulted in a very turbulent relationship causing a lot of stress for her. She remained married for fifty one years because of the time and money she had invested in it. Her husband died from Alzheimer’s disease in February 2011.

Jillian’s diabetes was discovered by chance as she did not notice any symptoms. Although husband, daughter, sister and parents had it she was surprised to be diagnosed. She keeps to a diet, takes prescribed medication regularly, Beretta to help lose weight and has regular check-ups at the hospital diabetic clinic. She showed strengths in taking control, managing the condition and in later months keeping up to date by reading the Balance magazine. In the follow-up phone conversation she felt the transcript was a true reflection of what was discussed so I then sent her the long story.

During four visits she talked more about the diabetes and on the anniversary of her husband‘s death shared her feelings that she missed him. Jillian felt sad after being together for so many years. The children were very supportive and choral singing served as a distraction for her. She continued to lose weight.

The hospital diabetic service referred Jillian back to the GP in March 2012 which she accepted but admitted that she has had to learn to live with diabetes. During a body massage and Reiki the complementary therapists noticed problems with her chest. She was referred to the hospital and told she had a slight heart murmur but the X-ray was clear.

Jillian also had problems with an ankle, causing severe pain which the consultant diagnosed as an inflamed tendon. It has been suggested she should use a stick for balance and a boot is being made to support her foot.

Reflection

On reflection the interview was carried out in a small dining room on a very hot day with the window closed against traffic noise, but the stuffy environment did not affect the interaction. I could have suggested that we moved to the lounge but I was so surprised in the way she opened up to me, did not want to disturb the positive dialogue that had been created. She seemed desperate to talk therefore I just encouraged her and listened. I felt very comfortable and at ease with this woman in this setting and it was one of my better interviews even though it focused more on relationships than diabetes. She talked extensively about her life in Guyana and early life in England, with gaps filled at a later date. Jillian was keen to join the PAR group and host the sessions.

Constructs

As discussed in Chapter 5, eight women were interviewed, talked about their experiences of living with Type 2 Diabetes and the impact the condition has had on their individual lives, earlier memories of life in Guyana and when they migrated to the UK. The stories were analysed and I then compiled a list of all significant statements from each of them and wrote up the commonalities between these participants’ long stories as constructs. In other research clustered text, commonalities or constructs might be called ‘findings’. For the purpose of the inquiry I will use the term ‘constructs’.

Thirteen constructs were derived from the one to one interviews (see Appendix 10. for full analysis). These were:

Diagnosis – the women conveyed various experiences in receiving a diagnosis with three of them experiencing delay even with a family history

Symptoms of Type 2 Diabetes – nearly all of them were experiencing symptoms such as dizziness and drinking copious amounts of fluid except Jillian and were aware of them but the presenting symptoms were largely unrecognised by their GP

Family History – nearly all of them had relatives including parents and siblings with diabetes

Gathering information – there was a lack of clarity regarding the information sought or obtained as some of the women appeared to be misinformed

Self-management – focused on self-management of diabetes including the use of alternative therapies

Expected lifestyle changes – the women were learning to live with diabetes and lifestyle changes meant a readiness to disengage from old habits

Complications – all the women were experiencing complications possibly as a result of hypoglycaemic episodes

Religion/faith – played a key role in helping the women cope with diabetes

Depressed/low – they all experienced changes in mood as they considered diabetes to be an incurable condition

Stress and diabetes – the women believed stress influenced their diabetic state

Being Guyanese – they all talked about their previous lives in Guyana in glowing terms

Preoccupation with food – they loved to eat and loved their traditional food

Maintaining contact with the Diaspora was a survival strategy

The first construct derived from the interviews is diagnosis. Vera, Marjorie and Shirley experienced a delay in diagnosis as their symptoms were ignored by the doctors. Marjorie “thought she had this thing” because she was drinking two litres of cola in half a day but failed to obtain a correct diagnosis despite making several visits to her GP. She said “I went to the doctor and informed him that I was pretty certain I am diabetic but the doctor thought I was a hypochondriac”. He said “no you are not even though I had been going there every month”. This could be perceived as negligent practice as both Marjorie and Vera waited six months and eighteen months respectively before they were diagnosed. Evidence suggests that even though diabetes management in primary care has improved in more recent years, there is still variability in standards, “an estimated 14 percent of the number of individuals with diabetes in England remains undiagnosed” (Goodwin et al. 2010:53)

Marjorie and Agnes experienced shock when they received the news that they had diabetes and the devastating effect receiving bad news can have on an individual is captured in this quote from Marjorie. She said “I came out of the clinic screaming and crying because the two things I would never want to have is diabetes and AIDS” but realized that “you learn to live with it”. Agnes reacted with resignation to living with the condition although initially shocked by the news even though she had cared for her son and husband with diabetes. Jane, Agnes and Bea, whose family members had the condition, were prepared to some extent as they regularly checked with their doctors to enquire if they had the condition and were trying to manage their diet and weight. Diabetes UK (2009) sums up the mixture of feelings that an individual can display when given a diagnosis, shock and anger can occur but some may not show any reactions at all.

