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

First of all we thanked Mary for her contribution then each woman gave an update about their current actions. Jillian discussed further problems with her foot so requested to see a podiatrist and will now be referred. Marjorie’s problems with her bowels have persisted, not necessarily linked with her diabetes but could be. She related these to the group including her frustrations with the GP service and had still not received a proper diagnosis for her current problem. Vera confessed about the daily struggles she encountered, some days are better than others. She will continue to see the physiotherapist for the spasm in her back. Vera had requested to be referred back to the hospital diabetic service which she had achieved. Bea informed the group that she had received her yearly check up at the urinary dialysis clinic and also had her diabetic review. She informed the group that:

Each woman highlighted their actions for the coming weeks until the next session. Pam identified that she needed a knee replacement so has been informed that she has to reduce her blood glucose levels. Jillian will follow up the problems with her foot, Vera is sticking with the physiotherapist, Marjorie is dealing with the complications she has at the moment. Bea summed up her actions as “doing everything I am supposed to be doing”.

The following long-term group actions were recorded as:

To attend one of the Guyanese Nursing Association (AGNAP) conferences – to disseminate findings of the study

Keep the group going as a supportive group for males and females

Each member can start a group, where they live for Guyanese or others who are diabetic

I felt that there was some tension in the group during the first part of this session devoted for questions. The women tried to manage the situation and to be fairly empathic towards Pam regarding the current problem with her diet and sisters; however as the information became even more repetitive, the women eventually changed their approach thus confronting her regarding the way she was managing her diet. I just observed the dialogue that was taking place but did not intervene at that point as I wanted to see how they would manage the situation. It felt uncomfortable to stop her mid track in what was being said but we only had a limited amount of time for the session and an external person was present in the group so we all intervened.

Perhaps the group was still in the storming stage if reference is made to Tuckman’s (1975) model. I attributed some of the intense feeling within the session to Pam taking the floor again, controlling the session and repeating the same information about her sisters that the women had heard on many occasions. She was looking for support. Nevertheless I felt Pam’s contribution captured the complexity of living with diabetes especially when faced with numerous stressors in your life.

The women asked the diabetic specialist nurse some similar questions that had been raised in the previous meeting relating to statins and cholesterol levels. It seemed as if they wanted further clarification. I had already started preparing the women in the group for the ending of the inquiry as I recognised how much they relied on the group sessions even though they kept in touch with me and each other outside of them. We discussed evaluation of the groups and how the women intended to take things forward.
Thirteenth Session

This session was held at Jillian’s home (see Table 4 for attendance, p141). We received apologies from Agnes and Bea who were on holiday. Following another enjoyable lunch, the conversation commenced about growing older generally.

Jillian talked about how she had slowed down and gave an example of how cooking lunch that day took her much longer than anticipated. Pam agreed with her that everyone had slowed down. Marjorie suggested that:

Vera carried on the conversation about getting old and referred to programmes on the television about hospitals and older people’s care homes. Vera reported that:

Both Marjorie and Jillian spoke about the relationship they have with their children who to some extent had adopted a role reversal and were behaving more like a parent telling them what to do. It made them feel stupid and old.

Pam felt she did not look old like other people but had to accept that she is getting old and cannot do the things she used to do when she was younger. Vera discussed the problems of getting old and having to keep injecting herself with insulin. She said she is running out of space on her body plus the discomfort that she is experiencing:

It is stiff, the skin gets like bumpy rubbery like the skin on Mars. I can find the odd spot occasionally but most times it comes up in a lump. Then I have to press it down or the needle drags. It is not nice and it is not pleasant. I have tried to explain to them, the case of getting older. It is five injections, now doing four. If I had been 40 years younger, they would do something about it but at this age, they let you waffle on and just ignore you.

Vera spoke at length about a period of hospitalisation that she had which was a rather unpleasant experience. Marjorie said it felt like being thrown on the scrap heap but did not want to be a burden on the society.

We talked about getting older with diabetes and the complications. Marjorie admitted that:

The group has made me more aware of the complications because before I knew about them, but it was like “hey what” you know and now you are aware that there are certain things that you mustn’t do and the group has helped me immensely and I know we are coming to the end but as I said to you, I think I would miss it. We still have a lot to offer each other, not in the way we started. When we started we were complete novices, on how to manage who was having what and each person has helped the other person by saying, you know this is what I take, this is what the doctor said and why don’t you try this. We have helped each other to be more aware of what is going on. The group has been great.

Jillian remarked how dangerous the condition can be and how it affects all the other organs. Bea thought that she knew everything about diabetes but when she came to the group she discovered that:

Marjorie led this part of the discussion beginning with what she had gained from attending the group. She said that she knew nothing about diabetes following diagnosis and only learnt about it when she joined the group. She said “this group has taught me about diabetes”.

Jillian echoed similar views and stated she had learnt as well, “together as a group we have become much more aware of what diabetes can do to your body”. The meeting ended on this positive note and I informed them that the final session for the inquiry will be in September.

