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

Vera shared her views with the new women. The others joined in regarding what they could put in the book. Various Guyanese recipes were put forward such as pepper pot, roti and curry but Vera admitted that it might be useful to contribute a recipe that they used that kept the blood sugar down. They each realised that they had to think about calories in a day. This session came to a natural end with each woman promising to submit a recipe at the next one.

I felt this had been a very successful session especially as two new members had joined an existing group. I held the session at my home and provided lunch that consisted mainly of salads and chicken followed by fruit salad. I personally do not eat Guyanese food as it can be high in starch and fat so it was not present in any dishes provided. I experienced some conflict in providing the type of balanced meal without assuming a nurse’s role. I kept reminding myself that I was in a research role but it was difficult to divorce the two. I grappled with the issues as I engaged in the inquiry as researcher, academic, nurse, insider and someone who shared similar life experiences as a Guyanese woman living in the UK. The group norms were re-established as two new women had entered the group. In order to make the two new women feel inclusive, I encouraged them to share their experiences with the women.

From my previous experience of conducting groups, I was aware that adding new members to an existing group can be disruptive because it affects the interactions and chemistry within the group. In order to reduce the effect of this, Jillian had already been introduced to the women whereas Agnes had never met them. However, I had asked one of the women to accompany Agnes to the session. Considering this was her first time she felt encouraged to share her personal feelings. These actions I felt helped to make the session successful. Initially Agnes sat on her own rather than joining the group at the table however with some encouragement she joined in and participated well in the conversation.

On reflection, there is connectedness with Guyanese people that as a Guyanese woman I had taken for granted. This connectedness may have helped the group cohesion even when new members joined the group. Rather than one member trying to take control, it was obvious that all the women played a role in contributing to the issues discussed including the proposed group action. It was reassuring to see that another member of the group rather than me had prevented Pam from taking control. I really wanted to see this happen more often in the groups. I needed to think how I could facilitate this type of interaction.

The women were adding to their knowledge base about their long-term condition. The issue of loss and depression had featured again in the group and coming to terms with the condition even though a majority of the women have had it for many years. The chronic effects on the body and dealing with constant pain and discomfort illustrated the long-term effects of living with diabetes as experienced by the women. It was difficult to gauge what stage the group was going through. Perhaps with reference to Tuckman’s (1975) model, the group was still going through the storming stage as some conflict was present when Pam tried to monopolise the session. Pam seemed to be in a state of denial about her illness.

Two of the women whom I had interviewed did not attend the group. Both stated that they were already committed to a busy daily schedule. I kept in contact with one on a regular basis as part of the inquiry. The other woman declined contact but was willing to contribute her personal story. Her voice is found alongside the other seven women in Chapter 5. One has to accept that some people choose not to participate owing to other commitments or family responsibilities. It occurred to me that whilst the group was successful for the women that attended and that they had made significant changes in their lives, the group process is not for everyone.

Seventh Session

This session was held at Jillian’s home (see Table 4 for attendance, p141). Jillian served lunch followed by dessert. Marjorie declined the offer of dessert because she said she had to be sensible; if she was not it would raise her blood glucose levels.

Actions

Following the meal the women talked immediately about the actions they had achieved since the last session. Jillian reported that she had had her diabetic check and her HbA1c was 6.2. Vera said she had had a series of investigations at one of the local hospitals and had been asked by the consultant to take Metformin plus insulin because her glucose levels had been so erratic. She had subsequently refused Metformin however her intention was to keep monitoring her diet and glucose levels. Pam had seen a different dietician who suggested that she weighed everything she ate but she felt that would be time consuming. Marjorie commented on her changed eating habits and the positive attitude that she had adopted since attending the group and admitted that she ate very small portions with very little meat.

Marjorie reported she had researched on the internet the foods that they ate for example, plantains and yams. She offered to collate all the information and to carry out further research on the calorific value of Guyanese foods. They all debated whether they ate these foods all the time or only on special occasions. They realised some of the foods could send their ‘sugar up’. Pam felt:

What we need is Guyanese food that we can buy and eat. What we need is a calorie count for Guyanese food and if we have the calorie count, we can put together the Guyanese food because we can see it has got coconut milk, plantain and so on.

Vera remarked that plantains have a lot of carbohydrate and cassava is full of starch. Marjorie conveyed this information to them. She stated that “I started research on calorie count and carbohydrate count; it was surprising how much was in plantain. We will learn about ourselves”.

