A participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England
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- Pam’s storyline
- Ongoing dialogue and reflections
- Bea’s storyline
Ongoing dialogue and reflections Marjorie is a bright and astute lady from a wealthy Guyanese background. Her lifestyle radically changed when she came to England. Unlike Vera she was satisfied with the transcript and did not request any changes to her long story which my supervisor assisted me with using the PAR analysis framework. I visited her on four occasions. Marjorie admitted that she ate whatever she liked but following the first interview she reflected that her eating habits and lifestyle needed to change. She now mainly eats salads and olives plus a small amount of carbohydrate. She had a long list of physical problems from swine flu in December 2010 despite being vaccinated, followed by investigations to small and large intestines during 2011/2012. Substantial weight loss was a worrying time as she suspected something more serious but this stabilised during the latter part of 2012. Marjorie’s ex-husband had diabetes so she is concerned one of her daughters may acquire the condition as she is overweight. She told me that she has a good relationship with two but not with the third child and plays a key role in caring for her grandson. One of Marjorie’s issues is dislike of any form of exercise. She attempted to go for a walk but found it painful, however is aware of the need for regular exercise. Another issue is her immense dissatisfaction with the diabetic service from her GP and she had to demand specific treatment. This made her more assertive in obtaining the care and treatment required. Marjorie agreed to join the PAR group and host the sessions. Reflection The interview with Marjorie was the second supervised storytelling episode during my apprenticeship phase. I felt more prepared because I had given more thought to this interview. I brought the consent form and study information with me but on reflection should have posted it beforehand to give the participant time to peruse the material. Marjorie signed the paperwork without any hesitation. I felt that there was an improvement and development in my interviewing skills because I was thinking through the entire process and reflecting on the questions I should be asking. Tina, my supervisor enabled Marjorie to expand on issues within her story that I had difficulty with. This was a very skilful way of interviewing and she served as a good role model for me. It was a good comparison of the experienced researcher and the novice learning the ‘trade’. Tina rewarded Marjorie’s strengths in self-managing. I found myself echoing Tina’s comments and rewarding Marjorie for the positive actions taken. I reflected on the lack of diagnosis and support received from the GP. Although we had interviewed two women to date, a pattern seemed to be emerging where health care practitioners had not recognised or responded to the women’s symptoms despite help being sought on many occasions. Why had these women not been listened to? They all see their GPs frequently so why were they ignored? Is this a racial question? In subsequent interviews I would pay attention to the relationship between ethnic minorities (Guyanese women) and GPs. I realised that I needed to refer to the literature to see what had been written. On the other hand the women were diagnosed many years ago and one would hope the diabetic services and responsiveness have improved. These questions were on my mind as I proceeded with the inquiry. In four subsequent conversations with Marjorie, I learned more about Marjorie’s relationships with her daughters and step sisters in Barbados. I heard more about the management of her condition without the diabetic service support. A few months later it appeared to be a good sign that Marjorie had started searching the internet to increase her knowledge and understanding about diabetes. She also wanted to know which services were available to her. Pam’s storyline My diabetes was first diagnosed in October 2006 but I am coming to terms with it. My mother had a similar condition for 20 something years. I have always eaten in a certain way to avoid getting this chronic illness. I managed to do that until 2005 when I had an accident. I fell off the bus and was on crutches at home. As a result I had carers coming in who bought packet foods because I could not prepare the sort of food that I would normally eat. I have always eaten healthily and taken alternative medicines so to me it is surprising that I have problems now. When I was originally diagnosed, my blood glucose level was just a little over twelve so I made a firm decision to bring it down within the normal range. I had a very wonderful nurse at my surgery who gave me a machine that checked the blood glucose levels. I wrote down in a little book every day what I ate and brought it down to just over six. I also have lots of health books that I read to educate myself about my health and what to eat and not to eat. In addition I also had arthritis and fibromyalgia before I was given a diagnosis so I was receiving treatment for these conditions and taking alternative medicines. Getting