When a child is affected by leukaemia their parents need a great deal of information and support, in an easily accessible and convenient format. Professor Faith has developed a web-based package that provides comprehensive information about leukaemia for parents and children, designed to supplement the information provided by medical and nursing staff.
Our funding is helping to develop a reliable source of web-based information to help parents of children diagnosed with leukaemia to talk to them with confidence about their illness and its treatment.
Evaluating HELP: an intervention for parents sharing information about leukaemia with their child
Professor Faith Gibson
University of Surrey
Guildford, GU2 7XH
2 July 2012
Acute Lymphoblastic Leukaemia (ALL) is the most commonly diagnosed childhood cancer, with up to 400 children diagnosed every year in the UK.
Parents often feel overwhelmed – with concerns, and with information from different sources. While older children frequently talk to their doctors themselves, younger children rely on their parents for information. Parents also see it as their job to tell their child about their illness because they can judge their level of understanding and previous experience – but they worry about how to do it.
To help them understand and translate the complex issues they need lots of information and support. It’s hard to process – and the quality of what’s available on the internet can vary – so it’s important that information comes in an appropriate format, and at the right time.
Professor Faith has worked with colleagues to develop a web-based information system called HELP – Harmonising Education about Leukaemia for Parents, to give parents easy access to reliable information about ALL.
It needs testing before being used by families going through diagnosis and treatment. Our funding is enabling Professor Faith and her team to test and refine HELP so that it can be used by families who need it.
It’s important that we help children, where possible, to be active participants in their health care and decision-making during treatment.
HELP was designed by clinicians and parents of children with ALL. It will provide comprehensive explanations of treatment and related issues, and encourage families to have discussions and ask health professionals questions.
The first package focuses on sharing information with parents of children newly diagnosed with ALL (up to six months post-diagnosis), a particularly difficult period for families. It includes information on complex issues such as relapse and late effects of treatment to help parents understand the whole disease process.
By providing easily accessible, comprehensive information about all aspects of childhood ALL, we aim to enable parents and children to better cope with a diagnosis of ALL and the long months and years of treatment that follow.
We hope that it will help parents to feel less overwhelmed by what is happening to them and more in control.
If HELP proves effective, it can be made available nationally to all families affected by a diagnosis of childhood ALL. The next step would then be to develop similar systems for other types of childhood cancer.
The team at Great Ormond Street Hospital treats one in 10 of the children diagnosed with cancer in the UK. Professor Faith Gibson, who has a background in children’s nursing, is a Clinical Professor of Children and Young People’s Cancer Care, a joint appointment between GOSH and London South Bank University.
Dr Nick Goulden, the co-chief investigator, is a consultant paediatric haematologist at GOSH, one of the leaders of the current national ALL trial.
Five or six parents will be also recruited from GOSH to help refine the content and delivery of HELP. After training, they’ll have two weeks to use the package independently before commenting and suggesting improvements.
At the same time, health professionals at GOSH will be introduced to the package, and feedback from both groups will be used to refine it.
The project team will all test HELP with 150 newly diagnosed children and their families, to see whether it can increase parents’ competence, confidence and knowledge in sharing information about ALL with their child.