Action

The women brought up an action of staying as a group. I shared some of the findings and early observations that had emanated from the inquiry so far and outlined one of them as being ‘Guyanese people love food’. Both Jillian and Vera said “absolutely”. Pam believed that we had the nicest food. Marjorie confessed she had managed to walk and spoke enthusiastically about her achievement.

I reminded the women at the beginning of the session that we had agreed to devote the first half to questions for Mary and the second half for more generalised discussion about actions. I am aware that I have been preparing the women for the ending of this particular group but also enabling them to think about the type of group that they might like to hold in the future.

It is obvious that the group has helped the women in developing their understanding about diabetes judging from the comments that were received. Pam’s repetitive stories within the group caused some concern however it is unlikely that each individual will participate equally in a group situation as it is within groups that individuals will agree, disagree, argue, debate and challenge the views of each other. This has certainly taken place in some of these sessions thus creating new learning experiences for the women when they have had to confront someone in the group. However when I put the tape on, there was a period of silence for them to reflect.

Another key issue that emanated from the group is the marginalisation that women feel as service users because they perceived practitioners/healthcare services as not interested in them as older women. Ageing brings its own set of problems within the health care system but ageing, having diabetes and being a member of the BME community has its own level of complexity which the women found difficult to untangle. In their discussion they claimed resources were rationed as you get older, and this could affect the individual’s quality of life.

Women belonging to the same cultural group with common beliefs and values can be beneficial and is a good explanation why the group has worked for them. It is important that their work is disseminated as they give an excellent picture of what it is like to live with diabetes, the trials and tribulations, which I needed to capture within the inquiry.

With reference to the dynamics in the group, I am not convinced that this group has gone through Tuckman’s (1975) five stages in a linear way. As a group we got to the performing stage of Tuckman’s model when the women agreed on producing a recipe book but it felt that there was an element of storming re-emerging in the group.

Fourteenth Session: Evaluation

The final group session took place at my house. All six women attended. Agnes had made a special effort because she had not attended many sessions due to being abroad for a specific period of time.

Bea commenced the session with much laughter prompting the women to say something but there was no response. We all waited in silence then decided to evaluate by identifying the strengths of the group followed by the weaknesses. Bea reminded the group she had learned a lot from their different experiences. She also informed the women that she had fallen three times and was concerned as she had been experiencing similar feelings to when she was first diagnosed with diabetes. Vera suggested that her blood sugar level may be too low. Bea admitted that she had been rationing the glucose sticks that she uses to monitor the levels because the hospital and GP had limited her amount. The women encouraged her to ask for more sticks.

Bea suggested that:

We should continue once a month at each other’s house. As I said before, I have learnt a lot from the group and I enjoy it.

Bea then talked about recent problems she had with her eyes, possibly retinopathy, a known complication of diabetes. Agnes then summed up what she had gained from coming to the group. She stated:

Jillian too reminded the women how much she valued the sessions when it came to that time of the month. Marjorie too responded by saying what she had gained from coming to the group. She said:

Vera captured what it felt like when she was first diagnosed and how the group has helped her:

Pam summed up what she felt she got out of the group. She said:

The women did not have any suggestions regarding how we could have done things differently. However I also took the opportunity to share with them what I felt I had got out of the group. I informed them that I had actually moved away from the Guyanese community, due to where I lived and worked and had only a few Guyanese friends with whom I have remained in contact. This group had brought me back into a Guyanese community because I recently attended many cultural and social events. I too was thinking about growing older in this society and what would happen to me. Vera reinforced the point that the women in group have connected me to “my people” and Agnes stated “your culture”.

Connecting with your roots was the focus of the next part of the discussion and some of the women identified how they too reconnected. There are 55 Guyanese organisations, mainly in London and Southern England. People also reconnect with Guyanese living abroad on a regular basis through reunions and other social events.

Vera shared information with the group about the Diabetes UK lecture that she attended yearly and the need for volunteers to talk to people from the Caribbean about diabetes. Pam felt that the group should be involved in something like that. Vera asked if any members of the group wanted to attend. I agreed to go but the other women said they will inform her later.

The women talked about writing a booklet consisting of about two to three pages about their experiences in the group that they could share with the Guyanese community. We now had a list of Guyanese organisations that we could disseminate the information to. The booklet was still in the very early stages however Marjorie had already written some of the content which she shared with the group. Vera suggested it should be simple and to the point. The women wanted the booklet to reflect what they have learnt about diabetes whilst in the group. They all agreed to send the information to me so I could collate and return to them. Further questions arose regarding whether to include telephone numbers and how to preserve anonymity. I suggested that initially I could put my details on it. As there was no further information the session drew to a close and they all agreed to meet up in November to review the booklet but to remain in contact by phone.

Whilst the women commented positively about their experiences in the group, I also asked them to respond to things that did not go well and to suggest how the group could have been improved. I have been charting new territory which has been a steep learning curve for me and the women. With regard to evaluation of the group sessions, I came prepared with a list of questions but the women drove the discussion in the direction that they wanted. This meant that some questions were ignored and others discussed as part of the conversation. The women were given space and time to reflect on their experiences of living with diabetes which I felt had been achieved.