diabetes was something extra that came along. I manage my diabetes with assistance from the diabetic nurse with whom I meet every six weeks. I meet with my nurse and show her the completed booklet. She gave me a list of low Glycaemic Index (GI) products. I realised that eating healthy foods like croissants and bagels are not low GI products. I eat pitta bread and Naan bread which are considered to be GI low. I have never eaten a lot of meat or fat so it was much easier for me to manage my diet from 2006 to 2007. Before 2007 my blood pressure was high but I did not want to take any more tablets so I said to the nurse ‘I’ll bring it down’. I then went to Guyana, and while there decided to eat healthy foods in order to bring my pressure down. Unfortunately lowering my blood pressure did not happen. The journey was rather difficult because I stayed with a friend in the Pomeroon and we had to travel over land and then by a boat crossing quite treacherous waters in the Atlantic Ocean. I prayed all the way. I was chanting because I am a Buddhist and covered my head with the tarpaulin so I could not see the waves. If I did not have my faith I probably would not have survived that trip. I ate healthily while I was there but when I came back I had to go on tablets because the blood pressure remained high. I was not very happy with this decision. In terms of my medical management, originally I started with two Metformin, one in the morning and the other in the evening. I don’t really like taking tablets, but I took them because I realised the kidneys and all your organs in the body are affected by diabetes. I knew a lot about this condition because of my mother so I took these medications. My doctor has been very good because he monitors my diabetes. I have blood tests every six weeks and have just had one recently. However I am going to go to see him to ask about the testing equipment. I shall say to him ‘look I have to do the testing because the test is what keeps it down’. Then I will wait to see what happens. I feel that I have experience in self-managing my long-term conditions because I have managed my arthritis without taking any tablets. When I developed diabetes I was already taking Amitriptyline for the fibromyalgia. I always managed that condition with herbs because I buy them along with aromatherapy oils. With regard to the diabetes, I regularly check my glucose levels with testers but I’m worried that I will not be given anymore equipment. The GPs have stopped giving these testers and needles but I feel I can only manage my diabetes if I continue testing the glucose levels. It is too expensive for me to buy so I should really have it on prescription because I am on a pension. But coming back to the diabetes, I’m not really worried about it because my mother had it when she was in her fifties and she always managed it with diet. She lived with it for a very long time. I suspect that they did not have the knowledge we have today about healthy eating so they ate different things but she ate healthy foods such as salads with lettuce and tomatoes. She died at 80 possibly because her kidneys packed up and she did not want to do dialysis. However diabetes had affected the eyes. She went into hospital and had operations on both eyes but the surgery was not that successful therefore she was given a white stick which she never used. She then sought help from an alternative practitioner who is a qualified doctor called Nigel. Nigel gave my mother herbal medicine that improved her eyesight and her diabetes. I firmly believed this medicine gave her extra years of life. She could not walk due to problems with her legs that gave away while walking. She visited her GP who informed her that the cells in her feet were dying and legs may have to be eventually amputated. She consulted Nigel who gave alternative medicine for another fifteen years or more and my mother continued to be mobile. She went abroad to Paris, walked everywhere without the white stick. She also read with her magnifying glass. I believe you can cure anything because I’m a Buddhist and we have a great faith that the body can heal itself. Buddhism teaches you about the body and through the power of prayer you can heal anything. I have been a Buddhist for twenty four years and it works. I used to have a diary to manage my diabetes and wrote a page every day but decided this year that I would take control. I was not going to do that. Nonetheless I have recorded so much information that I have had to go and buy additional pages because I could not fit everything in one diary. When I was working as a secretary I had my diary for my boss and kept his appointments. Now I have a diary which is not how I intended to spend my retirement. I was going to have fun, fun, fun but now I use it to record when I take the tablets. With regard to my ongoing other health concerns fibromyalgia and arthritis I have self- managed these really well. I have recently had a knee replacement in January. Before I was admitted I took prawns to build up the immune system. By the third day after the operation I was pretty mobile going to the toilet from then on. I have never looked back. After a few days I was walking and going up stairs so I was