Do parents find the Red Flags toolkit useful?
Research type
Research Study
Full title
Do parents find the Red Flags toolkit useful? A qualitative exploration of the experiences of parents caring for infants with shunt-dependent circulations.
IRAS ID
237441
Contact name
Julie MacLaren
Contact email
Sponsor organisation
City, University of London
Duration of Study in the UK
0 years, 5 months, 31 days
Research summary
Congenital heart disease (CHD) is the most common birth defect in the UK affecting approximately 5000 babies born every year. Many of these babies undergo life-saving surgery in the immediate days following birth at one of the 11 children's cardiac surgical units across the UK. In recent years, outcomes of children’s heart surgery have greatly improved, but some of these babies are still deteriorating unexpectedly at home after discharge from hospital.
Previous research in this field has led to the development of improved discharge planning and communication between the health care professionals (HCP) and families. It has also led to the implementation of Home Monitoring Programs (HMP) at some of the paediatric cardiology centres in the UK who care for those babies affected by the most severe cases of CHD. These high-risk infants are commonly referred to as ‘fragile’. However, lack of resources has inhibited implementation of such HMPs uniformly across the UK.
The Red Flags toolkit was developed by a team of Cardiac Nurse Specialists working in London in 2015 as part of their HMP for babies born with "half a heart", the most complex form of CHD. It aims to equip parents with the knowledge and skills required to recognize signs of deterioration in their baby when caring for them at home.
There is widespread recognition that HMPs have a positive impact on the outcomes of this cohort of fragile babies, however toolkit specific research is lacking. This project aims to explore participants’ experiences using the Red Flags toolkit leading to development of the toolkit and teaching provided by HCPs to parents of fragile infants. In the longer term it is also hoped that the study findings will provide evidence for, and contribute to, the development of a standardized parental teaching program for future use across the UK.REC name
South Central - Oxford A Research Ethics Committee
REC reference
18/SC/0386
Date of REC Opinion
21 Aug 2018
REC opinion
Further Information Favourable Opinion