You have been invited to take part in a survey about your experiences of caring for somebody with Huntington’s Disease. We are interested in the effects of caregiving on your psychological wellbeing and the ways in which you cope with caregiving. Before deciding whether you wish to take part in the study, please read the following information about the research, and what we would like you to do if you take part. If any of the information is not clear, please feel free to contact the researchers or supervisor, using the contact details provided. Please feel free to take your time to decide whether or not to take part. The last opportunity to participate will be 9th July 2020, when we begin to analyse the data.
What is the purpose of this study?
The purpose of this study is to look at the experiences of caring for an individual(s) with Huntington’s Disease. Previous research has indicated that high levels of stress are reported by carers and that high stress levels have an impact on physical and psychological health. We are interested in the emotional wellbeing and quality of life of caregivers and in the ways in which they cope with the demands of caregiving. We are also interested in finding out about the positive aspects of caring for somebody who has additional needs. In the future, the information provided in this study will be compared with the information from caregivers of people with different types of additional needs. Altogether, this information will help us develop information to support the psychological wellbeing of all those who care for people with additional needs.
The study is being carried out by Dr Deborah Lancastle, who is a Health Psychologist and Principal Lecturer at the University of South Wales. Deborah has expertise in the ways in which people cope with challenging life experiences. The study will also be written up by Chloe Hoggins and Praises Kolawole for their MSc Clinical Psychology dissertations at the University of South Wales.
Why have I been invited to participate?
You have been invited to take part in the study because you are a person over the age of 18 who is caring for one or more people with Huntington’s Disease.
Do I have to take part?
It is up to you to decide whether or not you would like to take part. If you do decide to take part, you will be asked complete an online consent form to show that you understand what we would like you to do and are happy to take part. Submitting your completed survey confirms that you have consented to take part and are happy for us to use the data you have provided in this research.
What do I have to do?
We would like you to complete an online survey which will take approximately 20 minutes to complete. Once you have completed the survey your part in the study is complete.
Expenses and payments
You will not receive any expenses or payments if you take part in this research
What will I have to do?
To take part in the study, you would be asked to complete a survey that asks you about your experiences as a caregiver and the effects on your psychological wellbeing and quality of life. You can take your time to decide whether to take part, although please note that data analysis will begin on 9th July 2020 and it will not be possible to include your data after that time. If you decide to take part, please complete the consent form online then proceed to the survey. Instructions are provided online for how to complete the consent form and answer the questions on the survey.
What are the possible risks and disadvantages of taking part?
The experience of caregiving is important to people and you may feel uncomfortable thinking about how it affects you and filling in the questionnaires. You may also think you have a problem with your psychological wellbeing after completing some of the questions. Please be reassured that your responses to the questions are anonymous, which means that the researchers cannot link your responses with your identity, and that you cannot be identified in the dissertation, or in any presentation or publication of the results of this study. However, if you are uncomfortable with the idea of sharing such information you do not have to take part. We have also given you some information and contact details if you are concerned about your wellbeing after taking part in this study. Please note that we are not able to diagnose any physical or mental health problem from your responses to this survey. If you are at all concerned about your physical or mental health you should contact your own General Practitioner (GP) and/or other sources of help, below.
What are the possible benefits of taking part?
We cannot promise that the outcome of the research will help you, but we hope that the information gathered from the study will help us to develop materials that help to support the emotional wellbeing of those who care for people with additional needs.
What if there is a problem?
If you have questions about the survey itself, please contact Chloe and Praises. If there are any other issues or problems, please contact Dr Deborah Lancastle. If you are unhappy with anything about this survey and wish to make a formal complaint, you can contact Jonathan Sinfield. The contact details are below.
Will my taking part in the study be kept confidential?
Your responses to the survey are anonymous and your responses will be kept securely. All data provided will be kept on password protected computers which only the researchers and supervisor can access. Dr Deborah Lancastle will be the custodian of the data. The data will not be passed on to anyone outside of the research team and will be kept for 5 years and then destroyed. Analysis of anonymised data will be carried out by Dr Deborah Lancastle, Chloe Hoggins and Praises Kolawole. Your anonymised data may be combined with data from other caregiving groups so we can find out about the similarities and differences in the experiences of the carers of people with a variety of needs.
Involvement of the General Practitioner/Family Doctor (GP)
We will not be collecting information about your GP or contacting your GP about your involvement in this study or your responses. Therefore, if you are at all concerned about your physical or psychological wellbeing it is up to you to contact your GP.
What will happen if I don’t carry on with the study?
If you change your mind about taking part while you are still completing the survey, simply close down the survey. If you do decide to withdraw from the research before you have finished the survey, all information and data provided by you will be removed by the researchers. As your responses are anonymous, however, it is not possible for you to withdraw from the study after you have submitted your completed survey. This is because it is not possible to link your completed survey with your identity.
What will happen to the results?
The results will be presented at academic conferences, and written up in research publications by Dr Deborah Lancastle. In addition, the results will be used in an MSc dissertation by Chloe Hoggins and Praises Kolawole. You cannot be identified in any presentation of the results of this study. If you wish to find out about the outcome of the study after results have been analysed you may contact the researchers.
Who is organising or sponsoring the research?
The University of South Wales is sponsoring the research.
Thank you very much for taking the time to read this information sheet, and please take your time to decide whether or not to take part. If you have any questions, please contact the research student or Dr Deborah Lancastle, using the contact details below.
If you have any questions about the survey, please contact the research students:
Chloe Hoggins – email@example.com
Praises Kolawole - firstname.lastname@example.org
If you have any other questions about this research, please contact the research supervisor:
Dr. Deborah Lancastle CPsychol AFBPsS
School of Psychology and Therapeutic Studies
University of South Wales
Pontypridd CF37 1DL
Telephone: 01443 483566
You may also find the following sites helpful for information about caregiving and Huntington’s Disease.
Huntington’s Disease Association website https://www.hda.org.uk/
The NHS website with information on Huntington’s Disease https://www.nhs.uk/conditions/huntingtons-disease/
The NHS Carer’s Direct Helpline (0300 123 1053) or http://www.nhs.uk/conditions/social-care-and-support-guide/pages/carers-direct-helpline.aspx
If you are unhappy about any aspect of the study, please contact the University of South Wales Research Governance Officer:
Research Governance Officer,
Research and Innovation Services (RISe) / Gwasanaethau Ymchwil ac Arloesedd,
Research and Business Development Office / Swyddfa Datblygu Busnes ac Ymchwil,
University of South Wales / Prifysgol De Cymru.
Tel: (01443) 484518