OPEN RESEARCH STUDY
C-POS Questionnaire Study
Children's physical health
The project aims to help test a questionnaire developed for children and young people (CYP) who have life limiting/life threatening conditions (LLC/LTC) 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.
Children and young people aged at least 5 years old and under 18 years old who are living with a LLC/LTC
Parents/carers: responsible for the primary care needs of a CYP of any age who is living with a LLC/LTC.
Key HSCPs: responsible for treating CYP who have participated in the questionnaire or, where CYP cannot participate, their participating parents/carers. CYP or parent/carer proxy participants must give explicit consent for their key HSCP to be invited to participate.
Children under 5 years old and young people aged ≥18 years old unable to understand English, unable to communicate any views or wishes via their parent/carer, unable to read the C-POS questions or unable to understand the questions if they are read aloud, deemed clinically unable to give assent92, 93 . Those who do not wish to participate.
What is involved?
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.
Interested in taking part?
Email the team to find out more: email@example.com