This was a euphoric session with much laughter as all the women attempted to evaluate the group experience. Agnes had missed many of the group sessions yet she admitted that the group was very important to her. In fact she thought that the information shared was of high quality which she valued. The women were aware that this was an evaluative session where they were being expected to evaluate what we had achieved as a group and to discuss their plans for future groups. Their aim was to continue the group but in a different guise possibly with men. They were aware that the inquiry was coming to an end but not necessarily their group sessions. They could carry these on if they wanted to.

They remarked on how much they had changed whilst attending the group and would like to produce a booklet in order to share their experiences with others. Via my telephone conversations with them we had talked about producing something that would capture the women’s experiences of living with Type 2 Diabetes following their decision not to pursue the recipe book.

I shared some of my feelings with the women by reflecting on how I felt when I migrated and lived within a different society. Both my supervisors considered this research is also very much about me finding my place in this society. For example, the inquiry has made me reflect on my own migration to the UK. The whole issue of reconnecting with my community has made me think and reflect on this experience and question my reasons for studying this specific group of women. Perhaps we had reached Tuckman’s (1975) final stage of adjournment as the purpose had been fulfilled but rather than sensing insecurity, I felt there was a euphoric feel to this final session. Perhaps because arrangements were being made to meet again socially, the women did not feel the group was ending. It was merely entering a different phase.

Discussion: Fourteen PAR Group Sessions

We held 14 PAR group sessions which six women attended over 18 months. Still in keeping with the Koch and Kralik’s (2006) look, think and act analysis framework, I analysed the data that emerged from the groups using initially that framework to understand the group dynamics that the women engaged in, the personal actions plus the final group action achieved by them. The cyclical nature of PAR encouraged them to reflect, learn from each other and from their experiences which further enhanced their current lives. Reference and application has been made to Tuckman’s (1975) approach to group dynamics within the sessions. The women had their own expectations regarding the kind of diabetic service that they are looking for which was an important issue for all of them. Finally a reflective account of the facilitator’s role outlines the skills developed and other areas that could be further enhanced when engaging in future groups. A log of how these were developed was kept in a reflective journal.
Looking

As previously mentioned in Chapter 5, “looking” entails gathering information and building a picture. In this context I needed to assess what story was being created by the women in the group sessions. The women were hungry for more information about diabetes even though many of them had had the condition for several years; they were looking to find out more either from each other, other sources or from a specialist who attended two sessions. Two members of the group brought in a range of materials for them to review. Others started to search the internet to find out more about their condition. They were also looking for a more equitable diabetic service with similar resources for all. Some of the sessions became educative about their condition. There was an impetus to change their lifestyles, review their current eating habits even though they loved food, recognise the physical complications of diabetes, become more assertive when engaging with health care practitioners, monitor their glucose levels regularly and share their experiences of living with Type 2 Diabetes with each other.

The participants were encouraged to think, reflect and interpret their experiences while in the group setting. These reflections were also interpreted by the researcher and feedback given to the women. As they reflected, similar issues emerged that were captured in the previous chapter and resulting constructs for example, the delay in receiving a diagnosis affected their health, sense of shock that occurred for some of the women, family history, feeling depressed/anxious, the use of alternative therapies to manage the condition and the benefits of maintaining Guyanese connections. Different issues also emerge from these group sessions such as the need for a more responsive diabetic service that was likened to a well woman clinic and Guyanese foods may not necessarily be culturally appropriate for them within a diabetic diet though it connected them with their roots.

During the action phase of PAR groups, the researcher monitors the actions that the participants make (Koch & Kralik 2006). From the outset the women worked collaboratively in the group and tried to maintain their personal actions. There is evidence from the transcripts of the group sessions that some were starting to take regular exercise, monitor their glucose levels, make changes to their existing diets by reducing the amounts they ate, share information relating to diabetes education, supportive of each other and kept in contact outside of the scheduled sessions. One woman managed to have her diabetes reviewed after eight years and requested a referral back to the hospital diabetic service which had been granted. Other women returned to their respective GP services requesting further investigations and check-ups which had been denied. They were all taking alternative therapies even when it was suggested by the diabetes specialist nurse that they should consult with their doctor when taking additional substances with prescribed medication.

The original group action which was the development of a Guyanese recipe book that would incorporate the Guyanese foods that the women ate was considered to be inappropriate for their dietary needs. Research carried out by one of the women identified the high carbohydrate and calorific value in these foods. A later decision was made not to complete the book as they recognised that they ate a wide variety of foods. The women agreed to produce a small booklet based on their group experiences of learning to live with Type 2 Diabetes that could be shared with the Guyanese community. A crucial part of the PAR process is about reform which in this context is the production of a booklet that the women will use to reach out to the Guyanese community to educate them about the condition.