CHESTI-Conversations

Participate in the CHESTI study by telling us your views
Women talking together in a support group

Study overview

Design: Online interview study
Study location: UK
Aim: To explore chest health, associated illness and outcomes of importance in children and young people with cerebral palsy 
Study participants: Children and young people with cerebral palsy; parent/carers; health, social and educational professionals; and academics and researchers
Contact us at Rachel.knightlozano@plymouth.ac.uk or call 07972702839
 

Study information

Watch a video explaining your role in the study

Information for young people
Information for parents and carers
Information for professionals

Read an information sheet explaining your role in the study

Information for young people
We invite you to take part in our research study, CHESTI-Conversations. This study will take place between September 2024 and June 2025. Before you decide to take part, we want to explain why we are doing this research and what it involves. Please read the information below. It has important details about the study. You can talk to other people about the study. You can also contact the lead researcher on Rachel.knightlozano@plymouth.ac.uk or 07972702839 if:
  • you would like access to this information in another format or language
  • you would like one of our team to go through this information with you
  • you have any questions about the study.
 
What is the research about?
Chest health refers to how well a person can breathe, cough, and clear their lungs. Children and young people with cerebral palsy may experience chest health problems, like noisy breathing, a rattly chest, a weak cough or difficulty clearing phlegm. These problems often lead to frequent chest infections and is the main reason they need antibiotics and hospital care.
Measuring chest health can help us check for changes early, make quick treatment decisions, and decide which approaches work best. Yet, measures such as “breathing out quickly through a tube”, might not work well for many children and young people with cerebral palsy. So, it's unclear how to best measure their chest health.
This study aims to find out what is important to measure in chest health. Importantly, we want to understand this through the views of parents, carers, their child or young person with cerebral palsy and professionals that work closely with these children. 
 
Why have I been invited?
We want to hear your views. As a young person, you may have experienced chest health problems firsthand. You offer a unique and valuable perspective that may not be understood by parents or professionals. Ideally, you will be:
  • aged between 16-18 years old 
  • have cerebral palsy
  • have experienced a chest health issue such as noisy breathing, a rattly chest, a weak cough or difficulty clearing phlegm. 
 
What will I be asked to do?
You will be invited to take part in an online conversation on Zoom, in your preferred language. This will take between 30-45 minutes, depending on how much you would like to tell us. You only have to answer the questions you feel comfortable with. You can also ask the researcher questions, before, during and after the conversation. 
You may want someone familiar to help you during this conversation. This may be to help you to communicate your views or access a computer. Please feel free to invite them to join you. We will not collect information from them.  
 
What will my information be used for? 
Your findings will help us understand how to check and evaluate chest health in children with cerebral palsy in meaningful ways.
This study is funded by National Institute of Health and Care Research and will form part of a PhD study for Mrs. Rachel Knight Lozano. The results may be published as an academic paper or presented at a conference. You will not be identified in any reports, presentations, or publications. You can also receive a summary of the findings in your preferred language.
 
Do I have to take part?
It is up to you to decide whether to take part. If you do choose to take part, you will need to complete the online consent form. 
 
How do I withdraw from the study?
You can leave the study at any point before, during the conversation and up until 2 weeks after the conversation has taken place. You do not have to give a reason. Leaving the study will not affect you. We will not keep the information from your CHESTI-Conversation unless you are happy for us to do so. 
 
What are the possible benefits of taking part?
You will not directly benefit from the study. However, some people find taking part in research rewarding. Additionally, hearing from young people who have personal experience with chest health and cerebral palsy will make the findings meaningful and relevant. Your input will help improve healthcare for others in the future. As a thank you, we will reimburse your time at the value of a £50 voucher. This will be sent to your contact email.
 
Are there any possible disadvantages or risks of taking part?
There are no physical risks associated with participation in this study. During the conversation, the researcher may ask you to refer back to a time when you had a chest illness. If this makes you feel uncomfortable, you can choose not to answer these questions. We will also offer guidance for support after the conversation has taken place. 
 
