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

This chapter covers a discussion on the constructs which have been merged into fewer headings because many of them were interlinked. As a researcher I considered all the influences impacting on the women living with Type 2 Diabetes, the importance of ‘self’ in self-management and giving the women a voice for the first time to talk about living with diabetes. This included the women’s experiences of the diabetic services provided for them, and together we explored the kind of culturally integrated service that they would like to see for themselves in which health care practitioners can meet the needs of ‘our’ BME community. As a researcher I discussed how as a Guyanese community we learnt from each other in the group sessions, developed and maintained Guyanese connections locally and overseas and explored connections as forms of support leading to cultural cohesion.

I have discussed the framework underpinning this inquiry which has focused on the reassessment of the terms culture, ethnicity and identity as we researched alongside each other. I have revised my position of these terms and recognise that tension can exist when an individual is living between two cultures. Straggling between these two cultures has not been easy for me or the women but I believe this has led to two new terms bicultural competence where individuals develop the values, norms and beliefs of two countries so that they can function in both. We found that we may be able to accept a bicultural identity but as Guyanese we express our ethnicity and culture through food. Conflicts arose among the women when they realised that to self-manage their diabetes effectively, it meant eating the dominant culture’s foods. They have had to accept this position but through group cohesion the women felt empowered to make alternative food choices and bring about change in their lives.

At this stage I tentatively argue that giving voice to Guyanese women who live with Type 2 Diabetes improved self-management and understanding of their chronic condition, enhanced cultural cohesion, empowering this group to have a say about the health services received and to communicate this to health care practitioners.

The final chapter provides an overview of the inquiry. I answer the research question and assess if my aim and objectives are achieved. I consider what can be done for the wider Guyanese community and draw together key issues emerging from the inquiry. Actions taken by the women and the overall group action are reviewed and the implications for practice, including commissioners, practitioners, education and research are identified. Finally key contributions made by this inquiry are presented.

Chapter 9

Conclusion
I was in the field for 18 months that comprised one to one interviews and 14 PAR group sessions. This gave me the ample opportunity to build relationships with the women. Closure is not desirable in this approach, rather one of the best outcomes is that the women continue to meet and support each other even without researcher facilitation. This Guyanese group of women gained in personal and group strength. Giving voice to their experiences of living with Type 2 Diabetes was empowering. Self-management of diabetes improved as the group continued to meet. I was privileged to be part of this group and as a result it has reconnected me with my Guyanese community.

Principles

The principles guiding this inquiry incorporated social justice, equity, freedom of speech and human rights. I was conscious of Reid’s principles of inclusiveness, collaboration, fostering collective action toward social change and an awareness of power distribution. Another valued principle was participation through being responsive to the women’s needs. I focused on emancipation, collaboration and participation and that enabled me, as the facilitator of the inquiry, to walk alongside Guyanese women.

I have drawn on different discourses to inform this inquiry and demonstrate knowledge development within PAR; a feminist perspective that campaigns for women’s voices to be heard, critical theory, a theoretical model for understanding emancipatory research, ways of knowing and social constructionism. I paid attention to researcher reflexivity throughout this text. I have attempted to be open and transparent regarding the choices made whilst inquiring. Reflection increased my self-knowledge and self-awareness. I was able to facilitate the women to make deliberate, well informed choices.

As a researcher within this collaborative inquiry have I achieved my research aim and objectives?

I have answered the research question and demonstrated that I have effectively explored with Guyanese women their experiences of living with Type 2 Diabetes in one to one storytelling and 14 PAR group sessions. The key findings are elucidated below.

I have given voice to the women’s stories of living with diabetes as they espoused how it felt to be living in a society where they have faced racist issues and oppressive practices as a BME community living in the ‘mother country’ who was once their coloniser. They feel disadvantaged in terms of their treatment for their Type 2 Diabetes and have found it a challenge to navigate the health care system to acquire equitable and culturally sensitive care.

