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

In the previous chapter I gave an introduction on group dynamics and how groups are used within research studies. Reference has been made to two theorists, Tuckman (1975) and Lewin (1947) who have contributed to my understanding of how group decisions are made and why power exists in group relationships. Tuckman (1975, 1996) believed that these stages are necessary in order for a group to grow, develop and deliver results. In applying the model to the PAR group, it was a non-linear process as suggested by the literature. We kept reverting back to the previous stages during the group sessions before we finally reached the adjourning stage within Tuckman’s model.

In these particular sessions the dynamics were an important issue as the participants communicated and interacted with each other on two levels, verbal and non-verbal. It was easy to hear the verbal messages that were being conveyed but the non-verbal messages can be more subtle so the observer has to be fully aware of what is taking place when observing the situation. The PAR group worked well from the beginning as the women seemed to gel. Those who attended were committed and interested in sharing information with each other and developing a greater understanding of their long-term condition.

Initially the group seemed to go through the first two stages, forming and storming of Tuckman’s (1975) model quite quickly. Boundaries were tested and all the women soon gleaned what was acceptable behaviour in the group. Two of them were particularly dominant in the group and one member remained quiet but felt included. As the sessions progressed the other women became more vocal and contributed to a free flowing discussion. However the storming stage occurred when the two dominant participants seemed to be vying for a position as leader in the group. During this stage as relationships develop and tension increases conflict arises. Both women were articulate and brought in majority of the literature on diabetes which they willingly shared with the others. Eventually only one of them emerged as the leader as she was recognised by the others for her expertise which was often commented on.

One of the principles guiding this inquiry was democracy. Democracy in groups is another issue that both Dewey and Lewin explored in terms of how this is created within the group structure. Democracy within this context is linked to styles of leadership within the group setting. Lewin (1947) describes three clear styles, democratic, autocratic and laissez-faire and concluded that there was more openness and friendliness in democratic groups. I sensed this with the atmosphere within the group sessions even though there were disagreements and conflicts there was no hostility or aggression towards each other. The process felt democratic and participative when I considered Arnstein’s (1969) model of participation. The model is discussed fully in Chapter 4. Participants showed respect for the emerging leader who was very knowledgeable about diabetes. Storming stage was overcome as the women had a project to channel their energy into and to bring about a cohesive strand to the proceedings. A group identity was being shared as the group developed a community spirit, connectivity and resistance is overcome. The norming stage is reached.

Everyone became committed to producing a diabetic recipe book for Guyanese with Type 2 Diabetes as the action project. Each member agreed to submit a recipe for the book. This I would describe as the performing stage of Tuckman’s model where the group has a shared vision but disagreements can still occur which are resolved.

In a subsequent session a suggestion was put forward by the leader of the group who sought the views of the others whether it was a good idea to continue with the book. She gave a rationale for this suggestion as she had become aware that her diet consisted of a variety of foods and not just Guyanese. She therefore shared this analytical viewpoint with the group who too had arrived at a similar realisation that Guyanese foods were high in carbohydrates, fat and calorific value which conflicted with what was required for a diabetic diet. Nevertheless some of the participants wanted to still produce the book. This announcement caused some tension that resulted in a storming stage due to mixed views regarding the suggestion being put forward about the book.

Finally after much debate and discussion, a decision was reached not to pursue the book any longer. Coupled with this decision, further disagreements took place as the participants started to show frustration with another member of the group who kept repeating similar information at each session and had not moved on in terms of managing her condition. The leader of the group managed the situation by pointing out to her outside of one of the sessions that she needed to listen more so that the other women could speak. Kaner et al. (2007) suggest that decision making in groups is not an easy textbook process with everyone staying on board every step of the way. It can lead to frustration when decision making is not presented as a healthy flowing process (Arnstein 1969).

The group settled down again and reverted back to Tuckman’s (1975) norming stage as they achieved their own personal actions plus a new group action project was proposed. Agreement was reached by all of them regarding dissemination of the information following the end of the inquiry. Further suggestions were made about the group disseminating information to the wider Guyanese community. The group had achieved Tuckman’s (1975) performing stage and possibly the adjourning stage as the task has been completed. The PAR group sessions have ended and the purpose fulfilled. The women, though, have continued to see each other socially as a group.

