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

This provided an opportunity to discuss the constructs that had arisen from their stories and to gauge their reaction to them. These resulted from the analysis of their interviews. I offered to read about (1) being diagnosed, (2) symptoms, (3) family history, (4) gathering information, (5) self-management / alternative therapies, (6) expected lifestyle changes, (7) complications, (8) religion/faith, (9) depression/ feeling low, (10) stress and diabetes, (11) preoccupation with food, (12) being Guyanese and (13) maintaining contact with the diaspora. As I read them out loud they all expressed total agreement with what was being said. The women engaged in further discussion regarding the statements which they claimed supported their views.

Vera summed up what the medical profession and GPs should provide for people with diabetes. She believed that:

What we need from what we have all said if this little group can somehow get across to the medical profession and the GPs you know if you are diabetic something in my hip could be coming from the diabetic condition. Treat you as a whole; don’t treat you as you have six different parts in your body.

Action

Vera broached the subject of the menu book and informed the women that she had given second thoughts to the wisdom of the book. She gave the following reasons why she felt it was no longer a good idea. She said:

Mixed feelings and suggestions were put forward following Vera’s comment. Marjorie tried to keep the interest in the book going by suggesting perhaps we could include Guyanese recipes that were diabetes friendly but only Pam responded with a comment.

We discussed suggestions regarding how we wanted to get that message across to the wider health care audience which included influencing policy in order to get the attention of the politicians to listen to the BME communities who had diabetes, to take note of their issues like diet, management of their condition and the practitioners not meeting their needs. I suggested a website but Marjorie who had experience in building websites described the pitfalls in producing one. The conversation moved on to the dissemination of the results of the study. How were we going to do that as a group? Pam suggested that they needed a permanent supportive group and in her response outlined what she felt was the benefit of a group like their current one. She highlighted:

I think we need a permanent group like this to grow a little bit but may even have branches off of it. At the end of the day unless you talk about it, Marjorie may have read a lot of books and papers about it but nothing happens once you read it. I saw the greatest jump in Marjorie after one meeting. The next meeting Marjorie claimed that she had lost weight. I thought that was the greatest progression so in a way if she had never come to the group

They all echoed positive responses to what she had said. Vera mentioned that Marjorie used to eat everything including her favourite Guyanese dish known as pepper pot and Marjorie agreed that she would have still been a size 22 if she had not changed her eating habits. The session closed after that final remark.

On reflection, I encouraged the women to further explore their feelings when first diagnosed. When the atmosphere in the room went flat, I used a positive comment to lift their spirits by focusing on their achievements. I am aware that when engaging with PAR that the participants set an agenda for each session. There have been one or two leaders within the group who took control of events and raised issues in the sessions. There was no fixed agenda. However when the occasion arose and a member of the group was silent then I intervened and brought that individual into the conversation. In actual fact I generally said very little at the sessions except to clarify, summarise what was said or move the conversation on when they digressed. In this session, I spoke more than usual but there was a need to share information about the constructs and discuss the analysis of the study. All the constructs were validated.

Depression has been an issue of concern as the women have felt depressed when they had made an effort to stick to a diet yet the blood glucose levels remained high. They all expressed the difficulties of living with their long-term condition which may not have been couched in those actual words but they expressed the problems of managing the “highs and lows” of the condition. There was much discussion about how they have been treated by the medical profession and still continued to receive a poor service.

I was reassured by the women’s responses to the 13 constructs. We looked at the data together and they agreed we had talked about similar issues from the PAR taped sessions and feedback I had provided.

Despite their apparent knowledge deficit, the women were keen to communicate that they were proud of their diabetes self-management and what they had achieved since joining the group. In light of our ten PAR group sessions, the women suggested that:

They would like GPs to be responsive and to listen to them about their symptoms.

The well-woman clinic served as a good service delivery model for people with diabetes. By that they meant having access to a clinic and staff who routinely monitor their chronic condition including their vision and feet.

Early detection of diabetes was important. Vera had waited eight years for assessment of diabetes which the women believed was unacceptable.

They needed an emergency call centre with contact numbers and to know how to access advice and treatment 24/7.

They needed better preparation for and education about diabetes when newly diagnosed, inclusive of their families.

They wanted to be kept in touch with new treatments in the field of diabetes for example, Balance Magazine

The Balance Magazine might be a good resource but needed to be more reader friendly.

An equitable service was required, one that gave them access to the same resources for example, testing equipment, glucometer, strips and a streamlined pharmacy service to provide insulin. The women had experienced difficulty in obtaining insulin and equipment from their GPs.

In the effort to address some of the difficulties raised in the main constructs, the group recognised, valued and acknowledged the information exchange within the group. Most suggestions made by the women are congruent with difficulties experienced when living with diabetes.