How will my data be protected?
Data confidentiality is very important in this study. The chief investigator and lead researcher will need to know your contact details, to arrange your CHESTI-Conversation. Your personal details will not be used for any other purpose without your written permission, and no one outside the project will be allowed to access your information.   
Your CHESTI-conversation will be audio recorded. This recording will only be used by the research team to ensure we document your responses correctly after the conversation. You can also check that your responses have been recorded correctly. Recordings will be destroyed once the conversation has been documented and checked. They will not be used for any other purpose without your written permission, and no one outside the project will be allowed to access the original recordings.  
All other information we collect from you will be made anonymous. This means your name won’t be used in any extracts of your conversation, final reports, or publications. We will use a unique code to identify and store your data. This will be stored separate to your personal details. 
 
Limits to confidentiality: confidentiality will be maintained as far as it is possible unless you tell us something which implies that you or someone you mention might be in significant danger of harm and unable to act for themselves; in this case, we may have to inform the relevant agencies of this, but we would discuss this with you first. 
 
How will my data be stored?
All information will be collected digitally and stored securely in a password-protected file on OneDrive. It will only be accessed on university-owned computers with password protection. Only the research team and approved university staff can access the information. Your data may also be stored indefinitely on external data repositories (e.g., the UK Data Archive) and be further processed for archiving purposes in the public interest or for historical, scientific, or statistical purposes. It may also move with the researcher who collected your data to another institution in the future.
According to the university’s rules on research ethics, all records will be kept safe for at least 10 years after the study ends. For more information about how the University of Plymouth will store and protect your data, please read Additional Information below.  
 
Additional Information 
The University of Plymouth sponsors this study based in the United Kingdom. We will use information from you to undertake this study and act as the data controller. This means that we are responsible for looking after your information and using it properly. Your rights to access, change or move your information are limited, as we need to manage your data in specific ways for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. We will use the minimum personally identifiable information to safeguard your rights. 
The legal basis used to process special category personal data (e.g., data that reveals the racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership, health, sex life or sexual orientation, genetic or biometric data) will be for scientific and historical research or statistical purposes. To request a copy of the data held about you, please get in touch with dpo@plymouth.ac.uk.
If you have a general question about how the University uses your personal information, wish to exercise any of your rights, or complain about how you believe your data is being processed, don’t hesitate to contact the University’s Data Protection Officer: dpo@plymouth.ac.uk.
 
Links to additional information
 
Who has reviewed this study?
This study has been reviewed and approved by the University of Plymouth, Faculty of Health Research Ethics and Integrity committee, application number 5116. 
 
Participation in future research
If you want to take part in future research for this project, you can choose to keep your contact details with the research team. These details will be stored in a password-protected file on OneDrive and accessed using password-protected university computers. A member of the research team will contact you about future research studies related to this project. Agreeing to be contacted does not mean you have to participate in future research.
 
What if I have a question or complaint?
If you have any questions regarding this study, please get in touch with the chief investigator Professor Jos Latour at Jos.latour@plymouth.ac.uk.  
If you have any concerns or complaints about this study's ethical conduct, please contact the Research Administrator, Faculty of Health Ethics and Integrity Committee, University of Plymouth, Level 2 Marine Building, Drake Circus, Plymouth, Devon, PL4 8AA 
Thank you for taking the time to read this information. If you have questions, or would like to take part, you can call 07972702839, email us at Rachel.knightlozano@plymouth.ac.uk. If you are happy to participate in this study, please fill in the expression of interest form.

Information for parents and carers
We invite you to take part in our research study, CHESTI-Conversations. This study will take place between September 2024 and June 2025. Before you decide to take part, we want to explain why we are doing this research and what it involves. Please read the information below. It has important details about the study. You can talk to other people about the study. You can also contact the lead researcher on Rachel.knightlozano@plymouth.ac.uk or 07972702839 if:
  • you would like access to this information in another format or language
  • you would like one of our team to go through this information with you
  • you have any questions about the study.
 
What is the research about?
Chest health refers to how well a person can breathe, cough, and clear their lungs. Children and young people with cerebral palsy may experience chest health problems, like noisy breathing, a rattly chest, a weak cough or difficulty clearing phlegm. These problems often lead to frequent chest infections and is the main reason they need antibiotics and hospital care.
Measuring chest health can help us check for changes early, make quick treatment decisions, and decide which approaches work best. Yet, measures such as “breathing out quickly through a tube”, might not work well for many children and young people with cerebral palsy. So, it's unclear how to best measure their chest health.
This study aims to find out what is important to measure in chest health. Importantly, we want to understand this through the views of parents, carers, their child or young person with cerebral palsy and professionals that work closely with these children. 
 
