Reflections: The facilitator’s role

While reflecting on this second group session, this was a more focused session on mainly medical questions regarding the management of their condition. I had given each woman a voice to raise her concerns. I was not a diabetes specialist nurse. My role here was as a facilitator and researcher but these questions could not be ignored. I realised that these questions required answers and thought about the timing in bringing a diabetes specialist nurse to talk with the women. But this was only the second session therefore I felt I could not introduce someone new at this stage. We were just becoming acquainted. I needed time to understand the group dynamics. In collaboration, I asked whether the women would like a diabetes specialist nurse to attend but they suggested having someone later that year. However it was important for me to keep a record of their questions. In light of the medically focused questions raised, I recognised the need to increase my own knowledge and understanding of diabetes. I sought relevant journal articles; I liaised with diabetes specialists and kept within the agreed confidentiality boundaries.

It seemed that the women liked being in the group and could see the benefits in sharing information, giving advice and being supportive of each other. There was much laughter throughout the session that made us feel relaxed.

Analysis of the second PAR Group session

The group was still in the early forming stages according to Tuckman’s (1975) model. The group goes through a series of stages as relationships are formed and later become more established. This process and its critique will be discussed in more detail in the final section of this chapter.

As I read more about diabetes and in particular, hypoglycaemia, I became concerned about the complications the women were talking about and the effect these were having on their bodies. Seeking medical attention seemed urgent, yet when they informed their respective GPs/health care practitioners they appeared to be ‘fobbed off’. They stated that they were unhappy about the apparent inequitable and fragmented services. It seemed that the choice of treatment depended on the clinic they attended and whether funding was available in their local area. Advice was often contradictory.

Action

The women agreed to take control of their long-term condition rather than relying on health care practitioners. Any pressing matters that arose in the group that needed immediate answers, I suggested to the women that they should discuss them with their GP. They were already becoming more informed and I was beginning to become more comfortable with the PAR group process. I reflected on the learning that was taking place for us all as we immersed ourselves in learning more about diabetes and the PAR process.

Third Session

By the third group session we had got into a familiar routine. We ate lunch quite quickly as only Bea, Vera and Pam attended this session at Pam’s flat. Marjorie had been unwell following a series of investigations, so sent her apologies.

The session commenced with a discussion regarding the actions they had taken. Vera discussed the actions she had taken prior to starting the group. She said:

I had already taken some actions which was to get away from the GP set up and to get back to the hospital where I knew the specialists were and to get them to look at my medication which hadn’t been looked at for eight years which is wrong and so that is what I did and also to check on the pains that I have been getting, problems with my leg and out of that I had my insulin changed, able to lose one injection, down to four now rather than five a day.

As Vera spoke, we listened attentively. Vera also discussed her vitamin D deficiency so Bea kindly reminded her that “if you have a deficiency then you only needed to go out in the sunshine for ten minutes”.

There was a long discussion about complications as a result of diabetes, rather than matter of fact, the women were taking these seriously. Vera and Pam talked about a similar eye sight problem that had arisen. Vera suggested that her eye problem may have been caused by the hair colour the hairdresser had used that got into her eyes. She wondered if a similar thing had occurred with Pam. Both of them had since seen their GP and there had been an appropriate response and treatment. Bea interjected at this point and asked Vera how many cataracts had been removed. Vera informed her that she had them removed in both eyes but also had laser treatment which had been effective. This led to a discussion about lasering eyes and what was involved in this procedure. Bea expressed some concern and apprehension about having hers done. Pam reassured her but suggested that it needed a specialist to do this type of procedure. She informed them where she had hers done and suggested:

As diabetics it is best to have it done. Get rid of the cataracts especially if you have diabetes.

Bea was interested in obtaining information from Vera about lasering.

Bea changed the topic and talked about the service that she was receiving from the GP. Bea said:

There is a nice diabetic nurse that looks after me. I think she is doing a good job. I don’t mind staying with them but every time I say can I go to the hospital, they say oh no, we can do it right here.

Vera asked Bea if the nurse at the surgery had the appropriate qualification to prescribe insulin. She explained her diabetic nurse could not prescribe insulin. Vera captures the feeling at this point in the conversation about being assertive, she stated: “you have to stand up for yourself and insist otherwise they will just assume that everything is fine”.