I noticed cultural cohesion in this group. It became noticeable that ‘we’ shared an understanding of Guyanese culture, food preferences and that we could talk about our previous lives in Guyana, even more so when discussing a ‘touch of sugar’ or diabetes that was so prevalent in our group and back home.

The recipe book no longer seemed to be a good idea because they all realised the difficulty in putting a book of recipes together consisting of Guyanese foods that had a high carbohydrate and sugar content. This was enlightening. The women were becoming aware of how their favourite foods raised their glucose levels. The cultural meals were perceived more as a treat rather than as part of a regular diet.

The women had made realistic and manageable changes as a result of the group which had given them confidence to appraise and review how they lived with their long-term condition. They congratulated each other on their achievements. They shared expectations of the kind of service that should be accessible to them. Yet after experiencing this long-term condition for so many years, the health profession were apparently still failing them in some of their service needs.

In terms of outcomes, the women wanted to disseminate the information from the inquiry and to make their suggestions known. They have all stressed the importance of meeting up, sharing and learning from each other and the benefits it had brought to all of them. However they still have outstanding issues and questions that require answers or even clarification. We had agreed to invite Mary, a diabetic nurse specialist to the next meeting. I had given Mary a list of questions asked throughout the PAR sessions so that she could prepare herself. The women came prepared to ask their questions. Each woman had given Mary a brief overview of their condition before the session started. This particular meeting, the eleventh session, took about three hours.

Eleventh Session

Mary the diabetes specialist nurse was invited to this session. It was held at Vera’s house. All the women (see Table 4 for attendance, p141) attended this one.

Marjorie asked the first question ‘is coconut milk good for you?” Mary responded by saying it was good to drink but advised her to check to see if it had any added sugar because it could be a problem for those who have diabetes. Another question was raised regarding cholesterol levels. Mary gave a brief description about HDL and LDL which is considered to be good and bad cholesterol. Vera asked: “whether statins should be taken to reduce cholesterol levels?” Mary highlighted that statins can be taken but cause side effects that included muscle cramps and skin discolouration. She suggested that Vera should go on the internet and research the side effects prior to seeing her GP. Then a decision could be made whether to take it or not. Vera admitted that she had a problem with her GP and was unsure how she could manage this situation. She said “how do you debate with them that you don’t want it. He sees my cholesterol is 5, the good one is 3.5 and the bad one is 2 . something”.

Mary reminded the women what was an acceptable limit for cholesterol levels for a diabetic. She stated that the body needed cholesterol for the cells to function and suggested that if cholesterol was between 2 and 5, there is nothing wrong with that reading. She believed that there are a lot of myths around cholesterol levels. Pam asked: “is there a way you can check your cholesterol levels?” Mary advised that there is a machine that is similar to the glucometer that is reasonably priced but the strips used to test the levels are expensive to buy. Pam felt if she could test her cholesterol levels then she could monitor them more effectively.

Marjorie asked: “what are the side effects of steroids when you have diabetes?” She said she had refused to take what had been prescribed. Mary suggested avoiding them with or without diabetes because you can experience a number of problems including thinning of the bones and gastric ulcers. She said:

Pam responded by suggesting an alternative doctor may help Marjorie’s anaemia but she expressed a different opinion regarding alternative practices. Marjorie likened the experience with the alternative practitioner to “a scam, somehow he is on the internet and everywhere but I don’t trust him and then he gave me this stuff, herbs and whatever I keep thinking it might be grass”.

Mary highlighted that “a lot of people were turning to alternative therapy because you are now seeing the side effects of the drugs”. Vera asked: “how do we then as diabetics explore these avenues going on the internet and reading up about the thing and even then you are not sure?” Mary responded by saying that you will not get the information from the doctor but make sure the research comes from a reputable site. There were specific questions that should be considered for example, is it someone reputable who has completed the study? It is about getting your information and facts and going with that to the GP. You probably know more than them about what is going on.

Agnes asked a question about Metformin: “when do you increase or decrease the dosage as it can sometimes cause diarrhoea and getting cramps in fingers and toes?” Mary suggested “always best to take Metformin with food as it would give diarrhoea if taken on an empty stomach. Tingling in the toes and fingers occur when the sugar levels are too high and if not taking Metformin as prescribed the levels will go up”. Mary highlighted that the following options can be used to keep the blood glucose levels normal: karela, cinnamon, soursop tablets and Chinese green tea. The tea should not to be taken on empty stomach first thing in the morning because the blood glucose levels are low however it is useful as an antioxidant.

I asked: “are you advocating that they stop Metformin?” Mary responded “no, but if you decide to go down the alternative road, you must monitor to make sure you are taking it properly”.