Why have I been invited?
If you care for a child with cerebral palsy, who has had chest health issues, we want to hear your views. Your personal experience and knowledge are important to make the study results meaningful and relevant. You may care for a child who is:
  • aged between 1-18 years old 
  • has cerebral palsy
  • has experienced a chest health issue such as noisy breathing, a rattly chest, a weak cough or difficulty clearing phlegm. 
 
What will I be asked to do?
You will be invited to take part in an online conversation on Zoom, in your preferred language. This will take between 30-45 minutes, depending on how much you would like to tell us. You only have to answer the questions you feel comfortable with. You can also ask the researcher questions, before, during and after the conversation. 
 
What about my child or young person’s views?
Where possible, it is also very important to give your child or young person with cerebral palsy, a chance to share their views.
 
If your child is between 6-15 years old, and would like to share their views, you can arrange a separate time for your child to take part. You will need to give consent on their behalf and be present during their online conversation. Your child can also give their own agreement if they understand the research.
 
If your child is older than 15 years, and would like to share their views, they can take part in their own online conversation as a young person (aged 16-18years). They need to understand the research and give their own consent.
 
What will my information be used for? 
Your findings will help us understand how to check and evaluate chest health in children with cerebral palsy in meaningful ways.
 
This study is funded by National Institute of Health and Care Research and will form part of a PhD study for Mrs. Rachel Knight Lozano. The results may be published as an academic paper or presented at a conference. You will not be identified in any reports, presentations, or publications. You can also receive a summary of the findings in your preferred language.
 
Do I have to take part?
It is up to you to decide whether to take part. If you do choose to take part, you will need to complete the online consent form on the next page.  
 
How do I withdraw from the study?
You can leave the study at any point before, during the conversation and up until 2 weeks after the conversation has taken place. You do not have to give a reason. Leaving the study will not affect you or your child. We will not keep the information from your CHESTI-Conversation unless you are happy for us to do so. 
 
What are the possible benefits of taking part?
You will not directly benefit from the study. However, some people find taking part in research rewarding. Additionally, hearing from parent/carers and their child, who have personal experience with chest health and cerebral palsy will make the findings meaningful and relevant. Your input will help improve healthcare and research practices for others in the future. As a thank you, we will reimburse your time at the value of a £50 voucher. This will be sent to your contact email.
 
Are there any possible disadvantages or risks of taking part?
There are no physical risks associated with participation in this study. During the conversation, the researcher may ask you to refer back to a time when someone you know had a chest illness. If this makes you feel uncomfortable, you can choose not to answer these questions. We will also offer guidance for support after the conversation has taken place. 
 
How will my data be protected?
Data confidentiality is very important in this study. The chief investigator and lead researcher will need to know your contact details, to arrange your CHESTI-Conversation. Your personal details will not be used for any other purpose without your written permission, and no one outside the project will be allowed to access your information.     
Your CHESTI-conversation will be audio recorded. This recording will only be used by the research team to ensure we document your responses correctly after the conversation. You can also check that your responses have been recorded correctly. Recordings will be destroyed once the conversation has been documented and checked. They will not be used for any other purpose without your written permission, and no one outside the project will be allowed to access the original recordings.  
All other information we collect from you will be made anonymous. This means your name won’t be used in any extracts of your conversation, final reports, or publications. We will use a unique code to identify and store your data. This will be stored separate to your personal details. 
 
Limits to confidentiality: confidentiality will be maintained as far as it is possible unless you tell us something which implies that you or someone you mention might be in significant danger of harm and unable to act for themselves; in this case, we may have to inform the relevant agencies of this, but we would discuss this with you first. 
 
How will my data be stored?
All information will be collected digitally and stored securely in a password-protected file on OneDrive. It will only be accessed on university-owned computers with password protection. Only the research team and approved university staff can access the information. Your data may also be stored indefinitely on external data repositories (e.g., the UK Data Archive) and be further processed for archiving purposes in the public interest or for historical, scientific, or statistical purposes. It may also move with the researcher who collected your data to another institution in the future.
According to the university’s rules on research ethics, all records will be kept safe for at least 10 years after the study ends. For more information about how the University of Plymouth will store and protect your data, please read Additional Information below.  
 
