Participant Information Sheet

Study Title: What are partners' experiences of living with someone who has a chronic pain condition?

Hi. My name is Laura Smith. I'm training to become a clinical psychologist and I'm doing this study as part of my training course at Lancaster University.

Please read this leaflet before deciding whether you want to take part. If there is anything you are unsure about, you can contact me.

What is the study about?

The study is looking at the experiences of partners of people with a chronic pain condition. I would like to hear about your experiences. This research can then be distributed within the academic and professional field and can be used to help increase the understanding and awareness of partners' experiences. This research may be used to help services to help support you and your partner. Please be assured, this study is not connected to any NHS services provided to those with chronic pain and so will in no way affect the services offered to you or your partner.

Do I have to take part?

No. If you don't want to that is ok and it won't affect your ability to get help from NHS services or support groups.

I'm happy to take part. What happens next?

How to contact the researcher? You can contact me either by phone/text, email or by post on the details provided. I will then contact you and arrange an appointment to interview you.

Where/how will I be interviewed? Interviews can be conducted in person (either at your home or a local community venue near your home), via telephone or via skype. It is up to you to decide which method of interview you would prefer. If you live too far for me to travel to you at a mutually convenient time, telephone or skype interviews will be required.

How long will it last? The interview will last approximately 60-90 minutes. Some interviews may take more or less time and that is ok.

What will happen before the interview? Before the interview starts I will go through this information sheet with you again and you will be able to ask any questions you may have. I will then go through a consent form with you, which asks several questions to ensure you fully understand what you are consenting to. You do not have to provide consent to take part, however, without consent the interview cannot occur.

What questions will the interview ask? The interview will explore your experience of living with a partner who has chronic pain. Some of the broad areas we may discuss are the impact of pain on you, the impact pain has on various relationships and how your experiences have changed over time.

Recording the interview: The interview will be audio recorded. If we meet face to face, or via skype a Dictaphone will be used. If we have a telephone interview there is a device which is used to record our phone conversation. This is to ensure I can accurately transcribe your interview afterwards.

Confidentiality of the interview: During transcription your person details (for example your name and where you live) will be anonymised. You will be asked to choose a pseudonym. This is to ensure that people cannot identify you by name.

After the interview: I will transcribe our conversation and then analyse your date, along with the other interviews I will have collected. This analysis will then be written up into a research report which will be part of my doctoral thesis. It will also hopefully be published in various forums (for example conferences and pain related special interest groups).

What if I change my mind after saying I want to take part?

You can change your mind about taking part whenever you want and you don't have to give a reason why you changed your mind. If you change your mind, it won't stop you obtaining any medical treatment or support from NHS services or support groups. You can change your mind after we have completed the interview however, if you change your mind more than two weeks after our interview, your data will still be included in the study. This is because it will have already been pooled with the other interviews I will have collected and analysed, making it difficult to separate your interview data from other people's.

Will my data be confidential?

The information you provide is confidential and anonymous. Your information will be kept safe on a password protected computer. When the study is finished, my University will keep copies of the typed interviews and the audio recordings on an encrypted and password protected computer network. After ten years these will be destroyed. Should you disclose information that causes me to concern that you, or another person are at risk of harm I will have to break your confidentiality. I will always try and discuss this with you first and to come to a mutual agreement as to the best course of action. I may also seek support from my research supervisors or a member of the clinical team at Lancaster University as to the best course of action.

What if I say something to you that suggests that there is a danger to myself or somebody else? Is that kept confidential?

If you say something which causes me to be concerned about yours or another's safety I will have to tell somebody about this. I will always try to make sure I tell you beforehand so that you know what is happening. However, sometimes, if I feel that the risk is urgent then I may not be able to do this.

What will happen to the results?

I will type up all of the interviews and then analyse the transcripts and write a report. The report may be published in a journal.

Who has reviewed the study?

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

Are there any risks to taking part?

As stated above the Lancaster University Faculty of Health and Medicine Research Ethics Committee and Lancaster University Research Ethics Committee deem this study safe for you to participate in. The topic we will be discussing may be distressing or upsetting for some people. If anything upsets you please do let me know and we can discuss it during the interview. We can stop the interview if you feel it is too upsetting.

Are there any rewards to taking part?

You may find taking part interesting however, there will not be any rewards for you taking part in my study.

Where can I get more information about the study if I need it?

If you have any questions please contact me on the contact details below.

Laura Smith, Trainee Clinical Psychologist,
Telephone Number: 07508 375 651
Email address: l.smith4@lancaster.ac.uk
Postal address: Laura Smith, c/o DClinPsy programme, Furness Building, Lancaster University, LA1 4YG.

Who are the research supervisions of this project?

Dr Jane Simpson
Email: j.simpson2@lancaster.ac.uk
Address: DClinPsy, Furness Building, Lancaster University, LA1 4YG

Dr Fiona Eccles
Email: f.eccles@lancaster.ac.uk
Address: DClinPsy, Furness Building, Lancaster University, LA1 4YG

Complaints

If you wish to make a complaint or you are worried about it and you don't want to talk to me, you can talk to:
Prof. Bruce Hollingsworth
Head of the Division of Health Research
Tel: (01524) 594154
Email: b.hollingsworth@lancaster.ac.uk
Furness Building
Lancaster University
Bailing
Lancaster
LA1 4YG

Prof. Roger Pickup
Chair of the ethics committee
Tel: (01524) 593746
Email: r.pickup@lancaster.ac.uk
Furness Building
Lancaster University
Bailing
Lancaster
LA1 4YG

What other help can you get if you feel upset by this study?

Should you feel upset as a result of taking part, please inform me. I will not be able to provide ongoing counselling or support, however we can stop the interview for a short break, rearrange an alternative time or cease your involvement in the study. Alternatively, if you feel you cannot do this, please contact your GP, the Samaritans (08457 90 90 90) or Pain Concern (0300 123 0789).

Thank you for taking the time to read this sheet!