Participatory Action Research Groups

This chapter describes the group process or phase two of this inquiry. I write about PAR as it takes place in collaboration with the participants. I show how they determined what should go on the agenda and the way in which they drove the research and decided on the actions. I followed the cyclical processes of ‘looking, thinking, and acting’ as an iterative process. My reflections about the process are included particularly my observations of group dynamics. All sessions were recorded and transcribed. A description of the PAR analysis process used is discussed in Chapter 5.

I pondered about the best way to facilitate discussion in the group: whether to share the 13 constructs from the one to one interviews or to start the conversation from scratch. I decided to start from scratch precisely because I wanted the women to take control of the group discussion and set the agenda for subsequent sessions based on their needs. Nevertheless I kept the 13 constructs in my mind as they were talking. I reiterate the constructs as: being diagnosed, symptoms, family history, gathering information, self-management/alternative therapies, expected lifestyle changes, complications, religion/faith, depression/feeling low, stress and diabetes, being Guyanese, preoccupation with food and maintaining contact with the diaspora.

First Session

At the first PAR group session, we sat around the table at Vera’s home (see Table 4 for attendance p141). We introduced ourselves to each other and to the supervisor. Although the Guyanese community tend to be acquainted with each other, these women had not met each other previously. We agreed that we would have lunch before the discussion.

Vera who hosted the session talked about the variety of dishes she had prepared including rice and peas, salads and chicken stew that reflected Guyanese traditional recipes. Vera said “incidentally ladies I was looking for something that is a nice sweet but I didn’t want to buy anything like a gateau, I have some raspberry jelly and some melon”.

Following on from lunch the women set the agenda for the discussion. I asked them about their expectations from the group. Pam’s expectations were to mutually exchange information about living with diabetes. She said “I can contribute something and others can contribute something to me”. Marjorie agreed with Pam’s expectations but said “I think I manage mine quite well with the exception of the times I cheat”. One of the women asked what she meant by cheating. Marjorie confessed that she eats “things” that she should not eat; she likes to have her “treats”. Evidence of ‘cheating’ was given by Marjorie who said:

Despite this Marjorie claims that she “compensates by being really really good”. Pam divulged her weakness was cashews.

Vera listened as the others spoke and then shared her story with the participants with some new information. In this version, Vera admitted that she also cheated. She said “I am not quite sure where I am heading at the moment”. Vera reiterated the lack of support given to her by the health care practitioners that included her delay in diagnosis and “mismanagement”. She warmly accepted the support received from the Guyanese expatriates living in New York or Toronto. About the first session, Vera said:

It is possibly why I am at the cross roads. So having this sort of group meeting is raised my spirits if nothing else because it has helped me to see that other people are going through the same sort of hazardous situations at times, but also it is nice to meet on a sort of social level. It would have been nice if we had had this sort of meeting say 20 years ago.

There was a chorus of voices agreeing to the importance of meeting as a group. Bea spoke about her expectations, “we can get together and discuss what to eat and what not to eat, it will be a great help to other people out there who are going to develop the same thing”. Bea reiterated her concerns about her family history of diabetes and how little had been understood and done for her mother and father. Bea spoke about her mother who remained undiagnosed until “the end” whereas her father refused treatment because he thought it was just “a touch of sugar”.

Marjorie asked Bea how long she had been on insulin. Bea gave another version of her story and pointed out how she had been neglected by medical staff. The women spoke about not having a voice and one said that doctors “don’t like to be told”. Marjorie started to tell her own story of losing her vision as she was considered to be a hypochondriac by medical staff. Vera told the group she was still enraged by her treatment where she was passed from one specialist to another. Eventually she said “she was seen by a dermatologist complaining about hives. These hives irritated her and caused her to scratch constantly”. Vera reported to the group that this doctor looked at her “in almost disgust” and said “look you may have a few health problems but by and large you are healthy. I just wanted to slap him at this stage” because that was her third visit to see a private specialist.

