A participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England
Appendix 4. Written Information about the Study and Consent Form
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- Navigate this page:
- Research Question
- Ethics Committee Consent Form Please select the point(s) which are relevant to your protocol
- Appendix 5. Poster Coping with diabetes
- Ann Mitchell 01604 781710 helenaann@hotmail.co.uk Appendix 6. Letter to Participants for Interview Dear Participant
- What would you be asked to do Participation in this study will involve
- Questions asked will be
- What choice do you have
- How will the information from interviews and groups be used
- What do you need to do to participate
- Your sincerely Ann Mitchell Appendix 7. Participants’ Consent Forms
- Appendix 8. List of Prompts
- Appendix 9. Analysis of Vera’s interview using PAR process
- Management of diabetes – medical model
- Early Experiences in Guyana before migration
- Psychological/social problems
- Diagnosis of the illness
- Issues concerning doctor/patient relationship
Appendix 4. Written Information about the Study and Consent Form Ann Mitchell Summary of the Project This study aims to explore how Guyanese migrant women who migrated to the UK during the 1960s and 1970s experience and manage Type 11 diabetes and the impact this long term condition has had on their values and health beliefs. Many of the Guyanese who came to England lived in and around London (Census 2001). This Black and minority ethnic group of women either entered nursing, commenced careers in teaching, secretarial work or attended courses at colleges and universities. As the years have progressed, these individuals like the rest of the UK population are ageing therefore they are more susceptible to long term conditions such as Type 11 diabetes. This condition is also more prevalent among black and minority ethnic groups (DH 2001,2007). These groups are particularly at risk of Type 11 diabetes because of the changes in their lifestyle and traditional diets. Many refuse to comply with treatment and change their behaviour when they have been diagnosed as having Type 11 diabetes. When an individual is diagnosed with Type 11 diabetes they are expected to self-manage their long term condition and to change their lifestyle especially diet and to take more exercise. Changing one’s behaviour is not an easy task because it is associated with one’s health beliefs. Helman (2007) discovered that health beliefs will determine whether an individual is likely to seek medical help when they have a health problem. Health beliefs are learned and developed from childhood and from the family, networks, community and religion. When an individual migrates they bring these beliefs with them and may cling to them when faced with a long term condition. This disruption in their day to day lifestyle can impact on their lives so they then have to learn to take the consequences of living with a chronic illness. Research Question: How do Guyanese migrant women living in the UK make sense of their experience of living with Type II diabetes? The aims of this study are:
The proposed study is qualitative and adopts a participatory action research (PAR) approach. Ten participants will be sought and given the opportunity to tell their life stories in one to one interviews. Then they will be invited to join a group that is based on the participatory action research approach of Koch and Kralik (2006). In this group participants meet regularly, the researcher facilitates the participants to take the lead. Participants set the agenda for group discussion, they reflect and decide what actions need to be taken regarding their situation and in particular how they continue to self-manage Type ll diabetes. The analysis of the data for this study will consist of a combination of two approaches. Koch and Kralik(2006)’s approach that is an analysis framework based on traffic lights ‘look and act’ will be used to analyse the PAR group and Braun and Clark (2006) thematic approach is being considered for the life story interviews. These have been chosen because they complement each other. All data are returned to the participants and they are invited to make changes and validate their data (stories). Participants set the agenda for subsequent discussions and decide on the group responses and action resulting from group processes. A discussion of the findings (and actions the group have initiated) will be presented. Conclusions will then be drawn by answering the research question. References Braun V and Clarke V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology. 3: p. 77-101. Department of Health (2001) National Service Frameworks for Diabetes: Standards. London: DH Department of Health (2007) Working together for Diabetes care. London: DH. Helman C (2007) Culture, Health and Illness. London: Hodder Arnold. Ethics Committee Consent Form Please select the point(s) which are relevant to your protocol:
Name of volunteer (BLOCK CAPITALS)........................................................ Signed ........................................................ Date ...................................... Name of researcher/person taking consent (BLOCK CAPITALS) Ann Mitchell Signed Ann Mitchell. Date ...11.12.09......... Appendix 5. Poster 
Coping with diabetes? Guyanese woman living in London? If you are a Guyanese woman with Type 2 diabetes living in London then this will be of interest to you. In order to help understand the issues facing you a research study is taking place between January and April 2010. This will take the form of one to one interviews and ten group discussions The information you provide will form part of a wider study that will be used to shape the way support services are provided to you. If you would be willing to take part or would like to know more then please contact me.