The dissatisfaction with the service that women had received to date was still present and the perceived failure of the practitioners to meet their needs was still obvious and discussed in some detail during the session. Information was exchanged but often I was not sure about its quality. I would need to read more about diabetes and service provision.

In terms of the group dynamics, Vera was dominant and held the floor for much longer than Pam who said very little. Vera was knowledgeable about diabetic eye conditions which she was willing to share with the others. She had been extremely knowledgeable throughout the sessions so far and had played a significant role in answering the women’s questions. I encouraged Bea to have a voice as she tended to be a quieter member in the group. The women were beginning to establish relationships outside of the sessions. There was reciprocity among them.

Actions

Inconsistencies in treatment advice were a concern. Women declared that they felt they had not been given a choice of service or treatment. Vera and Pam decided to explore their concerns further with their GPs. The women expressed individual actions they wanted to take before we met again. These included Vera continuing to manage her diabetes and take vitamin D tablets as she was experiencing a deficiency. Bea wanted to be referred to the hospital for a follow up appointment regarding her sight problems that had reoccurred despite her cataracts being removed. She was going to be assertive and pursue this line of treatment. Pam needed her cataracts removed but was going to have a further discussion with the ophthalmologist. Becoming more assertive was the key to getting your needs met when you have diabetes and the women agreed they needed to develop this skill.

Fourth Session

This session was held at Marjorie’s home (See Table 4 for those who attended, p141). Pam commenced the session by talking about a visit she had made to the diabetes specialist nurse, ophthalmologist and the podiatrist. This is what she had to say. Pam asked the nurse for a diabetic menu instead she received sheets of paper to write down her own daily food intake. She claimed this was not what she had expected and later informed the dietician. Although she felt reassured by the dietician that she was managing the condition, Pam expressed her worries about her diabetes and admitted that she was eating the wrong type of foods. She said:

Holding the floor, Pam continued to tell women how she felt about her diabetes and the problem with her eyesight. In support, Vera admitted that she too was going through a similar sort of phase. She said:

Marjorie intercepted at this point and talked about the problems she had had since November which included swine flu. She discussed other chronic problems; Crohn’s disease, colitis and/or irritable bowel syndrome. Marjorie claimed she had not received a firm diagnosis. These issues according to her were more important than blood glucose levels as she had lost an incredible amount of weight yet the chronic colon problems remained undiagnosed. The women responded with words of encouragement. Pam eased the tension by recalling a cheerful story of a friend who managed her diabetes effectively and kept the blood glucose levels down to six. She also talked about her mother who lived for thirty years with diabetes but that she had not used insulin.

We again discussed their negative perception of treatments and health services. We then changed direction and talked about things that were going well including their strengths in managing their condition despite not feeling supported by the health care providers.

Action

The conversation switched to the actions that the women could take for the next few weeks, as the session was coming to an end. They discussed their planned personal actions that included taking more exercise, managing blood glucose levels and sticking to a healthy diet. The women congratulated Marjorie on the progress she had shown since attending the PAR group especially the change in her diet.

Vera talked about the effort she had made to attend the session at Marjorie’s house. She had ‘got out of the habit of going out and had got lazy’. She shared her grief in losing her travelling companions: her mother, her sister and her aunt had all died recently. She stated that she was pleased that she had made the effort and was able to contribute.

Understanding food preferences, Vera suggested that the group could develop a menu book for Guyanese people diagnosed with diabetes. It was agreed that the women wanted to introduce an element of choice to the rather bland diets and felt that this was one way ‘we’ could do it. Vera would bring information about menus to the next session.

I had completed the research process apprenticeship of this inquiry and had formally become a PhD candidate. I had recruited four more Guyanese women, and after the one to one interviews were completed and the new recruits had received their validated accounts, I then asked the four women in the existing PAR group whether we could expand. Vera, Marjorie, Pam and Bea responded positively to increasing the group size.

I recognised that the group dynamics would change and that I would need to be observant. Already Pam was taking centre stage. This could become a problem in future sessions. I needed to think how we could manage her repetitive contributions. I reminded myself of all the personal health achievements that each woman had made since joining the group and that the process was likely to be beneficial for the next four women to join.

Analysis of the fourth PAR Group session

Women all talked about eating healthy food, however only Vera abstained from eating black pudding, the highlight of the meal prepared by Marjorie.