Delay in diagnosis was not therefore uncommon among the women. It seemed their voices were not heard. Shirley said “unfortunately doctors are blinkered”. In contrast, Agnes, who was recently diagnosed, experienced very good follow up care.

It is expected that an individual with diabetes will present with certain symptoms for example, dizziness, blurred vision, drinking copious amounts of fluid and feeling tired prior to diagnosis. In this second construct, nearly all the women experienced these similar diabetic symptoms but Vera’s were quite severe as she was ‘drinking everything’ and she had put on half a stone which was contrary to Bea and Agnes who were losing weight. Marjorie experienced similar ones which were treated lightly. It was only when she nearly went blind that some action was taken by her doctor to treat her condition.

Bea noted feeling dizzy after work and attributed the symptoms to her exhausting work schedule as a midwife which her doctor failed to recognise. Jane said she had no symptoms but in her interview highlighted the night sweats. Following a consultation with her doctor, she discovered that she was experiencing hypoglycaemia which evidence (MacArthur & Gibson 2012) suggests is a serious and life threatening complication that occurs when the blood glucose levels drop very low.

Shirley attributed not feeling ‘right’ to her job and only after consulting her doctor several times was informed ‘we have a result now’. Agnes noticed feeling dizzy with blurred vision when walking but unlike the others claimed her doctor investigated immediately. Jillian mentioned that she had no symptoms but when describing her loss of weight to a family member with diabetes was advised to see her doctor immediately. She seemed unaware about what was happening to her. This construct raises serious concerns regarding two issues.

Firstly some genuinely recognized that something was wrong but could not get a proper diagnosis from health care practitioners.

Secondly those with symptoms failed to recognize there was a problem.

The discussion around this construct will be further developed in Chapter 8.

Family history

Shock accompanied the diagnosis yet most should not have been surprised as they had a significant predisposition to the condition with various family members diagnosed with diabetes (Talmud et al. 2010). Family history became the third construct. On reflection Vera realized that her father and cousins may have had diabetes but never admitted it. Her father referred to it as ‘a touch of sugar’. She felt she was probably prone to diabetes from an early age as she had hives known as ‘mad blood’, a term used by Guyanese when eating anything sweet.

Bea claimed she came from a diabetic family, paternal grandmother, father, uncle and her father’s niece. Jane’s father and grandparents died from the condition and when the GP diagnosed her as borderline she attended exercise classes and tea dances to keep fit. Pam’s five sisters have diabetes and mother and grandmother died from it. Agnes could not recall a family history of the condition except for her son with Type 1 Diabetes, her husband developing Type 2 Diabetes in later years and a twin sister who now has it. Jillian’s husband, parents, sister and daughter have diabetes. The evidence indicates a genetic component linked to Type 2 Diabetes. This evidence will be explored in the discussion Chapter 8.

Gathering information

The information the women received was lacking in clarity and was not considered to be of a culturally acceptable standard. Gathering information therefore became the fourth construct. Only one woman attended the local health service diabetic education classes. Others searched the internet and talked about alternative therapies. Shirley said: “sweet things do not have anything to do with diabetes, it is another myth”. Whilst individuals with diabetes can have some sugar this statement is dismissive of its relevance and need for monitoring.

The women sought information from various sources which did not assist them in obtaining all they required. Even though Vera, Jane, Shirley and Jillian subscribed to the Diabetes UK Balance Magazine they each used the magazine differently. Vera found it interesting but not for information regarding her condition. She complained she had not received any diabetic education sessions but admitted that she tried to work things out for herself and do her own research, claiming “she spoke to the nurse every six months”, who carried out routine monitoring. Jane said she was too busy to read the magazine. Shirley read the letters in the magazine and believed that doctors were blinkered and did not always consider the co-existing complications. She claimed to make every attempt to keep informed via her scientist son or reading her favourite text on diabetes and believes that “certain things are beyond one’s control”. Jillian got the magazine, initially did not read it but does now and supports Diabetes UK through raffle ticket sales and getting in touch when she needs to. It seemed that the women found it difficult to make the appropriate contact with the health care system to meet their information needs.

Marjorie compared Guyanese and English attitudes to the diabetic diet. The differing guidance offered to individuals from both countries was raised and Marjorie questioned the advice given to those with the condition in Guyana. Pam admitted having lots of health books and information from the diabetic course. She talked about the benefits of the course being instrumental in helping her to choose foods she could eat. Bea was aware of the foods to be avoided for a balanced and healthy diet. She identified what caused an hypoglycaemic coma when taking insulin but had never experienced one. Acquiring knowledge and information in diabetes is important because it helps the individual to take control of their condition through self-management. The evidence will be discussed in Chapter 8.

