A participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England
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- Declaration of originality
- This thesis is copyright and may not be reproduced in part or in full without the express permission of the author or of the University © Helena Ann Mitchell 2014
- Dedication
- Glossary of terms Ackee
- Bitter sticks
- Cascara Sagrada
- Cerasee tea
- Cook up rice
- Garlic Pork
- New Amsterdam
- Pablum
- Pomeroon
- Sugar cake
           
A Participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England by HELENA ANN MITCHELL THESIS Submitted for the degree of Doctor of Philosophy Faculty of Health and Medical Sciences School of Health Sciences University of Surrey
This thesis and the work to which it refers are the results of my own efforts. Any ideas, data, images or text resulting from the work of others (whether published or unpublished) are fully identified as such within the work and attributed to their originator in the text bibliography or in the footnotes. This thesis has not been submitted in whole or in part for any other academic degree or professional qualification. I agree that the University has the right to submit my work to the plagiarism detection service Turnitin UK for originality checks. Whether or not drafts have been so assessed, the University reserves the right to require an electronic version of the final document (or submitted) for assessment as above. This thesis is copyright and may not be reproduced in part or in full without the express permission of the author or of the University © Helena Ann Mitchell 2014 Abstract People from Black and Minority Ethnic groups, in particular Guyanese people, have a higher incidence of Type 2 Diabetes. Yet, there is a paucity of research which explores women's experiences of living with the condition. In this participatory action research (PAR) inquiry, eight participants and I, ‘we’ researched together for 18 months. Participants were nine Guyanese middle class women, including myself, who had migrated to England many years ago. The inquiry aim was to listen to the women’s voices about living with Type 2 Diabetes and explore associated cultural experiences that could influence self-management. The objectives were: 1) give voice to Guyanese women stories; 2) explore their experiences living with Type 2 Diabetes; 3) facilitate a participatory action research (PAR) group and explore with them self-care trajectories and 4) consider ways ‘we’ (women and researcher) can initiate health care reform at an individual level and/or within the Guyanese community. Data generated included storytelling in one to one interviews in the safe environment of the women’s own homes, followed by 14 PAR group sessions. Participants drove the research by determining what should go on the agenda and they decided on the resultant actions. Fourteen constructs (commonalities in experience) were derived from our data and the women validated these findings and took ownership of their stories. The main focus of the PAR group conversations was on their identities as Guyanese migrant women which were constructed through the food and dietary transitions made over the time of the PAR group. The group’s social context became a fertile bed for learning. In terms of living with a chronic illness, improving diabetes self-management was accelerated within the group. Group cohesion and working together to improve their lives are two of the most important findings. In 2015 the group continues to meet. If theory is defined by its practical effects, together we have confronted the taken for granted meanings of culture, ethnicity and identity as we researched alongside each other to construct a theory of togetherness as empowerment that enabled a group of migrant women to bring about change in their lives. My thesis is that listening to the voices of Guyanese / English women who live with a chronic illness improved self-management, fostered new understandings of diabetes and empowered this group to have a say about the health services received. Through participating in a PAR group, we recognised that we are bi-culturally competent women and when we connect, we recognise the practical effect of togetherness as empowerment.
I would like to thank the eight women who participated in this inquiry, for their frank and honest opinions regarding their Type 2 Diabetes and for allowing me to research alongside them collaboratively for 18 months. Thank you to Mary Matthias, the Diabetes Specialist Nurse for her contribution to the group. My heartfelt thanks go to my supervisors, Professor Tina Koch and Professor Helen Allan who have made this journey possible for me with their patience, kindness, ongoing support and supervision. The study has been challenging but I could not have achieved this without you. I would like to thank my husband Terry Mitchell who has been with me every step of the way throughout this entire process and my son Daniel for his encouragement and support. Thanks to my colleagues at The Open University especially Julie Messenger and Professor Jan Draper for giving me the study leave to complete the work and Claire Edwards, Judith Ffolkes, Victoria Arrowsmith, Eileen Beesley, John Rowe for supporting me when I needed it and Soraya Tate for her excellent word processing skills. A special thanks to all my friends and family in the UK and abroad especially Jassy Haynes and my sister Sonja Abbott who have been an ongoing source of support for me throughout the life of this study. Dedication I dedicate this work to my father who has inspired me throughout my life. Sadly he died in 2001. Table of Contents Declaration of originality 2 Abstract 3 People from Black and Minority Ethnic groups, in particular Guyanese people, have a higher incidence of Type 2 Diabetes. Yet, there is a paucity of research which explores women's experiences of living with the condition. 