Psychological issues seemed to be one of the key features discussed in this session. The atmosphere was tense in the room as they shared their innermost feelings. The women described how they felt in terms of trying to balance what to eat and to keep their blood sugar levels down. This balancing act seemed to cause feelings of depression and anxiety. Bea tried to reassure them that they should not be worrying so much about their glucose levels as it naturally increases with age. The women asked if their higher blood sugar was a part of the ageing process rather than a body dealing with diabetes. While the others wondered about a ‘touch of sugar’ being part of ageing, Vera did not accept this readily.

Most women had to travel some distance by public transport, but they seemed to think that being in the group was important and worth the effort. Bea remained the quiet member but knew when to raise pertinent issues that stimulated further discussion. Relationships were beginning to form as both Vera and Marjorie discussed going on holiday together. In considering Tuckman’s (1975) theory of group dynamics then the group is at the storming stage where some members of the group are vying for position as conflicts and power struggles were emerging between Vera and Pam. However the conversation refocused again on the GP not responding to their chronic condition and other physical complications and the women reiterated being ignored by them. In the group they had a voice.

Fifth Session

By the fifth session, a new participant who agreed to be interviewed asked to meet Vera, Pam, Bea and Marjorie. I discussed this matter with the women who agreed that Jillian should join them for lunch at Bea’s home. The women felt it would give them the opportunity to meet her and to put her at ease. Following lunch as agreed, Jillian left the group and the more formal and taped part of the session commenced.

Marjorie commenced the conversation by admitting that she had not taken her blood glucose levels. Vera shared with the women the menus that she had brought in that showed the carbohydrate and protein content of certain key foods that they should eat. Pam changed the topic to diet and informed the group that she had still not mastered the advice offered by the dietician regarding what she should be eating. She kept a record but problems arose when she was out socially as she could not find appropriate food to eat. I asked whether she could take some food with her. Pam reflected on this question and after a while responded by saying that perhaps she could take a small food flask but then expanded on how the condition can take over your life. She described how it felt when you have the condition “it is a whole life time like any other person but the illness takes over all the time and it is like a balancing act which you don’t win”. Pam continued talking about her physical problems, the most recent being “her swollen feet”. She informed the women that she had seen the GP who was going to reduce her blood pressure tablets.

Vera also shared some information she had received from the Balance magazine with a separate testing guide. She remembered the previous group’s session on testing so thought it would be a good idea for them to know why to test and what to do with the results.

Pam further explored with the women her plan to stop her Metformin because it was making her ill. She said that “she was going to manage her condition with herbal treatments and diet”. At this point we talked about whether you could just stop taking the prescribed medication. The women responded individually. Marjorie thought she could if she is taking alternatives. Vera thought it was a vicious circle. Bea felt if she wanted to she should try it. With the varied responses that Pam received from them, she commented that she could reduce her blood glucose levels if she ate alternative things for example fruits from Guyana like paw paw and vegetables like yams and plantain. Vera then offered her a word of caution about discontinuing Metformin. Vera said “your system has got used to it so the insulin that you are producing is partly dependent on your reaction to the Metformin in your system. If you remove that, what happens?”

There was a further discussion among the women who talked about friends whom had stopped taking Metformin without any repercussions but they recalled other stories of individuals who had to go back on some form of medication when they stopped.

Vera changed the focus of the session by handing out information on Caribbean recipes for the recipe book. The women discussed vegetables like green bananas and ackee that were not eaten as part of a Guyanese diet as these recipes were Jamaican. They discussed the various actions that they intended to take before the next session. Bea said she “was going to make exercise a priority” whereas Vera admitted that she had seen a slight improvement in her condition. Marjorie agreed to carry over her actions from the previous session to do more exercise. Pam told them she was going to bring in another book on diabetes to the next session to share with them.

On reflection, the emphasis in the session was on food, as usual. However it was also about not taking prescribed medication. Pam who again demonstrated a strong belief in alternative therapies made known she wanted to cease her medication. I did not expect the women to give Pam words of encouragement. Only Vera seemed to give her a word of caution. There was tension and even conflict among the women whether to continue with the medical model of treatment for diabetes or consider other options. I clearly needed to consider how this should be handled wisely. I had listened and the women had strongly voiced their opinions. I refrained from interjecting. I wanted to witness the way the women intended to resolve this tension without my interference. But given my evidenced based background I was in conflict.