I have explored with the women their experiences of living with Type 2 Diabetes, the difficulties they encountered when trying to obtain a diagnosis and relationship issues with the health care practitioners including their GP. They had been self-managing their long-term condition but in retrospect not necessarily effectively as they found out as the inquiry progressed. Some women had experienced complications including hypoglycaemia episodes which they now realise have serious consequences. Management of self was considered to be a full time job with “highs and lows”. As PAR group interaction continued and reflections were encouraged, the women spoke about lifestyle changes which they brought into their everyday lives.

I facilitated this Guyanese women’s PAR group and in collaboration with eight women explored self-care trajectories. The women drew strength from each other as they shared their stories and the management of ‘self ‘improved. Their learning accelerated during the PAR group process bringing dramatic improvement in their health through changes made in their lifestyle: eating healthy foods, exercise and monitoring their glucose levels. The women understood much more about medical management as a result of being in the group and listening to questions being answered by Mary, the diabetes specialist nurse. Of course this information should have been available when they were first diagnosed so many years ago. Giving voice was the most important aspect of this study. Considering that majority of the women had this long-term condition for several years, this was the first time they had been heard and acknowledged. The group gave them a voice and provided a recipe for change.

I considered ways ‘we’ (women and researcher) could initiate health care reform at individual level and/or within the Guyanese community living in the UK. Individually the women have initiated reform through achievement of their personal actions. As a result of the PAR inquiry, the women achieved their own personal actions in terms of being more assertive with health care practitioners. For example, Vera managed to have her condition reassessed after eight years and was referred back to the hospital’s diabetic service for further investigations. They all made a great effort to take more regular exercise as they realised it improved their blood glucose levels. There was a notable improvement in their diet as the women developed awareness that their cultural foods were high in fat, carbohydrate and calorific value so may not necessarily be good for them. The overall group action project which was a Guyanese recipe book was reviewed in light of their increased knowledge about Guyanese foods and a later decision was made to produce a booklet about their group experiences of learning to live with Type 2 Diabetes. The women intended to share the booklet with the Guyanese community. We have been invited to speak about our research study at a diabetes awareness day on the 13th July 2014 for BME communities in Croydon. The women had gone through the PAR cycle leading to reform and a positive outcome.

It is important that the women’s achievements in this group are disseminated through publication as they give an excellent picture of what it is like to live with diabetes, trials and tribulations which I have captured within this inquiry.

Reflections on the PAR Process

Storytelling was followed by PAR group sessions where consensual and participatory procedures enabled the women to set the agenda for discussion by prioritising issues that were important for them, to reflect on their experiences, and devise actions that they perceived as being both possible and meaningful within the context of their lives. Enabling the women through the PAR process meant building relationships, good communication strategies promoted through continual feedback and validation and honouring the women as authors of their own stories. My assumption is that people are self-determining authors of their own interpretations (stories) and actions. Facilitation can assist participants to reflect on their world and their experiences within it. In this inquiry the women were able to contribute to collaborative thinking, decision-making and idea generation. I refer to reciprocity that appeared to be a key-motivating factor to bring the group together in their own houses. Being ‘home’ gave the women an excuse to reciprocate through providing food and its preparation became the main fuel for conversation. Food discussions started with specific Guyanese foods but later evolved into healthy eating plans as new knowledge about diabetes self-management was grasped.

As the facilitator of the PAR process and guided by my stated principles, I believe I contributed to the lives of the people with whom I researched. I resisted leading the group, attempted to maintain neutrality or at least diffuse tension, and to build on its strengths. I was aware of power relationships within the group and observed if they were (or not) harmonious, accepting, co-operative and sensitive. I sought to be attentive, accepting, comprehensible, truthful, sincere, appropriate and advisory rather than authoritative or expert. I asked the diabetes specialist nurse to answer questions that related to diabetes self-management. I later realised that the women’s questions focused on the medical model of self-management. I contrasted this to the women’s management of ‘self’ which meant becoming self-determining and taking control of their lifestyle rather than being treated as “children” by health care practitioners. I often acted as a ‘resource’ person in the group. Later I saw myself as a catalyst to assist participants to define their concerns clearly, and then support them in order to find solutions. When the participants had selected an option, it was my facilitator’s role to assist with the implementation of the plan by identifying the pros and cons and helping them to locate the necessary resources. The recipe book and later information booklet for other Guyanese people were two ideas promulgated. I did not take ownership of these ideas as I recognised that the ultimate responsibility for the success of the process was with the women. A feeling of ‘ownership’ was encouraged and I hoped motivation to invest time and energy to make changes in their lives if they so desired and to initiate actions or make resources that were sustainable.