3 In this participatory action research (PAR) inquiry, eight participants and I, ‘we’ researched together for 18 months. Participants were nine Guyanese middle class women, including myself, who had migrated to England many years ago. The inquiry aim was to listen to the women’s voices about living with Type 2 Diabetes and explore associated cultural experiences that could influence self-management. The objectives were: 1) give voice to Guyanese women stories; 2) explore their experiences living with Type 2 Diabetes; 3) facilitate a participatory action research (PAR) group and explore with them self-care trajectories and 4) consider ways ‘we’ (women and researcher) can initiate health care reform at an individual level and/or within the Guyanese community. 3 Acknowledgements 4 Dedication 4 Glossary of terms 6 Ackee: a national fruit of Jamaica 6 Amerindians: indigenous population of Guyana 6 Beech nut: the nut from the tree can be consumed raw or cooked, has a good level of protein 6 Bitter sticks: also known as chirata is a herb used for various medical conditions 6 Black cake: fruit cake made with rum 6 Black pudding: made with rice, meat and includes celery, thyme, eschallot and blood from the cow 6 Bush tea: the dried plant is drunk as a tea for various ailments 6 Cascara Sagrada: used for cleansing the bowel based on Guyanese cultural belief 6 Castor oil: used for cleansing the bowel 6 Cassava: root vegetable (also known as manioc) grown in Central and South America 6 Cerasee tea: wild variety of bitter melon used as tea to treat diabetes in the West Indies and Central America 6 Channa: fried chick peas 6 Chow mein: stir fried noodles 6 Coconut milk: liquid that comes from the grated meat of a brown coconut 6 Coconut water: clear liquid within the young green coconut 6 Cook up rice: known also as rice and peas, traditional Guyanese dish 6 Dhal: an Indian dish made with lentils 6 Eddoes: small root vegetables 6 Eggplant: also known as aubergine is an edible fruit 6 Essequibo: a former Dutch colony in Guyana on the north east coast of South America 6 Garlic Pork: a Portuguese dish of marinated pork pieces soaked in vinegar, garlic, pepper and salt for a few days and then the pork is fried in oil 6 Georgetown: capital city of Guyana 6 Karela: bitter melon that looks like a cucumber 6 Metemgee: thick coconut based soup filled with dumplings, fish or chicken and a lot of provisions e.g. yams, eddoes, cassava 6 New Amsterdam: one of the largest towns in Guyana 6 Naan bread: oven baked flatbread 6 Obeah: a folk religion of African origin 6 Okra: a vegetable also known as lady’s fingers or bhindi 6 Patties: pastries that contain various fillings (similar to a Cornish pastry) 6 Pablum: a type of porridge 6 Pawpaw: also known as papaya is a fruit 6 Pepper pot: an Amerindian stew 6 Pitta bread: slightly leavened flatbread baked from wheat flour 6 Plantains: starchy vegetable that looks like a banana but is cooked before it is eaten 6 Pomeroon: a region in Guyana and the name of a former Dutch plantation colony 6 Roti: fried flat bread 6 Scott’s Emulsion: is a brand of cod liver oil range of emulsions rich in vitamin A, D, calcium, phosphorus and omega 3 used to protect children from cough and colds and as a supplement to support growth and ward off infections 6 Sugar cake: a sweet made with coconut 6 Soursop: fruit grown in Caribbean and South America that has antimicrobial ingredients 6 Tania: root vegetable 6 Yams: starchy vegetables grown in the Caribbean 6 Chapter 1 7 Introduction 7 My background 8 Why this inquiry is important 10 Research question and objectives 12 Overview of Chapters 13 Chapter 2 16 Context 16 Guyanese women 18 UK Context 18 Guyana 19 Health Care 21 Type 2 Diabetes 29 Chapter 3 33 Literature Review 33 Search strategy and terms 34 Inclusion criteria 36 Incidence and prevalence of diabetes 37 Diabetes complications 38 Factors influencing diabetes 40 Living with Diabetes 42 Research aim and objectives 50 Chapter 4 52 Principles Guiding this Participatory Action Research Inquiry 52 52 Positioning of the PAR researcher 53 Action Research 55 What is participatory action research (PAR)? 