We talked about the recipe book and whether to go ahead with it. We needed to bring all the information together when we met the following month. The women talked again about continuing their individual actions. Jillian was planning to lose more weight and to monitor her blood pressure. Vera described her battles with the medical profession and her task was to have her back pain investigated. Marjorie planned to continue with her healthy diet and to obtain the results of her investigations. Pam highlighted that she intended to remain mobile by walking more and sticking to a diet.

Reflections: Facilitator’s role

I reflected on every group straight afterwards and made a note of things that had been discussed but not taped, for instance when we were eating. Increasingly the group was serving as a forum for the women to discuss their ideas, views, thoughts and feelings.

I observed an improvement in all the women who attended this session and applauded them for their achievement. They were making an effort to stick to their diets but highlighted the difficulty in not consuming their favourite foods. They demonstrated the complexities of diet when you had diabetes and possibly experienced conflict when trying to avoid certain foods. Food to them was such an important issue and is a prominent one in the Guyanese culture as food is used as a symbol of togetherness when socialising and as a way of confirming cultural identity.

It was also reassuring to see the insight that the women were developing about the foods that they loved to eat but recognised the need to review them. They cooked both Guyanese and European foods but showed their preference for Guyanese foods. On reflection I became more aware from the interaction with the women how individuals with diabetes felt when they could not eat certain foods? These feelings had been explored in the session, the yearning and craving seemed to deepen when you could not have it even when they strived to keep to a diet. It had taken most of them a long time to develop this awareness of the types of food that they can eat. Preoccupation with food is one of the constructs that emerged from the women’s stories (see Chapter 6).

In my personal reflections I noted that in this particular session the women spoke about coping with life in England and about being Guyanese plus the issues that they had faced over the years. Growing older in an English environment was a major concern. They spoke with some regret and longing to return to their own culture and country. They also expressed disappointment that two other participants had decided not to join the group. I believe that they were making the same assumption as me that because this was a Guyanese group, they would want to attend. Members of the group were surprised at the other women’s reluctance to attend but it was agreed that we should keep the group size to the current number of six rather introducing anybody new at this stage of the inquiry.

Eighth Session

Vera hosted this session (see Table 4 for attendance, p141). I commenced this session because I needed to have the group norms taped as we had discussed them at earlier sessions and laid down ground rules but did not have a recording; therefore I reiterated them. Precisely because the UK Guyanese community is small I reminded the women about the need for confidentiality and not to discuss the issues raised among them outside of the group. Their names would be changed to ensure anonymity. I had got into the habit of sending updates prior to the sessions and giving an extra copy at the session so they could refresh their memories of what had occurred. I shared with the women a compiled list of calorific values of food that I had received from Marjorie. Unfortunately due to illness she could not attend.

Vera offered immediately information from the Balance Magazine and other sources that she wanted to share with the group. She said:

This is all very spectacular because it is all in colour and it gives you all the information you need about portion sizes, the carbohydrate content, the protein content and the balance that you should try to achieve but obviously you have to take it with a pinch of salt or sugar obviously you have to stick to these rigid portions.

Pam said “Guyanese liked and ate far too much food”. Surprisingly Vera had collated all the information that she had been discussing in previous sessions about diet and food and shown the women pictorially the foods to avoid and those they could eat. Bea captured some of the conversation when she gave a rationale why they should be eating smaller quantities of food. She stated “when you eat little portions you can control the sugar level and I thought I must do that. I think it is quite good if we can follow this”.

Following the discussion, they all requested copies which I agreed to photocopy and circulate. I chose that moment to update the women on recent information that I had obtained from the Diabetes UK organisation regarding research on ‘diet only’ treatment for Type 2 Diabetes. In keeping with the update that I had just delivered, Vera informed the women that when she was first diagnosed she had been put on a stringent diet that had been supervised by the hospital; the diet consisted of only apples, no milk or potatoes but a little portion of rice. She claimed that she got her diabetes under control. It was only when she was referred back to the GP service and her condition was not monitored closely that she relapsed. This was coupled with events happening in her life at home during that time, she said, the loss of her father and stress at work that may have affected her condition. Vera believed too that a strict diet could help but it needed to be monitored carefully.