Pam, encouraged by these revelations shared by the women, shared her own experience. She talked at length (1723 words), repeating what she had shared in the one-to-one interview. These included family history with diabetes, her difficult relationship with her medical practitioners, comorbidities, arthritis and fibromyalgia. Pam spoke about the daily routine of what she eats and reading food product labels.

Pam placed a book in the centre of the table and said ‘this book was given to her when she attended a six week diabetic course, the Expert Patient Programme”. She read out aloud during the session, things from the book she felt the group ought to know. She suggested to them that they should read the book because she believed it would inform them about insulin in response to Marjorie’s concern about the tablets that she was taking and the function of the pancreas.

There was a rapid exchange of information among the women about insulin and tablets. Marjorie confided “my fear is that I am going to end up taking insulin. I really really don’t think I could deal with that”. Marjorie was surprised to hear that Vera self-administered six to seven times every day and that she had been on insulin since 1999. Bea who is also on insulin asked Vera if she used an insulin pen. There was further exchange of information about Metformin and oral hypoglycaemic drugs.

Pam talked about recent research in America which she was keen to share with the group. There was much laughter when Vera talked about a friend who had “a touch of sugar”. “Either you are or you are not”, she said.

Prescriptions for insulin were particularly problematic for one participant of the group, Bea, who said:

One participant said she liked the idea of a psychologist “who stands by your case because you feel really bad”.

Pam claimed that diabetes could be cured and she also assured the group that karela (bitter melon) was an alternative therapy that they should all try. The women quizzed each other about the use of it which was drunk as a tea. Pam advocated beetroot juice and paw paw for high blood pressure. The women said “they had tried various herbal remedies and were keen to share these with each other”.

The women talked about hypoglycaemic attacks. One participant described her symptoms including a severe headache and another participant echoed her agreement and said “snap”. Pam said she:

The women said they “carried a sweet on standby should hypoglycaemic symptoms appear”. Marjorie raised the seriousness of hypoglycaemic coma as she recalled how her ex-husband went into a diabetic coma several times and eventually died.

The women compared how they had all lost weight but had not recognised it as a symptom of diabetes. For example, Marjorie said “I am not complaining but I would still like to know why?” They revealed another misunderstanding when they did not appear to understand the workings of the drug Metformin as they quizzed each other about it.

Vera suggested that better information should be provided about diabetes for those who may be at risk of getting the condition. She asked whether there is an hereditary component which they all agreed should be an item on the agenda that warranted further discussion by the group.

Following the first group session, I based my reflection on Schon’s (1983) model of reflection: reflection in action and reflection on action that was discussed in the previous chapter. I had facilitated groups before but this group felt different because there were certain rules that I needed to adhere to when using PAR facilitation such as “silence is golden and let the women take control of the meeting” (Koch 2006). Being a talker, the effort to keep quiet required practice but I felt able to loosen control and talk less as the inquiry advanced. I discussed my facilitator’s role with the women and we agreed that I would be a listener. I also agreed to keep them focused when they digressed. I saw my role as helping the women to reflect and analyse their situation.

This first group session was easier to facilitate than I had anticipated because the women interacted with each other. As discussed, I did not circulate their stories and/or constructs prior to the meeting. Starting from scratch meant that each woman wanted to tell her own story in the group. In this way they built relationships, as it was a way of introducing themselves to each other, which worked extremely well. They listened to each other and shared their experiences. They appeared to want to be co-researchers in this project.

Following the group session, I considered whether I could have facilitated the group differently. This was a difficult question because I was aware that I was new to this process but realised we took too long over lunch so the actual taped session started much later. At times the session felt very rushed. There seemed to be a lot of content. The women later agreed that we should devote a specific amount of time for lunch and, keep at least one hour for the more formal part of the session and to start promptly. This became another ground rule for subsequent sessions.

The women established their own norms. They were assertive and keen to voice their feelings. They also agreed their own agenda and suggested that the sessions should be in the afternoon as travelling by public transport was easier during the day.