Appendix 6. Letter to Participants for Interview Dear Participant, My name is Ann Mitchell. As a part of my PhD study at the University of Surrey I am inquiring into ‘How Guyanese women who live in London and who are diagnosed with diabetes, self-manage their condition’. My supervisors are: Dr Helen Allan and Professor Tina Koch. Although diabetes has been studied for some time, there are to date, few that explore what happens when a person is diagnosed. It has been observed that when people are diagnosed with diabetes they need to modify every aspect of their everyday lives, what they eat, drink and the way they exercise. In the study proposed here I am interested in understanding these changing aspects of Guyanese women who are diagnosed with diabetes. I am curious about the sort of information that was available before and after diagnosis. I would like to know how health care practices and beliefs from Guyana can influence the way women self-manage diabetes. I would also like to explore what it is that Guyanese women would want health professionals to know or change that would improve service delivery. What would you be asked to do? Participation in this study will involve: Meeting with me, the researcher, on a regular basis, for one to one interviews/discussions about how you are self-managing diabetes. My PhD supervisor may attend some of these meetings with me. I acknowledge that you may have obligations including paid or unpaid work or other commitments so these meetings will be set up to suit your availability. These interview discussions will be conducted in privacy in your own home or some other agreed venue for about an hour each time. Questions asked will be:
Discussions will be recorded for transcription later so that I can reflect on and analyse what you have said. The story you have shared with me during interview will be given back to you for review at the beginning of our next meeting. During meetings I will be interested in exploring your thoughts and feelings about such things as your relationships with family members and friends, issues with shopping or cooking and generally what it is like for you to live with diabetes. When we have spent some discussion time together I will invite you to attend a series of group discussion with other female participants of the study. I will facilitate the group meetings assisted by Professor Koch, one of my supervisors for the initial sessions. Each session will take around two hours. The purpose of these meetings is for all the participants to share their learning experiences with each other and discuss recommendations for health care practitioners aimed at improving the care of women who are newly diagnosed with diabetes.
No identifying details of any of the participants will be recorded. Pseudonyms (false names) will be used for transcribed interviews and when reporting the findings of the study, unless you specifically wish to be named. Participants within the group meetings will be told of the importance of confidentiality within the groups and that the content of the group conversations should not be shared with anyone outside of the group, although it is recognised that this confidentiality cannot be enforced. Consent to participate in the group process is also an agreement to confidentiality within the group. All information will be kept in a locked filing cabinet in my office at the university and will only be used for the purposes of this study. Only my supervisors and I will have access to this information. At any time during the time of the study you may ask to have access to the recordings and/or transcripts of the conversations should you wish to change or edit them. The results will be marked as edited. At completion of the study, the information will be destroyed, although the tapes/discs will be kept for 10 years in the CRNME, University of Surrey archives. How will the information from interviews and groups be used? The results of this study will be published after 2010. None of the names of any individuals (unless specifically asked to be named), or institutions, will be mentioned in any publication and all the information will be kept confidential. If you are interested in a copy of the findings you can contact me or my supervisors on the phone number which is included in this letter. What are your rights? If you accept attending in this research, your rights are protected as following:
What do you need to do to participate? If you wish to participate in this study, please return the signed consent form to Mrs Ann Mitchell, Horlock Building, The Open University, Walton Hall, Milton Keynes, MK7 6AA The researcher will then contact you to arrange a suitable time to meet with you. If you have any questions or points for clarification that you would like to address, please feel free to contact me by email at h.a.mitchell@open.ac.uk or helenaann@hotmail.co.uk and I will be happy to supply any further information as requested. Your sincerely Ann Mitchell Appendix 7. Participants’ Consent Forms 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. Appendix 8. List of Prompts Tell me your story about your diabetes When diabetes was first diagnosed? Did you notice symptoms? How has diabetes affected your lifestyle How long have you been taking tablets? What sort of foods do you eat? What is a typical day like? Do you have regular check-ups? What services are available for you? Are you satisfied with the treatment that you are offered? Have you attended any diabetes classes? What have these been like? What do you do with the meter? Can you provide an example of an incident or episode that really changed your life? How do you feel about what is happening to you? Were you still working when you had diabetes? How long have you lived at the present address? How do the people around you support you? What does religion do for you? Do you have any beliefs regarding diabetes? Do you use anything else to help with the diabetes? How do you feel you are managing your diabetes? Which services have you utilised and what has been your experience with these services? How do you find out information about diabetes? Tell me about your life in Guyana. How do you keep active? Did any of your relatives have diabetes? Appendix 9. Analysis of Vera’s interview using PAR process Vera’s Type 2 diabetes remained undiagnosed for 1 1/2 years