Self-management, the fifth construct, focuses on complementary and alternative therapies and taking control of diabetes. The women self-managed their diabetes with a range of methods. Pam recounted her mother using herbal medicine to improve her eyesight and diabetes but there is no evidence to support this except that she saw a qualified practitioner. It is unclear what type of practitioner; however Pam regularly takes herbal treatments which she believes make a difference to her experience of living with diabetes.

Bea also talked about herbal preparations she used alongside insulin treatment such as Malaysian beechnut, karela tea made from a Guyanese fruit and cinnamon. Agnes’s husband and son regularly drank herbal remedies to treat their diabetes and encouraged her but she is rather sceptical about them. When her pastor suggested that she drank okra juice she only took it once. There is evidence to support BME groups using herbal treatments alongside prescribed treatments so this data is not new and is associated with beliefs about herbs having curative properties or improving quality of life (Hunt et al. 2000). The evidence is discussed in Chapter 8.

Self-management has an expectation that people will take control of their lives. Whilst the women recognised this, there was a wide variation in ‘taking control’ and decision making about healthy eating. Some knew what a diabetic diet should consist of and foods to avoid. Others ensured that they had regular check-ups and monitored their diabetes. Knowing how to navigate the services and seek support and guidance for their condition was an issue for majority of the women.

The sixth construct refers to expected life changes. The women vividly recalled that when diagnosed they would change their lifestyle, closely watch food intake and take regular exercise but there was variation among them in taking up these behavioural changes. My understanding is that being able to make lifestyle changes is dependent on readiness to change (Prochaska et al. 1994). Readiness means disengaging from old habits and behaviours. One way to assess whether they had changed their behaviours is to explore the lifestyle changes made. Few had an exercise plan; only one maintained a log book and monitored glucose regularly. They claimed changes in their eating programme but most were still overweight. Three used walking sticks for support as arthritis was experienced as co-morbidity. Perhaps limited mobility is a reason why routine exercise is difficult to plan.

The seventh construct refers to complications experienced by the women, possibly as a result of the hypoglycaemia episodes. Hypoglycaemia can be caused by insulin, exercise, food (specifically glucose containing carbohydrates) being too much or incorrectly timed (MacArthur & Gibson 2012). However Bea is aware that she has Type 2 Diabetes as she said “I know it is a progressive disease but you learn to live with the complications. It affects all your organs in your body such as your kidneys, eyes and feet” but for some of the women their management of diabetes is less than adequate or due to the progression of the disease.

We did not gather biomedical data so can rely only on stories told. It was concerning that the women’s diabetes appeared advanced. The women experienced several complications for example retinopathy which occurs as a result of persistent high levels of glucose that can cause damage to the eyes. Neuropathy is another complication that affects the nerves in the body leading to tingling and numbness and cardiovascular disease or diseases of the heart. Three women had hypertension and high cholesterol that can affect the heart. These and other complications were also discussed in the group sessions which will be addressed in Chapter 8.

Religion/faith

The eight construct is about the spiritual perspectives that play an important role in the women’s lives. Religious beliefs seemed to help the women to cope with their condition. Two women converted to Buddhism and chant when faced with stressful situations while others attend church regularly. We should not underestimate the power of spiritual beliefs and the effects it can have on the individual when faced with a life threatening situation. As one woman put it “I believe you can cure anything because I’m a Buddhist and we have a great faith that the body can heal itself”. Bea who is a Buddhist believes faith helps her “to come to terms with my diabetes”. Shirley: “prays” when she needs to and finds it a great comfort. Agnes believes that “the church and God is keeping her in good health”. This construct is discussed further in Chapter 8.

As discussed, my background as a Mental Health Nurse meant I was finely tuned to psychological disturbances. The women often described themselves as feeling depressed or experiencing changes in mood that they attributed to living with diabetes as an incurable chronic condition. This was construction number nine. Two expressed sometimes feeling low about their diabetes rather than having a full blown depression particularly when they felt they were self-managing but their glucose levels remained high. Shirley experienced “quite a low unexplained feeling” but did not identify it as depression. Agnes admitted that she was not depressed but feeling lonely because she was missing her husband who had recently died. Jillian expressed feelings of sadness and loss for her husband who died in a care home but was still coming to terms with the loss. Depression emerged again in the group sessions as the women explored their feelings in more depth. The evidence is discussed in Chapter 8.