Additional Information 
The University of Plymouth sponsors this study based in the United Kingdom. We will use information from you to undertake this study and act as the data controller. This means that we are responsible for looking after your information and using it properly. Your rights to access, change or move your information are limited, as we need to manage your data in specific ways for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. We will use the minimum personally identifiable information to safeguard your rights. 
The legal basis used to process special category personal data (e.g., data that reveals the racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership, health, sex life or sexual orientation, genetic or biometric data) will be for scientific and historical research or statistical purposes. To request a copy of the data held about you, please get in touch with dpo@plymouth.ac.uk.
If you have a general question about how the University uses your personal information, wish to exercise any of your rights, or complain about how you believe your data is being processed, don’t hesitate to contact the University’s Data Protection Officer: dpo@plymouth.ac.uk.
 
Links to additional information
 
Who has reviewed this study?
This study has been reviewed and approved by the University of Plymouth, Faculty of Health Research Ethics and Integrity committee, application number 5116. 
 
Participation in future research
If you want to take part in future research for this project, you can choose to keep your contact details with the research team. These details will be stored in a password-protected file on OneDrive and accessed using password-protected university computers. A member of the research team will contact you about future research studies related to this project. Agreeing to be contacted does not mean you have to participate in future research.
 
What if I have a question or complaint?
If you have any questions regarding this study, please get in touch with the chief investigator Professor Jos Latour at Jos.latour@plymouth.ac.uk.  
If you have any concerns or complaints about this study's ethical conduct, please contact the Research Administrator, Faculty of Health Ethics and Integrity Committee, University of Plymouth, Level 2 Marine Building, Drake Circus, Plymouth, Devon, PL4 8AA 
Thank you for taking the time to read this information. If you have questions, or would like to take part, you can call 07972702839, email us at Rachel.knightlozano@plymouth.ac.uk. If you are happy to participate in this study, please fill in the expression of interest form.

Information for professionals
We invite you to take part in our research study, CHESTI-Conversations. This study will take place between September 2024 and June 2025. Before you decide to take part, we want to explain why we are doing this research and what it involves. Please read the information below. It has important details about the study. You can talk to other people about the study. You can also contact the lead researcher on Rachel.knightlozano@plymouth.ac.uk or 07972702839 if:
  • you would like access to this information in another format or language
  • you would like one of our team to go through this information with you
  • you have any questions about the study.
 
What is the research about?
Chest health refers to how well a person can breathe, cough, and clear their lungs. Children and young people with cerebral palsy may experience chest health problems, like noisy breathing, a rattly chest, a weak cough or difficulty clearing phlegm. These problems often lead to frequent chest infections and is the main reason they need antibiotics and hospital care.
Measuring chest health can help us check for changes early, make quick treatment decisions, and decide which approaches work best. Yet, measures such as “breathing out quickly through a tube”, might not work well for many children and young people with cerebral palsy. So, it's unclear how to best measure their chest health.
This study aims to find out what is important to measure in chest health. Importantly, we want to understand this through the views of parents, carers, their child or young person with cerebral palsy and professionals that work closely with these children. 
 
Why have I been invited?
If you are a health, social or educational professional working with children with cerebral palsy, we want to hear your views. you may have observed, assessed or treated chest health problems in this population, offering a unique and valuable perspective.
Ideally, you will have at least 6 months of experience working with children and/or young people with cerebral palsy and chest health issues, within the community or primary care setting. 
 
What will I be asked to do?
You will be invited to take part in an online conversation on Zoom, in your preferred language. This will take between 30-45 minutes, depending on how much you would like to tell us. You only have to answer the questions you feel comfortable with. You can also ask the researcher questions, before, during and after the conversation. 
 
What will my information be used for? 
Your findings will help us understand how to check and evaluate chest health in children with cerebral palsy in meaningful ways.
This study is funded by National Institute of Health and Care Research and will form part of a PhD study for Mrs. Rachel Knight Lozano. The results may be published as an academic paper or presented at a conference. You will not be identified in any reports, presentations, or publications. You can also receive a summary of the findings in your preferred language.
 
Do I have to take part?
It is up to you to decide whether to take part. If you do choose to take part, you will need to complete the online consent form on the next page.  
 
How do I withdraw from the study?
You can leave the study at any point before, during the conversation and up until 2 weeks after the conversation has taken place. You do not have to give a reason. Leaving the study will not affect you. We will not keep the information from your CHESTI-Conversation unless you are happy for us to do so. 
 
