Participant Information Sheet

Study Title: The views of people with Huntington's disease on assisted dying: A qualitative study

My name is Laurence Regan, I am a trainee clinical psychologist at Lancaster University. I am conducting a research project as part of my Doctoral training exploring the views of people with Huntington's disease (HD) on assisted dying. I will be conducting interviews with people with HD, which would last up to an hour.

What is the study about?

This study aims to understand people's views on assisted dying, its legality, how it could affect their care, and their personal situations and how this affects their views.

Why have I been approached?

You have been approached because I think you could provide important insights and valuable information about the experiences and views of people with HD. Some people who offer to take part may not be included in the study, if they would not be able to talk about their experiences and their views about assisted dying.

Do I have to take part?

No. It's completely up to you to decide whether or not you take part or not.

What will I be asked to do if I take part?

If you decide you would like to take part, we would arrange a time and date for interview that suits you. The interview is likely to take up to an hour. You would be asked about your views on assisted dying and your experiences that inform these views. It can take place over more than one session if you would prefer. Interviews may be face-to-face, via telephone or Skype. If face-to-face is chosen it will take place at a suitable location of your choice (such as your home or a quiet venue local to you). It is important to note that although Skype is encrypted it is not wholly secure.

Who can take part?

Anyone who has a confirmed diagnosis of HD can take part who is over the age of 18 and can speak English to a sufficient level to be able to take part in the interviews. This means you will have undergone genetic testing and have a confirmed diagnosis of Huntington's disease or be pre-symptomatic gene positive.

What will you do with the information I give you?

The interview will be recorded and transcribed. The original recordings will be destroyed after they have been written up and the transcripts will be securely stored. Everything you say will be kept confidential. Direct quotes may be used but all identifiable information will be anonymised. The only time I would have to break confidentiality is if there were an issue of risk to yourself or others, in which case information may need to be passed on to appropriate people. If this were to happen I would tell you if possible.

Will my data be confidential?

The information you provide is confidential. The data collected for this study will be stored securely and only the researchers conducting this study will have access to this data:

  • Audio recordings will destroyed and/or deleted after they have been analysed.
  • Hard copies of consent forms will be kept in a locked cabinet.
  • The files on the computer will be encrypted (that is no-one other than the researcher will be able to access them) and the computer itself password protected.
  • At the end of the study, hard copies of forms will be kept securely in a locked cabinet for five years. At the end of this period, they will be destroyed.
  • The typed version of your interview will be made anonymous by removing any identifying information including your name. Anonymised direct quotations from your interview may be used in the reports or publications from the study, so your name will not be attached to them.

What if I change my mind?

You're welcome to change your mind at any time and there is no pressure on you to continue. There is no time limit for changing your mind, although once your data has been anonymised and incorporated into themes it might not be possible for it to be withdrawn. However, every attempt will be made to extract my data, up to the point of thesis submission.

What will happen to the results?

The results will be summarised and reported in a dissertation/thesis and will also be submitted for publication in an academic or professional journal. The findings will also be disseminated to the Huntington's Disease Association England and Wales.

Are there any risks?

There are no risks anticipated with participating in this study. However, if you experience any distress following participation you are encouraged to inform the researcher and contact the resources provided at the end of this sheet.

Are there any benefits to taking part?

Although you may find participating interesting, there are no direct benefits in taking part. This research will contribute to the evidence base for assisted dying and Huntington's disease.

Who has reviewed the project?

This study has been reviewed by the Faculty of Health and Medicine Research Ethics Committee, and approved by the University Research Ethics Committee at Lancaster University.

Where can I obtain further information about the study if I need it?

If you have any questions about the study, please contact the main researcher: l.regan@lancaster.ac.uk, 07508406276

Complaints

If you wish to make a complaint or raise concerns about any aspect of this study and do not want to speak to the researcher, you can contact:

Professor Roger Pickup, Associate Dean for Research
Tel: (01524) 593746
Email: r.pickup@lancaster.ac.uk
Faculty of Health and Medicine (Division of Biomedical and Life Sciences)
Lancaster University
Lancaster
LA1 4YD

If you wish to speak to someone outside of the Clinical Psychology Doctorate Programme, you may also contact:

Professor Paul Bates, Associate Dean for Research
Tel: (01524) 593718
Email: p.bates@lancaster.ac.uk
Faculty of Health and Medicine (Division of Biomedical and Life Sciences)
Lancaster University
Lancaster
LA1 4YD

Thank you for taking the time to read this information sheet.

Resources in the event of distress

Should you feel distressed either as a result of taking part, or in the future, the following resources may be of assistance:

The Samaritans (08457 909090) is an organisation that is available 24 hours a day to provide confidential emotional support for people who are experiencing feelings of distress, despair or suicidal thoughts.

Huntington's disease association www.hda.org.uk
There is lots of advice and information on their website. If you call the head office on 0151 331 5444, they can put you in touch with your regional care advisory service. More information about this service is given here: http://hda.org.uk/hda/rca