1
A ParticipatoryAction 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
July2014
© Helena Ann Mitchell 2014
Declaration of originality
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 Any ideas, data, images or text resulting from the work of others (whether published or unpublished) are fully identified as such within the work and attributed to their originator in the text bibliography or in the footnotes.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 experiencesthat 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 groupcontinues 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.
Acknowledgements
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 DiabetesSpecialist 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 especiallyJassy 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
Abstract
Acknowledgements
Dedication
Glossary of Terms...... 8
Chapter 1: Introduction...... 10
My background...... 11
Why this inquiry is important...... 14
Research question and objectives...... 15
Overview of Chapters...... 16
Chapter 2: Context...... 19
Guyanese women...... 21
UK Context...... 21
Guyana...... 23
Health Care...... 25
Type 2 Diabetes...... 34
Chapter 3: Literature Review...... 38
Search strategy and terms...... 39
Inclusion criteria...... 41
Incidence and prevalence of diabetes...... 42
Diabetes complications/Factors influencing diabetes...... 43/45
Living with Diabetes...... 48
Chapter 4: Principles Guiding this Participatory Action Research Inquiry...... 57
Positioning of the PAR researcher...... 58
Action Research...... 60
What is participatory action research (PAR)?...... 61
Commonalities in participative methodologies...... 62
Rationale for selection of Koch and Kralik PAR process...... 68
Principles guiding PAR and this inquiry...... 69
Chapter 5: Participatory Action Research Approach...... 72
Research question, aims and objectives...... 73
Perceived benefits of researching with participants...... 76
Data generation Phase 1 – Storytelling...... 76
Data Analysis Phase 1: Developing the story line
Data generation Phase 2 - Group sessions...... 80
Data Analysis Phase 2: PAR group process
Rigour and evaluation in PAR research
Chapter 6: One to One Interviews and Storytelling...... 90
Introducing the women...... 91
Storytelling: Data generation, analysis and reflections...... 94
Vera’s storyline...... 94
Marjorie’s storyline...... 99
Pam’s storyline...... 104
Bea’s storyline
Jane’s storyline
Shirley’s storyline
Agnes’s storyline
Jillian’s storyline
Constructs
Chapter 7: Participatory Action Research Groups
First Session
Second Session
Third Session
Fourth Session
Fifth Session
Sixth Session
Seventh Session
Eighth Session
Ninth Session
Tenth Session
Eleventh Session
Twelfth Session
Thirteenth Session
Fourteenth Session: Evaluation
Discussion: Fourteen PAR Group Sessions
Chapter 8: Discussion
Consequences of not receiving a diagnosis
Self-Management of Type 2 Diabetes
Psychological Issues
Being Guyanese...... 202
Reflection on the inquiry
Feedback to Healthcare Professionals
Chapter 9: Conclusion...... 213
Principles
As a researcher within this collaborative inquiry have I achieved my research aim and objectives?
Reflections on the PAR Process
Key findings
Rigour and Evaluation in PAR research
Implications for practice including commissioners and practitioners
Implications for education and research...... 222
Key contributions made by this inquiry...... 223
References
Appendix 1. NICE Guidelines
Appendix 2. NICE Care Pathway
Appendix 3. Approval Letter from Ethics Committee
Appendix 4. Written Information about the Study and Consent Form
Appendix 5. Poster
Appendix 6. Letter to Participants for Interview
Appendix 7. Participants’ Consent Forms
Appendix 8. List of Prompts
Appendix 9. Analysis of Vera’s interview using PAR process
Appendix 10. Significant Statements and Commonalities
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
Chapter1
Introduction
This introductory chapter sets out the background and contextof 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 womenwho areoften 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 bornin 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 forpsychiatric nurse trainingin 1979. Ipractised asa community psychiatric nurse prior to becoming a nurse tutor at Northamptonshire School of Nursingin 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, andcommenced this inquiry,researching alongside Guyanese women in the UK who are living with Type 2 Diabetes.
Beginnings
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 migratingdue to the political upheavalsin Guyana,which will be discussed in Chapter 2. Eventually, however, we all returned to Guyanafor personal reasons.
Education Preparation
I attended a Catholic primary school until 11 years of age, transferring to secondary education at a Catholic convent school. At 17, I left school with a general certificate in education and commenced work at a Guyanese Government accounts department.The tense political situation in Guyana prompted my parents to suggest that I migrate to another country and join the exodus of young people who were leaving to go abroad to either study or take up permanent residence.Changing immigration laws in the UK, Canada and America meant it was becoming difficult to obtain visas for those countries. In the 1970s a shortage of nurses in the UK meant I was welcomed as a migrant if I trained as a nurse. I thus accepted a nurse training position in Surrey, UK.
