PATIENT INFORMATION SHEET

Neuro LTC Study – Survey

Introduction

We would like to invite you to take part in a survey investigating your views on living with your neurological condition and the care that you have received. If you are married or have a partner or friend who knows you well, we would also like to ask this person to take part in the study as we are interested in the experiences of those who may provide care, assistance, or support to those with a neurological condition. We sometimes refer to this person as a “caregiver”.

Before you decide whether to take part we would like you to understand why the research is being conducted and what it would involve for you. The person who has given you this information sheet will be happy to go through the information with you if you wish and answer any questions you may have.

Why have I been asked to participate in this study?

You have been asked to participate in this research study as you have one of the following neurological conditions we are interested in learning more about: epilepsy, Huntington's disease, motor neurone disease, multiple sclerosis, or Parkinson's disease. We would like to see whether you would be willing to take part in a survey about factors that influence the level of care that you need due to your neurological condition and the impact of fatigue. This would involve you completing an online or paper-based version of a questionnaire. It will ask you about the things that you think increase or decrease the level of care that you need.

What will I have to do?

If you agree to take part in this research study we would like you complete a survey questionnaire. We estimate that it would take you under 30 minutes to complete. It can be completed on a computer with internet access, on paper or over the telephone. There will only be one survey to complete and no further participation from you is required at this time. However, there will be a future opportunity to participate again in the study in a focus group. At the end of the survey we will ask you if you would like take part in the future activity in the research project.

What are the possible advantages and disadvantages of taking part?

We cannot guarantee any direct advantages to your participation in this research study. What you tell us will help us to better understand the factors that influence care levels for people living with certain neurological conditions. This may help us to develop new ways of assessing and monitoring important aspects related to neurological conditions. It may also help us to better organise care and service provision in the future.

We do not anticipate any risks or disadvantages in your taking part. This study has been reviewed by an independent ethics committee to protect your safety, rights, well-being and dignity. This study has been given a favourable opinion by the South Central Hampshire A-Research Ethics Committee.

If any topic in the survey does cause you distress and would like to speak to somebody, we can arrange for a member of the clinical team to contact you to provide support. We also provide details of Southampton Counselling run by Life Changes who offer a self-referral counselling service (see contact details below).

Do I have to take part?

Your participation in this research study is entirely voluntary. It is up to you to decide whether or not you would like to participate. The care or treatment you receive now or at any time in the future will not be affected by your decision. If you do agree to take part in the research study we will ask you to confirm your consent on the first page of the survey. If you decide to take part you are still free to withdraw at any time.

Expenses and payments

No expenses or payments are made for completing the questionnaire. If you choose to complete the questionnaire on paper, a stamped addressed envelope is provided for its return.

Further Information

Who is organising the study?

This research study is organised by Dr Christopher Kipps (Consultant Neurologist) at University Hospital Southampton NHS Foundation Trust. The study is being supported by the National Institute for Health Research (NIHR), Collaborations for Leadership in Applied Health Research and Care (CLAHRC), Ageing and Dementia: Improving Routine Clinical Care theme.

Will my taking part in this study be kept confidential?

All information that is collected about you during the course of the research study will be kept strictly confidential. It will be stored in accordance with the Data Protection Act and the NHS Trust policies. All data collected from you will be link anonymised using a code or pseudonym instead of your name. Only researchers working on the study will have access to the original names and their linked codes and pseudonyms. All data will be stored on a password protected computer in a locked office at an NHS site.

What will happen to the results of the study?

We aim to use the findings from the research study to gain a better understanding about care for people with different neurological conditions. This includes understanding about how people live with a neurological condition, their experience of care support, and any problems or difficulties they encounter that change their care requirements. We hope to be able to publish the results from the research study in peer reviewed scientific journals. Any published findings or quotations will use pseudonyms and will maintain your confidentiality and anonymity. You will not be personally identified in any reports or publications.

What will happen if I don’t want to carry on with the study?

Your participation in the research study is voluntary and therefore you are free to withdraw at any point without giving any reason. If you do decide to withdraw we would like to maintain any data we have already collected up to your withdrawal. If you do decide to withdraw this will not affect your regular treatment or care now or at any time in the future.

Who can I talk to if there is a problem?

If you have a concern about any aspect of this research study, you should ask to speak to the researchers involved who will do their best to deal with your concerns (see contact details below). If you still remain unhappy and wish to complain formally you should contact Patient Support Services (Patient Support Services, Southampton General Hospital, tel:02381206325 or email ).

In the unlikely event that something does go wrong and you are harmed during the research study and this is due to someone’s negligence then you may have grounds for a legal action for compensation from University Hospital Southampton NHS Foundation Trust. However, you may have to pay your legal costs. The normal National Health Service complaints mechanisms will still be available to you.

Our contact details

Research Officer
Veena Agarwal
Email:
Mobile: 07393762105 / Chief Investigator
Dr Christopher Kipps
Wessex Neurological Centre
Mailpoint 101 Level A
Southampton General Hospital
Tremona Road Southampton
SO16 6YD
Tel:023 8120 5434
Email: / Admin contact
Sam Fairhurst, Research co-ordinator
Tel: 023 8120 6132/07393 762 105
Email:
Southampton Life Changes Community Counselling Service
Website with online referral form: www.lifechangescounselling.org.uk
Phone: 023 8040 5569

V.1.1; 05/07/2017 IRAS project ID 203783 4