Key findings

The first finding in this inquiry highlights the consequences of not having a diagnosis when an individual has Type 2 Diabetes. Not receiving a diagnosis made the women feel powerless even though they were experiencing various symptoms. These warning signs did not alert the health care practitioners that something was wrong which left three women feeling confused, lonely and ignored. Most wanted a diagnosis confirmed before they felt confident in making lifestyle changes. An early diagnosis is crucial when as an individual has Type 2 Diabetes to enable them to commence their journey of self-management. Unfortunately this was delayed for majority of the women.

Self-management is another key finding that is important because it is used as an umbrella term to cover a range of strategies that the women used to help them to self-manage. However the complexity of the long-term condition prevented them from doing so effectively until they commenced the inquiry. We collaborated together in gathering and accessing more relevant information about Type 2 Diabetes from diabetic journals, the internet and involving a diabetes specialist nurse in two group sessions. The women used herbal therapies alongside medical treatment to improve their quality of life, a belief they acquired when living in Guyana. However I encouraged them to discuss the matter with their respective GPs and invited a diabetes specialist nurse to answer their questions and other concerns in relation to the medical model of diabetes self-management.

Moreover the women were not fully cognisant of the complications of diabetes especially hypoglycaemia or the impact these were having on their bodies but made significant life changes during the group sessions to reduce episodes of this complication and other comorbidities of the condition. They took more exercise, reviewed their diet and became more assertive in demanding health checks from their GPs when they suspected that something was wrong.

Knowing how to navigate the services and seek support and guidance for their condition was crucial but remained an issue for nearly all of them except one participant who had a supportive diabetic team at the health centre. Religion played also an important role in the women’s lives as it helped them to self-manage and cope with the condition. The women freely admitted that they had a preoccupation with food especially Guyanese food, rich in fat and carbohydrate but developed knowledge and understanding that the Guyanese diet was not necessarily appropriate as they needed to consume a more varied one.

The women often reported psychological issues such as depression, stress and anxiety another finding of this inquiry. They mostly attributed these mood changes or ‘feeling low’ to living with diabetes as a chronic condition without a cure. Depression can remain hidden among those with diabetes and stress can occur as a trigger or when trying to cope with the long-term condition. The women believed that stress had negatively influenced their diabetic state and some women even suggested that stress had contributed to being diabetic. The association of depression, stress and anxiety with diabetes warrants further investigation.

It was not unusual for the women to talk about ‘being Guyanese’ which is another key finding as they often spoke of their homeland in glowing terms as if Guyana is still as they left it many years ago. They had been middle class and led privileged lives with a good education, servants, gardeners, cooks, but their lifestyles had changed for the majority when they migrated to the UK. In order to retain their identity they had become preoccupied with Guyanese food that depicted their cultural heritage. Chinese foods or spices used in Indian curries, peas and rice and root vegetables such as cassava, plantains and sweet potatoes were their favourites. These Guyanese loved to eat and they loved their food. Changing their lifestyle and diet appeared to be a huge challenge to them.