My interest in this topic
My interest in the topic of diabetes stemmed from those members of my family living in Guyana: my sister, niece and sister-in-law,who had been diagnosed withthis chronic condition several years ago. As I return to Guyana frequently, I was intrigued by theircavalier attitude towards managing their diabetes. I also queried the extent to which genetic predisposition played a part, as I had read about an increase in Type 2 Diabetes amongst Guyanese living in Guyana (Ramsammy 2011).
In the UK approximately three million people have now been diagnosed with Type 2 Diabetes (Diabetes UK, 2012). This chronic condition has become a national topic. In addition, a report by the Department of Health (DH) (2007b) suggeststhat there had been a significant increase in Type 2 Diabetesamongst BME communities.Guyanese people are included in these communities and are often grouped with African Caribbean people in the UK (Scott 2001; Brown et al. 2007) as they sharecolonial roots. Gathering dataon the number of Guyanese people living in the UK has been problematic because Guyanese people comprise six races: African, Indian, Chinese, Portuguese, Amerindian and Mixed. However,UK statistics tend to categorise all people from the Caribbean as African Caribbean.Health information specifically about Guyanese people living in the UK is scarce.
One of my PhD supervisors, ProfessorTina Kochfrom Australia,was in the UK on a Leverhulme Professorship. In late 2009 we met at a UK conference and started talking about my evolving research question. I was immediately drawn to the type of collaborative inquiry she described. I expressed a desire to give voice to Guyanese people, as I believed they had not been heard. I found that Professor Koch had a background in participatory actionresearch (PAR) and hadco-published a research text with Kralik (Koch Kralik2006). I later read about Koch andKralik’s chronic illness research programme and noted that over 30 PAR studies had been completed and published by them. Their PAR approach was appealing, asnot only would it provide a voice to those living with a chronic condition through storytelling, it had the potential to be sensitive to specific cultural practices. I continued to read their body of work and discovered that a researcher spent time in the field to gain an understanding of the cultural beliefs and practices. Spending time in the field was an attractive proposition, as I wanted to build relationships with Guyanese people living in the UK,hear about their social and cultural practices in terms of their health and find out ways to improve their situation though action initiated by the participants. I understood that by using a PAR methodology I could research alongside older Guyanese women. I will explain my gender choice later.
I had accumulated experiences that served to prepare me for this inquiry.I had lived in the UK as a Guyanese migrant andworkedin the field of community mental health. Iam an academic with a specialist interest in feminism and BMEcommunities.
In the effort to explain the relevance of these experiences I will begin with my work as a community psychiatricnurse.In that capacity, I had adopted a range of interpersonal and therapeutic interventions that had elements of Egan’s (2007) helping relationship. Many clients shared their life stories with me; I listened, stayed connected and gave them time and space to talk. Listening skills were vitally important in those therapeutic encounters but the application of other skills was part of my practice, like enabling and encouraging individuals in order to empower them to make their own decisions and to take the necessary actions to manage their mental health problems. I had therefore gained some insight into the skills that would be required of me when researching alongside participants in this inquiry.
Secondly, I had completed a Women’s Studies Master’s degree in the 1990s using the theoretical connection with liberal feminism in the tradition of Olesen (2005). I recognised that other feminist theorists such as Oakley (1981; 1993)andHaraway(1991) had influenced my position.These feminist theorists assisted me to think about power relations, to see the importance of listening to the female voice, demonstrating the importance of identity and the need to respect the individual’s life experience in managing a chronic condition.
Thirdly,I was influenced by the work of hooks (1984),a black radical feminist, whointroduced me to a type of feminism that privileged the voice of a black woman. It was a visionary piece of work that captured the political scene of that era but is still relevant in today’s society. My Master’s research study was with black women and explored the reasonswhy they consumed alcohol. It wasguided by feminist principles; it emphasised being heard and giving a voiceto participants.
I believed I could build on these experiences when researching alongside women from a BME community, who are a hard to reach group. I also shared the same cultural characteristics in being a black migrant woman. Based on my background experiences, I wanted to continue this PhD inquiry with Guyanese women rather than men. The participants were more likely to be older womenbecause Type 2 Diabetes normally occurs in an older age group.