Workstream 3a - Consenting parents
Focus Group
Please note: our focus groups and interviews have now ended and the team are currently working on analysing the data and writing up the findings.
Long-term experiences after children's surgery:
Children's Surgery Outcome Reporting (CSOR) research project aims to build a database to collect information on children's surgery outcomes, including long-term outcomes. These will be reported by parents, guardians, or carers of children who have had a surgery.
For CSOR to be most beneficial, it is important that information is collected from parents about how well they think their child is doing. In workstream 3a, a series of focus groups were run in order to understand two processes that are essential to ensuring that this information can be collected from parents. The first of these was the process through which parents are asked for permission to use their child's information in CSOR and for researchers to contact them at a later date, and the second was the process through which the information about a child's health and wellbeing is actually collected from parents.
Our focus group was made up of parents, guardians, or carers of children who have been diagnosed before the age of 16 with one of the following conditions (regardless of whether the child has had an operation):
- Necrotising enterocolitis (NEC)
- Hirschsprung's disease
- Oesophageal atresia
- Abdominal wall defects (gastroschisis, exomphalos)
- Congenital diaphragmatic hernia (CDH)
- Posterior urethral valves (PUV)
This workstream is a collaboration with Dr Lisa Hinton and Dr Karolina Kuberska from The Healthcare Improvement Studies Institute (THIS Institute) at the University of Cambridge. You may contact the researchers at csor@thisinstitute.cam.ac.uk.