What are the possible benefits of taking part?
You will not directly benefit from the study. However, some people find taking part in research rewarding. Additionally, hearing from professionals with experience in chest health and cerebral palsy will make the findings meaningful and relevant. Your input will help improve healthcare and research practices for others in the future. You will have the option to be reimbursed for your time, at the value of a £50 voucher. This will be sent via your contact email. Please note that NHS emails will not be accepted. 
 
Are there any possible disadvantages or risks of taking part?
There are no physical risks associated with participation in this study. During the conversation, the researcher may ask you to refer back to a time when someone you know had a chest illness. If this makes you feel uncomfortable, you can choose not to answer these questions. We will also offer guidance for support after the conversation has taken place. 
 
How will my data be protected?
Data confidentiality is very important in this study. The chief investigator and lead researcher will need to know your contact details, to arrange your CHESTI-Conversation. Your personal details will not be used for any other purpose without your written permission, and no one outside the project will be allowed to access your information.   
Your CHESTI-conversation will be audio recorded. This recording will only be used by the research team to ensure we document your responses correctly after the conversation. You can also check that your responses have been recorded correctly. Recordings will be destroyed once the conversation has been documented and checked. They will not be used for any other purpose without your written permission, and no one outside the project will be allowed to access the original recordings.  
All other information we collect from you will be made anonymous. This means your name won’t be used in any extracts of your conversation, final reports, or publications. We will use a unique code to identify and store your data. This will be stored separate to your personal details. 
 
Limits to confidentiality: confidentiality will be maintained as far as it is possible unless you tell us something which implies that you or someone you mention might be in significant danger of harm and unable to act for themselves; in this case, we may have to inform the relevant agencies of this, but we would discuss this with you first. 
 
How will my data be stored?
All information will be collected digitally and stored securely in a password-protected file on OneDrive. It will only be accessed on university-owned computers with password protection. Only the research team and approved university staff can access the information. Your data may also be stored indefinitely on external data repositories (e.g., the UK Data Archive) and be further processed for archiving purposes in the public interest or for historical, scientific, or statistical purposes. It may also move with the researcher who collected your data to another institution in the future.
According to the university’s rules on research ethics, all records will be kept safe for at least 10 years after the study ends. For more information about how the University of Plymouth will store and protect your data, please read Additional Information below.  
 
Additional Information 
The University of Plymouth sponsors this study based in the United Kingdom. We will use information from you to undertake this study and act as the data controller. This means that we are responsible for looking after your information and using it properly. Your rights to access, change or move your information are limited, as we need to manage your data in specific ways for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. We will use the minimum personally identifiable information to safeguard your rights. 
The legal basis used to process special category personal data (e.g., data that reveals the racial or ethnic origin, political opinions, religious or philosophical beliefs, trade union membership, health, sex life or sexual orientation, genetic or biometric data) will be for scientific and historical research or statistical purposes. To request a copy of the data held about you, please get in touch with dpo@plymouth.ac.uk.
If you have a general question about how the University uses your personal information, wish to exercise any of your rights, or complain about how you believe your data is being processed, don’t hesitate to contact the University’s Data Protection Officer: dpo@plymouth.ac.uk.
 
Links to additional information
 
Who has reviewed this study?
This study has been reviewed and approved by the University of Plymouth, Faculty of Health Research Ethics and Integrity committee, application number 5116. 
 
Participation in future research
If you want to take part in future research for this project, you can choose to keep your contact details with the research team. These details will be stored in a password-protected file on OneDrive and accessed using password-protected university computers. A member of the research team will contact you about future research studies related to this project. Agreeing to be contacted does not mean you have to participate in future research.
 
What if I have a question or complaint?
If you have any questions regarding this study, please get in touch with the chief investigator Professor Jos Latour at Jos.latour@plymouth.ac.uk.  
If you have any concerns or complaints about this study's ethical conduct, please contact the Research Administrator, Faculty of Health Ethics and Integrity Committee, University of Plymouth, Level 2 Marine Building, Drake Circus, Plymouth, Devon, PL4 8AA 
Thank you for taking the time to read this information. If you have questions, or would like to take part, you can call 07972702839, email us at Rachel.knightlozano@plymouth.ac.uk. If you are happy to participate in this study, please fill in the expression of interest form.