As previously mentioned, Lewin (1947) contributed theoretical information to aid our understanding of group dynamics. Two terms that he claimed resonated with group dynamics are interdependence of fate and interdependence of task. Interdependence of fate did not necessarily occur in this group. The women had a similar middle class background but contrary to Lewin’s description of the term, the women’s fate did not depend on the fate of the group. Their personal actions seemed to be a priority in the wider scheme of things. Conversely the task of interdependence was more relevant as they had come together as a group and had decided on a task. Therefore, they were dependent on each other to complete it. One task was discarded but each member contributed a section for the booklet which was the other option.

Other factors that Lewin (1947) considered in group dynamics consisted of feedback and unfreezing, a change theory perspective. Lewin borrowed the term feedback from electrical engineering but the emphasis here was to give feedback in the group situation. Lewin believed that participants giving feedback to each other in a group setting stimulate change in the individual. The participants constantly provided feedback to each other in the groups regarding the progress they were making in managing their condition. As a facilitator I also gave feedback during the sessions on their strengths and afterwards as a summary sheet of what took place and actions agreed. Unfreezing is another factor that participants use to challenge values, beliefs and practices in the group situation. This occurred in the group to a lesser degree but one particular participant was challenged more than the others. However they all demonstrated a change in behaviour when comments were made regarding the management of their condition and how this could be further improved.

I believe the women have gained a wealth of knowledge from each other via the sharing of information regarding diabetes, listening to each other’s problems and learning how to manage their eating patterns. They all had a thirst for knowledge about diabetes which the group helped them to understand how to improve their self-management strategies and to recognise the complications that were impacting on their physical health and wellbeing. Even those who had had the condition for several years for example, found the exchange of information useful and thought provoking.

When the diabetes specialist nurse was invited to attend the group, they all valued the two sessions and gained valuable knowledge from the questions asked which aided their understanding about the condition and helped to eradicate some of the misinformation that they had acquired over a period time. The women remained a harmonious group who were willing to collaborate with each other and make decisions when required to.
Facilitator’s role

The facilitator’s role was unique to me within this context and I found that this process required different skills especially as the women in the group were also co- researchers and very vocal. I used my journal to record my reflective thoughts about my role in the sessions as this is part of the rigour of the research.

The women decided on their homes as the venue and topics for the agenda. I adopted a mainly listening and observational role thus encouraging the women to drive the discussion in the group sessions. I also recognised the need for impartiality, explore any misunderstanding, encourage the women to build on their strengths and to consider actions to reform their personal lives. I believe that Kaner et al. (2007) sum up what I tried to do in the group sessions. “The facilitator knows it is essential to stay impartial, honour all points of view and keep listening so that each and every group member has confidence that someone understands” (Kaner et al. 2007:34) .

The norms or rules were used to keep the women on track. We reminded each other about the norms and as new members joined the group, these were re-established and recorded. The PAR process gave the women a platform to air their views about living with Type 2 Diabetes. The group encouraged collaborative learning, co-operation, personal and mutually agreed actions.

As I reflected on my facilitation skills, perhaps I could have been less direct on occasions and given the women more encouragement to initiate the discussion in sessions. Perhaps I could have intervened more when one participant kept repeating the same issue at each session but I wanted the group to action this behaviour hence why I remained silent. However a safe environment was created where the women could privilege their feelings, beliefs, customs and values of what it meant to be living with Type 2 Diabetes.

I needed to recognise throughout this phase of the study any actions taken by the women had to be decided by them and not me. I learnt that skill and behaviour as the group progressed and realised that actions needed to be decided by the group if they were going to be sustained after the research has been completed. These thoughts, feelings and viewpoints were recorded in my reflective journal.

In this inquiry where I belong to the same Guyanese culture as the people interviewed, a major issue in the establishment of rigour is the notion of subjectivity. The difficulty is that subjectivity can both enable and disable. On the enabling side subjectivity allowed me to establish my research domain and that made me alert to traditional, cultural and post-colonial Guyanese orientations held by my participants. However I needed to be aware that my personal orientations were rooted in the same cultural background and that could potentially make me blind. I have reflected on this notion of subjectivity in Chapter 8.
Conclusion