discharged quite quickly. Since I have been discharged I have only seen the physiotherapist a few times. I continued to eat healthy foods whilst in hospital. I did not eat any cakes, dairy products or sugar because it’s not very good for healing. I lost a stone after a month. It was a quick recovery and when I saw the specialist she was impressed to see that I was walking so well. I would like to talk about my Western diet and compare it with food I ate in Guyana. I never agreed with tampering with food so I only buy organic eggs. I watch what feed they put in it and always check and read labels. If it’s like margarine or something like that and it has got 10 things, I always think ‘why has it got 10 things? It’s only oil and something”. I also attended a six weeks diabetic prevention course which provided information regarding certain foods that black people eat like sweet potatoes. I also heard that green paw paw is good for you. I try to have a lot of leafy green vegetables and water based fruit because that is what the body needs, more water. I drink a litre a day of bottled water and I put about half a litre in my kettle as well. I have my list of foods that I avoid for my arthritis. These include potatoes, tomatoes, aubergines and green peppers. Occasionally I am late with eating and taking my tablets for my diabetes but I do not worry because I know I can take care of myself. One of the best things I attended was my six week diabetic course because they gave me a book and the course was really instrumental in helping me to identify the foods that I could eat. In the course we discussed the medicines that are prescribed. Then we were escorted to the supermarket and the nurse showed us the reading on the bottle of oil. We identified mono and poly unsaturated and highlighted what you should look for when shopping, the one with the least saturated fat. Those were the things I have learnt. I always read the foods labels. In Guyana we ate very well and were quite healthy although I had a very English upbringing with a beautiful home, lovely cushions, table cloths, china, silvers and lamps. Our family socialised with many different nationalities such as Portuguese, Chinese and White. My grandfather was a doctor so my father knew a lot about medicines because he used to help with the prescriptions. We regularly took medicines like Scots Emulsion, cod liver oil, cascara or castor oil, senna pods and everything, and we ate vegetables, fish and meat My father would make us cough mixture, honey, glycerine, and would tell us, ‘if you keep your stomach clean you’ll never get sick’ so I have held on to these beliefs. When Cheddi Jagan was elected, we had the riots in 1961/62. This change in government brought a different set of communist values so we all decided to leave. None of us wanted to leave our country but my parents were concerned for our welfare. I left originally with two of my sisters but my dad was already in England. My mother and younger sisters left Guyana the following year and we all lived in Kent. My mother returned to Guyana a few years later with my youngest sister when a change in government took place. Another two sisters returned but they could not settle due to the political situation so they all eventually returned to England. I have a lot of support from Guyanese friends. I talk regularly to them because everyone is now retired and they have free time, We just talk about when we were teenagers, the boys and parties and life in that period of Guyana which was really wonderful. No, we had a wonderful life in Guyana didn’t need to leave. It can never be repeated, and my sisters struggled here in England because they had such a good social life there and we knew everybody in Guyana. I came to England May 1962 at the age of twenty four. It was grey and foggy. Buildings were black and people had wallpapers and carpets that showed little colour. The environment seemed to be very hard and cold. Within one week of arriving I got a job with Thomas Cook but never experienced race prejudice. I was treated well and had the most wonderful friends of various nationalities. Yes, I fitted in and there were some Guyanese here who also grew up like me, my god-sister was here and we attended parties all the time. We would get all wrapped up in our coats. We did not care how cold it was once it was party and we would travel all over. I remembered I used to live in Balham with my aunt but when my mother and sisters came the next year we got a house in Kent, so I used to go up on the train there. We had a lot of fun. Everybody was white but when I attended the reunions such as St Joseph’s and Queen’s college that gave me the opportunity to reacquaint myself with people from Guyana. We could talk about roti and curry, patties and all the Guyanese foods that I missed. I was mainly eating English food because I never cooked my traditional foods. As Guyanese we would travel great distances to see each other. This happens regularly in countries such as Canada and America. My cousins travelled from Scarborough to Ottawa to attend a barbecue. We just love to socialise with each other and rarely worry about how far we need to go to do this. I don’t worry about my diabetes now. People ring