Marjorie informed the women that she had requested and had commenced slow release Metformin (Glucophage). Since taking this new form of Metformin, her daily dosage had reduced from 2000 mgs daily to 750 daily. She is aware that this was a drastic reduction therefore Mary advised her to monitor carefully. Mary reminded the other women that “those showing side effects of Metformin should ask their GP for the slow release option”.

Bea continued the discussion on Metformin by recalling earlier issues that she had encountered whilst taking the drug. Bea said “she had been taking 1000 mgs three times a day that caused problems with her kidneys. She wasn’t passing any urine so told the doctor who didn’t do anything about it”. Mary admitted “that was a lot”. Bea told her she was now on insulin but the glucose level was dropping too low to 1.5 following a night sleep. She said “she was scared because of how she felt”. Mary advised her that “she was not eating sufficient the night before; if you are taking 10 units of insulin, you have to make sure you have enough starch in the meal. If you are eating a small meal then reduce the amount of insulin that you are taking. Have you been told about increasing and decreasing?” Bea responded that she had been “advised to do so, start with 20 fast release due to increased levels”. Mary suggested “have two biscuits digestives or cream crackers before you go to bed. This would prevent their glucose levels from dropping significantly during the night”.

Other members of the group talked about what they did when their blood glucose levels dropped. One remarked that she just ate a sweet. Mary suggested that they needed more than a sweet and should always have a substantial meal afterwards because the sweet just gave them a boost.

After the women had asked their questions, I flagged up the ones that had I had noted during previous sessions to get some clarity. I asked Mary: “does Metformin cause damage to the kidneys?” Mary informed us that “one of the side effects from long term use is kidney failure. They gave it because the advantages outweighed the disadvantages. You are on Metformin for ten, fifteen years without problems but the higher dose increases if you are not looking after your diabetes. It is a drug that has done wonders for diabetes”.

Jillian claimed that she could not get any podiatry services, “it was cut from my service and my feet required attention, what could I do?” Mary suggested that “any nurse at the practice could check the person’s feet to see if there was a pulse or sensations”. She stated that “it was something that she used to do as a diabetes specialist nurse but the podiatrist gave a more thorough check-up”.

Further discussion among the women ensued about services needing to be more culturally specific. Mary responded to this with much scepticism. She believed that individual practitioners have to assess the individual needs of their patients and adopt a multicultural approach however this may not be happening everywhere. She outlined how she used a multicultural approach in her work with the different ethnic groups especially in terms of cultural diets. To illustrate her response, Mary referred to a Polish person who had diabetes and how she managed that particular situation. She felt you had to keep up to date with what was happening in the line of foods especially if you have to advise people. You needed to know what they ate.

Vera raised the question about: “having a Diabetic Team is a reality in Canada why not here?” Vera discussed how she felt when she was first put on insulin by the diabetes specialist and only had fifteen minutes with her. Vera said “nobody sat me down and said how do you feel about this?” Mary “thinks they are better now. That is what the diabetic team at the hospital is supposed to do”. Mary reassured her that things had improved. She explained the type of diabetic team that should be available now. Mary informed them that there should be diabetic clinics in the surgery or the practice nurse will check your feet, ensure that your bloods are up to date and weight is checked. Many of the services have moved out of the hospital into the community but specific groups like brittle diabetics, children and younger people still tend to be assigned to the hospital. In response to Mary’s explanation, all the women described the different services that they have encountered, for example just GP and a nurse or GP on his own or a clinic or a hospital.

I asked Mary if: “individuals are diagnosed sooner with Type 2 Diabetes or do they go on for years undiagnosed?” Mary responded by stating that “new rule is every new patient that registers with a surgery should have a full check-up including urine and anyone over the age of 45 is supposed to have yearly sugar levels, cholesterol and kidney function tests. Check every year from age 45 then over 75. Doesn’t always happen with some surgeries, it is for you to know this, what I can get and make sure you get what you are supposed to”. I responded by saying “how would you know that? Isn’t it a chicken and egg situation?” Mary said “when diagnosed you are given a full explanation of the disease and annually need to get your eyes checked, feet checked, HbA1c levels checked, liver, kidneys, teeth checked and then it becomes your responsibility too if you know you need these things, you have to push it and book your appointments”.

The session then came to a natural end and everyone thanked Mary for her contribution to the group and for answering their questions. She was invited again to attend another session as the women had more questions that they wanted to ask and we had run out of time.

Analysis of session

During a light lunch, there was an informal discussion which was not taped about the use of coconut oil and coconut milk which had been gaining in popularity in England. It is either used to cook or as beverage to drink. Many of the women had been used to taking this substance as it was part of a staple diet in Guyana.

