UK Keratoconus Self-Help and Support Association
Previous research tells us that in theory a high percentage of people in the United Kingdom are happy to donate their organs either as a living donor or after their death. However, despite several high profile campaigns overall donation rates remain low in practice, and even lower amongst people from Indo-Asian and Afro-Caribbean ethnic backgrounds.
Of those people who do donate, the majority originate from White British ethnic groups. This is particularly problematic for Indo-Asian and Afro-Caribbean patients awaiting a transplant because they are more likely to have a rarer blood group (B+) and tissue type than the majority of donors. This often results in significantly longer waiting times for an organ transplant and an increase in complications associated with organ failure.
The shortfall in donors from these ethnic groups is further exacerbated by an increased need for organ transplants – particularly the kidneys – because of high rates of hypertension and diabetes in this ethnic population, which can lead to kidney failure.
To try and improve the total number of organs available for transplantation and in particular the severe shortfall between supply and demand for patients from Indo-Asian and Afro-Caribbean ethnic backgrounds, this study hopes to improve our understanding as to why the gap exists between what people say they are willing to do, and what they actually do in practice.
To understand this gap better, we wish to explore how people from the three main ethnic groups most affected by this (White British, Indo-Asian and Afro-Caribbean) come to understand and view organ donation and transplantation. Our study will be looking at the relationship between individual and social experiences over a person’s life and how these experiences in-turn inform their view of organ donation and transplantation.
Although the study is funded by Kidney Research (UK) and The Big Lottery Fund and its ultimate goal is to address the shortage of organs for donation, we are keen to understand a wide variety of views on this subject, whether they are negative, positive or indifferent.
We feel strongly that it is only by listening to and reflecting on the different thoughts, feelings and experiences of people on the topic of organ donation and transplantation that we will we be able to address the shortfall of organs in a way that respects and recognises different viewpoints, beliefs, feelings and experience.
That understanding will allows us to know better what is and is not likely to be possible to improve organ donation and, therefore, how best to focus scarce public funds.
Who is involved in the study?
Under the guidance of Dr Anthony Warrens, Dr Glenn Smith, Dr Josip Car, Dr Sonia Saxena, and senior nurses Harvinder Kaur Dulku-Shina and Pauline Reece, those involved in conducting the study have a wide range of experience and knowledge on the topic of organ donation, transplantation and ethnicity. Two of the team are from Indo-Asian ethnic backgrounds and one is from an Afro-Caribbean ethnic background. Dr Glenn Smith deals with the day to day running of the study and will conduct most of the interviews. He is a social scientist who has experience of interviewing people on sensitive subjects in an open, balanced and respectful way.
Who can participate?
We are looking for people with a wide variety of experiences from to take part in this study. The following criteria will tell you who we are specifically looking for, but if you are still not sure whether you can participate please do not hesitate to contact us:
How will the study be conducted?
The methods used in this study are in-depth interviews. This will mean that the information will be obtained through interviews where the participant is asked to talk about their feelings, thoughts and experiences of organ donation and transplantation in relation to their life.
What will the interview be like?
Conducted by Glenn Smith, the interview will last 1 to 2 hours and will be recorded using a voice recorder. Although he will have some specific questions, the nature of the interview will be conversational. This means you will be able to talk about your feelings, thoughts and experiences in a relatively free manner. Interviews will be conducted in English with a translator if needed, at your convenience and chosen location, which is usually your own home. A room within the college can be arranged if necessary for personal reasons and in some cases if you wish to maintain complete anonymity an interview can be conducted over the telephone.
Are there any benefits to me?
This research may allow you to explore some of the feelings and issues under discussion.
Are there any disadvantages to me?
Obviously, this research may touch upon sensitive areas of your life. Please do not feel obliged to talk about things if they upset you or make you feel uncomfortable. The interview can be stopped at any point if you wish without any disadvantage to you in anyway.
How will the information be presented?
Interviews will be typed up and then analysed. Once the data are analysed the conclusions will be written up and published in academic journals and in ways that are accessible to the different people that take part.
What about confidentiality?
The interviews and contact information will always remain strictly confidential. Any publication of excerpts from the interviews will use either fake names or no names at all and place names and all identification details will be changed or deleted. Furthermore, the information will be stored as specified under the Data Protection Act. This means in practice that names and addresses will be stored separately from the interviews and all information will be locked away within a locked room when not in use. During the interview and analysis only the research team will have access to personally identifiable information.
If I want to ask a question or withdraw from the study whom can I speak to?
If you are ever worried about any part of the study once you participate in it, need extra information, or wish to withdraw from the study at any time, please contact in the first instance Dr. Glenn Smith who will be pleased to address your queries and concerns:
Dr. Glenn Smith,
Department of Primary Care and Social Medicine,
Imperial College London,
St Dunstan’s Rd,
Telephone: 020-7594 0835
Mobile: 07885 194 917