me up and say how are you? I say ‘I’m fine’. I don’t suffer, and I sometimes forget I am ill. However the routine is taking up all of my time. I would love to have more time to do what I want to do and I hope one day I can get to a point where I do not have to take all these tablets and eat the right foods. I would like to have more time to do what I want to do which is visit my friends, go out to a museum or theatre or see the ballet. Ongoing dialogue and reflections Pam came from a wealthy background in Guyana but now lived on her own in a flat. The family migrated to England and lived a middle class lifestyle. She has six sisters; five of them have diabetes, two with serious complications. Pam talked about her experiences in Guyana and missed her home country. She has fond memories but recognised that things in Guyana had changed since her childhood. Pam had not married and had no children. I visited Pam at home three times but due to her busy schedule kept in touch by phone. When she received the transcript, she felt the speech language was not grammatically correct and also wanted to remove some information. I affirmed that she had the right to remove this. During one visit we made the suggested changes page by page. It took time but was important as she felt the data recorded, transcribed and analysed were her story and not my interpretation. This is collaborative research. I used their language when co-constructing the participant’s story so was pleased when changes were made as it secured participant ownership. In March 2011 Pam developed a facial problem causing her concern because the doctor could not provide a diagnosis. In later telephone conversations, she became aware it might have been linked to diabetes. She displayed strength in managing her condition, keeping a food diary, using alternative therapies, attending a diabetic course and reading to keep informed. Pam said she found peace in converting to Buddhism and chants when stressed. She recovered quickly from knee replacement surgery. Pam felt she had a supportive GP and an accessible diabetic team but having to pay for testing strips angered her. She believed in self-management and termed it ‘taking her body into her own hands’. The care of her sisters appeared to be a big responsibility. She worried about them and their deteriorating physical and mental health. One was sectioned under the Mental Health Act. Pam is due for another knee replacement with mixed feelings about surgery and being incapacitated as last time she needed home care. Pam was keen to join the PAR group. She suspected, but was not convinced about, a genetic link because her sisters, mother and grandmother all had Type 2 Diabetes. The dialogue to explore this connection was on-going. Pam believed her condition arose when she could not prepare her own meals following a spell in hospital. Reflection I conducted this interview on my own but felt fully prepared as an independent researcher. Information about the inquiry had been sent and I arrived at the agreed time but it seemed as if Pam was not expecting me. She was talking to her carer so I waited until she left the room before commencing the interview. Pam had not eaten all day and I could not interview her until she had prepared a meal. I had concerns about her physical state but made no comment. As she ate, I wondered about conducting the interview as I had come a long way but felt her needs must come first. Interruptions from the carer meant stopping the recording and re-starting when convenient. Perhaps I should have arranged another visit but decided to persevere. Pam discussed how her diabetes fluctuated as levels would be consistent but then could increase significantly. She appeared to be managing but highlighted that remembering to take medication, cooking and recording what she ate was a full time job. Her sisters constantly made demands expecting frequent visits. As they lived forty miles away Pam travelled by coach experiencing mobility problems as she used a stick. She often talked about stress being a significant feature in her life and I listened without comment. Pam finally took action by reducing her visits to her sisters. Bea’s storyline My diabetes was first diagnosed twenty years ago in 1990. I come from a family of known diabetics. My grandmother on my father’s side was diabetic, my father was diabetic, my uncle in Canada was diabetic and I had a cousin who was my father’s niece, she died the other day at the age of 68 with diabetes. As a child I used to say ‘Oh I don’t want to get diabetes, I hope I don’t get it’ but lo and behold I got it even though I tried not to have sugar in the tea and didn’t put on too much weight. One of the first symptoms experienced was when I came home from work I would feel a bit dizzy. I didn’t know what was wrong with me and then I started to lose weight. I decided to see the GP and informed him how I was feeling but doctors don’t particularly like you to tell them what is wrong with you during a consultation so instead of doing fasting blood sugars the GP just did a random blood sugar test. He did not tell me the results. When I went back he said ‘I was all right’. It was totally out of the blue one day he told me to come to the