56 Commonalities in participative methodologies 56 Figure 2: Arnstein’s Ladder of Participation (1969) 58 Rationale for selection of Koch and Kralik PAR process 62 Principles guiding PAR and this inquiry 64 Chapter 5 66 Participatory Action Research Approach 66 Research question, aims and objectives 67 1.give voice to the stories of Guyanese women; 67 2.explore their experiences living with diabetes in the context of their Guyanese background; 67 3.facilitate a participatory action research group and in collaboration with participant women explore self-care diabetes trajectories 67 4.consider ways ‘we’ (women and researchers) can initiate changes at an individual level and/or within the Guyanese community living in the UK. 67 Perceived benefits of researching with participants 69 Data generation Phase 1 – Storytelling 69 Data Analysis Phase 1: Developing the story line 72 Data generation Phase 2 - Group sessions 73 Data Analysis Phase 2: PAR group process 78 Rigour and evaluation in PAR research 79 Chapter 6 82 One to One Interviews and Storytelling 82 Introducing the women 83 Storytelling: Data generation, analysis and reflections 86 Vera’s storyline 86 Marjorie’s storyline 91 Pam’s storyline 96 Bea’s storyline 100 Jane’s storyline 105 Shirley’s storyline 109 Agnes’s storyline 113 Jillian’s storyline 117 Constructs 122 Chapter 7 132 Participatory Action Research Groups 132 First Session 134 Second Session 139 Third Session 140 Fourth Session 141 Fifth Session 143 Sixth Session 145 Seventh Session 149 Eighth Session 150 Ninth Session 153 Tenth Session 155 Eleventh Session 159 Twelfth Session 162 Thirteenth Session 166 Fourteenth Session: Evaluation 168 Discussion: Fourteen PAR Group Sessions 170 Chapter 8 181 Discussion 181 Consequences of not receiving a diagnosis 183 Self-Management of Type 2 Diabetes 185 Psychological Issues 191 Being Guyanese 193 Reflection on the inquiry 195 Feedback to Health Care Practitioners 202 Chapter 9 204 Conclusion 204 Principles 205 As a researcher within this collaborative inquiry have I achieved my research aim and objectives? 205 Reflections on the PAR Process 207 Key findings 207 Rigour and Evaluation in PAR research 209 Implications for Practice including commissioners and practitioners 211 Implications for Education 212 Implications for research 213 Key contributions made by this inquiry 213 To the body of knowledge 213 I have contributed to the literature on self-care in BME communities. Guided by the literature, I was able to incorporate Reid’s feminist principles into the research process, the main aim of which was to listen to the voices Guyanese/English women. I strongly believe that the women’s experiences were central to how they felt discriminated against and neglected by the health care services. This is evidenced by the storytelling component of the research process. The stories had not been heard before and the women felt validated. Findings indicate that this group continues to function extremely well self-managing their Type 2 Diabetes. As argued this can be attributed to cultural cohesion and their background similarities. Although the women were diagnosed many years ago, it was realised that it takes several years of trial and error to learn self-management of a chronic condition. In the group the women became motivated to learn about diabetes together what had been previously been a neglected and solitary journey. In the PAR groups, the women set the agenda and this was a true collaboration with the participants. There is no doubt that there was collective action to improve the participants’ well-being. 213 Methodological innovation 214 Participatory action research differs from most other approaches in health and social sciences. It is based on reflection, data generation, and action that aim to improve health and reduce health inequities through involving the people who, in turn, take actions to improve their own health or in this inquiry, improve diabetes self-management. Theoretically I was guided by Koch and Kralik’s (2006) principles encompassing social justice, social equity, freedom of speech and an awareness of human rights. The PAR methodology provided a democratic and collaborative research approach involving facilitators/researchers’ and participants’ cultural practices equitably. I often refer to participants/women as ‘we’, ’us’ or ‘our’, showing my sense in being part of the group. The methodological innovation is the insider space that I occupied as a member of the group which enhances the depth and breadth of understanding of this particular BME community. Koch and Kralik adopted a more outsider approach when using PAR with their specific communities which is not perceived as an impediment when conducting research but has its limitations. 214 Theoretical understanding 214 In terms of new knowledge, I reassessed culture and ethnicity as part of being a member of the PAR group. If theory is defined by its practical effects and is observed to change people’s view of everyday assumptions, theoretically we have confronted the taken for granted meanings of culture, ethnicity and identity as we researched alongside each other. We think differently about ‘our’ place in the world. I have disputed the naïve common sense view about being Guyanese and now see it as a favourable historical construction that suited the purpose of meeting as a group. However I have been astounded by the influence our group has had on my /our sense of belonging. My Guyanese/English identity has been strengthened. My thesis is that listening to the voices of Guyanese/English women who live with a chronic illness improved self-management, fostered new understandings of diabetes and empowered this group to have a say about the health services received. We are bicultural competent women and when we connect, we recognise the practical effect of togetherness as empowerment and empowerment through togetherness. 