Diagnosed by colleagues following display of symptoms at work Hereditary element to diabetes - father diabetic, and cousins on father’s side – predisposition to the illness Systematic account of the poor delivery of diabetic care following initial diagnosis Originally a multicultural group that attended diabetic clinic but Vera noticed that now mainly two specific groups attend – Afro-Caribbean, Asians and some Eastern Europeans
Demonstrates strength of character, stoic, strong, fiercely independent, self-sufficient, strong coping skills, religion plays a role Not coping – complex diabetic regime Issues concerning doctor/ health professional patient relationship Non-compliance with diabetic seminars Supportive friends Recurring theme - lack of education regarding the long term condition Engaged in informal group discussions with other patients while waiting at the diabetic clinic Joined supportive group/organisation Self-managed the condition and this is reflected throughout the interview Inconsistent monitoring by patient and diabetic services The effects of physical implications of diabetes Early Experiences in Guyana before migration Early childhood experiences in Guyana Integration of different races in Guyana is reflected in the make-up of the Guyanese population in Guyana and abroad Politics in Guyana - migration Lifestyle/ Family life/experiences in Guyana – included diet, relaxation and beliefs held by family Comparisons made between Western lifestyle and Guyanese lifestyle and differences highlighted Patriarchal family – dominant father Ambivalence about not returning to Guyana Psychological/social problems The effects of stress at work – managerial position Several losses occurring simultaneously leading to stress – aunt, sister and mother - shock Lonely and isolated in the home Evidence of denial – mother’s illness and possibly diabetes Negative attitudes to diabetes Stigma of having diabetes The need for counselling Carer’s role Caring for mother with dementia, misdiagnosis of mother’s heart condition, sister and aunt Lack of education about dementia Poor standards of care for mother in hospital/neglect of the elderly Feelings of guilt when mother is admitted to hospital due to effects of caring
I was diagnosed with diabetes around the end of September 1983 but had been experiencing symptoms for about 11/2 years. I had been seeing her GP a locum for over a year with various symptoms but no one did a test maybe because they were not clued up about diabetes in those days. I was literally on the floor, sleeping during lunch breaks in order to get through the afternoon’s work. I was drinking everything she could get her hands on, including Ribena. My weight shot up and put on half a stone. There was a spot on my nose that was like a boil but it wouldn’t heal. These were all the symptoms that nobody was picking up on. I was getting all sorts of genital itching so saw the GP’s locum an elderly female and the moment I said look, I have a problem she immediately assumed that it had to be a social disease. I mean I have been through so much and these things make me so mad, because when you go there and you have got a problem of that nature and you don’t know and I said ‘look lady let me tell you something, I said my lifestyle is such you know, I lead a Christian life and this is it, I have not been sleeping around. I was just really very low on energy, itching all over, coming out in hives and all sort of things. In the end it was one of my staff at work, she had been diabetic for along long time and she spoke to somebody else who is also diabetic. She knocked on my door one day and said ‘Do you mind if I have a word with you, she said we have been observing your for a while and have come to the conclusion that you’re diabetic. I didn’t know what the condition really entailed so I knew you that she had to eat at a certain time of the day and she was on insulin. She said to me, you better go and see the occupational nurse. So I went off and saw her and she did the test, the usual urine test and said from the sound of this and the looks of this, you could be dead because it was absolutely very dark brown and she started asking me one or two questions. I went off and saw my GP that same night and suddenly he was very concerned. He was a different character sitting up and taking notice. Then we had booked to go to Spain and he said no, you’ll have to cancel because you can’t go to Spain with untreated diabetes. Now all he needed to really do really was to say to me ‘Well look, avoid certain things, keep out of the heat, you know drink a lot of water. Then I had to wait about a month before I got to St George’s and they then diagnosed it. I was put on a very severe diet, you could hardly eat anything and I stayed on that for about year and thing improved dramatically. But then I suddenly realised this diet wasn’t doing the trick and by that time I had seen one of the senior people at St George’s who was not very courteous and he said to me ‘Why are you here, your GP could be looking after you, in other words, you are not a true diabetic. So I went away and I continued my diet and things started to get worse again. So of my own volition I rang St George’s and I said ‘Sorry, but I need to come back and see you’, and that is how I stayed with them until a year ago when they suggested that at this stage my GP could look after the situation
It shows that the medical profession are not as clued up as they are now are about diabetes. I don’t think they give any thought to the psychological effects of somebody being diagnosed, suddenly being told ‘You can’t do this and you can’t do that, you can’t have this, you can’t have that and it is affecting you in so many ways and you have to stop and think about when you eat, how you eat and you must do all these tests. They never pointed out the effect it could have on your eyes, gums or your feet, there was not education as such. It was just, oh we’ve got it under control and you go there every six months or three months. Download 1.11 Mb. Share with your friends:
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