Why are we doing this research?
Research has shown that young people who experience physical health conditions, such as cancer and physical disabilities, can experience ‘fatigue’ which has been described as feelings of ‘exhaustion’ and a ‘lack of energy’. Research has also looked at this in adults who have specific neuromuscular conditions. We don’t know if this also affects young people across different neuromuscular conditions. We would like to find this out and look at whether it impacts on other areas of life, such as sleep, school and social activities. In the future, this will hopefully help us to know more about how we can support children and young people with neuromuscular conditions.
To do this research, we are using 7 questionnaires. These measure fatigue, sleep quality, school/social functioning, mood, physical health, quality of life, and beliefs and behaviours. We would like young people to fill these in.
As part of the study, we may also contact some participants to invite them to take part in a follow-up interview, looking at the experiences of fatigue. You, and your child, can choose whether you are happy to be contacted again with further information.
Why has my child been chosen?
Your child has been chosen to take part in this study because they are aged between 11 and 18 years and have a neuromuscular condition.
Does my child have to take part?
No, taking part in this study is voluntary.
If your child does decide to take part, they can stop completing the questionnaires at any point once they have started. The questionnaires will be online and if they choose to close the web browser all their information will be deleted from the study. They will not have to give any reason for not taking part or for deciding to exit the survey.
Once they have finished the questionnaires, they will be asked if they are happy to submit their answers:
· If they tick the “no” box, their answers
will not be included in the study and their data will be withdrawn and deleted.
· If they tick the “yes” box, their answers will be used in the study and they will no longer be able to withdraw their data from the study.
What will my child be asked to do if we decide to take part?
- If you and your child would like to find out more about the research, you can contact the researcher on: kw733@bath.ac.uk
- If they would like to take part, you and your child can click next at the end of this page – you will then both be invited to complete consent forms and your child will be able to continue to complete the questionnaires.
- If your child is under 16, you will be asked to fill in a form to say that you agree for them to take part. If they are aged 16 or over, they can fill this form in themselves. The consent forms will ask for an email address - this is an invitation to be entered into a prize draw for the chance to win one of three £20 gift vouchers. The email address will be stored securely and separate from the questionnaire responses. The consent forms will also ask if you and your child would be happy to be contacted by the research team again in the future. Choosing no will not affect participation in this study.
- Your child will then be asked to fill in their demographics and then seven questionnaires. We expect this to take between 20 - 30 minutes.
- When they have finished the questionnaires, they will be shown some more information about the research. It would be helpful for you to read this information through with your child.
- It is important that your child feels comfortable reading and understanding English so that they can answer questions independently. You can help your child to read any questions they do not understand but you cannot help them answer.
Do I need to worry about my child taking part?
The study will ask your child to fill in questionnaires about their thoughts, feelings, and experiences. Answering questions on these things could be upsetting. If your child feels upset when taking part, they can stop at any time. There are no right or wrong answers and the responses they give will not affect their current care or treatment.
If you notice that your child does feel sad or worried during or after taking part, it is important to talk to them about this. It may also be helpful to ask if they would like to speak to their GP or school nurse/counsellor about how they are feeling. Researchers will not inform your child’s GP if they take part in this study and so it may be helpful to let your child’s GP know about the research if they do experience any distress following participation.
Are there any benefits to taking part?
If your child does decide to take part in this study, their responses will hopefully help us to understand whether fatigue is a problem for those living with a neuromuscular condition, and the impact of this on areas of their life. We hope that this will lead to better support for young people in the future.
Taking part also means your child will be entered into a prize draw for a chance to win a £20 gift voucher.
Will my child’s answers be confidential?
The information your child provides will be confidential and anonymous. Everyone who takes part will be assigned a unique number, and the answers they provide will be stored with that number, rather than their name. This means that only the research team will be able to link their answers to them.
As the study is anonymous, the researchers will also not know the names of who has taken part. This means that once your child has submitted their questionnaires, they will not be able to withdraw their information. At the end of the questionnaires, they will be asked if they are happy to submit their answers. If they answer ‘no’, all of their information will be withdrawn and deleted.
What will happen to my child’s answers after they take part?
Your child’s answers to the questionnaires will be kept on a secure computer file and kept anonymously (with a number, not their name). They will be stored at the University of Bath for 10 years. After this, their anonymised answers will be securely stored at the University of Bath Archives. This is where previously collected information is stored so that it can be looked at by researchers if needed.
If you would like a summary of the study results after it has finished, you can ask the researcher for this after your child has taken part. Any results from the study that are published will not include any identifiable information.
What if I have any questions or if I have a problem?
If you have any questions about this study, please contact the research team. Firstly, you should contact the main researcher (Kiesha Williams). If needed, you can also contact the academic or field supervisors. They will aim to get back to you within two weeks.
Main Researcher – Kiesha Williams
Email: kw733@bath.ac.uk
Academic Supervisor – Dr Maria Loades
Email
: m.e.loades@bath.ac.uk
Field Supervisor – Dr Sadie Thomas-Unsworth
Email:
sadie.thomas-unsworth@uhbw.nhs.uk
Who is organising this study?
This study is being completed by a doctoral student at the University of Bath. It is closely supervised by members of staff in the Department of Psychology at the University of Bath.
Who has approved this study?
This study has been given ethical approval by the Department of Psychology Research Ethics Committee at the University of Bath (Ref: 20-240)
If you are unhappy with the way the research is carried out and would like to complain, you can do this by contacting the Department of Psychology Research Ethics Committee at the University of Bath - email:
psychology-ethics@bath.ac.uk