The use of PAR in these group sessions was to assist the women in understanding their situation of learning to live with Type 2 Diabetes, the complexity of the long- term condition that can cause an onslaught on their bodies. Thirteen constructs emerged from the one to one interviews in the previous chapter and 14 PAR group sessions in this chapter. It is important to mention that not all constructs were discussed in the same detail in the groups as the women expanded on the issues that were relevant to them. The emphasis within this chapter was more on the group process rather than just the constructs. The constructs discussed ranged from the difficulty in obtaining a diagnosis to the impact that it caused when they eventually received one even though many of the women were predisposed to diabetes due to a strong family history. Taking control of their long-term condition meant they needed to have medical management and self-management knowledge and skills but medical management was wholly inadequate for some of them. I have separated the two aspects of management when self-managing because I felt the women lacked medical knowledge of their chronic condition and this is borne out from the medical questions that they asked Mary, the diabetes specialist nurse who provided them with the answers that they failed to obtain from their respective health care centres. My rationale for bringing Mary into the sessions was due to the fact that I felt the women were misinformed and I recognised a gap in their knowledge. It is not surprising how they felt when they had to cope with the fluctuations of their blood glucose levels although prayer helped them. Many of them had not had the opportunity to enter into a dialogue with their GPs or diabetes specialists in order to obtain answers to their questions. Only Agnes had received a current diabetic package of care. The health system had not met the other women’s diabetic needs as they were still hungry for medical information even though they had had the condition for several years.

In managing self, they needed to consider lifestyle changes such as exercise and healthy eating which improved as the inquiry progressed. The women shared their innermost thoughts and feelings with each other and developed confidence in a collaborative environment that was each other’s homes which may have been conducive to feeling safe and relaxed. I argue that being Guyanese together accelerated their learning which led to their growth and development and cultural cohesion.

There were several facilitator dilemmas that concerned me which included the use of alternative therapies among all the women, the huge portions of Guyanese food that they ate, one of the participants periodically choosing not to take her medication anymore, one repeating the same information during the sessions and two members being dominant and vying for position as a leader in the group. As I reflected on these dilemmas, I did not take any action while these issues were being discussed in the sessions however the women took the necessary actions when they asked the diabetes specialist nurse about alternative therapies, recognised that they should be eating smaller quantities and not necessarily Guyanese food when they shared information about quantities of food they should be consuming. We all confronted the participant who kept repeating the same information and eventually

one leader emerged who became a trusted and knowledgeable participant.

Please see below Table 5 (p188) that summarises the group constructs and corresponding exemplar quotes from the participants.

The women had been diagnosed with Type 2 Diabetes many years ago and provided evidence in their interviews and PAR groups that many of them had experienced a fragmented, inconsistent and non-responsive service delivery model that had dire consequences for their health. It also affected the way in which they inexpertly self-managed their Type 2 Diabetes but this behaviour improved as they collaborated in the group sessions. Agnes was an exception; she was diagnosed in more recent years and in receipt of a full barrage of supportive services geared toward self-management of her diabetes.

I reflected on the women’s stories and the PAR group sessions and decided to merge the constructs discussed in chapter 6 under fewer headings because I noticed that many of the constructs were interlinked and similar issues arose in the group sessions. For constructs 1 and 2, the women were exhibiting quite florid symptoms of Type 2 Diabetes yet there was a delay in diagnosis. I have renamed construct 1 consequences of not receiving a diagnosis and construct 2 family history that indicated the genetic pre disposition to the condition. Many of the women had relatives with Type 2 Diabetes. For revised construct 3, self-management, I have incorporated constructs 4 to 8 and 12 which showed the strategies the women used to self-manage and the lifestyle changes they had to accommodate as part of their daily lives. This revised construct 3 now considers the medical management of the symptoms of Type 2 Diabetes and management of ‘self’ as the women learned to take control of their diabetes. Construct 4 is mainly concerned with constructs 9 and 10 which I have renamed psychological issues, for example, depression that can occur but remain undiagnosed. Construct 5 is associated with being Guyanese that addresses construct 11, straddles some elements of 12 in terms of preoccupation with traditional Guyanese food and 13 maintaining contact with the diaspora as part of a survival strategy. (see Figure 3.)

Additional literature will also be reviewed to strengthen the developing thesis that Guyanese women living with diabetes and diagnosed many years ago provided evidence in their stories and in the group sessions that the health care services had not met their needs. When we met as a group the women’s needs were being met for the first time.

