Share your experiences of children’s cancer or tumour care

Project title: Under 16 Cancer Patient Experience Survey.
Lead researcher: Caroline Hancock at Picker, on behalf of NHS England.

Who is organising the research?

The research is being organised by NHS England, an organisation that leads the National Health Service (NHS) in England. For more information, please visit www.england.nhs.uk/.

Contact details

If you have any questions about the research, before or after the cognitive interview, please get in touch with the following contacts at Picker:

• To let us know if you would like to take part and to check your eligibility, please complete our short online survey here.
• Or call Caroline, Roisin or Bernardine at Picker on +44 (0) 800 197 5273;
• Or email us at Under16CancerSurvey@PickerEurope.ac.uk stating ‘children’s cancer and tumour survey interviews’ in your email.

What are we doing?

Picker, an independent health and social care research charity, and NHS England have developed an Under 16 Cancer Patient Experience Survey to understand and improve experiences of children’s cancer and tumour care in England.

We are testing the questionnaire to ensure that it makes sense and is understood by children and their parents/carers. We would like to test and improve the survey ahead of it running again early in 2024.

We are looking for children who have received a diagnosis of cancer (a malignant tumour) or a non-malignant tumour of the brain, other central nervous system or an intracranial tumour to take part. We are also asking parents and carers to take part.

You can volunteer if:

• You are a parent/carer of a child aged under 8 years who is either currently undergoing treatment or has received care for cancer or a tumour in England in the last 2 years within the NHS.
• You are 8-16 years old and have received cancer or tumour care or treatment in the last 2 years. Parents/carers will be asked to complete the ‘parent’ section of this questionnaire if they are available to do so.

You and/or your child will speak to a researcher from Picker to talk through the survey questions. Some questions are for the child to complete and some for the parent. Sessions will be conducted via video call on your computer or phone, over the telephone, or face to face (based on your preference). The interview would last no more than one hour.

At the end of the interview, a thank you of a £60 Amazon or ‘Love2Shop’ voucher will be given per interview. Please note that we are only able to give one voucher per interview (so for interviews with the parent and child together, only one voucher will be given).

Do we have to take part?

• No – participation is voluntary; it is up to you and your child whether you take part.
• You or your child can decide not to take part or withdraw at any time – even after the interview has started, without giving a reason.
• If your child takes part and you would like to stay with your child during the interview, you are more than welcome to. However, please also allow your child to express their views about their care so that we can collect the views and experiences of children.
• Whether or not you decide to take part will not affect the care or support your child receives now or in the future in any way.
• It does not matter if you have answered the Under 16 Cancer Patient Experience Survey previously – you can still take part.

Would my/our participation in this study be kept confidential?

• Yes – what you and/or your child says will be kept entirely confidential. Care providers will not know who takes part.
• No identifying information (e.g. your or your child’s name, or the names of healthcare staff) will be recorded or shared with anyone who provides your child’s care.
• We will only ever report the views of you and your child anonymously.
• You will be asked to sign and complete a consent form on behalf of your child that will be used only by researchers to confirm that you and/or your child agree to take part.
• Yours and your child’s personal information will not be shared with anyone unless required by law, where there is a clear overriding public interest, or if something you or your child says indicates that you or your child are at risk of immediate harm.

What will happen to the information that my child or I share?

The information that you and your child share will be used to test and improve a cancer and tumour patient experience questionnaire for children and parents. The survey will be used nationally by NHS England to understand and improve patient and parent/carer experiences of children’s cancer and tumour care. Please note that the comments you and/or your child provide will be looked at in full by the researchers analysing the data. Any information that could identify you will be removed before publishing any of your feedback.

NHS England and Picker comply with the UK General Data Protection Regulation (UK GDPR). Picker also complies with the Market Research Society’s (MRS) Code of Conduct by maintaining certifications from the International Standardisation of Organisations. Any sensitive or confidential material is stored securely in line with our data protection policy.

Your personal details (name and contact information) and all completed questionnaires from the interviews will be kept until the survey development is complete, after which they will be securely destroyed. They will only be used for the purpose of this project.

Privacy Notice

NHS England’s Privacy Notice (https://www.england.nhs.uk/contact-us/privacy-notice/) describes how NHS England use personal data and explains how you can contact us and invoke your rights as a data subject. We will process your information in accordance with the requirements of the Data Protection Act 2018.

If you have any questions or concerns, please contact the NHS England Insight & Feedback team: england.insight-queries@nhs.net.

If you have any questions relating to data protection, please contact NHS England Data Protection Office: england.dpo@nhs.net.

You have the right to make a complaint against NHS England regarding data protection issues with the Information Commissioner’s Office: https://ico.org.uk/concerns/.