214 References 215 Appendix 1. NICE Guidelines 232 Appendix 2. NICE Care Pathway 234 Appendix 3. Approval Letter from Ethics Committee 235 Appendix 4. Written Information about the Study and Consent Form 236 Appendix 5. Poster 240 Appendix 6. Letter to Participants for Interview 243 Appendix 7. Participants’ Consent Forms 246 Participants’ consent forms have not been included in the appendices due to confidentiality but can be made available at the viva if examiners would like to see evidence of consent. 246 Appendix 8. List of Prompts 247 Appendix 9. Analysis of Vera’s interview using PAR process 247 Appendix 10. Significant Statements and Commonalities 266 Glossary of terms Ackee: a national fruit of Jamaica Amerindians: indigenous population of Guyana Beech nut: the nut from the tree can be consumed raw or cooked, has a good level of protein Bitter sticks: also known as chirata is a herb used for various medical conditions Black cake: fruit cake made with rum Black pudding: made with rice, meat and includes celery, thyme, eschallot and blood from the cow Bush tea: the dried plant is drunk as a tea for various ailments Cascara Sagrada: used for cleansing the bowel based on Guyanese cultural belief Castor oil: used for cleansing the bowel Cassava: root vegetable (also known as manioc) grown in Central and South America Cerasee tea: wild variety of bitter melon used as tea to treat diabetes in the West Indies and Central America Channa: fried chick peas Chow mein: stir fried noodles Coconut milk: liquid that comes from the grated meat of a brown coconut Coconut water: clear liquid within the young green coconut Cook up rice: known also as rice and peas, traditional Guyanese dish Dhal: an Indian dish made with lentils Eddoes: small root vegetables Eggplant: also known as aubergine is an edible fruit Essequibo: a former Dutch colony in Guyana on the north east coast of South America Garlic Pork: a Portuguese dish of marinated pork pieces soaked in vinegar, garlic, pepper and salt for a few days and then the pork is fried in oil Georgetown: capital city of Guyana Karela: bitter melon that looks like a cucumber Metemgee: thick coconut based soup filled with dumplings, fish or chicken and a lot of provisions e.g. yams, eddoes, cassava New Amsterdam: one of the largest towns in Guyana Naan bread: oven baked flatbread Obeah: a folk religion of African origin Okra: a vegetable also known as lady’s fingers or bhindi Patties: pastries that contain various fillings (similar to a Cornish pastry) Pablum: a type of porridge Pawpaw: also known as papaya is a fruit Pepper pot: an Amerindian stew Pitta bread: slightly leavened flatbread baked from wheat flour Plantains: starchy vegetable that looks like a banana but is cooked before it is eaten Pomeroon: a region in Guyana and the name of a former Dutch plantation colony Roti: fried flat bread Scott’s Emulsion: is a brand of cod liver oil range of emulsions rich in vitamin A, D, calcium, phosphorus and omega 3 used to protect children from cough and colds and as a supplement to support growth and ward off infections Sugar cake: a sweet made with coconut Soursop: fruit grown in Caribbean and South America that has antimicrobial ingredients Tania: root vegetable Yams: starchy vegetables grown in the Caribbean Chapter 1 Introduction This introductory chapter sets out the background and context of the inquiry, and provides an overview of the succeeding chapters in this thesis. An important aspect of this inquiry is to recognise and give voice to a specific Black and Minority Ethnic group (BME) – consisting of Guyanese migrant women who are often subsumed into a larger categorisation. This Guyanese group is generally referred to as African Caribbean within the wider BME grouping although it is a distinct cultural group. My background I was born in Guyana, a former British colony in South America, and came to England to commence adult nursing in January 1976. My training was an apprenticeship model with shift work accompanied by formal lectures. On completion of training I left general nursing for psychiatric nurse training in 1979. I practised as a community psychiatric nurse prior to becoming a nurse tutor at Northamptonshire School of Nursing in January 1988. I have been an academic for 25 years, 15 years at Northampton University and more recently at the Open University. I enrolled at the University of Surrey in January 2010 to undertake the higher degree programme, and commenced this inquiry, researching alongside Guyanese women in the UK who are living with Type 2 Diabetes.
As a member of a family of seven, (three brothers and a sister) I lived a comfortable life in Guyana’s capital city of Georgetown. My mother was a full time house wife and my father held a senior position at the city’s power station. Following retirement he taught mechanical engineering at the University of Guyana. My parents were keen travellers and I can recall going to New York in 1970 with the intention of the whole family migrating due to the political upheavals in Guyana, which will be discussed in Chapter 2. Eventually, however, we all returned to Guyana for personal reasons.
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