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Participant Information Sheet for guardians:
Thank you for your interest in this online survey. You have been invited to take part because you are the parent or guardian of a child who is aged 16 or younger and who has cerebral palsy. Please read through this information before agreeing to take part by ticking the 'yes' box below.
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Who are we and why are we doing this?
We are a group of researchers at the University of Oxford who study cerebral palsy and how physical therapy can improve the lives of children with cerebral palsy. We are interested in finding out how COVID-19 and the lockdown affected children with cerebral palsy, so that we can better understand the needs of children and families, and so that we can design better programmes to help with motor skills development and rehabilitation. We will be sharing the anonymous results of this study to clinics and schools to help better address the needs of children with cerebral palsy.
You may ask any questions before deciding to take part by contacting the researchers (Dr Bronwyn Gavine and Dr Melanie Fleming, Wellcome Centre for Integrative Neuroimaging, Nuffield Department of Clinical Neurosciences at the University of Oxford; details below).
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What will taking part involve?
You will be asked to answer some questions about you and your child. We are also interested in the views of adolescents with cerebral palsy. If your child is aged between 10-16, there is an optional survey available for them to complete at the end of this survey.
The questions you will be asked relate to your family life, overall health and wellbeing, physical and occupational therapy, physical exercise and how you are coping during the Covid-19 pandemic. The questions cover quite a lot of areas so that we can get a really good understanding of how things are for you and your family and what the effect of lockdown was, which will help us better understand what kind of support children with cerebral palsy might need.
You can choose to answer these questions via an online questionnaire, or, if you prefer, we can arrange a video or phone interview. If you have any accessibility considerations, please get in touch with us: bronwyn.gavine@ndcn.ox.ac.uk or melanie.fleming@ndcn.ox.ac.uk
You don't need any background knowledge and there are no right or wrong answers. The survey should take around 10-15 minutes. You will be able to save and return to the survey at a later stage, but only if you note down a unique code and use it to login again.
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The information you give us will be analysed by academic researchers at Oxford University and other institutions that have been approved by the research team so that we can work out the best way to support families.
If you have any concerns about your child's mental health or would like further support, you may wish to visit http://www.youngminds.org.uk/. If you have concerns about your own or another adults' mental health you may wish to visit www.samaritans.org or call the Samaritans on 116 123. You can also visit www.emergingminds.org.uk for their resources list for supporting children and young people during the COVID-19 pandemic and https://www.cerebralpalsy.org.uk/grants-and-support.html for resources regarding cerebral palsy.
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Do I have to take part?
No, taking part is voluntary. If you do decide to take part, you may stop at any point during the questionnaire for any reason. If you have not completed a section your answers will not be saved. If you have completed a section, it will be submitted and we will not be able to delete the data, as is not possible to link the answers given to the person who filled them in.
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How will my data be used?
The information you or your child provide during the study is research data. Any research data from which you or your child can be identified (name and contact details), is known as personal data.
Personal data will be stored in a secure online database using an encrypted Nexus 365 OneDrive document accessed through encrypted and password-protected laptops. Researchers will access the data using secure, encrypted university computers. Your contact details will be deleted once the interview is completed. Consent forms will be retained by the researchers for 10 years after publication of the work of the research.
If you are completing the online questionnaire only, no personal data will be collected. Your IP address and email address will not be stored and will not be accessible to researchers. We will not ask for any information that could identify you, and we will take all reasonable steps to make sure that they remain confidential.
If you or your child complete the survey via video/phone interview, your name and contact details (phone number, email address) will be collected to arrange the call. These details will be deleted once the interview is completed.
The consent form will record your name so that we can ensure you have consented before the interview. It will not be possible to link your interview answers to your personal data.
Other research data will be stored for 10 years after publication or public release of the work of the research.
The researchers will have access to the research data. Responsible members of the University of Oxford may be given access to data for monitoring and/or audit of the research.
Who will have access to my data?
The University of Oxford is 'the data controller' with respect to your personal data, and so will decide how your personal data is used in the study. The University will process your personal data for the purpose of the research outlined above. Research is a task that we perform in the public interest. Further information about your rights with respect to your personal data is available from https://compliance.admin.ox.ac.uk/individual-rights.
We would also like your permission to use your data in future studies, and to share data with other researchers (e.g. in online databases). It will not be possible to identify you from this data.
Responsible members of the University of Oxford and funders may be given access to data for monitoring and/or audit of the study to ensure we are complying with guidelines, or as otherwise required by law.
The Principal Researcher is Dr Melanie Fleming, who is part of the Department of Clinical Neurosciences and the Wellcome Centre for Integrative Neuroimaging at the University of Oxford.
This project has been reviewed by, and received ethics clearance through, the University of Oxford Central University Research Ethics Committee R71276/RE001.
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How do I find out about the results?
We will provide information about the results of this study through the cerebral palsy charities and organisations. You can also email the researchers directly if you would like to.
Who do I contact if I have a concern about the study or I wish to complain?
If you have a concern about any aspect of this study, please speak to Bronwyn Gavine or Melanie Fleming, emails: bronwyn.gavine@ndcn.ox.ac.uk, melanie.fleming@ndcn.ox.ac.uk and we will do our best to answer your query. We will acknowledge your concern within 10 working days and let you know how it will be dealt with. If you remain unhappy or wish to make a formal complaint, please contact the Chair of the Medical Sciences Interdivisional Research Ethics Committee at the University of Oxford who will seek to resolve the matter as soon as possible:
Email: ethics@medsci.ox.ac.uk; Address: Research Services, University of Oxford, Wellington Square, Oxford OX1 2JD.
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We are also interested in adolescents' views. If the child who you answer the survey about is aged between 10-16 years, when you get to the end of the survey there is an option for them to also take part. |