In the tenth construct, speculation about the cause of diabetes was rife with most women agreeing stress was a strong precursor. Vera, Bea, Marjorie and Shirley wondered if stress had caused their diabetes. They recalled stressful episodes in their lives and made connections with the appearance of symptoms. They commented on whether stress associated with their jobs was a trigger. Bea was pleased when asked to retire as being a midwife was challenging. She acknowledged that “stress can have an effect on you” as she found “midwifery very stressful because it is not one life, you have to think about but two: the baby and the mother”. Bea made a serious attempt to lead a healthy life but still developed diabetes. She felt “stress may be one of the triggers for her diabetes in combination with my genes”. The association of stress with diabetes warrants further investigation in Chapter 8.

It is not unusual for migrants to talk about the country they left years ago in glowing terms. All the women gave glowing accounts of ‘back home’. Their lives changed dramatically when they left the tropical warmth of Guyana for England. As middle class women they led privileged lives and being Guyanese was important to them. This was number eleven in terms of constructs. Most experienced a reversal of class and for the first time being referred to as women from a BME community. As one women said “one notice on the door said coloured people and dogs were not welcome”. Some of the women faced discrimination when they came to the UK which they did not expect and the standard of living changed significantly for some. Jillian sums this up in her quote. She said “we arrived in November and it was cold … then I got chilblains. It was horrendous but then I lived in a flat and I had never lived in a flat before”. Given the circumstances, it would be easy to understand them seeking comfort in each other’s company and enjoying traditional comfort food rich in carbohydrates and fat. Many transitions have been made with migration being one of the biggest, but coming to terms with diabetes and learning to self-manage their condition involved lifestyle changes. In our opinion this was achieved with limited success and I postulate that resistance to a complete change in lifestyle was cultural.

The twelfth construct is the women’s preoccupation with food. Most of the stories told were about food and their relationship with Guyanese food. All the women talked about traditional foods and although they claimed moderation in quantity and frequency food was foremost in their minds. Lifestyle and diet changes represented a big challenge. Shirley admits that she has lost the taste for a “proper Guyanese diet but sticks to cassava, plantain and rice”. Bea found that she cannot “eat too much rice because that really increases my blood sugar level”. Marjorie had made a lot of changes to her diet, she said “now I eat greens and proper portions, the other Guyanese foods I eat are black pudding, pepper pot, garlic pork, ‘metemgee’ and ‘chow mein’ but that is healthy because it is vegetables and noodles”. Pam preferred “a lot of leafy green vegetables and water based fruit because that is what the body needs”. Jillian loved “a Guyanese dish of cook up rice with black eye peas or with split peas and curries are some of my favourite dishes”. The Guyanese diet is discussed in Chapter 2.

The thirteenth construct refers to the women maintaining contact with the diaspora as a survival strategy. The majority joined the PAR group because other Guyanese women would attend. However there is some inconsistency with this viewpoint because two women chose not to attend even though they knew like-minded Guyanese women would be present. Marjorie said “as Guyanese living in England we tend to stick together”. They have a profound loyalty and travel long distances to be with each other and maintain contact with Guyanese in Canada, USA and Guyana. One said “I have a lot of support from Guyanese friends whom I talk to regularly”. Jane admitted that she is “a very active person in the Guyanese community and supports the Guyanese High Commission”.

The focus of this chapter has been on one to one storytelling interviews. The women were given opportunities to tell their story within a safe environment in their own home. I achieved my aim in this inquiry as I listened to the women’s voices and privileged their storytelling.

The women’s stories were analysed and constructs identified for similar commonalities in experience but with a measure of difference in how they learned to live with diabetes. Thirteen constructs were derived from the one to one interviews. From these constructs I felt that the key issues emerging from the women’s stories included how they felt powerless when they tried to obtain a confirmed diagnosis of their diabetes; it seemed their voices were not heard. As majority of the women had either parents or siblings with diabetes, the evidence within the literature review suggests a genetic disposition towards developing the condition. Other lifestyle factors such as age, being overweight and lack of exercise may also cause an increased risk.

Although the women exhibited the symptoms of depression and stress, these problems were largely unrecognised by their GPs among this BME community. They demonstrated a thirst for information yet what they gathered from different sources failed to meet their needs. There were noticeable gaps in their knowledge and understanding of their condition relating to diet and lifestyle and when self-managing their diabetes, the women did not rely on the biomedical model of treatment. Instead they used CAM with their prescribed medication.

A more empowered and collaborative approach of diabetes education, sensitive to the individual’s needs seems to be required as these women from this BME community under-utilised various models of self-management such as the “Expert Patient” and DESMOND. Coming to terms with diabetes still remained a significant issue for them as they learn how to live with this long-term condition.

See Table 3 (p138) that summarises the interview constructs and corresponding exemplar quotes from the participants in the inquiry.

In the next chapter I will discuss phase two of the inquiry which is focused on researching alongside the participants in the group guided by the principles of ‘looking, thinking and acting as an iterative process.

Chapter 7