surgery and I had the fasting glucose test done. Only then did he inform me that I was diabetic. Yes, sometimes people do exhibit symptoms such as feeling very thirsty but I can’t remember feeling like that. Working as a midwife I used to have limited time for a break for lunch or a cup of tea. You tended to work for long hours before you could get a drink so I didn’t think anything was wrong with me. Once diagnosed I was controlled with diet then later my diabetes was managed with the drug Metformin 500mgs tablet three times a day. These tablets were then increased up to a 1000 mgs (two tablets) three times a day. However the staff at the hospital discovered that the Metformin interfered with my kidneys so it was discontinued. Consequently I had to go to the hospital every six months for a kidney function check-up. That has now been extended to every nine months. Apparently my kidneys had not been functioning properly because when I was on the Metformin tablets I developed a urinary problem and was failing to pass adequate urine. At first nobody would listen to my pleas that there was a problem with my kidneys until my GP eventually took heed and had me investigated. As a consequence the Metformin was discontinued and two weeks ago I was put on long acting insulin by the GP. I have seen the diabetic nurse twice already but we haven’t yet decided whether I should have the long-term or short-term insulin. You can have it twice a day or a booster in the evening so I need to keep the readings of my blood sugar levels. This will determine whether I need long-term or short-term insulin. I am going back next month to discuss with the diabetic nurse Mary which insulin will be best suited for my condition. I have breakfast in the morning when my first sugar test shows a level eight or nine but it comes down in the evening. Mary has suggested that I will probably need an insulin boost in the evening. I am aware that if you take too much insulin you can go into a hypoglycaemic coma or faint. I have never had any type of comas in my life so it is important that I take the right amount of insulin. Mary has said I should start on 10 millimole and I can increase it to 28 millimole. I am now on 22 mmol so I am feeling all right. I don’t perceive one injection per day as being a problem because you don’t really feel it when you inject yourself. I use an insulin pen. I have asked the doctors, ‘could you transfer me to the hospital’? I rarely visited the GP diabetic nurse at the clinic, only once a year but now it has been increased to twice a year. However the GPs prefer you to stay with them. They have said ‘no you stay here, we will look after you’. I know there is a diabetic clinic at the local hospital where patients are seen but the GPs have suggested that they carry out similar checks in their surgeries. I feel GPs don’t check very often. I know I have Type 2 Diabetes and it is a progressive disease but you learn to live with the complications. Having diabetes is not a very nice thing. It affects all your organs in your body such as your kidneys, eyes and feet. So you have to go to the chiropodist every three months for them to cut your nails and to the eye specialist to check on your eyes. I take beta-blockers, another tablet but it also affects the back of my eyes. I had my cataracts removed but I have to go back next month to the Moorfields clinic for them to have another look at my eyes. You need to be careful with the diet when you are a diabetic. Too many starches, rice and pasta sends the blood sugar level up high. But I can eat plantains especially the green ones, as these have lower sugar content. I have a well-established routine: breakfast in the morning is porridge and a cup of tea but I don’t eat bread or anything else. At lunch time I have a sandwich either salmon or fish or meat and in the evening I normally eat my main meal. If I eat rice in the evening, it is just a big spoonful. I can’t eat too much rice because that really increases my blood sugar level. I try not to eat too much meat or chicken but I eat fish. I understand that if I eat meat my kidneys have to work harder so I avoid it. My blood pressure is under control now. I try to manage my diabetes adhering to a healthy diet but now and again you see something that is sweet and you eat it. Yesterday I ate a piece of cake at my sister’s and when I took my blood sugar later that day it was16, three times higher! So I should not have had the cake. At the back of my mind I always think that I must keep this Type 2 Diabetes under control. I know you cannot get rid of diabetes but several Guyanese friends have tried alternative treatments and herbal remedies. A friend of mine from Malaysia who also has Type 2 Diabetes informed me of herbal treatments which he suggested can help you get rid of the condition. One such herbal remedy is beech nut from Malaysia. You drink it in a tablet form for one or two weeks. I don’t believe this, but he said he will buy some and give it to me. A school friend of mine from Guyana who is now living in Florida informed me that she got rid of her diabetes. Over the phone she told me that she was on tablets but did not say what they were. Perhaps the pancreas starts working again. A Guyanese