Vera recognised that other factors could cause diabetes but assumed a genetic predisposition. She responded by saying:

The conversation continued with Bea who highlighted that her Indian grandmother had diabetes. She believed that there was a genetic predisposition and said:

Pam’s Indian grandmother also had diabetes but she denied this when the women questioned her. Vera and Bea challenged her when she suggested that her diabetes was caused by an accident. Both women exclaimed that “it does not come on just like that”.

At this point I asked whether they would like a diabetes specialist nurse to attend one of the sessions to answer some of the medical questions they had been asking. I gave them a list of questions previously asked to peruse. It was agreed that I could contact a specialist to ask her to attend a session.

We then switched the conversation to what being Guyanese meant to them. Vera admitted that she never gave it much thought. Bea felt it meant we could arrive unannounced. “We did not have to telephone our Guyanese friends first, they are all friendly and caring”. Pam believed we like people but Jillian said:

This led to the closing stages of this session. Before the intended actions were discussed, Vera immediately asked if she could raise the issue of the recipe business, the group action. She said:

Jillian conveyed how she felt about it. She already had a recipe book for diabetics that she had never opened so she was uncertain about the usefulness of a book. She felt some of the recipes could fit in with their Guyanese foods. We agreed as they reflected and gave some thought to their diabetes, how they were managing and learning to live with it, the difference in them now when they compared with what they were like before. The women reported how much Marjorie had changed. As Vera and Pam commented:

There was much laughter in this session and I felt my facilitation skills were developing within the PAR process. They spoke with pride about what it meant to be Guyanese. They seemed to be at ease with each other as they voiced their feelings and concerns. There were periods of silence during the session to reflect and think about what was being said. I chose this session to provide information which was an update on a study conducted on individuals newly diagnosed with Type 2 Diabetes using diet only because it had been mentioned in a previous meeting. The researchers (Professor Roy Taylor led the Newcastle study: 600 Calorie Diet) had had some success but it was a rigid diet, very low on calories under medical supervision. It was not something that people should try or do on their own. At the moment the researchers were still awaiting the full results of the study.

The food was less sumptuous and smaller portions were eaten. They showed real concern for Marjorie’s recurrent ill health and missed Agnes who could not attend as she was abroad on family business. Vera had continued in her educative role in raising awareness about diabetes. She had provided more information for them to recognise hypoglycaemic attacks. Marjorie had conducted an extensive search on calorific values of food. I personally felt this had been a very good educational session about self–management which this women’s group had led. The learning process among the women and change in behaviour had been evident as they took on board the information that they had received from each other but from Vera in particular.

We talked about what being Guyanese meant as Guyana crept into most sessions. In fact we agreed that it was an acquired uniqueness that was difficult to describe initially but when we thought about the question we were all able to give a range of answers that were similar in nature. Being Guyanese is another construct that emerged from the stories in Chapter 6, it was important to the women to uphold their traditions.

While food had been the focus in this inquiry, the awareness of how much they liked and ate food had developed during these sessions. In actual fact they were surprised to learn that they normally ate rather big portions of food. It was the first time as a group they had given a considered approach to what they exactly ate and the quantities that they should be eating. I suggested that we were moving through different stages within the group and quite possibly through some kind of metamorphosis.

They realised that they needed to make lifestyle changes in managing their diabetes in light of all the information they had received from each other and other sources. The women had been making a concerted effort to take regular exercise. However I believed that they were not fully aware of all the changes that they had made since they joined the group. The group has been serving its purpose to which they all agreed.

The group action had been reviewed and as part of the awareness exercise, they realised that Guyanese foods had high carbohydrate content. They were hit with the facts that including Guyanese foods in a diet might not be such a good diet for people with diabetes.

The women had reached the performing stage in Tuckman’s (1975) approach to group dynamics by making a decision about the recipe book but they remained undecided whether or not to continue with it. I did not intervene in any solution as they made decisions together about the recipe book.

The women were developing a shared vision about what they perceived as good diabetes self-management. Pam continued to be challenged by all of them regarding her alternative practices and beliefs in managing her diabetes. They reminded her that she had five sisters with diabetes and she should consider that there is a predisposition to the condition. Pam seemed to be in denial regarding what was happening to her but even with a rational explanation she appeared to be reluctant to accept it.

I was pleased that I had finally suggested that a diabetes specialist nurse attend one of the sessions. This met with the women’s approval as they recognised that there were still many unanswered questions regarding their long-term condition. I was not in a position to answer them or their respective GP practices who, according to them, had failed to give them the information they needed.