Even though they had some information about each other, the women presented a more concise version of their stories. It is recognised that stories are not always told in the same way (Frank 1997). For example Pam talked more about her sisters who have diabetes and the consequences of their actions in not managing their condition. Her story had had the most gaps following the interviews. Vera covered similar issues but new information was gained about her seeking help from five medics including three Harley Street specialists when looking for a diagnosis. Hives which are a precursor to diabetes was not picked up by Vera’s GP and she waited another three and a half years before being given a diagnosis.

Pam’s voice was dominant in the group followed by Vera’s. If reference is made to Tuckman’s (1975) group dynamics model, this is the forming stage of the process. Pam took control of the session but the women showed a willingness to listen to her. The need for education about their diabetes was evident as Pam used the space to educate the women and her facts were not particularly challenged by anyone. The information in the book seemed fairly authentic and consisted of six documented sessions delivered by a diabetes specialist nurse. However Pam presented some information based on her beliefs about the use of alternative therapies when self-managing. She believed in herbal treatments and remedies that she had been drinking or intending to eat for example, karela, a known vegetable that is grown and eaten in Guyana. Both Pam and Bea had been drinking the tea. However I did not judge this to be the appropriate occasion to voice my views about it but thought at a later stage I would need to invite a diabetes specialist nurse to discuss some of these views that the women held.

What really stunned me was how they gelled together immediately and talked about similar experiences that they have encountered with respect to living in England and in relation to their condition. It struck me that from listening to the women, they felt comfortable with sharing their innermost feelings and certain behaviours like cheating that meant eating foods that they felt they should avoid but felt safe to confess to each other.

Vera’s voice was fairly dominant too as she spoke about her experiences. She has had diabetes the longest in the group but has encountered some negative experiences regarding the service she has received from the GP. I recorded in my notes: was Vera asking for help from the group? Were these her expectations? Bea was the silent member and asked very few questions but listened attentively. Bea wanted further support from the group as she had recently commenced insulin.

It seemed as if this group felt safe enough to not only give their strong opinions but was not afraid to challenge each other. The women offered each other many opinions about diabetes, remedies and diets particularly food eaten in Guyana.

Although most women had been diagnosed many years ago, there was still a strong need for information about the medical aspects of diabetes and health services available to them. I picked up educational needs regarding their condition in this first session, which has some similarity with the fourth construct “gathering information”. There was a thirst for acquiring information. These questions were asked:

What was a normal glucose level?

What were the side effects of Metformin?

Can we use herbal remedies/foods alongside medical treatments?

What health services are available?

The women communicated that they believed that they had been self-managing their condition. It was therefore surprising that these questions still needed to be asked. It seemed that they had based their self-management on spurious information. They did not know health service availability and they attentively listened to one another about access to GPs and the specialist diabetes clinics. This was evident in their interviews and reiterated in the group session. They realised they had a knowledge deficit and asked whether they should have had a group discussion similar to this PAR group when first diagnosed many years ago. In other words they were pleased to have an opportunity to exchange these ideas and experiences ‘better now than never’ in this group.

Second Session

At the second PAR session see (Table 4 for attendance, p141), we ate lunch and Marjorie commenced the discussion by asking about normal glucose readings. This question had been asked at the previous group session and there appeared to be repetition, the reason for which I was not sure. Vera’s response was helpful as she clarified what the readings should be. Pam gave the official glucose reading from her book that she mentioned in the previous session.

Equipment was on the agenda once more. Pam remarked again that she was paying for her glucose sticks and discussed the service she was receiving from her GP. I asked how often they attended the clinic. They all gave varied responses but Marjorie remarked she attended every six months except when she had retinal screening once a year. She expressed her fear of insulin again and asked the group about insulin pens or patches. Marjorie also talked about her recent scare when her reading was 11+. There was a lot of laughter at this point when Marjorie said “she was not doing anything wrong”.

At this point, I asked them their feelings about the group? They all responded by saying “we learn much from each other and we can give advice to others”.