friend’s son sells karela tea. Yes it is very bitter. Another friend said cinnamon helps the blood sugar to come down. I took all these herbal preparations before I started on insulin and I still continue to use them. My Buddhist faith also helps me come to terms with my diabetes. A friend introduced me to this religious group about seven years ago. We were Catholics but I didn’t agree with going to confession. I thought why I can’t talk to God instead of having an intermediary to talk for me. Buddhism helps me a lot because it enables me to understand that when you die you will come again. You know you have spring, summer, autumn and winter but winter always turns to spring. Reincarnation: it is just the same. We human beings will die but we will come back in a new body. This faith helps me not to be afraid to die. I find this comforting. Buddhism is humanistic in its approach. I worry about my family getting diabetes. You tell your children and grandchildren how it is and what to do. It is difficult to know what information is being understood. My son has taken care of himself. He takes five fruits a day and always has vegetables. If I don’t cook a meal he enquires where are your vegetables and fruit? I am not sure what the other two children are doing. I believe stress can have an effect on you. I found midwifery very stressful because it is not one life you have to think about but two; the baby and the mother. I think that stress may be one of the triggers for diabetes in combination with my genes. I always found the job stressful even when I returned to it in 1987. I didn’t really want retire in 1997 but I thought I better give it up. My early life in Guyana was beautiful. I went to the convent school. I had all my friends. You could go to parties and do things together. It was very easy for Guyanese women to come and do nursing in the UK. I always wanted to do nursing and I had applied to the hospital in Georgetown but they did not offer me a place. I left everybody in 1955 to come to England. I was on my own on a boat called the Antilles. It was the British Council who met me and took me to the Lewisham hospital to start my training. I didn’t have any relatives or anybody living in this country. I was scared coming on my own but eventually I made friends. Lewisham hospital was still a bomb site in 1955. It was all rubble around us. Things were still difficult for the people here. You know there were tensions between coloured people and English people. People here were not accustomed to seeing coloured people around. One notice on the door said coloured people and dogs were not welcome. I did midwifery in the 60s, and then, with a Jamaican girl, started to work as a community midwife in Tottenham and Hornsey. We were the first coloured people to apply for that job. The supervisor said as we were the first she was employing, if we progressed well, they would employ many more coloured people. English people did not like to see coloured people coming into their homes to deliver their babies. It was the Middlesex county council that employed us. So we blazed the trail for the other girls to come. My friend and I had a flat together when we were doing the midwifery and we learned a lot about living in England. I didn’t know that in England at that time, some houses did not have baths. They had a toilet but no baths so we had to go elsewhere to bathe. It was nice and clean so when you finished having your bath, you used to say ‘finish’ then clean up afterwards. Oh this was an eye opener. In 1960 I got married and continued to work in England whilst my husband trained as a lawyer. We lived in many countries. First we went to St Lucia where we lived for a time. Then we went to Jamaica where he taught at the university. From there we moved to the Turks and Caicos Islands. He worked as the Attorney General before moving to the Bahamas. Of course I did nursing in the Bahamas and the Turks and Caicos. I didn’t work in St Lucia or Jamaica. Before he retired he went to Belize where he spent a number of years. In the meantime, I got tired of living away and I thought I should get some kind of pension so I came back to England in 1989. I did a refresher course and then I went back into midwifery until 1997 when I was diagnosed with diabetes by my GP. I enjoyed my work but it was very hard and stressful. In the early days of midwifery when someone had a miscarriage, you would get rid of the foetus by putting it in a bucket. In the 90s paper work determined how you spent much of your work time; it was ridiculous. Both my father and mother died in their sleep. She was the one who used to take care of him but he died before she did. He was only 68. I felt bad and I felt so upset that I couldn’t even think but anyway I got over it afterwards. You get over these things but it takes a while. I couldn’t even say goodbye to them or anything but that is life. I really try hard not to put weight on, eat sugar, I don’t do this and I don’t do that and I try to lead a healthy life, I do all of that and then I still develop diabetes! It is probably the stress. I think stress has something to do with it. Download 1.11 Mb. Share with your friends:
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