Home monitoting in infants with congenital heart disease
Research type
Research Study
Full title
Growth and nutrition of infants with congenital heart disease: development of guidelines and a digital home monitoring programme to support families
IRAS ID
223147
Contact name
Luise V Marino
Contact email
Sponsor organisation
University Hospital Southampton NHS Foundation Trust
Duration of Study in the UK
2 years, 11 months, 31 days
Research summary
Congenital heart disease (CHD) is one of the most common birth problems in infants, found in 9 out of every 1,000 babies born. Some heart problems are serious needing two or more operations, which can be months apart. Weight gain can be poor in some babies with CHD, especially in some of the more the severe heart problems. For lots of different reasons feeding problems are common in many babies with CHD and as a result some of these babies do not gain weight well.
Most babies with heart problems should see a dietitian who is able to help with individual feeding advice, which will best help babies gain weight. Dietitians are also able to help parents with practical information as how to overcome feeding problems. Unfortunately, many babies do not get to see a dietitian and feeding advice given can vary from hospital to hospital. As a result, parents often do not receive adequate information. This lack of support can be very stressful for parents, and increase their worry about their child. Parents often do not feel well supported at home and would like to be able to contact a nurse/dietitian more easily. In this study we would like to test My-Health-Record, as part of a home-monitoring-programme. With the help of their health visitor or community nurse, parents will be asked to weigh their baby weekly, as well as keeping a feed diary. This information will be sent to the dietitian via the home monitoring programme.
We want to see whether using this on line programme can help to better support parents at home. Through the home monitoring programme, we will be able to provide regular individual advice for each baby and information about how best to help support weight gain and overcome feeding problems.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
17/EE/0165
Date of REC Opinion
28 Apr 2017
REC opinion
Unfavourable Opinion