Ninth Session

This session was hosted by Pam (see Table 4 for attendance,p 141). Unfortunately three women could not attend two due to illness and one was still abroad. Lunch consisted mainly of salad and vegetables.

Bea raised an issue regarding the neuropathy she had been experiencing. She had previously discussed this complication but informed the group that she had been prescribed an antidepressant. She expressed being shocked at being given this medication as she was not feeling depressed. They all laughed at Bea‘s response. Depression became a focus for discussion. The women reported various responses to feeling depressed. Bea stated she never felt depressed because she knew both her father and grandfather had diabetes. Vera and Pam likened their feelings to being low but then Vera admitted that she got depressed about all sorts of things. Vera related the many occasions that she felt depressed for example, she said:

All the things you know that are affected and so you are finding out a bit by bit down the line, it makes you depressed because when I found out what was happening to my eyes and nobody had bothered to tell me this was a symptom of the diabetes, nobody had told me the dire effects in your eyes, those are the things that make me depressed.

Vera admitted that she needed to be educated about the effects of the condition when she was first diagnosed which may have prevented some of her complications but the service was not available to her twenty to thirty years ago. She acknowledged that it might be different now.

During their exchange of information, the women expressed that they had been monitoring what they ate since the last session. Pam recalled that “since I saw the portions of foods on the hand-out I have been watching what I eat. I bought some sweet pears but only ate a half. Normally I would have eaten two”. The three women reported that as the Christmas season was approaching, they could be tempted. However they all agreed that they were going to eat smaller portions and Bea had planned to continue with her walks.

In this session, I encouraged exploration of feelings especially depression. I had been aware that it was an issue that had been given minimal attention although it had been raised before. Nevertheless it was pleasing to hear the responses that captured the women’s feelings. I still often wondered about my role in the group. I remained silent and only when appropriate I made a comment so that the women had the space and time to interact with each other. However I have observed the progress the women have made as they seemed motivated to bring about significant changes in their lives especially when faced with the difficulties and complications in trying to manage their long-term condition.

As the session progressed the women became less tolerant of Pam’s repetitive behaviour. I queried whether she had been experiencing memory problems as retaining information had become a concern.

The conversation shifted again to their diet and what they had been eating. The women realised that if their quantities of food were too small, this could give rise to a hypoglycaemic coma. I witnessed a changing attitude to food even when the women had lapses. The group action was not discussed and I was uncertain whether to raise it or not but they raised concerns about the festive period and wondered how they were going to manage when the traditional Guyanese food was given to them. This could be a dilemma when it occurred but they had no easy answers for those issues raised.

Tenth Session

Marjorie agreed to host this session because she had missed a few due to ill health. We had been in contact by telephone and kept her involved (See Table 4 for attendance, p141). Marjorie prepared lunch with a variety of salads, fish and chicken which she called healthier options. I outlined to the women that as part of the PAR research process and their role as co-researchers whether they would agree to becoming involved in the analysis of the data. They all readily agreed to do it later in the session. Jillian continued the conversation that she had commenced during lunch. It had not been taped but she had been describing to the women how she felt when first diagnosed.

Vera had led this discussion and asked:

Jillian took the floor and described her reaction to the diagnosis. She stated that:

Jillian’s story sparked off more discussion among the women how they felt when diagnosed. Marjorie then identified the way the group had helped her. She said:

Both Bea and Marjorie reiterated information about their renal problems but Bea identified that her kidney problems had shown a significant improvement since her medication had been changed from Metformin to insulin.

Marjorie described her GP as ‘an idiot’ who seemed to lack the knowledge and understanding of the investigations that had been conducted. She also recalled how she was misdiagnosed for another physical problem when she saw another GP because she no longer trusted hers. She said “I don’t go up there because I am now seeing one, this woman now she thought when I had appendicitis that I had peritonitis”. The women laughed hysterically at her comment. She responded by saying:

Don’t laugh I couldn’t move, you couldn’t even touch my tummy there and she didn’t even write a letter to the hospital. She said go straight to the hospital so I ended up getting my daughter. I got her to take me and they said it wasn’t that, it was diverticulitis.

Pam offered Marjorie some advice regarding how she should respond to her GP in future. She said:

The tempo in the room changed to the Expert Patient Programme as some of the women had attended the course. I chose this moment to remind the women that they were the experts of their illness and to reinforce their strengths in self-managing.