Connecting with the diaspora within the group sessions assisted them in managing their lifestyle challenges in terms of diet and taking more exercise. They increased their knowledge and understanding of the condition based on Kolb’s (1984) experiential learning cycle. The women’s learning accelerated in the group sessions, became more reflective, developed profound loyalty and acquired support from each other as they learn to live with Type 2 Diabetes. They already had travelled great distances including their migratory experience and made multiple journeys in the UK and overseas to see family and friends and attend school reunions. I believe this is a unique characteristic of Guyanese who create space and time to connect and recall memories of living in Guyana. As a consequence, the group sessions gave them this opportunity to meet with a like-minded group of individuals who had faced racism and other obstacles in the UK but had survived. I feel that 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 this group of Guyanese women.

Rigour and Evaluation in PAR research

To consider if this inquiry is rigorous, it is necessary to ask if it is accessible, makes a difference and is sustainable (Koch 2006). In establishing credibility, as a researcher I should have ensured trustworthiness and promoted confidence that the phenomenon under scrutiny was recorded accurately. To establish trustworthiness in qualitative research, Guba and Lincoln (1989) outlined four criteria that comprise credibility, dependability, confirmability and transferability. The credibility of the inquiry is assessed by examining the findings and interpretations which should represent some kind of ‘truth’. Dependability is related to issues such as suitability and transparency of methods and analysis. Confirmability is achieved when a reflexive analysis is conducted and large amounts of data are presented during the analysis process. Transferability relates to whether the results from the study can be transferred to other similar situations.

I believe this work is trustworthy (Koch 2006) and credible. As the researcher of this PAR inquiry, the methods used are transparent and I have provided a clear account of the research process. Confirmability was achieved as I detailed the data generation process exhaustively and reflected throughout the entire inquiry. The results are transferrable to other settings especially where the emphasis is on giving voice to specific cultural groups.

In the inquiry we have heard the women’s voices. Their voices are accessible; the women have claimed their stories. Successful evaluation criteria have been demonstrated as the women expressed a strong sense of self-development and evolution in their lives, they demonstrated an increased understanding of their situation, and the group initiated action. My task was to provide the women with the support and resources to do things in their own way. The women decided on the nature of things that affected their lives: they set the agenda. I claim that bringing these women together enhanced their diabetes self-management. Questioning self-management was accelerated within the PAR group. The women questioned their food choices often, recognising that ‘traditional foods’ could not be construed as healthy eating: healthy eating is a prerequisite for diabetes self-management. The inquiry has come to its end but we are committed to support each other in the future. Sustainability is a success indicator for PAR. Self- management of a chronic condition is a lifelong learning process. In this way it is not surprising that the women are still learning but that bringing them together as a group accelerated learning and improvements in their health. 

The women evaluated their achievements within this PAR process and commented on the difference it had made to their lives. Agnes the most recently diagnosed person in the group said she had “gained a wealth of knowledge… have learnt to control her eating habits as well as the value of exercise”. Bea summed up her learning in a few words “I have learnt a lot from the group and enjoy it”. Jillian felt “the group make me understand the condition and really take a check on what I have been doing all those years ago”. Vera who had the condition for several years commented on the value of sharing and listening to people in the group “I have learnt a lot too, it has been constructive, instructive and I hope we can continue to meet”. Marjorie said “the group has taught me about diabetes”. Pam commented that “like Marjorie I learnt a lot” but also talked about changes that took place in Marjorie within the first month. I too had changed which they remarked on as I have been reconnected to my people and Agnes stated “my culture”. The group is on-going and the women have continued to meet on a regular basis. There have been three further occasions, with the most recent in June 2014. Telephone contact with each other has continued throughout and beyond this inquiry.

I feel very passionate about the PAR approach because it proved to be culturally fitting. This group of Guyanese women thrived telling their stories. They had not been listened to before. Talking about one-self and describing what it is like living with a long-term condition is not usually a sought after discussion topic but within this PAR inquiry the women were free to talk as they wished resulting in mutual validation and building of self-esteem.

Connecting with the diaspora within the group sessions assisted the women in managing their lifestyle challenges in terms of diet and taking more exercise. They increased their knowledge and understanding of their diabetes in the PAR group sessions. PAR gave the women a voice.

