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Children’s Palliative Care Outcome Scale (C-POS) Questionnaire Study

We would like to invite you/your child to take part in our C-POS Questionnaire Study. Joining the study is entirely up to you and/or your child. Before you decide we would like you to understand why the research is being done and what it would involve for you.

The project aims to help test a questionnaire developed for children and young people who are unwell and their parents/carers. The questionnaire assesses the concerns of children and young people with a serious condition and those of their parents/carers. It is intended to ensure that health professionals ask about and address the things that matter to children and young people and their families.

If you/your child choose to take part, a survey will be sent for completion either by post or online, depending on your preference. The survey will ask your child and/or you about physical symptoms and feelings. Approximately 1-3 weeks later, another short survey will be sent for completion. As part of these surveys, we will also ask your permission to contact your child’s key health care worker for them to complete a version of the questionnaire. To recognise your participation, your child and/or you will receive £10 vouchers after completing each survey.

If you are interested in finding out more please tell your key health or social care professional and the research team will be in touch to provide further information.

If you have any questions please contact:

Linda Maynard – linda.maynard@each.org.uk
Cheryl Norman – cheryl.norman@each.org.uk

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