Does caring for a parent while growing up affect self-care in adulthood?

Introduction

We would like to invite you to take part in a research project. Before you decide, you need to understand why the research is being done and what it will involve for you. Please take the time to read the following information carefully and ask questions about anything you do not understand or talk to others about the study if you wish.

What is the purpose of the study?

This study aims to explore whether looking after one or both parents before the age of 18 affects the way these now-adults look after themselves

Why have I been invited to take part in the study?

You have been invited to take part in this study because we believe that you meet the eligibility criteria, i.e.:

  • You acted as a primary carer for one or both of your parents whilst growing up

  • Are now over the age of 18

Do I have to take part?

No, you do not have to participate. You can withdraw your participation at any time. You can request for your information to be withdrawn up to July 2018 after participating without giving a reason and without prejudice.

What will my involvement require?

If you agree to take part, we will ask you to sign a consent form and confirm a date, time and format (remote or face-to-face) for your interview. If you decide to take part, you will be given this information sheet to keep. The research will last until September 2018, but your involvement would only be for one interview which is not expected to last for more than 1-hour.

What will I have to do?

You will participate in one 1-hour (maximum) interview with the primary researcher. This could be held face-to-face at the University of Surrey, or remotely via remote video conferencing software e.g. Skype/WhatsApp call, depending on your preference.

During the interview the researcher will ask you a few questions about your family and yourself. For instance, you may be asked what it was like to grow up in your family and to look after one or both of your parents. You may also be asked to reflect on how this experience has influenced who you are now.

 

What will happen to data that I provide?

With your permission, the interview will be recorded and transcribed. The transcripts will form the data base for the research project. All electronic data (i.e. interview recordings, participant’s information, etc.) will be stored on a password protected computer. Any hard copies will be kept in a locked draw. All participants’ details included in the final paper will be anonymised. This means that, if we publish or present our results at conferences, no one will know who took part. All data provided will only be accessed by those involved directly with the research However, with your permission, we would like to use anonymous verbatim quotations from interviews in reports.

Research data are stored securely for at least 10 years following their last access and project data (related to the administration of the project, e.g. your consent form) for at least 6 years in line with the University of Surrey policies. However, once anonymised transcription has occurred, data recordings will be destroyed. This is in line with new data protection legislation.

With your consent, to make the most of your participation and support efficient advancements in science, any anonymised data/samples may be used for future research. We cannot tell you at this moment in time what this research will entail or what analyses will be carried out, but we can assure you that all appropriate legal, ethical and other approvals will be in place. For practical reasons your consent will not be sought again unless you indicate you wish us to do this. Your data will not be used for commercial purposes.

Will my taking part in the study be kept confidential?

Yes. Your details will be held in complete confidence and we will follow ethical and legal practice in relation to all study procedures. Personal data [e.g. name, contact details, audio/video recordings] will be handled in accordance with the UK Data Protection Act 1998 so that unauthorised individuals will not have access to them.

Your data will be accessed, processed and securely destroyed by members of the research team, Helena Wells and Dr Cecile Muller. To check that this research is carried out in line with the law and good research practice, monitoring and auditing can be carried out by independent authorised individuals. Data collected during the study may be looked at by authorised individuals from the University of Surrey or by regulatory authorities where it is relevant to your taking part in this research. All will have a duty of confidentiality to you as a participant and will do their best to meet this duty.

In certain exceptional circumstances where you or others may be at significant risk of harm, the researcher may need to report this to an appropriate authority. This would usually be discussed with you first.

Examples of those exceptional circumstances when confidential information may have to be disclosed are:

  • The researcher believes you are at serious risk of harm, either from yourself or others

  • The researcher suspects a child may be at risk of harm

  • You pose a serious risk of harm to, or threaten or abuse others

  • As a statutory requirement e.g. reporting certain infectious diseases

  • Under a court order requiring the University to divulge information

  • We are passed information relating to an act of terrorism

 

What are the possible risks of taking part?

During the interview you may find some of the questions or topics distressing. If this happens, let the interviewer know and they will offer for you to take a break or to stop the interview.

A risk assessment has been completed for this study and we do not anticipate any other risks for taking part.

 

What are the possible benefits of taking part?

This project aims to address a gap in current literature on the effects of caring for a parent during childhood and to consider how this may impact self-care during adulthood. By participating in this study, your experience could contribute to this area of research.

You will also be given a £5 amazon e-gift voucher for participating in this study. The voucher will be emailed to you once all of the study interviews have been completed. 

 

What happens when the research study stops?

The research project is part of an MSc Conversion Psychology degree. As such it will be submitted as a dissertation at the beginning of September 2018 to the University of Surrey for evaluation. The research team also hope to publish the study in a peer reviewed journal and to present it at a conference.

 

What if there is a problem?

Any complaint or concern about any aspect of the way you have been dealt with during the study will be addressed. Please contact Helena Wells, Researcher, in the first instance, or Dr Cecile Muller, Dissertation Supervisor:

Helena Wells: hw00683@surrey.ac.uk

Dr Cecile Muller: cecile.muller@surrey.ac.uk

 

Who is organising and funding the research?

This research is organised by Helena Wells with the support of the University of Surrey. There is no external funding party involved in this study.

Who has reviewed the project?

This research has been looked at by an independent group of people, called an Ethics Committee, to protect your interests. This study has been reviewed by and received a favourable ethical opinion from University of Surrey Health and Medical Sciences Ethics Committee.

 

Thank you for taking the time to read this information.

Ethics reference: 1379-PSY-18

©2017