In the PAR groups one striking development was that the PAR group process fostered learning about diabetes that had been missing in earlier times post diagnosis. In the PAR group, the women were able to compare service delivery, discuss problems they had encountered with their respective GPs and catch up on the exchange of information. The women worked together collaboratively to bring about change in their lives. This was assisted by the presence of a diabetes specialist nurse at two of the PAR sessions. The women thrived in this cultural environment which I facilitated and their learning about diabetes self-management accelerated.

Consequences of not receiving a diagnosis

It was a common experience that the women felt powerless in trying to obtain a diagnosis. They were experiencing symptoms of Type 2 Diabetes such as dizziness, extreme thirst, blurred vision, feeling tired, drinking copious amounts of fluids, weight loss and genital itching (DH 2010) yet these warning signs did not alert the health care practitioners that something was wrong. It took sometime before they were given a confirmed diagnosis. Delay in being diagnosed was not uncommon and required the women to be assertive with the health care providers about their need for care and attention for example, tests, testing equipment, requests for tablets and/or insulin were common. It seemed that their voices were not heard: the biomedical approach to their care neglected the psychosocial health and wellbeing which is discussed later in this chapter. This delay in being undiagnosed with Type 2 Diabetes left the women feeling confused, lonely and ignored by the health care professionals. Most wanted a confirmed diagnosis before they felt confident in making lifestyle changes (Odette et al. 2004). Parry et al. (2004) came up with similar findings in their qualitative study which discovered that many individuals perceived their GP as unwilling to deliver/confirm diagnosis. They concluded that “being explicit about the diagnosis at first contact may avoid the problems of feeling in ‘limbo’ or uncertain whether individuals had Type 2 Diabetes” (Parry et al. 2004:131). Koopman et al. (2004) suggest that one of the reasons that diabetes may not be diagnosed is due to the fact that the individual’s symptoms are not always clearly defined or they believe it is the normal part of the ageing process. It is only when relatives, family and friends observed the individual’s symptoms that they may encourage them to obtain a diagnosis.

Receiving a diagnosis from the GP confirmed an acceptance that the individual is genuinely ill and encompassed an explanation for their symptoms of diabetes (Richardson et al. 2001; Parry et al. 2004). People though may react quite differently when a diagnosis has been confirmed. This reaction has been likened to bereavement where the individual can go through a period of disbelief, anger, shock and denial (Peel et al. 2004). Marjorie stated in her story that she was shocked when she received the initial diagnosis but then realised “you learn to live with it”. Jillian who was unaware of what was happening to her, sought help from her GP after a relative with diabetes observed her weight loss, tested her glucose levels and highlighted it was raised. Research by Koopman et al. (2004) revealed that people are unaware of the meaning of their symptoms of diabetes even though they may be exhibiting them because the symptoms appear to be vague. Individuals may also choose to ignore their symptoms due to fear that can act as a barrier when seeking consultation with their GP rather than acknowledge that they have a condition like Type 2 Diabetes (Koopman et al. 2004). Surprisingly some of the women were still shocked that they had Type 2 Diabetes even with a known family history and regular visits to the GP.

Dissatisfaction with the doctor patient relationship was a reoccurring theme in the women’s stories and PAR group sessions as they sought a diagnosis for their long- term condition. The women shared with me the ongoing communication problems that existed between them and their GPs following diagnosis. Miscommunication and feeling ignored were key issues in the doctor patient relationship which May et al. (2004) state is not new, particularly in the consultations where there may be disagreement regarding what was said. This disagreement is normally attributed to poor recall when decisions are made between the two parties (Parkin & Skinner 2003). There is also the assumption that the doctor knows best and is the expert rather than developing a relationship with the individual based on mutual respect. The women found this a challenge as they tried to navigate their way through the diabetic services and to engage in a relationship with their respective GPs particularly in response to access to appropriate care. They preferred to be seen as an individual with specific needs rather than as ‘a patient’.

Szczepura (2005) reviewed the research evidence on access to health care by ethnic minority populations and highlighted that it has not been possible to develop a UK overview of disparities in access to the service or to monitor these nationally because the data collected do not provide sufficiently detailed information. She believed that “simply providing an equal service cannot ensure access to care for all people, regardless of their religion, culture or ethnic background. Therefore having access to services should be relevant, timely and sensitive to the person’s needs and having the confidence that you will be treated with respect” (Szczepura 2005:142). Bea said in her story and PAR group sessions that she made every effort to access the GP by contacting him regularly yet it took her a long time before she was diagnosed with the condition even with a family history.