Limitations

There are limitations in this inquiry. Firstly I was new to the PAR process which was a steep learning curve as I had to increase my knowledge and understanding of the approach to research and to seek guidance in its application. I needed to understand my role as a facilitator of change which was exciting but daunting within this approach. Other methodological approaches had been considered for this inquiry for example feminism, feminist participatory action research but I took a pragmatic decision to choose Koch and Kralik’s approach because it resonated with my participatory word view and I particularly liked the storytelling component. It seemed appropriate for this group of women.

Another limitation is that this is an exploratory inquiry with a small group of Guyanese women that took place within certain time constraints. As a consequence I had to take a decision to leave the field and be realistic about what we could achieve within the constraints of the inquiry but we still continue to meet as a group. PAR is not just about success and achievement but more about working collaboratively with people in the processes of change so as to improve the contexts of their lives. This is what I learnt through the process of self-reflection and evaluation which is documented in my journal.

Implications for Practice including commissioners and practitioners

The implications of the findings are two fold for commissioners and practitioners. Firstly, in terms of Guyanese living in the UK, consideration could be given to a health service with cultural relevance to this otherwise ‘hidden’ group. The women identified the kind of diabetic service they would like a consultative, holistic approach to their care and treatment. They identified that a well woman clinic serves as a good service delivery model and appreciated that with this type of clinic, staff will be expected to routinely monitor chronic conditions including vision, feet and yearly reassessment. The women would like to be kept informed when new treatments are available and would like to see an equitable service that gives access to the same resources for everyone for example, testing equipment, glucometer, strips and a streamlined pharmacy that provides insulin.

The women would like to take ownership of their diabetes rather than being told what to do by GPs and health care practitioners. I advocate responsiveness in GPs and urge them and other health care practitioners to listen to people, particularly when they are from BME communities exhibiting diabetic symptoms.

Secondly, it is proposed that a ‘one size fits all model’ that is currently provided for all individuals with Type 2 Diabetes may not necessarily be appropriate for those with specific cultural beliefs and needs because it does not address cultural variations, underlying motivations, preferences and behaviours. Instead I suggest bringing likeminded people together and run expert facilitated groups as a logical, practical and feasible recommendation.

It is my opinion that health care practitioners need to see and listen to the ‘person’ and not the ‘patient’. This requires practitioners to adopt a collaborative and empowered approach by recognising ‘self’ in self-management when providing care for those with Type 2 Diabetes.

I have demonstrated in this inquiry that bringing a small group together and providing expert facilitation and cultural sensitivity is an excellent way to enhance learning about chronic illness self-management. The outcome is improved management of the self, self-empowerment and less dependence on the health systems resulting in fewer consultations and fewer admissions to hospital. This type of PAR group can be replicated with similar difficult to reach groups with long-term conditions and it would be important to have a specialist nurse who is willing to contribute to the group.

The theory of empowerment through togetherness developed within the PAR groups in this inquiry encouraged individuals to connect, develop a cultural identity and recognise the practical effect of togetherness to bring about change in their lives. This type of support group can be used to target BME communities and outcomes could be measured via satisfaction questionnaires to obtain feedback.

BME communities are concentrated in particular areas but others are scattered therefore they should not be ignored because they are small groups. These communities can face barriers when they have Type 2 Diabetes and find it difficult to access services in their localities. GPs need to be aware of this and target these communities by offering screening to those at risk of Type 2 Diabetes and other long-term conditions. They could use their databases to identify those at risk and devise a tool to assess what help is required. Lay educators could be involved in developing diabetes awareness sessions which can be evaluated. Databases would have to be monitored regularly to prevent those from slipping through the net and services audited to assess satisfaction with the quality provided.

Commissioners of services should make cultural relevance a condition of commissioning in line with population demographics. Service providers would need to show a) awareness of cultural diversity and needs based on a cultural analysis of the demographic data, b) a plan for delivering culturally competent services. Commissioners could also commission education on the basis of what I have proposed in the next section.