HELP: an intervention for parents sharing information about leukaemia with their ill child

01 December 2011
Professor Faith Gibson, London South Bank University

The parents of children with leukaemia need a great deal of information and support but this must be available in an easily accessible and convenient format. Professor Gibson 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.

Amount of grant: £251,743  |  Date of award: December 2011

Professor Faith Gibson, London South Bank University / Great Ormond Street Hospital for Children; Dr Nicholas Goulden, Great Ormond Street Hospital for Children.


When a child is diagnosed with leukaemia, their parents are thrown into new and intensely challenging territory. They worry a great deal about how to look after their child and how to talk to them about their illness and their treatment. They need a great deal of information and support but, to avoid being overwhelming, this needs to be available at a time and in a format that is convenient and appropriate.

Professor Gibson has worked with colleagues to develop a web-based information system called HELP - Harmonising Education about Leukaemia for Parents. This system provides easy access to information about acute lymphoblastic leukaemia (ALL). It is designed to supplement the information provided by the child’s doctors and nurses.

It is important to test this new system fully before making it available to families going through diagnosis and treatment. Our funding is enabling refinement and rigorous evaluation of HELP so that it can be made available to all who could benefit.


ALL is the most commonly diagnosed childhood cancer, with up to 400 children diagnosed every year in the UK.

Diagnosis is a difficult time for families. Parents and children alike can be overwhelmed by introductions to different health professionals and a multitude of information in different formats. At a time when they are still reeling from the shock of diagnosis, it can be very difficult to process all this.

Parents see it as their role to communicate information to their child. They also see it as their job to tell their child about their illness because they can judge their child’s level of understanding and previous experience. This requires parents to first understand the complex issues and then to translate them for the child and other family members.

While older children often communicate directly with health professionals, children aged 4 to 11 years rely primarily on their parents as their main source of information.

Parents frequently use the internet to seek information but the quality of information available is very variable. There are no existing, rigorously-tested education or communication interventions currently available for families.

HELP: Harmonising Education about Leukaemia for Parents

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.

In order to better support parents in sharing information about leukaemia with their child, the project team have created HELP, a web-based information system about ALL.

The aims of HELP are:

  1. To help families become aware of the breadth and depth of information available about ALL and make decisions about what information to access and when to access.
  2. To help parents translate complex information about ALL for their children by providing comprehensive explanations of treatment and related issues.
  3. To encourage families to have discussions and ask health professionals questions.
  4. To better equip children, through acquiring knowledge about ALL, to be active participants in their health care and decision-making during treatment.

HELP was designed by clinicians and parents of children with ALL. The preliminary information package focuses on information sharing for parents of children newly diagnosed with ALL (up to six months post-diagnosis), a period that is particularly difficult for families. The package also includes information on complex issues such as relapse and late effects of treatment so that parents can access information about the whole disease process.

Initially, five or six parents will be recruited from Great Ormond Street to help refine the content and delivery of HELP. These parents will take part in a training session and will have two weeks to use the package independently before being asked to comment on aspects of content and delivery and asked for suggestions for improvements.

Health professionals at GOSH will be introduced to the package during this same period; following which feedback from both groups will be use to refine the content and delivery of HELP.

Following this, a formal evaluation will be carried out to assess whether HELP can increase parents’ competence, confidence and knowledge in sharing information about ALL with their child, in comparison to parents receiving standard information.

This evaluation will involve 150 children / families newly diagnosed with ALL in one of five treatment centres (Great Ormond Street, Royal Marsden, Birmingham, Bristol and Southampton).

What difference will this project make?

By providing easily accessible, comprehensive information about all aspects of childhood ALL, HELP will enable parents and children to better cope with the 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 of the frightening situation that they find themselves in.

If HELP proves to be 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.

Read more: Acute lymphoblastic leukaemia (ALL) | Treatments

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