It is interesting to note that the women asked a range of predominantly medical oriented questions that have been shown in bold in the above section. They craved medical knowledge even after being diagnosed so many years ago. I had heard these questions before and as discussed, I was not prepared to answer medically oriented questions in my role as researcher. There were recurring themes for example, acceptable cholesterol levels, side effects of Metformin, and the use of alternative therapies alongside prescribed medication. The request to have access to a diabetes specialist team that held culturally specific understanding was not new but important to share. I felt it was important to obtain answers from a specialist. I posed the final question that seemed to me something about the loss of individuality within the diabetic service that led to the mismanagement of the individual’s long-term condition. The women requested to have the diabetes specialist nurse again because it was so helpful to hear her comments so it was agreed that Mary should be asked to attend the next session. The women asked for the following issues to be noted.

Improve dialogue with health care practitioners especially the GP

Would like ownership of their diabetes rather than being told what to do by GPs and health care practitioners.

Disliked being treated like children

I recognised that these issues will need to be incorporated into the conclusions of the inquiry and to be further disseminated as they were important issues for the women.

Twelfth Session

Bea hosted the above session (see Table 4 for attendance, p141). Agnes could not attend due to a hospital appointment. At the beginning of this session, I reminded the women that Mary had agreed to answer some more questions. We all agreed to structure the session so that all the remaining questions could be covered this time.

Monitoring long-term conditions

Both Vera and Pam commented that “they were going to purchase the cholesterol machines” even though Marjorie suggested that they could have their levels checked at their respective surgeries. Jillian informed the group that “she had stopped taking her statins”. Mary asked “if she had consulted with her doctor and had had her cholesterol levels checked?” Jillian responded by saying that “she normally had high levels but had been reading about statins’ side effects so had discontinued them”. Jillian had started taking soursop tablets as an alternative treatment. Mary reminded the women again why they are given statins when you have diabetes. The GPs tend to have a protocol to give it as a precaution against heart attacks.

Vera asked: “what were acceptable levels of cholesterol for those with diabetes?” Mary identified the cholesterol level as 6 millimoles but some doctors may suggest 3 to 4 but 1 is considered to be too low. At this point Vera asked “if some people were more predisposed to having high levels of cholesterol?” Mary responded by acknowledging that for some people, “it can run in families”.

Marjorie flagged up the side effects of soursop pills that she had discovered on the internet. From the information obtained, she gleaned that if you have hypertension, you should not be taking them. Marjorie wanted to know: “if there were any side effects when taking alternative medication such as soursop pills with Metformin, statins and in her case thyroxin?” Mary advised her and the rest of the women to monitor the situation closely if they were going to take alternative medication. Mary suggested that they needed to take their blood pressure and blood sugar a little more regularly. If they noticed that the blood pressure is getting a little bit lower, then they needed to tell the doctor that they are taking alternative medication. The GP can advise them to reduce the quantity of blood pressure tablets that they are taking. It was better to work it out that way but they needed to monitor to see what was happening to their bodies.

Mary then spoke about protocols used within the GP surgery for those with diabetes, if not GPs did not receive any funding. She reminded the women about the list of things that comprise an annual check because the auditors visit the practices to check the service that has been provided. Mary admitted that she did not know the procedures for hospitals, but in the GP surgery, you have the QOF examination once a year. The PCT will come in and review the information on the computers and then have a meeting with staff for an update. They will also engage in a dialogue with patients and review the information held on the computer for those individuals who have diabetes. They would expect to see that the person’s stomach, height, weight, BP, cholesterol level, glucose level and their HbA1c have been checked in a year.

Pam claimed due to stresses in caring for her sisters, she had not stuck to a diet and was eating mainly vegetables and fruit for example, mangoes, grapes and pineapple. She talked about eating two mangoes a week but Mary suggested that was too much sugar and advised her to reduce the amount of fruit and to eat more starch. Pam admitted that her glucose levels were high, 10 or 12. She informed them she still had problems eating late at night and finding that her blood glucose levels are high in the morning. She said:

Mary suggested that she could buy one of the healthier option meals at one of the local supermarkets. Each woman in the group offered Pam advice regarding the quantity and type of food she should be eating. Mary then suggested that she kept a food diary and recorded what she ate during the day. She informed the group that she already had a daily record. The women all recalled the size of the portions of food that they should be aiming for when they had their meal. Pam took the floor again and discussed how she was no longer making herself the priority. Mary advised Pam to make more time for herself because she too was important.

Pam continued discussing the problems she had been encountering with her sisters, so we interjected and changed the conversation to actions that they had taken in the preceding weeks.