There seemed to be a lot of misinformation among the women that highlighted their educational needs. This could become a real concern as the majority of these women have had diabetes for several years showing the signs of serious complications yet they were prepared to stop their prescribed medication without consulting the medical profession. I needed the expertise of a diabetes specialist nurse and seriously thought about bringing forward her entry into the group.

Food and diet remained a key feature. There was a preoccupation with food and tension when trying to balance a healthy diet versus eating what they would like, preferably food with Guyanese flavours. A question arose regarding what was truly Guyanese food because other Caribbean islands had a similar diet. Perhaps through their food, the women were preserving their identity of their roots and heritage.

Vera was the problem solver in the group as she had a clear authoritative voice that encouraged the other women to listen to what she had to say. I believed Vera gave Pam some sound rational advice about discontinuing her Metformin but this was ignored. However Vera was emerging as the leader of the group even though Pam is more vocal. I believe that they were both vying for that position within the group which was still at a storming stage (Tuckman 1975).

The group action recipe book was the clear choice but ‘we’ may require the expertise of a dietician to discuss calorific values of Guyanese foods in recipes.

Sixth Session

Two new members Agnes and Jillian joined the group however Shirley and Jane whom I had interviewed declined joining. I kept a dialogue going with Jane by telephone throughout the life of the inquiry but Shirley decided not to remain in contact (See Table 4 for attendance list, p141). We welcomed the new women to the group with formal introductions. I gave a quick resume of the inquiry and participants’ roles as co-researchers. We also re-established the group norms.

The four women from the current group reported on the actions they had set from the previous session. They all felt they had achieved these and wanted to share them with the group. Vera and Pam commented on their improved healthy diet and the way in which they had been monitoring their sugar levels. Bea remarked that she had been walking on a regular basis again and made the connection between walks and the lowering of her glucose levels. They all talked about the importance of exercise especially keeping fit within the home environment during the winter months.

Jillian spoke spontaneously about her current glucose levels, medication and diet. Agnes talked about being diagnosed recently. She talked enthusiastically about the diabetic course she had attended and the good service she had received from the diabetic clinic. She had felt depressed following the recent death of her husband and the effect the loss was having on her diabetes. In response Vera highlighted in one sentence that “diabetes is such a powerful thing that you have to learn how to live with it”. Jillian shared her experience when first diagnosed. She said she too had been unaware of her symptoms that were related to diabetes and this had led to a delayed diagnosis. Only Agnes is the exception in that her diabetes was detected early and she has had excellent health practitioners follow up, according to her.

Both Agnes and Jillian talked about their children, family members and spouses who also had diabetes.

The women reported the daily actions they took in navigating their way through the pain and suffering in their everyday lives. Vera captures some of these feelings in her comment:
I don’t think there is a lot of research being done into the associated aches and pains with being diabetic. Diabetes is an actual savage onslaught on your immune system. It is never going to be the same again. It will only get worse. We can never get better. When you get an ache and pain, it sends a signal it is your turn today. I think what the hell, just behave yourself. It must be related.

Women agreed with a further statement made by Vera: “you have to tell yourself that you are not ill because if you label yourself then you do feel ill particularly during winter”. Pam informed the group that she was going to “get rid of her diabetes and arthritis”, but Vera stopped her in her tracks commenting “you have to accept it”.

Agnes raised the issue of hypoglycaemic comas which had been discussed in the first session. She explained the advice she had been given by the hospital to have something sweet with you at all times. Vera advised Agnes to carry a card but Agnes responded that she had a bracelet. Marjorie too was advised to carry identification as she admitted that she did not have anything.

I used this opportunity to share a research paper (Diabetes UK funded Newcastle University study - 11 participants took part, reversing Type 2 Diabetes with a strict low calorie diet of 600 calories a day under close supervision of a medical team). I had asked the women to read it if they could beforehand? This was followed by a lengthy discussion among the women about when you eat something too sweet and the effect this can have on the diabetes. Vera said:

I interjected at this point by highlighting the positive things Vera had achieved for example, the fact that she had made the long journey to my home to which the women agreed. As time was moving on, I asked the group whether they wanted to share anymore of their experiences. Vera offered to lead the discussion regarding the recipe book at this point.